The HFEA guide - Human Fertilisation and Embryology Authority
The HFEA guide - Human Fertilisation and Embryology Authority
The HFEA guide - Human Fertilisation and Embryology Authority
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<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Fertility mattersIT TAKES JUST ONE SPERM AND ONE EGG TO CREATE A NEW LIFE, BUT THERE’SMORE TO FERTILITY THAN THAT. WE LOOK AT THE MIRACLE OF MAKING BABIESBefore we start to look at infertility, it helps ifyou know something about fertility - what itmeans, how it works <strong>and</strong> how babies arecreated. <strong>The</strong> exact moment of fertilisation iswhen a woman’s egg <strong>and</strong> a man’s sperm fuseto form a single cell. But for this to happensuccessfully, certain things must be in place.Your hormones, which are your body’s chemicalmessengers, must be balanced <strong>and</strong> the bodilysystems that produce eggs <strong>and</strong> sperm mustbe working at optimum levels. In addition,intercourse must take place around the time ofovulation when an egg has been released fromthe ovary.Eggs <strong>and</strong> spermFOR WOMENWe are all born with a certainnumber of eggs, but you have to waituntil puberty before the hormonesthat kick-start your menstrual cycle<strong>and</strong> ovulation come into play.Successful egg production dependson the interaction of several differenthormones. Part of the brain knownas the hypothalamus starts off theprocess by producinggonadotrophin-releasing hormone(GnRH) which stimulates the smallgl<strong>and</strong> at the base of your brain, thepituitary, to release follicle-stimulatinghormone (FSH). This in turn triggersthe follicles, or egg sacs, to startdeveloping in the ovaries.<strong>The</strong>se follicles produce oestrogenwhich stimulates the pituitary gl<strong>and</strong> toproduce another hormone calledluteinising hormone (LH), the magicbody chemical that triggers ovulationonce a month until you reach themenopause. <strong>The</strong> exact time of themonth for ovulation depends on yourown individual cycle, which in anaverage 28-day cycle will be arounddays 12-15, day one being the firstday of your period.At ovulation, the ripest egg sac burststo release an egg, which starts totravel down the fallopian tube where itmay meet a sperm depending onwhether you have had intercoursewithin the last four days. Eggs live<strong>and</strong> can be fertilised for 12-24 hoursafter being released <strong>and</strong> sperm canstay alive <strong>and</strong> active in your body for12-48 hours, so you don’t have tohave intercourse at the exact momentof ovulation to get pregnant.After ovulation, the remains of theegg sac form a small yellow bodycalled the corpus luteum, which thenstarts producing the hormoneprogesterone whose job is toincrease the blood supply to thelining of your womb, making it theperfect environment for a fertilisedegg. It takes around five days for thefertilised egg to reach the womb <strong>and</strong>by the time it embeds itself in thewomb lining, it will be made up ofaround 150 cells.If the egg isn’t fertilised, or is fertilisedbut doesn’t attach itself to the liningof the womb, it starts to break down,the corpus luteum shrinks <strong>and</strong>progesterone levels plummet. As aresult, the blood vessels in the womblining break up, the walls of thewomb contract <strong>and</strong> you have aperiod, which is in fact the lining ofyour womb (known as theendometrium) being shed.FOR MENAs you reach puberty, the samehormones that control ovulation inwomen stimulate the release oftestosterone, which is responsiblefor producing sperm.Gonadotrophin-releasing hormone,or GnRH, produced by thehypothalamus in the brain, triggersthe release of follicle-stimulatinghormone (FSH) <strong>and</strong> luteinisinghormone (LH) from the pituitary gl<strong>and</strong>.FSH stimulates sperm production inthe testicles while LH stimulates thetesticles to produce testosterone.From the testicles, sperm travel tothe epididymis, a 40ft coiled tube,where they mature, which takesbetween nine <strong>and</strong> ten weeks. <strong>The</strong>ythen travel down another tube, thevas deferens, to the penis ready fortheir next journey.At the point of ejaculation duringintercourse, your penis releases asmany as 300 million sperm intoyour partner’s vagina but only a fewsurvive the hazardous journey throughthe neck of the womb (cervix), uterus<strong>and</strong> fallopian tubes. And ultimatelyonly one will burrow its way intoan egg.4 | For further information visit www.hfea.gov.uk
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Is there a problem?STARTING A FAMILY IS NOT ALWAYS AS SIMPLE AS YOU THINK. READ ON TOFIND OUT WHAT COULD BE STOPPING YOUGetting pregnant can be harder than youthink. If you are having intercourse regularlywithout using contraception you shouldconceive within two years, but in any onemonth your chances of conception are onlyaround 20 to 30 per cent.But first some reassurance – if you are havingproblems conceiving, there is plenty of helpavailable to you, to identify possible causes <strong>and</strong>how to treat them. You are not alone; aroundone in seven couples has difficulty.Infertility is often thought of as a femaleconcern, but in fact in nearly a third of cases(32 per cent) it is because of male problems,such as a low sperm count. Conditions affectingthe woman’s fertility can include damage to thefallopian tubes (16.7 per cent of cases),ovulatory problems (4.9 per cent), endometriosis(3 per cent) <strong>and</strong> conditions affecting the uterus(0.3 per cent). Sometimes it can be acombination of factors that account for infertility(17 per cent of cases) <strong>and</strong> sometimes there issimply no identifiable reason (18.7 per cent).Did you know?In every 100 couples:20 will have conceivedwithin one month;75 will have conceivedwithin six months;90 will have conceivedwithin a year <strong>and</strong>95 will have conceivedwithin two years.What can go wrong?FOR MENSometimes a man does not produceenough sperm (known as a lowsperm count), or the sperm are not ofa sufficiently high quality to fertilisethe egg. It is also possible that thereare problems with the tubes thatcarry sperm. If a man finds it difficultto get an erection, or has troubleejaculating, sperm may not reach hispartner’s vagina.FOR WOMENSometimes a woman’s ovaries do notrelease eggs, or the fallopian tubescan be blocked or damaged, whichmeans that eggs are not carried fromthe ovaries to the womb. This canalso prevent a fertilised egg fromreaching the womb, or preventsperm from reaching <strong>and</strong> fertilisingone of the eggs.<strong>The</strong>re can also be problems with thewomb lining, which mean that afertilised egg is prevented fromimplanting successfully. <strong>The</strong>re may notbe enough lubricating mucus from theneck of the womb, the consistencyof the mucus could be too thick or itcould affect the ability of the sperm toswim towards an egg.6 | For further information visit www.hfea.gov.uk
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Counting the costWHEN ALL YOU WANT IS A BABY NO PRICE CAN SEEM TOO HIGH, BUT BEFORESTARTING TREATMENT YOU DO NEED TO THINK ABOUT THE FINANCIAL SIDEYou can either have NHS-funded treatment or go privately.<strong>The</strong> treatment won’t necessarily be any better in the privatesector, but you can probably start treatment more quickly,although there may still be waiting lists for treatments suchas egg donation.NHS-fundedtreatmentProvision of NHS-funded treatment canstill vary across the UK but the NHS aimsto offer women between the ages of 23<strong>and</strong> 39 at least one free cycle of IVF,assuming you meet the eligibility criteria.Some criteria are set out in the NationalInstitute for Clinical Excellence (NICE)fertility <strong>guide</strong>line (see www.nice.org.uk)<strong>and</strong> others are determined locally, suchas the treatment of couples where onepartner already has a child. <strong>The</strong> NICE<strong>guide</strong>line applies to Engl<strong>and</strong> <strong>and</strong> Walesonly - Scotl<strong>and</strong> <strong>and</strong> Northern Irel<strong>and</strong>have different criteria. For the most up todate information, talk to your GP.NHS treatment may be available at yourlocal hospital or a private clinic if yourPrimary Care Trust or Health Board hasa contract with them. Waiting lists vary.Unless you are exempt, you will have topay prescription charges for drugs.Possible restrictionsIf initial tests show up no identifiablecause for your infertility you may beoffered tests <strong>and</strong> other treatments,such as fertility drugs <strong>and</strong> intrauterineinsemination, before being offered IVF.Women must be under 40 <strong>and</strong>, afterclinical assessment, be thought tohave a good chance of respondingpositively to treatment. For example,they should not be coming up to themenopause.<strong>The</strong>re may be criteria relating toexisting children.<strong>The</strong> Choice of Referral scheme,which came into effect from1 January 2006, gives most patientssome choice of where they are seenwhen they are first referred by theirGP for an outpatient appointment.This will include couples who arebeing referred to a specialist for teststo determine the cause of infertility.However, patients’ right to chooseunder the scheme does not extendbeyond the first outpatient referral.Are youeligible?To find out if you are eligible forNHS funding, the first person tospeak to is your GP, as you willusually need a referral from them.Alternatively, you can contact yourPrimary Care Trust (Engl<strong>and</strong>), LocalHealth Board (Wales), Health Board(Scotl<strong>and</strong>) or Health <strong>and</strong> SocialServices Board (Northern Irel<strong>and</strong>)direct, <strong>and</strong> ask for details about theirfunding policy, <strong>and</strong> who is eligible.Going privateIn theory, anyone with the means canhave private treatment, but individualclinics still have rules about whom theywill <strong>and</strong> won’t treat. We recommend youask the clinic about their eligibility criteriaearly on.So what’s involved if you go privately?You pay for your drugs <strong>and</strong> treatment ata private unit of your choice <strong>and</strong> you getto choose your consultant. Treatmentprices can vary widely from clinic to clinicdepending on what tests <strong>and</strong> treatmentyou are offered. Treatment costs alsovary significantly according to anindividual’s medical circumstances. Asingle attempt at donor insemination cantypically cost between £500 <strong>and</strong> £1000.A cycle of IVF, including drugs <strong>and</strong>consultations, can typically cost between£4,000 <strong>and</strong> £8,000. This will depend onwhere you live <strong>and</strong> the clinic you choosethough the final cost may be more or lessthan this. If you need ICSI or donor eggsor sperm then your treatment will usuallycost more than st<strong>and</strong>ard IVF.That said, private clinics are in competitionwith each other <strong>and</strong> prices tend to befairly similar. <strong>The</strong> drugs used for IVF areexpensive, so check if they are includedin the overall price. If they aren’t, it’sworth comparing prices from differentsources such as your clinic’s dispensary<strong>and</strong> local pharmacies, as prices can vary.Sometimes they may be available directfrom the pharmaceutical company.Some fertility clinics offer egg-sharingschemes in which women can donateeggs collected from a cycle of IVF toanother woman in return for a reducedprice IVF treatment. <strong>The</strong>y will still have topay for any extra treatment needed.Both NHS <strong>and</strong> private clinics pay a feetowards the costs of being regulatedby the <strong>HFEA</strong>. Regulation is needed toensure the clinics comply with the law<strong>and</strong> that practice is safe <strong>and</strong> appropriate.<strong>The</strong> fee paid by clinics to the <strong>HFEA</strong> isbased on the number of IVF <strong>and</strong> donorinsemination treatments they carry out.We charge the clinic directly <strong>and</strong> someinclude this in their overall fee topatients, as they do for the other costsof running a clinic. Some clinics,however, may pass this cost directly onto you as an additional cost: £104.50 foreach IVF cycle or £52 for each donorinsemination cycle. Do check with yourclinic what their practice is.For more information visitwww.hfea.gov.uk/ForPatients10 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityHow it adds upCosts typically cover:First <strong>and</strong> follow-up consultationappointments for a couple.Simple tests such as hormone tests,ultrasound scans <strong>and</strong> sperm tests.Special tests such ashysterosalpingogram (fallopian tubesx-ray), ultrasound tracking of eggdevelopment, trial embryo transfer<strong>and</strong> genetic tests.Assisted conception treatments,including intrauterine insemination,donor insemination, IVF, ICSI,egg or sperm donation or frozenembryo donation.Freezing <strong>and</strong> storage of sperm<strong>and</strong> embryos.Our story: We were treated on the NHSSara, 34, a civilian in the police force,has polycystic ovary syndrome(PCOS) <strong>and</strong> her husb<strong>and</strong> Kevin, 40,a police officer, has a variable spermcount. After treatment the couple,who live in the Midl<strong>and</strong>s, areexpecting their first baby. Sara tellstheir story:Treatment time‘We were treated on the NHS <strong>and</strong> onlyhad to pay an extra £270 to have ourembryos frozen. We had no problemsgetting NHS treatment as I’m under 38<strong>and</strong> have no children. We couldn’t havehad treatment if we had not been eligiblebecause we were not prepared tobankrupt ourselves for a baby. I tookfertility drugs <strong>and</strong> was offered severalother treatments before being offeredIVF. Our first two attempts failed but onthe third attempt we used ICSI as well<strong>and</strong> I conceived.’Feelings‘We’ve been open right from the start<strong>and</strong> friends <strong>and</strong> family have been verysupportive. Several couples at workhave approached us for help <strong>and</strong> advice.You feel different but we have joined asupport group which has helped.’Our relationship‘On the whole it hasn’t affected ourrelationship. As we have been so openwith everyone else we don’t feel we haveto talk about it with each other all thetime <strong>and</strong> so far we have been alright.’Our tipsFind out what you can about youroptions. We knew little when westarted <strong>and</strong> sometimes I feel we don’tknow very much as there are alwaysnew things coming out. I have tried tolook up things but until you are lyingthere you don’t know what’s going tohappen or how it will affect you.Keep a sense of perspective. At theend of the day it’s not the end of theworld if it doesn’t work.Get support. <strong>The</strong>re’s nothing to beashamed of. Just because you can’tconceive you are not a freak.Our story: <strong>The</strong>re are long waiting lists in our areaHelena, 34, a business managementconsultant, <strong>and</strong> her husb<strong>and</strong> Ian, 34,a surveyor, had private fertilitytreatment. <strong>The</strong>y live in London <strong>and</strong>now have a daughter, Sienna, who isa year old. Helena tells their story:Treatment time‘<strong>The</strong>re are long waiting lists for fertilitytreatment in our area <strong>and</strong> we didn’t meetthe criteria so we chose a private clinic.After monitoring three cycles, which cost£1,200, we were offered IVF. While wewere waiting I conceived naturally butmiscarried. We then tried again, whichcost £3,000, but our eggs <strong>and</strong> sperm didnot fertilise. <strong>The</strong>n we tried IVF with ICSItwice costing £9,000. On the secondattempt I conceived.’Feelings‘I felt incredibly optimistic, although theworst time was after the miscarriage.<strong>The</strong> clinic gave me a huge amount ofconfidence <strong>and</strong> each time we started anew treatment cycle we felt goodbecause we were doing something.Friends <strong>and</strong> family were really supportivebut devastated when it didn’t work.’Our relationship‘Working through the many differenttreatments together <strong>and</strong> all the ups <strong>and</strong>downs that came with them brought uscloser as a couple.’Our tipsChoose your clinic carefully. It’s vitalthat the ‘fit’ between you <strong>and</strong> yourclinic feels right. We looked at a couplebefore settling on the one we went to.Take care of yourself. I decided Iwould try some anti-stress therapiesincluding acupuncture.A positive pregnancy test doesn’tmean you will have a baby. Becauseof my miscarriage I felt really stressedout for the first 12 weeks of mypregnancy half expecting it to besnatched away again.It’s okay to have a bad day. Yourbaby is no different to any other sodon’t feel guilty if you feel tired <strong>and</strong>exasperated with your crying baby.For further information visit www.hfea.gov.uk | 11
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Call the clinicWITH SO MANY ASSISTED CONCEPTION CLINICS, YOU MAY HAVETO SHOP AROUND BEFORE FINDING THE RIGHT ONE FOR YOU<strong>The</strong>re are about 128 <strong>HFEA</strong>-licensed clinicsin the UK so it’s not surprising you may findthe choice overwhelming. It’s worthspending some time exploring all youroptions so that when you do make yourfinal decision you feel comfortable with it.A good starting place is to find out if you areeligible for NHS treatment, or whether you willhave to go privately (see page 10), as this mayaffect your choice of clinic – around a quarterof clinics take private patients only.If you are having NHS-funded treatment,find out if you can have a say in the choiceof clinic (some private clinics take NHS patientsif there is a suitable contract with the relevanthealth authority). If not, ask your GP why youhave been referred to a certain clinic <strong>and</strong> alsoif there will be any costs to you (see page 10for more about costs <strong>and</strong> page 42 for a listof clinics).You can use the <strong>HFEA</strong> website’s interactiveclinic search facility (see <strong>HFEA</strong> ‘Find a clinic’,opposite) to draw up a shortlist of possibleclinics who you can then contact. This will helpyou to compare what each one offers,including prices if you are going privately. Youmight then want to arrange to visit a few soyou can get a feel for the place.Making a final decision can be exhausting <strong>and</strong>confusing, so here are a few pointers to helpyou on your way.Location, location,location<strong>The</strong> first thing to consider is where theclinic is. Getting up in the middle of thenight <strong>and</strong> trekking half way across thecountry to have eggs collected or to givea sperm sample can be stressful, whichis exactly what you don’t want at thisalready anxious time. Taking time offfrom work for consultations <strong>and</strong>treatment may also be tricky. So it maybe worth choosing a clinic that’s withineasy travelling distance.If you do opt for a clinic that is furtheraway you may be able to have certaintreatments carried out at a local hospital(referred to as a satellite or transportcentre).Think aboutHow far away is the clinic from homeor work?How easy is it to get to?Is there public transport or a car park?Are there any treatment arrangementswith a more local hospital?First appearancesDo your homework <strong>and</strong> find out as muchas you can about the clinic. Some mayhave special interests <strong>and</strong> expertise inspecific treatments.You may feel drawn to olderestablishments with a tried <strong>and</strong> testedreputation, but don’t dismiss new clinics,which may offer equally high st<strong>and</strong>ards oftreatment.When making initial enquiries take intoaccount the attitude of the person at theother end of the phone. For example,are they sympathetic to your questions?It is very important that you are made tofeel involved in the decision makingrather than just feeling as if you are on aconveyor belt.Of course you may have doubts as towhether you are making the right choice.One of the best ways to allay them is bytalking to other patients. No one canpossibly say that such <strong>and</strong> such a clinic isthe best one for you but they can sharetheir personal experiences (see page 44).Think aboutWill you see the same doctor ornurse every time?Can you choose between a male <strong>and</strong>a female doctor <strong>and</strong> nurse?What provisions are there for theprotection of your privacy <strong>and</strong> dignityin the clinic?Do the staff sound welcoming <strong>and</strong>proud of their work?Can the clinic put you in touch withother patients?Support linesRest assured, all clinics offering IVF <strong>and</strong>other treatments will give you the chanceto talk over your treatment <strong>and</strong> anyworries you may have with a counsellor.<strong>The</strong>re are usually several different typesof counselling available (see page 14).Think aboutWhat types of counselling or supportgroups does the clinic offer?Are these services free or will we haveto pay extra?Does the clinic offer patientsupport groups?12 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityRules <strong>and</strong>regulationsDoes the clinic have any selection criteriafor patients? For example, do they onlytake couples under a certain age, <strong>and</strong>are single women <strong>and</strong> same sex coupleswelcome? And maybe it has acancellation policy if too many or too feweggs are produced as a result of takingfertility drugs as well as time restrictionson different treatments.Think about<strong>The</strong> length of the waiting time.Any restrictions such as age or sexualorientation.How many cycles of treatment areallowed before trying another orstopping treatment all together.Success rate<strong>The</strong>re’s not a clinic in the world that canpromise you will go home with a babybut it is important not to choose a clinicjust because its success rate looks goodon paper. Success rates, or live birthrates as they are called, are incrediblydifficult to interpret. For example, a clinicthat accepts only younger couples withstraightforward infertility issues will usuallyhave better success rates than a clinicthat takes older couples or couples whoneed more complicated treatment. It’salso worth looking at the clinic’s multiplebirth rate. A high multiple birth rate mayaccount for a clinic’s high live birth rate -but multiple births carry a greater risk toboth mother <strong>and</strong> babies. See the <strong>HFEA</strong>‘Find a clinic’ search, below, to help youevaluate the success rate of a clinic.Think about<strong>The</strong> live birth rate for the type oftreatment you are having.<strong>The</strong> life birth rate for your particularage group.Embryo transferpolicyClinics can replace two embryos ateach IVF attempt, or three if you areaged 40 or over (<strong>and</strong> using your owneggs). Replacing more would increaseyour chance of having a multiplepregnancy, with its associated healthrisks. Some doctors prefer to replaceone embryo to reduce this risk, <strong>and</strong>freeze any remaining embryos to beused in the future, if the treatment isunsuccessful.Think aboutWhat is the rate of multiple birthsfor the clinic, <strong>and</strong> how do you feelabout this?What are the clinic’s criteria forfreezing embryos?YOU ASK…What kind of questionswill the clinic ask about mycircumstances?By law, before you start treatment,your clinic must consider both yourpotential baby’s welfare (including“the need for a father” specificallymentioned in the 1990 <strong>Human</strong><strong>Fertilisation</strong> <strong>and</strong> <strong>Embryology</strong> Act) <strong>and</strong>how the birth may affect any otherchildren you may have. <strong>The</strong>assessment is designed to foresee anycircumstances in which your potentialbaby might experience serious harm.<strong>The</strong> clinic will ask you some questionsabout your medical <strong>and</strong> social history,for example, whether you have hadany contact with social services overthe care of any children you mayalready have. Cases in which seriousharm is likely are very rare, so mostpeople can start treatment withoutdelay. Occasionally, with your consent,a clinic may want to make furtherenquiries to relevant individuals oragencies such as a GP or socialservices. Policies about treating singlewomen, same sex couples <strong>and</strong> olderwomen vary from clinic to clinic. Clinicswill often apply an upper age limit forthe women they will treat, althoughnone is set by the <strong>HFEA</strong> or the law.<strong>The</strong> <strong>HFEA</strong> has recently revised its<strong>guide</strong>lines to clinics on this issue.For more information, seewww.hfea.gov.uk/ForPatients<strong>HFEA</strong> ‘Find a clinic’ searchA good way to find a list of licensed clinics in your area with details of their services <strong>and</strong> success rates is to use the ‘Find a clinic’search on the <strong>HFEA</strong> website (www.hfea.gov.uk)Here’s how it works:1Start2<strong>The</strong>by entering your postcode orregion, your age b<strong>and</strong>, type oftreatment you are considering (if youknow it) <strong>and</strong> whether you are anNHS or private patient. If you don’tknow yet, you can enter both.locator will bring up a list ofclinics that meet your criteria, soyou can see how many people in3Toyour age group have received thattreatment <strong>and</strong> for how many it hasbeen successful. <strong>The</strong> number oftreatments carried out can be agood indicator of the level ofexperience of the clinic.find out more about the clinic,click on the most recent <strong>HFEA</strong>inspection report. Inspections arecarried out at regular intervals <strong>and</strong>the reports will give you the mostup to date information.For further information visit www.hfea.gov.uk | 13
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Talking it overTHE GOING CAN BE TOUGH, BUT THERE IS SOMEONE AT EVERY STAGE TO HELPWe all have times when we need someone to talk towho will really listen. You <strong>and</strong> your partner may befinding it hard to deal with your diagnosis of infertility,feeling unsure about what all the language <strong>and</strong> jargonmean, or wondering how you will ever cope with allthe tests <strong>and</strong> treatment. This is where a counsellorcan help.Friends <strong>and</strong> family may be supportive, but it is oftenuseful to talk about your feelings with someone whodoesn’t know you <strong>and</strong> who will not judge what you sayor are feeling from a subjective point of view. Counsellingcan help you explore your feelings, become clearerabout your situation <strong>and</strong> find new ways of coping.Considering theimplicationsAll <strong>HFEA</strong>-licensed clinics have to offeraccess to implications counsellingbefore you consent to treatment. Thisinvolves a counsellor talking to youabout the treatment you are having orplan to have, so that you underst<strong>and</strong>exactly what it involves <strong>and</strong> how it mightaffect you <strong>and</strong> those close to you - now<strong>and</strong> in the future.This is especially important if you areconsidering treatment with donatedsperm, eggs or embryos or surrogacyarrangements - all of which involvecomplicated issues. You will need time toexplore how you feel, to adjust to thisdifferent way of planning a family, toconsider the legal implications <strong>and</strong> decideif this is going to be the right decision foryou. Spending time with a counsellor canhelp with this <strong>and</strong> enable you to feelbetter prepared for parenthood throughdonation or surrogacy.Facing up tofeelingsIf you need emotional support before,during or after fertility treatment,support counselling is available atmany clinics. You can ask for writteninformation <strong>and</strong> if you need additionalsupport, your clinic will have informationabout other services in your area.This form of counselling is especiallyuseful in helping you to work through theemotions you may experience at specifictimes during treatment, such as when youfirst find out you have fertility problems,when you are waiting for results, if you arefaced with a negative outcome, or if youare both having to come to terms with thefact that there is no further suitabletreatment for you to try.Dealing withthe pastInfertility can throw up all sorts of issues.For example, it can sometimes triggerpainful memories from your past or thetreatment may be making you depressedor anxious. <strong>The</strong>rapeutic counsellingshows you how to work through some ofthese difficult issues to great effect. It canreally help you to deal with the impactthat infertility may be having on your life<strong>and</strong> your relationships with other people.Ask the doctor or specialist fertility nursefor information. If it is not available at yourclinic, they can refer you to anindependent counsellor elsewhere.Making contactYour clinic should provide you with thecontact details of a counsellor. Differentclinics have different costing policies, socheck whether you have to pay extra forcounselling. You may choose to havejust one or two sessions or more, as<strong>and</strong> when you feel you need them.<strong>The</strong>y usually last for an hour <strong>and</strong> youcan expect to see the same counselloreach session.If for any reason you don’t feel happy orcomfortable with your counsellor, talk tothem about what’s worrying you. If youfeel you still can’t communicate, ask tobe referred to another counsellor.WHAT COUNSELLINGCAN GIVE YOU...1<strong>The</strong>2<strong>The</strong>3Help4Support5<strong>The</strong>opportunity to talk freely <strong>and</strong>openly without being judged.chance to explore feelings <strong>and</strong>sensitive issues that are troubling you.in underst<strong>and</strong>ing the factorsthat may be contributing to yourdifficulties.in finding your own solutions<strong>and</strong> new ways of coping.knowledge that what you sharewith your counsellor will be treatedas confidential unless there areexceptional circumstances.For information on counsellingorganisations <strong>and</strong> other forms ofpatient support, see page 44.14 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityYOU ASK…Since we started trying for ababy, sex has become muchless fun. What can we do?Couples with fertility issues often findtheir love life suffers. Intercoursebecomes much more about makinga baby rather than about fun <strong>and</strong>showing your feelings for each other.If you feel this is affecting yourrelationship a skilled counsellor canhelp you to explore the difficultiesas well as working with you toresolve them.My friend has just had a baby<strong>and</strong> I can’t bring myself to tellher that we are finding it hard tostart a family. What can I say?Deciding whether <strong>and</strong> what to tellfamily <strong>and</strong> friends can be hard. Youneed to think about who you aregoing to tell <strong>and</strong> what you are goingto say. If you do decide to confide insomeone it may help to explain tothem exactly how they can supportyou. You may want to talk thisthrough with your counsellor toconsider all the possible issues.<strong>The</strong> expert says...‘We’re based in the IVF Unit <strong>and</strong> see over300 people a year for counselling. Somecome for just one or two sessions whileothers need many more. <strong>The</strong>y may wantto come on their own or as a couple.‘Some of our work involves helpingpeople to talk about their experiences<strong>and</strong> to underst<strong>and</strong> the underlying issueswhich makes it easier for them to findways to cope or sort out problems.‘It’s not surprising that infertility affectsthe rest of people’s lives. It’s pretty hardto face friends with children, or to dealwith talk at work about families or withsomeone going on maternity leave.Within a relationship, too, infertility cancause a huge amount of stress.‘We offer people a safe space wherethey can focus on their problems <strong>and</strong> besupported in finding their own solutions.Often, just sharing feelings with someoneoutside their circle of friends <strong>and</strong>relations brings a sense of relief.‘<strong>The</strong>re are certain key times whichcan be particularly difficult. At the startof a first treatment cycle, people areoften anxious <strong>and</strong> uncertain aboutwhat to expect.‘During treatment they often sayit is an emotional rollercoaster as theywait <strong>and</strong> see if they produce enougheggs, if they fertilise, <strong>and</strong> how manyembryos are created. If people havehad any problems with any of theseissues in a previous treatment it will beespecially stressful.‘<strong>The</strong>n, after the embryos aretransferred there is the long, anxious waitfor results. <strong>The</strong> day of the pregnancy testis usually very tense.‘Many of our patients see counsellingas a useful way of preparing fortreatment – as an extra source ofsupport <strong>and</strong> stress management duringit. It can be especially important forthose faced with a negative pregnancytest or if there are problems with thepregnancy itself.‘A skilled counsellor can play a vitalrole in enabling couples to deal withthe emotional challenges of thesedifficult experiences.’Jennifer HuntSenior Infertility CounsellorHammersmith HospitalOur story: Ask about support or counselling optionsonto IVF on the recommendation of ourconsultant <strong>and</strong> on the fourth attempt Iconceived Adelaide.’worked through it giving each othersupport. In many ways it brought uscloser together.’Caroline, 35, <strong>and</strong> her husb<strong>and</strong>Andrew, 36, a farmer, live nearSevenoaks, <strong>and</strong> have unexplainedinfertility. <strong>The</strong>ir daughter, Adelaide,who is now four, was born after IVF.Caroline tells their story:Treatment time‘I was on Clomid for six months <strong>and</strong>then had three attempts at IUI, none ofwhich was successful. We then wentFeelings‘To start with we felt a bit unsure <strong>and</strong> theidea of having to have IVF took gettingused to. We were hit quite hardemotionally. I thought it was going towork first time so it was a shock when itdidn’t. Those friends <strong>and</strong> family we didtell were extremely supportive. Howeverwe didn’t tell a lot of people because wefelt it was quite private.’Our relationship‘When you are trying for a baby it takesall the spontaneity out of sex so it isquite a strain. We would get quiteexcited when having the embryosreplaced <strong>and</strong> then feel utterlydespondent when it didn’t work. But weOur tipsAsk at your clinic about support orcounselling options. Support isabsolutely vital because infertilitytreatment can be such a solitaryexperience. No one in the waitingroom ever talks to each other.Set up a group if there isn’t one. <strong>The</strong>consultant set up a first meeting of asupport group <strong>and</strong> invited us along.After that a group of us carried onorganising monthly meetings. It wasinvaluable to get together <strong>and</strong> chatwith like-minded people who weregoing through the same thing. Wemade some very good friendsthrough it who we still have today.For further information visit www.hfea.gov.uk | 15
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08At the clinicWHEN AT LAST YOU GET TO THE CLINIC, THE CHOICE OF TREATMENTS ONOFFER CAN BE BEWILDERING. MOST PEOPLE HAVE HEARD OF IVF, BUT THEREARE OTHER TREATMENTS TOO. THIS SECTION WILL TELL YOU MORE ABOUTTHEM, WHAT THEY INVOLVE AND WHETHER THEY COULD BE FOR YOUMany people tell us that they feel a bit sweptalong by the process when they go to a clinic.It’s important to feel that you are getting themost out of your consultations, <strong>and</strong> feelcomfortable asking questions, or taking timeout to think things through. <strong>The</strong>re can be a lotof difficult issues to consider, as this sectionwill show: decisions such as what to do withembryos not used for your treatment, or howto tell your child that they were conceivedusing donated eggs or sperm. Do rememberthat the clinic staff are there to help you makethe right choice for you.Even with underst<strong>and</strong>ing family <strong>and</strong> friends, youcan feel isolated while you are having fertilitytreatment. That’s why, throughout this section,we’ve asked people to share their experience oftreatment with you <strong>and</strong> to offer advice on whatthey learnt.As well as thinking about treatment <strong>and</strong> thesurrounding issues, you’ll also find there’s quitea lot of paperwork involved. This is because theclinic needs to make sure that you underst<strong>and</strong>,<strong>and</strong> agree to, all that is involved in havingtreatment (see opposite).Every patient longs for the moment when apregnancy is confirmed. But some people findthey have been so focused on treatment thatthey don’t feel prepared for the actual pregnancy.<strong>The</strong>re’s more information on what to expect inthis section.Sadly, although treatment is becoming moresuccessful, this is not everyone’s experience.This section also looks at what to do if yourtreatment has not worked.Finally, whatever the outcome of your treatment,we hope that you feel that your clinic has lookedafter you well throughout, both physically <strong>and</strong>emotionally. But if you are unhappy with yourclinic, this section will provide suggestions forhow to make a complaint.16 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityGiving yourconsentAs with most medical procedures,you <strong>and</strong> your partner, if you haveone, will have to give your consentto treatment.You may wonder why there can be somany forms to fill in before treatment caneven start but this is necessary to protectyou <strong>and</strong> any child you may have. Fertilitytreatment is still relatively new <strong>and</strong> thereare many ethical issues to consider.<strong>The</strong> <strong>HFEA</strong> provides clinics with consentforms for different treatment options <strong>and</strong>you <strong>and</strong> your partner will have to sign theones relevant to your circumstances. Foryour consent to st<strong>and</strong>, it must be written<strong>and</strong> it must be current (ie. you have notsubsequently withdrawn it).It is important that you fully underst<strong>and</strong>the implications of the treatment to whichyou are giving your consent. Your clinicwill offer you the opportunity to haveprofessional counselling, which manypeople find helpful. Your clinic must alsoprovide information about the procedures<strong>and</strong> processes involved in your treatment.<strong>The</strong>re is no hurry, so do ask questions<strong>and</strong> make sure you underst<strong>and</strong> this <strong>and</strong>take your time to reflect on it before yousign anything.<strong>The</strong>re are three different typesof consent:1. CONSENT TO:Your fertility treatmentBasically this is no different to theform you have to sign for many othermedical treatments. For example, if youare having IVF you will have to consentto egg retrieval <strong>and</strong> the transfer ofembryos into your womb. Similarly,you will have to give consent if yourtreatment involves donated eggs,sperm or embryo transfer (see 3).2. CONSENT TO:Disclosure of informationYour clinic is not allowed to tell your GPor anyone else about your treatmentunless they have your consent to do so.It is up to you to decide what informationyou allow to be disclosed <strong>and</strong> to whom.3. CONSENT TO:<strong>The</strong> use <strong>and</strong> storage of eggs,sperm <strong>and</strong> /or any embryosproduced from them<strong>The</strong> use could be for your owntreatment, for the treatment of othersif you are donating sperm, eggs orembryos, or for research. Storagerelates to the freezing of sperm, eggsor embryos for future use.As long as your eggs, sperm or embryoshave not already been used in treatmentor research, you can change or withdrawyour consent by getting in touch with theclinic where they are being stored. Yourpartner or, if a donor was used, then thedonor, may also change or withdrawconsent at any time until the eggs,sperm or embryos have been used intreatment. If consent is withdrawn byeither party or a donor, the eggs, spermor embryos may not be kept in storageor used in treatment.You must also state what you would liketo happen to these eggs, sperm orembryos if you were to die or becomementally incapacitated <strong>and</strong> thereforeincapable of changing or withdrawingyour consent.It is important to keep in touch with yourclinic. <strong>The</strong>y will contact you six monthsbefore any eggs, sperm or embryosreach the end of their storage period, soit is vital that you let them know if yourcontact details change. If your storageperiod limit is up, the clinic is obliged bylaw to allow any eggs, sperm orembryos to perish, even if they have notbeen able to trace you first. If they donot comply with this, they risk losingtheir <strong>HFEA</strong> licence.YOU ASK…Can a man be registered as thefather of a child conceived afterhis death?Although rare, there are situations when awoman may want to have a child with herhusb<strong>and</strong> or partner, which is conceivedafter his death. For example, he may havehad sperm stored prior to cancertreatment. A man can be recorded as thefather of a child resulting from fertilitytreatment carried out after his death, aslong as his consent is there in writing.Licence to…Fertility treatment is strictly regulated bylaw to protect you <strong>and</strong> your family. Underthe <strong>Human</strong> <strong>Fertilisation</strong> <strong>and</strong> <strong>Embryology</strong>Act 1990, any treatment which involvesmixing sperm <strong>and</strong> eggs outside the body,or using eggs, sperm or embryos, has tohave an <strong>HFEA</strong> licence.It is illegal to create an embryo outsidethe body or to keep or use an embryowithout an <strong>HFEA</strong> licence.In practice, this means that clinics needan <strong>HFEA</strong> licence to provide:in vitro fertilisation (IVF)donor insemination (DI)intra-cytoplasmic sperm injection(ICSI)intrauterine insemination (IUI) withpartner <strong>and</strong> donor spermgamete intra-fallopian transfer (GIFT)with donor/partner sperm <strong>and</strong> eggsany treatment using donated eggs,sperm or embryossperm, egg <strong>and</strong> embryo freezing<strong>and</strong> storagepre-implantation geneticdiagnosis (PGD)pre-implantation genetic screeningfor aneuploidy (PGS)Clinics carrying out the above treatmentsare regularly inspected by the <strong>HFEA</strong>. Tofind out more about the <strong>HFEA</strong>, how weregulate fertility treatment in the UK, <strong>and</strong>how you can provide feedback on yourexperience of treatment, visitwww.hfea.gov.ukFor more information about embryo storage, see page 36 <strong>and</strong>www.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 17
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Drugs <strong>and</strong> surgeryA COMBINATION OF FERTILITY DRUGS AND SURGERY ARE OFTEN USEDTO KICK-START TREATMENT EITHER BEFORE OR DURING IVFFOR WOMENIf you aren’t ovulating (producing <strong>and</strong>releasing an egg each month) at all, oronly sometimes, fertility drugs - whichtrigger egg production in much the sameway as your body’s own hormones - canhelp. This is known as ovulation induction.You may get pregnant using fertility drugsalone, but they are more often used withother treatments such as intrauterineinsemination (IUI) <strong>and</strong> in vitro fertilisation(IVF). Read on for what to expect.Ovulation-inducing drugsClomiphene citrate, usually knownsimply as Clomid, is the oldest <strong>and</strong>probably the most widely used fertilitydrug. Taken as a pill, it tells your brainthat you are not producing enoughoestrogen, which indirectly stimulatesyour ovaries into producing eggs.What for Straightforward ovulationfailure in women under 40.Possible side effects Hot flushes,mood swings, nausea, breasttenderness, insomnia, increasedurination, heavy periods, spot breakouts,weight gain. Some experts think yourrisk of ovarian cancer may increaseslightly if you take it for more than a year.Pituitary stimulatorsPulsed gonadotrophin-releasinghormone (GnRH), such as Gonadorelin,kick-starts the pituitary gl<strong>and</strong> into action.A small battery-operated pump usuallyworn on your upper arm injects pulsesof the drug directly into yourbloodstream (hence the term ‘pulsed’).This triggers egg production bymimicking your body’s production of ahormone produced by the pituitary.What for Ovulation failure resulting froma lack of the hormone GnRH.Possible side effects Stomach pains,sickness <strong>and</strong> nausea, heavy periods <strong>and</strong>headaches.Ovary-stimulating hormonesDrugs containing follicle-stimulatinghormone (FSH) <strong>and</strong>/or luteinisinghormone (LH) stimulate the ovaries toproduce eggs. <strong>The</strong>se include Gonal-f,Puregon, Menogon, Menopur <strong>and</strong>Merional. <strong>The</strong>y are injected into a muscleor under the skin by your doctor at theclinic, your GP or practice nurse.Alternatively, you may be shown how toinject yourself at home. When the eggsare mature, you are given a singleinjection of the hormone human chorionicgonadotrophin (hCG) to trigger therelease of an egg.What for To stimulate ovulation beforetreatment cycles, or if you havepolycystic ovary syndrome (PCOS) <strong>and</strong>your ovaries are not responding toClomid. <strong>The</strong>y are also used for infertilitycaused by failure of the pituitary gl<strong>and</strong><strong>and</strong> in some cases of male infertility.Possible side effects Over-stimulationof the ovaries, known as ovarian hyperstimulationsyndrome (OHSS, see page24); increased risk of multiple pregnancy(twins, triplets or more) when used forovulation induction, allergic reactions <strong>and</strong>skin reactions.During treatment, your doctor willusually prescribe other drugs for youto take at various times to give themmore control over your treatmentcycle. <strong>The</strong>se may include:Cycle-suppressing drugsDrugs such as Goserelin <strong>and</strong> Burserelincopy the action of natural hormonesthat block the release of the twohormones controlling ovulation: FSH <strong>and</strong>LH. <strong>The</strong>se are known as gonadotrophinreleasinghormone (GnRH) analogues.You take them as a nasal spray or as adaily or monthly injection before, or at thesame time as, fertility drugs.What for To stop the menstrual cycle.Possible side effects Hot flushes,night sweats, headaches, vaginaldryness, mood swings, changes inbreast size, breakouts of spots, acne<strong>and</strong> sore muscles.18 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilitySurgical optionsDrugs that maintain pregnancyProgesterone, for example Cyclogest,Gestone, Crinone or Progynova, can betaken after the injection of the pregnancyhormone, hCG, or on the day embryosare returned to the womb. You takethem as a vaginal suppository, a pill, gelor by injection into the buttock.What for To thicken the lining of thewomb in preparation for nurturing apossible embryo.Possible side effects Nausea,vomiting, swollen breasts.FOR MENDrugs are not so important in thetreatment of male infertility asthey are in female treatment.However they may occasionally beprescribed in certain situations.<strong>The</strong>se may include:Antibiotics to treat infection orinflammationVitamins C <strong>and</strong> E to improve spermmovement, although there is noconvincing evidence that thisimproves the chance of pregnancyGonadotrophin injections or pumpadministration for certain rareconditions in which no sperm isproducedDrugs that close the bladder neckwhen sperm are being ejaculated intothe bladder instead of the penis(retrograde ejaculation)FOR WOMENMy tubes are blockedbecause of chlamydia.I have heard that an operationmight help.Surgery used to be popular when IVF<strong>and</strong> ICSI treatments were lessadvanced <strong>and</strong> available, but anoperation can still help in somecases. Blocked tubes, caused byinflammation <strong>and</strong> scarring as a resultof infections such as chlamydia, forexample. Others include fibroids,endometriosis <strong>and</strong> other conditionsaffecting the womb or tubes.<strong>The</strong>se days, keyhole surgery is mostoften used. Your doctor at the fertilityclinic will be able to advise onwhether surgery is the best route foryou <strong>and</strong> also if it is available on theNHS.I was sterilised two years agoas I thought I didn’t want morechildren. But now I have a newpartner <strong>and</strong> we want to try for ababy. Can my tubes berepaired?You can have an operation to rejointhe ends of the fallopian tubes.Success rates are higher if you weresterilised quite recently <strong>and</strong> if thetubes were clipped rather than tied.Keyhole sterilisation reversal(laparoscopic anastomosis) can alsobe done but is generally lesssuccessful than open surgery.Instead of the 10cm bikini line cutinvolved in traditional sterilisationreversal surgery, the surgeon makesa 1cm cut near your belly buttonthrough which a laparoscope (smalltelescope with camera attached) isinserted to allow the surgeon torejoin the tubes.FOR MENI have had a vasectomy butmy partner <strong>and</strong> I now realise wewould like to have another baby.Is it too late?If you can’t produce any sperm, forexample, you may have had avasectomy or a failed reversal, a smalloperation known as surgical spermretrieval can be carried out to removethe sperm from the epididymis (wheresperm are made) or the testicles.PESA (percutaneous epididymalsperm aspiration) involves guiding asmall needle through the skin into theepididymis to draw out a smallamount of fluid containing sperm.TESE (testicular sperm extraction)uses the same method to remove asmall amount of tissue from thetestes. MESA (microsurgical spermaspiration) uses a small needle toextract relatively mature sperm fromthe epididymis. <strong>The</strong> collected spermcan be used to fertilise the eggs bymeans of ICSI (see page 26).Is treatment for varicocele apossible cure for male infertility?Probably not. Until recently, it wasthought that treating a varicocele(varicose vein of the testicles) in aninfertile man would increase thechance of becoming fertile again.Studies have shown that aftertreatment, the sperm count <strong>and</strong>quality often improve. This wasassumed to increase the chance offertility. However, a recent largeanalysis of studies looking at this issuefound that there was no goodevidence to say that fertility isincreased by treatment. If you areinfertile, your specialist will be able toadvise on current research.YOU ASK…Is the chance of having twins ortriplets higher if you are takingfertility drugs?<strong>The</strong> injected drugs used to stimulateovulation do increase your chances of amultiple pregnancy <strong>and</strong> birth: twins,triplets or more. If you are taking fertilitydrugs with IUI, many doctors will cancela cycle in which you produce a largenumber of follicles (egg sacs) as thisincreases your chances even more.If you have IVF, the risk of a multiplepregnancy is limited by replacing one ortwo embryos.For further information visit www.hfea.gov.uk | 19
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08IcUI: Intrauterine InseminationTHIS IS A RELATIVELY SIMPLE FERTILITY TREATMENTWITH A PROVEN TRACK RECORD OF SUCCESSIntrauterine insemination (IUI)involves inserting sperm intothe womb to coincide withovulation (when an ovaryreleases an egg) to increasethe chances of conception.This treatment can be usedwhere there is unexplainedinfertility, or if ovulationproblems are identified. Sowhat actually happens?Is it for you?<strong>The</strong> clinic may recommendIUI if:your sperm count is low or yoursperm are poor movers (oftenreferred to as havingpoor motility)your sperm are not surviving thejourney through the cervicalmucus (sometimes it can be toothick for the sperm to passthrough) or because there areantibodies present that attackyour spermyou are experiencing impotenceor premature ejaculation.YOU ASK…Does IUI hurt?This treatment is usually fairly painlessalthough you may experience mildcramps similar to period pains.Very occasionally it may be difficult toget the catheter through your cervix,which can be uncomfortable, but yourdoctor should offer you painkillers toease any pain.How are sperm prepared?Sperm are washed to remove the fluidin which they swim (seminal fluid) <strong>and</strong>prepared to select the healthiestspecimens that are likely to be themost fertile. <strong>The</strong> sperm are then placedin the small tube or catheter to beinserted into the womb.What to expectFOR WOMENIf you are not using fertility drugs(known as an unstimulated cycle), IUIis done between day 12 <strong>and</strong> day 15of your monthly cycle - with day onebeing the first day of your period. Youare given blood or urine tests toidentify when you are ovulating, oryou can use an ovulation predictor kit.You may, however, need fertility drugsto stimulate ovulation (a stimulatedcycle), which, if prescribed by yourdoctor, usually come as an injection<strong>and</strong> nasal spray (see page 18). Youreggs are tracked by vaginalultrasound scans as they develop. AsFOR MENsoon as an egg is mature, you aregiven a hormone injection tostimulate the egg’s release.<strong>The</strong> sperm is inserted 36 to 40 hourslater. <strong>The</strong> doctor inserts a speculum(a special instrument that keeps yourvaginal walls apart) into your vaginathrough which they then thread asmall catheter (a soft, flexible tube)into your womb via your cervix.Sperm, which have been previouslyprepared to select the healthiestones, are then inserted through thecatheter. <strong>The</strong> whole process takesjust a few minutes. You may wishto rest for a short time before goinghome - ask your clinic what theyrecommend.You will be asked to produce a sperm sample on the day the treatment takes place.20 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityDonor inseminationDonor insemination is where sperm isplaced into a woman’s reproductivetract at the time of ovulation to achievea pregnancy. This can be carried out ina clinic using IUI.Prior to treatment, all donor sperm willhave been properly screened forinfections such as hepatitis <strong>and</strong> HIV.This means freezing the sperm with aquarantine period of six months. From 5July 2007, fresh sperm, other than yourpartners would need to go through thesame screening process. This is due to achange in the law to improve patientsafety <strong>and</strong> st<strong>and</strong>ards.<strong>The</strong> expert says...See the section on ‘Using donatedsperm, eggs <strong>and</strong> embryos’ for moreinformation.‘IUI is one of the simple methods of helping couples with fertility problems.For unexplained infertility, IUI is usually the first line of treatment. This can be followedby IVF if unsuccessful.’Success rating<strong>The</strong> success rates for IUI using fertilitydrugs are around 15 per cent percycle of treatment, provided that theman’s sperm <strong>and</strong> the woman’s tubesare both healthy. As with othertreatments, IUI tends to be moresuccessful if the woman is younger<strong>and</strong>, therefore, more fertile.After the treatment you will bebooked in by the clinic for apregnancy test to see if the treatmenthas been successful. If it fails afterseveral attempts, it suggests thatthere may be some underlying reasonfor your infertility <strong>and</strong>, depending onyour age, your doctor may suggestyou go on to try another treatmentsuch as IVF. All things being equal,it would be reasonable to try three tosix IUI treatments.Our story: Learn what you can about treatmentSeeta, 33, <strong>and</strong> her husb<strong>and</strong> Tahir, 40,had been trying for a baby for a yearwithout success. Initial testssuggested PCOS, which later provednot to be the case. After treatmentthe couple, who live in Kilbarchan,Scotl<strong>and</strong>, had their daughter, Hema.Seeta tells their story:Treatment time‘I was initially diagnosed with polycysticovary syndrome (PCOS) <strong>and</strong> then withunexplained infertility. We tried Clomid,which didn’t work, <strong>and</strong> then werereferred for IUI. After three failed cycleson the NHS, I conceived our daughter,Hema. <strong>The</strong> nurses were really good,friendly <strong>and</strong> kind <strong>and</strong> responsive to ourneeds. But there were a lot of frustratingsilly little things which would wind meup, such as long waiting times at theclinic, meaning I got back to work late.’Feelings‘We felt out of control because we werebeing told what to do <strong>and</strong> had no say inwhat we were offered. At first I thoughtthat the drugs would work <strong>and</strong> then Ihoped that IUI would work first time.When it didn’t I got upset <strong>and</strong> found itdifficult. Even though I had a fantasticpregnancy <strong>and</strong> sailed through it <strong>and</strong> thebirth, I never let myself think any furtherahead than I was at the time. As a resultwhen Hema was born at 37 weeks wehad bought very few clothes <strong>and</strong>equipment.’‘Coming from an Asian background,infertility is something that is notdiscussed openly although we ourselvesdidn’t feel that there was a stigma. Wetold a few people outside our immediatefamily <strong>and</strong> friends <strong>and</strong> I distancedmyself from some people who I felt werenot supportive for a while.’‘We felt it was quite personal <strong>and</strong> didn’twant everyone knowing. We didn’t wantto keep telling everyone if cycles failedat a time when we were still trying to getour own heads around it.’‘People think that because they gotpregnant easily it’s easy for everyone<strong>and</strong> they can come out with hurtfulcomments. Although unintentional, youare very vulnerable when you are goingthrough treatment.’Our relationship‘It was hard at times because both of uswere in different places at differenttimes. Talking through things brought ustogether <strong>and</strong> I would say it has made usstronger as a couple.’Our tipsRemember you are not alone.Once you tell people they often say,“I know someone who has beenthrough that”.Learn what you can about treatment.We knew very little when we firstembarked upon it but as time wenton we learnt a lot more. <strong>The</strong>re’splenty of information about thetechnicalities, but nothing about howyou are going to feel during or aftertreatment, or about complementarytreatments. After the third attempt atIUI, I went to see a Chinese medicalpractitioner <strong>and</strong> had acupuncture<strong>and</strong> Chinese herbs. I also did yoga<strong>and</strong> we joined the west of Scotl<strong>and</strong>support group, Cradle. This gave mesome control back, which was great.For further information visit www.hfea.gov.uk | 21
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08IVF: In Vitro <strong>Fertilisation</strong>IN THE UK ALONE, APPROXIMATELY ONE BABY IN EVERY 80 IS BORN AS ARESULT OF IVF TREATMENT. IT HAS BECOME ONE OF THE MOST POPULARTREATMENTS, BRINGING HOPE TO THOUSANDS OF COUPLESIVF literally means ‘fertilisation in glass’,hence the familiar name of ‘test tube baby’.Eggs are removed from the ovaries <strong>and</strong>fertilised with sperm in a laboratory dishbefore being placed in the woman’s womb.Is it for you?<strong>The</strong> clinic may recommend IVF if:you are an older womanyou have been diagnosed with unexplained infertilityyour tubes are blockedyou have been unsuccessful with other techniquessuch as ovulation induction or IUI.What to expectFOR WOMENIVF involves several complex steps.Techniques differ from clinic to clinicbut a typical pattern of treatmentmight go like this:1 Boosting egg supplyAt the start of your treatment yourdoctor gives you drugs to block thehormones your pituitary gl<strong>and</strong> usuallyproduces during your monthly cycle.This allows them better control overwhen your eggs are produced. You thentake different drugs to make yourovaries produce more than one egg(see page 18).2 Checking on developmentVaginal ultrasound scans are carried outto monitor your developing eggs. <strong>The</strong>clinic will also do blood tests to chartthe rising levels of oestrogen producedby the eggs.As soon as the tests show that the timeis right, you will have another injection ofa different hormone to help your eggsmature. Timing is crucial, as you musthave this injection 34-38 hours beforeyour eggs are collected - this may meanyou having it last thing at night.3 Collecting eggsEggs are collected by ultrasoundguidance or, occasionally, by laparoscopy.Ultrasound guidance takes around30 minutes <strong>and</strong> you are either givena drug to make you drowsy or ageneral anaesthetic. Using vaginalultrasound to produce pictures on ascreen, your doctor inserts a thinneedle through your vagina into eachovary. <strong>The</strong>y then <strong>guide</strong> the needleinto each egg sac in turn, suckingthe egg into it.Laparoscopy is done under ageneral anaesthetic. Your doctorinserts a laparoscope (smalltelescope with a light attached)through a small cut in your stomachfollowed by a fine needle to removethe eggs as before. Nowadays, it israre for laparoscopy to be used.4 Collecting spermAround the time your partner’seggs are collected, you produce afresh sample of sperm. This will bestored for a short time before thesperm are washed <strong>and</strong> spun at a highspeed, so that the healthiest <strong>and</strong> mostactive can be selected. If you are usingdonated sperm, the sample is takenfrom the freezer <strong>and</strong> prepared in thesame way.5 Fertilising the eggsYour eggs are mixed with your partner’ssperm <strong>and</strong> left in a laboratory dish for16-20 hours before they are checked tosee if any have fertilised. Any thathaven’t, or any that have fertilisedabnormally, are discarded. <strong>The</strong> remainingembryos are then left for another 24-48hours before being checked again.6 Preparing for pregnancyTwo days after your eggs have beencollected, you are given progesteronevia pessaries, injection or gel to helpprepare the lining of your womb.7 Transferring the embryosTwo to five days after fertilisation,one or two healthy embryos areusually chosen <strong>and</strong> put back intoyour womb through your cervix viaa catheter (a fine, thin tube). <strong>The</strong>decision about how many embryosare transferred is important becauseit affects not just your chance ofconceiving but also your chance ofhaving a multiple birth (see page 24).Remaining embryos may be frozen forfuture IVF attempts, if they are suitable(see page 36).22 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilitySuccess ratingIt is often thought that IVF has a high failure rate,but the overall success rate for conception is aboutthe same as in nature <strong>and</strong> sometimes better. <strong>The</strong>chances of you having a baby, though, are slightlylower as women may miscarry early on, just as innatural conception.Female fertility diminishes with age, so if you areusing your own eggs, the younger you are, the higheryour chances of success. One in four women under30 have babies after IVF, but only one in ten by theage of 40.<strong>The</strong> expert says...Although hugely popular, IVF is not the answer to allfertility problems <strong>and</strong> is only recommended wherethere is a genuine reason <strong>and</strong>/or because simplermethods have failed. For women over 40, IVF cannotovercome the decline in the number <strong>and</strong> quality ofeggs that is part of the natural ageing process.Further optionsBlastocyst transferIIf you have good quality embryos but they fail to implant in thewomb, your doctor may suggest you try blastocyst transfer. Thisallows your embryos to develop to what is known as the blastocyststage before they are put back in the womb. A blastocyst is anembryo that has developed for five to six days after fertilisation bywhich time it has two different cell types <strong>and</strong> a central cavity.Allowing your embryo to develop for longer can increase yourchances of a successful pregnancy.Assisted hatchingBefore an embryo can attach to the wall of the womb (known asimplanting), it has to break out or ‘hatch’ from a gel-like shellcalled the zona pellucida. Some embryos have a tougher shellthan others, which makes it more difficult for them to do this.Making a hole in or thinning this shell (using acid, laser ormechanical methods) may help embryos to ‘hatch’. Someclinicians believe that the use of assisted hatching results in betterpregnancy rates, while others feel there is still too little informationto support its use. If your clinic suggests this treatment, do talk itthrough with them, asking why they are recommending it <strong>and</strong>what the perceived benefits will be in your case.Our story: We felt left out, not having a babyKate, 37, a self-employed advisoryteacher <strong>and</strong> her husb<strong>and</strong> Rupert, 40,programme manager at a college offurther education, live inTwickenham. <strong>The</strong>y had their son,Louis, aged 18 months, after threeattempts at IVF. Kate tells their story:Treatment time‘After an initial diagnosis of unexplainedinfertility, we discovered that my problemmight be PCOS-related. When our firstattempt at IVF using ICSI, funded by theNHS, failed we decided to go to aprivate clinic where we had two moreattempts.This time we were offered bothICSI <strong>and</strong> assisted hatching to helpthings along <strong>and</strong> I conceived Louis onthe second attempt.’Feelings‘Initially I experienced a deep sense ofemotional disappointment as if I hadbeen let down by my own body. Overthe next nine years my emotions veeredbetween defeat to determination, anger<strong>and</strong> resignation. Although we didn’t feelthere was any stigma attached to beingchildless we felt left out because wedidn’t have a baby.’‘We did not want to add to the taboo ofinfertility by not telling anybody. On thewhole people were overwhelminglysupportive although there were a fewwho said foolish or hurtful things. Welost a few friends but collected a lot ofgodchildren! Although we love them,what we really wanted was our ownchildren. My mum found it hard to knowhow to support me, but she found ahelpline for relatives of people withinfertility that was great.’Our relationship‘Although it brought us closer together itput a strain on our daily lives. When itwas clear that we would need IVF, weagreed I’d become a part time advisoryteacher. Rupert didn’t have such anoption. If there is a plus point, it’s thefact that we had learnt how to live witheach other before we had children.’Our tipsFind emotional support. Fertilityclinics are places of science <strong>and</strong>medicine rather than emotions. Findsomeone outside your relationship tooffer you TLC.Make time to talk through all thestages of your treatment with yourpartner. Attend appointmentstogether <strong>and</strong> go for coffeeafterwards to talk. Listen to eachother without judgement <strong>and</strong>be loving.You may not instantly bond withyour baby. I was anxious during mypregnancy <strong>and</strong> didn’t enjoy it. Ittook a couple of weeks to recover<strong>and</strong> fall in love with Louis.For further information visit www.hfea.gov.uk | 23
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08IVF: In Vitro <strong>Fertilisation</strong>YOU ASK…I’m 35. Can I have IVF on the NHS?As long as you are between the ages of23 <strong>and</strong> 39, you should be able to haveat least one cycle of treatment funded bythe NHS. <strong>The</strong>re are various criteria toqualify for funding, including if you oryour partner have been diagnosed with afertility problem or if you have been tryingto conceive for at least three years,<strong>and</strong> do not already have children(see pages 10-11).Our doctor is sending us to an IVFclinic that’s miles away from wherewe live. Can I have treatmentcloser to home?You may be able to have ‘satellite’ IVFwhich means that most of the earlystages of treatment can take place atyour local clinic or hospital. Only theactual placing of the embryos in yourbody is done at the IVF clinic.<strong>The</strong> big advantage of satellite IVF is thatit’s less disruptive so you might not needto take time off work. You will also savethe time, cost <strong>and</strong> energy of travellingbackwards <strong>and</strong> forwards to the IVFclinic. Sometimes eggs can also beretrieved at the local unit <strong>and</strong> then takento the IVF clinic in a portable incubator.This is known as ‘transport IVF’.You can find <strong>HFEA</strong>-licensed clinics withsatellite or transport centres on the ‘Finda clinic’ search at www.hfea.gov.uk.What is natural cycle IVF?Natural cycle IVF involves collecting <strong>and</strong>fertilising the one egg that you releaseduring your normal monthly cycle. Thisavoids the side effects of fertility drugs(see opposite) <strong>and</strong> you are also lesslikely to have twins or triplets. Andbecause your ovaries aren’t beingartificially stimulated, they don’t need torest after IVF. So should your treatmentbe unsuccessful, you can try againsooner if you wish.Pregnancy rates are more or less thesame as with conventional IVF over threeto four attempts. It may be worth trying ifyour periods are fairly regular <strong>and</strong> youare ovulating normally, but you haveblocked tubes or unexplained infertility.Not all clinics offer this treatment.How many embryos should I havetransferred during IVF?Research shows that, for many women,limiting the number of embryostransferred during treatment to tworeduces the number of multiplepregnancies, without causing asignificant decrease in the pregnancyrate. This is why the <strong>HFEA</strong> <strong>guide</strong>lines saythat clinics should transfer a maximum oftwo embryos to women under 40, whilewomen who are 40 or over can have amaximum of three transferred.Where donor eggs are used, themaximum number of embryos that can betransferred is two, regardless of the age ofthe woman having IVF. This is because theegg donors are fertile women who have tobe under the age of 36.Some clinics now offer the transfer ofone embryo to certain women, normallythose under 35 with a good chance ofsuccess, particularly if they are havingblastocyst transfer (see page 23)Why would I want to avoid amultiple pregnancy?Although having twins may have someappeal because two children are aninstant family, you need to bear in mindthe increased risks <strong>and</strong> pressuresassociated with multiple births. If you arecarrying more than one baby, thepregnancy <strong>and</strong> birth are more likely tohave complications, both for you <strong>and</strong> foryour babies. For more information, visitwww.hfea.gov.uk/ForPatients.Did you know?Scientists <strong>and</strong> doctors took over ten years to develop IVF treatment.Louise Brown, who was born in July 1978 to a blaze of publicity, was thefirst ever ‘test tube’ baby.Treatment reactionsLike all medical treatments, IVF hasrisks as well as benefits. <strong>The</strong>se caninclude reactions to drugs <strong>and</strong>certain pregnancy problems.Drug reactionWhat it is: A mild reaction to fertilitydrugs.Symptoms: Hot flushes, feeling downor irritable, headaches <strong>and</strong> restlessness.What to do: Nothing. If symptomsdon’t get worse they usually disappear.Ovarian hyper-stimulationsyndrome (OHSS).What it is: A potentially dangerousover-reaction to fertility drugs used tostimulate egg production. Cysts developon your ovaries <strong>and</strong> fluid collects in yourstomach. In severe cases (about 1-2 percent) your ovaries become very swollen<strong>and</strong> fluid may fill the stomach <strong>and</strong> chestcavities. A fall in the concentration of redblood cells can lead to blood clots <strong>and</strong>blood flow to the kidneys may also bereduced.Symptoms: Swollen stomach <strong>and</strong>stomach pains. In severe cases nausea<strong>and</strong> vomiting, severe stomach pains <strong>and</strong>swelling, shortness of breath, faintness<strong>and</strong> reduced urine.What to do: OHSS is potentially veryserious, so if you start to experience anyof the above symptoms you mustcontact your clinic immediately. <strong>The</strong>ymay decide to stop treatment. If you arebadly affected you may have to go tohospital as an emergency. For moreinformation, visitwww.hfea.gov.uk/ForPatientsEctopic pregnancyWhat it is: When an embryo develops inyour fallopian tube rather than yourwomb. <strong>The</strong> chances of an ectopicpregnancy seem to be higher in womenhaving IVF especially if they already haveproblems affecting their tubes.Symptoms: Vaginal bleeding, lowpregnancy hormone levels <strong>and</strong>, ifpregnancy continues, miscarriage <strong>and</strong> arisk of the tube bursting.What to do: You should have apregnancy blood test to check for thepregnancy hormone, hCG. If you arepregnant you should also have a scan atsix weeks to check for the baby’sheartbeat <strong>and</strong> to make sure it is growingproperly in the womb. Report any vaginalbleeding or stomach pain to the doctor.24 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityGenetic testingSeveral centres in the UK are currentlylicensed to carry out tests on embryos todetect certain inherited diseases <strong>and</strong>problems to ensure that only unaffectedembryos are selected before beingplaced back in the womb.Conventional tests for genetic diseasescannot be carried out until the 12thweek of pregnancy so testing embryosbefore they are implanted could help you<strong>and</strong> your partner to avoid having tomake the difficult decision of whether tohave a termination (abortion) if either ofyou is the carrier of a genetic disease<strong>and</strong> the embryo is affected.<strong>The</strong> tests are high-tech <strong>and</strong> thereforeexpensive.Pre-implantation geneticdiagnosis (PGD)If you have had several terminationsbecause your baby had a geneticdisease or you already have a child witha genetic disease <strong>and</strong> are at high risk ofhaving another, you might want toconsider PGD.It involves checking the genes of threeday-oldembryos conceived by IVF forgenetic diseases such as haemophilia<strong>and</strong> cystic fibrosis. <strong>The</strong>re are currentlyten UK clinics who offer this treatment.How is it done?In the laboratory, one or two cells areextracted from the embryo <strong>and</strong> areexamined to see if they are carrying theculprit genes. Some genetic diseases,such as Duchenne muscular dystrophy,only affect males. In this case the cell isexamined to find out the embryo’s sex<strong>and</strong> only female embryos are replaced.This procedure is not allowed simply toensure you have a baby boy or girl tobalance your family.Some serious or life-threatening geneticdiseases may be treated using stemcells from a family member whosetissue is a genetic match for theaffected person. Not all family membershave the same tissue type.In extremely rare cases, where nosuitable donor can be found, parentsof a child affected by a serious geneticdisease may try to have a new baby inthe hope that the blood from its umbilicalcord, which is rich in stem cells, may beused to treat the existing, affected child.<strong>The</strong>ir chances of having a baby whosecord blood may be used in this way canbe increased by using PGD to identifyembryos with a tissue type whichmatches that of the affected child.This is a very complex <strong>and</strong> dem<strong>and</strong>ingprocedure <strong>and</strong> may be used only wherethe condition of the affected child isserious or life threatening. <strong>The</strong> proceduremust be authorised by the <strong>HFEA</strong> on acase-by-case basis.Find a list of conditions which PGD hasbeen licensed for under ‘treatmentsexplained’ on www.hfea.gov.ukPre-implantation geneticscreening (PGS)If you are over 35, with a high risk ofhaving a baby with a chromosomeproblem such as Down’s syndrome,or have a family history of chromosomeproblems, you may want to considerPGS. It may also be offered if youhave a history of recurrent miscarriageor have had several unsuccessfulIVF treatments.PGS involves testing embryos producedby IVF to make sure they have the rightnumber of chromosomes. It is alsocalled aneuploidy screening. Aneuploidyis where the embryo has the wrongnumber of chromosomes - for example,Down’s syndrome, where there are threenumber 21 chromosomes instead of theusual two.How is it done?As for PGD, except that chromosomesare examined to see how many thereare <strong>and</strong> if they are normal. <strong>The</strong>re arecurrently eight UK clinics who offer thistreatment (visit ‘Find a clinic’ on the<strong>HFEA</strong> website for details).Chromosome countsChromosomes are tiny structuresfound in the centre of each cell inthe body. Each chromosome carriesthous<strong>and</strong>s of genes, which instructyour body how to work.Chromosomes are made up of twochains of genetic material calledDNA. <strong>The</strong>re are 23 pairs ofchromosomes (46 altogether) ineach of our cells, except for eggs<strong>and</strong> sperm, which each have 23chromosomes. When these fusetogether they create a single humanbeing with the usual 46chromosomes.FURTHER INFORMATIONVisit www.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 25
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08ICSI: Intra-Cytoplasmic Sperm InjectionINJECTING AN EGG WITH SPERM CAN BE A SUCCESSFUL ANSWERTO MALE INFERTILITY ISSUESIntra-cytoplasmic sperm injection (ICSI),which involves injecting a single sperm intothe cytoplasm or centre of an egg, is thebiggest advance in infertility treatment sinceIVF. It was introduced in 1992 <strong>and</strong> the nextyear the first UK baby from ICSI treatmentwas born. Over 4,500 babies were born inthe UK during 2003/04 as a result of thisrevolutionary treatment for male infertility.So what actually happens?Is it foryou?<strong>The</strong> embryologist willexamine your sperm undera microscope <strong>and</strong> decidewhether ICSI could increaseyour <strong>and</strong> your partner’schances of having a baby.It may be performed if:What to expectFOR MENyour sperm count is very lowyour sperm cannot move properlyor are abnormally shapedthere are high levels of anti-spermantibodies in your semenyou <strong>and</strong> your partner have triedprevious IVF treatment but few orno eggs have fertilisedyour partner has responded poorlyto ovarian stimulation, producingfew eggs of which few have beenable to be fertilisedSperm has been retrieved directlyfrom the epididymis (PESA orMESA) or the testicles (TESE) or,rarely, by electroejaculation.FOR WOMENFOR MENYou take fertility drugs to stimulate your ovaries to produce more eggs, which arecollected on a certain day as for IVF (see page 22). <strong>The</strong>se are then fertilised with yourpartner’s sperm (see below) <strong>and</strong> replaced in your womb in exactly the same way as forconventional IVF. Any suitable embryos not used at this stage can be frozen for futureuse. After the treatment, your clinic will arrange a future date with you for yourpregnancy test.You produce a fresh sperm sample onthe same day as your partner’s eggs arecollected. Your sperm are then used tofertilise her eggs by injection before theyare returned to the womb.26 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityYOU ASK…I’ve heard that ICSI can causebirth defects. Is this true?As ICSI is still relatively new, therehave been some concerns thatinjecting the sperm into an egg coulddamage it <strong>and</strong> lead to birth defects.Success ratingICSI can hugely boost your chances ofconception as the sperm don’t have totravel to the egg or penetrate it. Successdepends a lot on the skill <strong>and</strong> experienceof the clinic, but as the techniquebecomes more widespread,success rates continue to improve.As with IVF, the younger the woman,the higher the success rate.Age is less important for men as spermare freshly made <strong>and</strong> only healthy spermwill be used for ICSI. <strong>The</strong> quality ofsperm, however, does decrease asmen age.However, the first results from anongoing study led by Londonpaediatrician Dr Alistair Sutcliffe,published in July 2003, wereencouraging.Our story: Give yourself time<strong>The</strong> study compares 541 childrenconceived by ICSI <strong>and</strong> 440 by IVFwith 542 who were conceivednaturally. It showed thatat the age of five, the ICSI <strong>and</strong> IVFchildren were doing just as well asthe ones who were conceivednaturally.Another concern is that infertile mencould pass on their infertility to theirsons born through ICSI through theirgenes. <strong>The</strong>re is no definitive answerto this yet.As with all risks, it is worth discussingthis with your clinic. You might alsolike to consider talking through yourconcerns <strong>and</strong> options with acounsellor or with other couples whohave used ICSI.For more information, seewww.hfea.gov.uk/ForPatients.<strong>The</strong> expertsays...‘ICSI has helped many thous<strong>and</strong>sof couples to have a baby, especiallyin instances of a man having a lowsperm count or poor quality sperm.But as the reasons for a low spermcount can lie in the genes, whichmay be passed through the male line,a man should always have a checkupblood test before going aheadwith ICSI.’Annette, 35, a civil servant <strong>and</strong>Alan, 39, a chartered surveyor fromRhondda in South Wales, had beentrying for a baby without successfor two years. Tests revealedthat poor sperm motility could bethe reason. Annette tells their story:Treatment time‘We didn’t really have any treatmentchoices because of Alan’s problems withhis sperm, so IVF with ICSI was our onlychance of having a baby. After twounsuccessful treatment cycles wechanged clinics <strong>and</strong> after a third cycle ourtwins Ffion <strong>and</strong> Lowri, who are now 14months old, were conceived.’Feelings‘<strong>The</strong> whole experience is emotionally <strong>and</strong>physically battering. I remember sitting atmy desk feeling utterly drained <strong>and</strong> thinking“will I ever get over this?”. I didn’t realise itwas going to be as difficult as it was. But itwas all worth it in the end. We have twolovely little girls <strong>and</strong> despite all the ups <strong>and</strong>downs I’m now over the moon.’‘At first we didn’t tell anyone except mymother <strong>and</strong> work colleagues who knewbecause I had to have time off work forthe first couple of rounds of treatment.But when we were asked at a familyparty yet again, “when are you going tostart a family?”, we decided to be honest.Most of our family <strong>and</strong> friends weresupportive. But there were some whosaid irritating things like “all you needis a weekend <strong>and</strong> a bottle of wine <strong>and</strong>you’ll be fine.”Our relationship‘Going through treatment brought uscloser together. When things were bleakwe would think at least we’ve got eachother. That’s the main thing.’Our tipsGive yourself time to recover betweentreatments. I had the secondtreatment straight after the first <strong>and</strong> inretrospect, I wish I had given myselfmore time to recover.Stay positive. Our worst fear was thatit was going to fail.Be aware how difficult you may findpregnancy. When I did conceive it wasalmost: “Okay it worked. Now what?”I didn’t enjoy pregnancy <strong>and</strong> becausethe twins were born early I found ithard to get close to them. I supposeit was self-preservation - I didn’t wantto get too attached in case it allwent wrong.Get some support. I wish I’d had moresupport when we first started out. Wedid get support from family <strong>and</strong> friendsbut unless you have been through ityourself you have no real idea how itaffects people.For further information visit www.hfea.gov.uk | 27
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08GIFT: Gamete Intra-Fallopian TransferGIFT IS ONE OF THE EARLIEST FERTILITY TREATMENTS ANDIS STILL GOING STRONG TODAYGamete intra-fallopian transfer (GIFT) startsoff with gametes (your eggs <strong>and</strong> sperm)being collected in exactly the same way asfor IVF. <strong>The</strong> healthiest are chosen, mixedtogether <strong>and</strong> placed in one of the fallopiantubes (the tubes down which eggs pass fromthe ovaries to the womb). <strong>Fertilisation</strong> takesplace inside the body, just as it could havedone had you not had medical intervention.So what actually happens?Is it for you?FOR WOMENGIFT can help in many cases of unexplainedinfertility, for example, when your fallopian tubesaren’t blocked or damaged.FOR MENGIFT can help if you have a low sperm count orsperm with poor movement (low motility).Your doctor may suggest you try IVF to make sureyour sperm can fertilise your partner’s eggs.If successful, GIFT may be used in the nexttreatment cycle or cycles instead of repeating IVF.What to expectSuccess ratingThis varies across clinics, but around 25-30 per cent of womenusually get pregnant in any one treatment cycle. Like mostfertility treatments, GIFT is most successful in younger women.YOU ASK…Is GIFT licensed by the <strong>HFEA</strong>?Yes, from 5 July 2007, this treatment requires a licencewhen using partner/donor sperm or eggs in treatment.FOR WOMENBefore proceeding with GIFT, you maybe given a hysterosalpingogram (uterinedye test) <strong>and</strong> a laparoscopy to checkyour fallopian tubes are healthy <strong>and</strong>clear. Up to the point of egg collection,GIFT is exactly the same as for IVF(see page 22).Your doctor will make a small 5mm cutin your tummy (under anaesthetic) sothat they can insert a laparoscope(small telescope with a light attached)to view your womb <strong>and</strong> fallopian tubes.<strong>The</strong> healthiest one or two eggs arethen mixed with the prepared spermin a catheter (a fine, flexible tube). <strong>The</strong>doctor inserts the catheter to depositthe eggs at the end of one or bothfallopian tubes, nearest the womb.You need a short rest before goinghome <strong>and</strong> will be given someprogesterone, via injections, pessariesor gel, to build up the lining of yourwomb to provide a good environmentfor any fertilised eggs.FOR MENYou are asked to provide a spermsample on the same day that the eggsare collected. If donor sperm are beingused, they are carefully thawed beforebeing mixed with the collected eggs.28 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityUsing Donated Sperm, Eggs or EmbryosNEARLY 2,000 CHILDREN ARE BORN EVERY YEAR IN THE UK USING DONATEDSPERM, EGGS OR EMBRYOS. THERE ARE A NUMBER OF SITUATIONS WHERETHIS CAN BE APPROPRIATE AND CREATING A FAMILY IN THIS WAY CAN BEVERY FULFILLING<strong>The</strong> decision to go down this route, however,is not a straightforward one. It is stronglyrecommended that you <strong>and</strong> your partner,if you have one, talk to an experiencedcounsellor <strong>and</strong> to other people who havechosen this treatment option before makingany decisions to go ahead.Before you beginIt is tough going through fertility treatment,but the decision to use donated sperm,eggs or embryos will have a far-reachingimpact on you, your partner <strong>and</strong> yourrelationship with your respective families.You will need to be sensitive to your own<strong>and</strong> your partner’s feelings <strong>and</strong> to giveyourselves time to think everythingthrough. Don’t rush into treatment - onlygo ahead when you feel ready.Don’t go it alone. Most clinics run localpatient support groups. <strong>The</strong> DonorConception Network is a national supportnetwork for people considering treatmentusing donor eggs, sperm or embryos,<strong>and</strong> for those who already have childrenconceived in this way (see page 44).Pause for thoughtYou may be considering usingdonated sperm, eggs or embryosbecause other fertility treatment hasbeen, or is likely to be, unsuccessful.Coming to terms with this can be likecoping with a bereavement. Giveyourself time to adjust.If you have a partner, you probablywanted to have their baby, not that ofanother man <strong>and</strong>/or woman, so it’s notsurprising if you feel a sense of loss atlosing that genetic connection.If you are single, you may be letting goof the hope of being a two-parentfamily, <strong>and</strong> having a partner withwhom to share the parenting.You may feel guilty that your sperm<strong>and</strong>/or eggs cannot be used <strong>and</strong> feelthat the fact you are now consideringdonation is somehow your ‘fault’. Youmay also worry that your partnerblames you for the situation.You may feel disappointed, sad, angry<strong>and</strong>/or afraid - <strong>and</strong> so may yourpartner. It can be difficult to see themstruggling to come to terms with theirfeelings at the same time as dealingwith your own. However, it can oftenhelp if you are able to talk thingsthrough as you each work throughyour feelings.Sometimes discussing things witheach other only gets you so far. Youwill cope in different ways. Can you getsupport from friends or family? Or anexperienced counsellor can often help.Remember: genetic connection isn’twhat makes for a loving family asmany men <strong>and</strong> women who have hada child or children using donated eggs,sperm or embryos have proved. Manysay that the joy of becoming parents iseven greater because of everythingthey have been through together.YOU ASK…Will my baby look like me <strong>and</strong>/or my partner?Your clinic can provide details about thephysical characteristics of donorsavailable. <strong>The</strong>y will attempt to matchdonor <strong>and</strong> patient characteristics. But justas with naturally conceived children, thereis no guarantee that your baby will closelyresemble the donor. Some ethnic groupsare under-represented in the availabledonated gametes or embryos. If you arefrom such a group, you may wish toconsider finding your own donor.Can the donor change their mind?Both you as the person being treated <strong>and</strong>the donor must give written, ‘effective’consent. Donors have the right to changetheir mind at any time in the process untiltheir sperm, eggs or embryos are actuallyused in treatment.Using donatedspermUsing donated sperm in your treatmentis an option in some circumstances whenusing your partner’s sperm would beunlikely to be successful, or if you do nothave a male partner.Is it for you?This may be an option if:FOR WOMENyou are single or in a same sexrelationshipFOR MENyou are producing little or no spermyour sperm is unlikely to be able tofertilise an eggyou have a high risk of passing onan inherited diseaseyou have had a vasectomyWhat to expect<strong>The</strong> clinic may do a pre-pregnancy check,including: details of your <strong>and</strong> your familymedical history; a physical examination;ultrasound scan <strong>and</strong> blood tests; bloodsugar <strong>and</strong> blood pressure check. <strong>The</strong>ymay also run some tests to make surethat you are producing eggs <strong>and</strong> thatyour fallopian tubes are healthy.Treatment takes place at the time youovulate (when an egg is released from anovary). Some clinics recommend fertilitydrugs to help maximise your chances.For further information visit www.hfea.gov.uk | 29
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Using Donated Sperm, Eggs or EmbryosUsing donatedeggsIs it for you?This may be an option if:Success rating<strong>The</strong>re is an average 25 to 40 per centsuccess rate for each treatment usingdonor eggs. This is slightly higher than theaverage success rate for conventional IVFacross all age groups, as donor eggs mustcome from someone aged 35 or under.Using donatedembryosIs it for you?This may be an option if:you have no ovaries or have hadthem removedyou have had cancer treatment whichhas damaged your ovariesyou are post-menopausalyou are producing few or lowquality eggsyou have tried to conceiveunsuccessfully using fertility drugsor IVFyou have had several recurrentmiscarriagesyou have irregular periods caused byhormonal imbalanceyou have a high risk of passing on anserious inherited disorder (see alsogenetic screening, page 25).What to expectFOR WOMENYou <strong>and</strong> your donor’s menstrual cyclesare synchronised <strong>and</strong> your womb isprepared to receive the eggs. <strong>The</strong> eggsare collected from your donor <strong>and</strong> mixedwith your partner’s or with donor’s sperm.Alternatively, the sperm can be introduceddirectly into the eggs (ICSI, see page 26)to fertilise them. When the embryos beginto develop, they are transferred to yourwomb as in st<strong>and</strong>ard IVF (see page 22).Occasionally eggs <strong>and</strong> sperm aretransferred together before fertilisationtakes place (GIFT, see page 28).FOR MENUnless you are using donor sperm, youwill give a sperm sample to check thatyour sperm are healthy <strong>and</strong> active. On theday that the eggs are collected you giveanother sperm sample which is mixedwith the donor eggs or introduced directlyinto the to fertilise them. Occasionallyeggs <strong>and</strong> sperm are transferred togetherbefore fertilisation takes place (GIFT).YOU ASK…How do I find donor?Some clinics may offer to put you on awaiting list for an egg donor - do askthem about how long they would expectyou to wait. <strong>The</strong>re are some ways youcan speed up this process:You can advertise for an egg donor.You can ask suitable friendsor relatives.Some clinics enable you to ‘share’eggs. This is when another womanreceiving treatment donates some ofher eggs for you to use (providedenough are collected).If I’m using donated eggs,who is the legal mother of anychildren born?<strong>The</strong> woman having treatment isconsidered by law to be the baby’smother, not the woman who donated theeggs. If the woman who is treated has ahusb<strong>and</strong> or male partner who gave hisconsent to the treatment, he is consideredby law to be the baby’s father.<strong>The</strong> waiting list for donor eggs inthe UK is too long - should I goabroad for treatment?<strong>The</strong> <strong>HFEA</strong> inspects clinics in the UKregularly, <strong>and</strong> licensed clinics have toabide by the <strong>HFEA</strong> Code of Practice. Wedo not regulate clinics in other countries.<strong>The</strong>se may be subject to local st<strong>and</strong>ards<strong>and</strong> regulations, which vary from countryto country. You should find out moreabout the st<strong>and</strong>ards of treatment you canexpect from a clinic you are considering.Egg donation is not without risk for thedonor. In the UK, donors are not paid <strong>and</strong>are required to give informed, writtenconsent. <strong>The</strong>y must also be offeredcounselling <strong>and</strong> provide information aboutthemselves. This is not st<strong>and</strong>ard practiceoutside the UK. Ask the clinic about theiregg donor recruitment processes, <strong>and</strong>what information about the donor will beavailable to you <strong>and</strong> to any child bornfrom the donation. In the UK, the eggdonor has no legal responsibility or rightsin respect of children born as a result oftheir donation - this may not be the casein other countries, so you will need toseek independent legal advice.you, your partner, or both of you havethe sort of fertility problems that meanyou are less likely to be successfulusing your own sperm <strong>and</strong>/or eggsyou or your partner both have aserious condition that would beinherited by any children you have <strong>and</strong>you wish to avoid passing it on, suchas Huntington’s disease (see page 27)you are single <strong>and</strong> post-menopausalWhat to expectYou have IVF treatment in the same wayas if you were using your own frozenembryos (see page 39). <strong>The</strong> physicalcharacteristics of the donors can bematched as closely as possible with thoseof yourself <strong>and</strong> your partner.YOU ASK…Who donates embryos?Most donated embryos are from peoplewho have completed their treatment. Iftheir treatment has been successful, therewill be brothers or sisters to your ownchild. Some couples donate embryos theycannot to use in their own treatment <strong>and</strong>which they do not wish to freeze.Using donatedeggs/embryosfrom abroadIf you want to import eggs/embryos backto the UK for treatment your clinic may beable to organise this for you. If a numberof conditions can be met (which yourclinic will be aware of) your clinic may beable to transfer the eggs/embryos withoutexpress authorisation from the <strong>HFEA</strong>. Insome cases, however, your clinic will needto apply to the <strong>HFEA</strong> on your behalf toimport from that country.It should be noted that the <strong>HFEA</strong> is notable to authorise imports fromunaccredited clinics within the EU orEuropean Economic Area (EEA).32 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityUsing Donated Sperm, Eggs or EmbryosBecoming a donor<strong>The</strong>re are many reasons to become adonor. You might want to help others or, ifyou have children of your own, you mightwant others to have the opportunity to bea parent. Your decision will have animportant impact on the people whoreceive your donation, on any childrenborn as a result <strong>and</strong> on you. It’s importantto think carefully about how you feel now<strong>and</strong> how you may feel in the future.Donating sperm, eggs or embryos is verydifferent to donating organs or blood. Youare potentially creating a new humanbeing. You will have a genetic link withany child created. <strong>The</strong> clinic will offer youcounselling before you go ahead. Thisgives you a chance to discuss what isinvolved <strong>and</strong> consider future implications.You may also wish to contact the NationalGamete Donation Trust (see page 45).How do you feel about donating whenyou don’t necessarily know if a babywill be born as a result?How do you feel about the childfinding out who you are <strong>and</strong> possiblywanting to meet you?How do your partner <strong>and</strong> your familyfeel about you donating?How do you think you will feel in thefuture knowing that children who aregenetically related to you are beingbrought up by other people?How might a child you already havefeel knowing that they have a brotheror sister somewhere, conceived as aresult of your donation?Donating sperm<strong>The</strong> <strong>HFEA</strong> has rules for clinics onselecting sperm donors to help to ensurethey are healthy. Obviously this cannot becompletely guaranteed. Our criteria are:Donors have to be between the agesof 18 <strong>and</strong> 45. Over the past ten years,the average age has increased tobetween 36 <strong>and</strong> 40 <strong>and</strong> many donorsalready have children of their own.Donors must be offered counselling<strong>and</strong> are encouraged to think about theimplications of donation.All centres offering sperm donationhave to freeze donated sperm samplesfor six months. This allows time for thedonor to be tested for infections suchas hepatitis <strong>and</strong> HIV. Provided thedonor doesn’t show any signs of thesediseases or of some other, potentiallyinheritable, conditions, the sperm canthen be used.Donating eggsYou have the right to decide whether youwant your eggs to be used for treatmentor for research (or both). You also havethe right to say your egg can only beused by a particular woman (a friend orrelative, for example).Your egg supply is boosted <strong>and</strong> eggscollected in the same way as for IVF (seepage 22). To avoid becoming pregnantyourself, you are advised to avoidunprotected intercourse during the timeyou take fertility drugs, <strong>and</strong> until afteryour first period following egg collection.Egg sharingIf you decide to share the eggs collectedfor your own IVF treatment with anotherwoman, you are also classified as an eggdonor.As with other people donating eggs,sperm or embryos, there are manydifficult emotional <strong>and</strong> social issues toconsider, which have been coveredelsewhere on these pages. In addition,you should consider:How might you feel if your eggsmake a baby for another couple butnot for you?Who are you going to tell about yourdecision to donate? If you feel that youcan’t tell anyone, this could be a signthat donation isn’t for you.How might you feel if a child born fromyour donated eggs wished to makecontact with you when they are 18?How might this affect you <strong>and</strong> yourfamily - including a child born to you<strong>and</strong> who is also genetically related tothe donor-conceived person?Donating embryosIf you have completed your family ordecided to call a halt to IVF, you may wishto donate any remaining embryos toanother person or allow them to be usedin treatment. Of course this is yourdecision, <strong>and</strong> your embryos can only beused in this way if you give your consentto this in writing.If you donate your embryos to anotherperson or couple to be used in treatment,the same rules on donation apply as todonating sperm or eggs. This means thatany child born from your donation will beable to find out identifying informationabout you when they reach adulthood(see page 30).How do you feel about your embryosmaking a baby for another person orcouple? If your eggs <strong>and</strong> yourpartner’s sperm were used to createthe embryos, the children born fromthem will be genetically yours.Who are you going to tell about yourdecision to donate? Particularly if youhave a child born from the same batchof embryos, what are you going to tellthem about possible brothers orsisters they may never meet?How might you feel if a child born fromyour donated embryos wishes tomake contact with you, <strong>and</strong> possiblyyour children, when they are 18?YOU ASK…What if I change my mind afterdonating?Both you <strong>and</strong> the person being treatedwill need to give your written, ‘effective’consent. You have the right to changeyour mind at any time in the process untilyour sperm, eggs or embryos are actuallyused in treatment.What legal responsibility do I havefor a child born from my donation?Any child born from your donation is thelegal child of the woman treated <strong>and</strong> herhusb<strong>and</strong> or male partner, if she has one.You have no legal rights or responsibilityfor the child born. However, since thelifting of donor anonymity (see page 30),identifying information about you will beheld about you on the <strong>HFEA</strong> Register <strong>and</strong>may be given to any people born fromyour donation once they are 18 years old.If you are considering donating freshsperm for use in treatment outside a clinic(for someone to use for homeinsemination or to an internet company,for example), you are considered by lawto be the father of the child, with therights <strong>and</strong> responsibilities this involves.We strongly recommend only donatingsperm through a clinic.How much will the clinic pay me formy donation?Donors cannot be paid in the UK.However, they can be compensated forcosts shown to be incurred throughdonating. This could include travel orchildcare expenses where receipts areprovided. Also, donors can claim for theloss of earnings to a daily maximum of£55.19 up to a maximum of £250 percourse of donation.For further information visit www.hfea.gov.uk | 33
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08SurrogacySOMETIMES, ASKING SOMEONE ELSE TO HAVE A BABY FOR YOU MAY BE YOURONLY REAL OPTION, BUT IT’S NOT SOMETHING YOU SHOULD CONSIDER LIGHTLYA matter of lawSurrogacy is a very complicatedlegal area, which is why werecommend that you seek advicefrom a solicitor before making anydecisions.<strong>The</strong> legal mother of the childat birthIs it for you?You may want to considersurrogacy if:you have a medical conditionwhich makes it impossible ordangerous for you to getpregnant <strong>and</strong> give birthyou have been unsuccessfulwith IVF.Surrogacy is when another womancarries, <strong>and</strong> gives birth to a baby for you.You <strong>and</strong> your partner (if you have one)are known as the ‘commissioningcouple’, while the woman who carries<strong>and</strong> gives birth to your baby is the‘surrogate’.It’s vital that both parties are fullycommitted to the arrangement <strong>and</strong> thatyou underst<strong>and</strong> the implications of whatis involved now <strong>and</strong> in future years. This iswhy it is so essential to talk these throughwith an experienced counsellor beforeyou start the surrogacy process. You willalso need to get legal advice beforestarting out (see panel opposite).If you are going through a fertility clinic,both you <strong>and</strong> your partner (if you haveone) <strong>and</strong> the surrogate <strong>and</strong> her partner(if she has one) will have to undergo thesame processes as if you were all startingany fertility treatment. This includes a‘welfare of the child’ assessment (seepage 13) <strong>and</strong> screening of donor eggs<strong>and</strong> sperm if applicable.What to expect<strong>The</strong>re are two ways of having a babywith a surrogate:1. You can use sperm from a malepartner, if you have one, <strong>and</strong> thesurrogate’s eggs. In this case,fertilisation is usually done by artificialinsemination or by IUI (see page 20).This is called full surrogacy(sometimes also referred to astraditional or straight surrogacy).2. You can use your own eggs <strong>and</strong> yourpartner’s sperm, or donated eggsinseminated with your partner’ssperm. This involves IVF (see page22) which must take place in alicensed clinic. This is called partialsurrogacy (also referred to asgestational or host IVF surrogacy).Pause for thought…What are you going to tell your family,friends <strong>and</strong> colleagues?How are you going to feel aboutanother woman carrying your baby?How confident <strong>and</strong> trusting do youfeel about the surrogate?How do you feel about the possibility ofthe surrogate having a multiple birth?If you or the surrogate already havechildren, what are you going to tellthem about the pregnancy <strong>and</strong> newarrival? How will you prepare them,<strong>and</strong> deal with their questions <strong>and</strong>possible anxieties or jealousy?If the surrogate is a friend or familymember, how will you feel aboutthem seeing you bringing up thechild they have carried?<strong>The</strong> surrogate, as the woman givingbirth, will be the legal mother of thechild <strong>and</strong> will be put on the birthcertificate until you have appliedthrough the courts for a parental orderor adoption. <strong>The</strong>n legal parentage istransferred to you, or to you <strong>and</strong> yourpartner as a couple.<strong>The</strong> legal father of the child at birthUsually the surrogate’s partner orhusb<strong>and</strong> will be the legal father of thechild <strong>and</strong> will be put on the birthcertificate. In Scotl<strong>and</strong>, it is possiblefor your partner to be named on thebirth certificate, giving him legalparentage. Otherwise, you will have toapply through the courts for a parentalorder or to adopt the child.Parental order or adoptionYou may only apply for a parentalorder if you <strong>and</strong> your partner aremarried, domiciled in the UK <strong>and</strong> if thechild is genetically related to either oneor both of you. To apply for a parentalorder, the surrogate <strong>and</strong> the father ofthe child must consent unconditionallyto this being made, <strong>and</strong> the ordermust be applied for within six monthsof the birth. You will need legal adviceon applying for a parental order.If you cannot apply for a parentalorder, your only option is to adopt thechild. In such circumstances, the clinicwould be breaking the law if they wentahead <strong>and</strong> provided treatment beforebeing satisfied that a registeredadoption agency is involved in theprocess. This is a requirement underthe Adoption <strong>and</strong> Children Act 2002which applies to Engl<strong>and</strong> <strong>and</strong> Wales(the requirements are slightly differentin Scotl<strong>and</strong> <strong>and</strong> Northern Irel<strong>and</strong>). It isimportant that you get legal advicebefore beginning the process.34 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityYOU ASK…How can we find a surrogate?It is illegal for a clinic to find a surrogatefor you, so you will need to do thisyourself. A relative or friend may bewilling to help or you may prefer to find asurrogate who is not already known toyou. It’s worth talking to other peoplewho have experience of surrogacy tolearn how they found their surrogate. Bylaw, you are not allowed to advertise.What should we look for in asurrogate?Trust is vital, not least because you willneed to agree on issues like antenataltesting - for example, for spina bifida orDown’s syndrome - <strong>and</strong> decide whatyou will do if the baby had a congenitalproblem. Of course, any potentialsurrogate should be capable of a safe<strong>and</strong> healthy pregnancy <strong>and</strong> birth.Do we have to pay the surrogate?No. In some parts of the worldsurrogates are paid but this is notallowed in the UK. You can pay‘reasonable expenses’ - costs incurredby the surrogate such as clothes, travelexpenses <strong>and</strong> loss of earnings.What if the surrogate motherchanges her mind?It doesn’t happen often but she doeshave the legal right to change her mind,even if the baby is not genetically relatedto her. This is extremely difficult <strong>and</strong>painful for everyone concerned, which iswhy it is so essential that you trust eachother <strong>and</strong> are clear <strong>and</strong> committed toyour arrangement from the outset.Our story: Ginny <strong>and</strong> I hit it off right awayMel, 38, <strong>and</strong> her partner Christopher,45, have five children aged between11 <strong>and</strong> 19. She had IVF to become asurrogate mother to Bruno forVirginia <strong>and</strong> Ian. Mel tells their story:Treatment time‘Ian <strong>and</strong> Ginny’s sperm <strong>and</strong> eggs wereused to create embryos <strong>and</strong> they wereplaced in my womb by IVF. I becamepregnant on the second cycle. We hadplanned a home birth but Bruno was tendays overdue so I ended up beinginduced at a local hospital. Ginny caughthim as he was born <strong>and</strong> they stayedwith him while I went to the ward.’Feelings‘I have always wanted to become asurrogate. I get the most enormouspleasure from my own children <strong>and</strong> forsomeone to have the possibility of havingchildren taken away from them seems sounfair. Ginny <strong>and</strong> I hit if off right away.Barely a day goes by when she doesn’ttext me a photo of Bruno. We talked <strong>and</strong>talked before deciding to go ahead. FromOur story: As I held Bruno in my arms, it felt rightVirginia, 39, <strong>and</strong> her husb<strong>and</strong>, Ian, 38,already had two children but longedfor another. However, Virginia has adisease of the womb calledAsherman’s syndrome. After fouroperations to try <strong>and</strong> put things rightthey learnt the only option of havingtheir own baby was host surrogacy.Treatment time‘I had two cycles of stimulation <strong>and</strong> eggcollection at a centre which supportedsurrogacy. We decided we would dothree cycles <strong>and</strong> then decide whether tocarry on trying but on the secondattempt Mel became pregnant.’Feelings‘<strong>The</strong> pregnancy felt quite surreal. Aftergoing through so much I couldn’t letmyself believe we were actually going tohave a baby. It did feel odd someoneelse being pregnant with our child. Until Iheld him in my arms I couldn’t quitebelieve it but Mel was fantastic, she reallymade us feel a part of it from the start.<strong>The</strong> birth was the most amazingexperience. As soon as I held Bruno inmy arms it felt right. Mel always made itclear that he was not her baby but wewere respectful of the enormous part shehad played. We want Bruno to be proudof being a surrogate baby. We will stay intouch with Mel <strong>and</strong> she will always be inour minds as Bruno grows up. I want herto be proud of us <strong>and</strong> the way we bringhim up. She’s a real inspiration.Our relationship‘We were totally committed to surrogacy<strong>and</strong> our relationship with Mel <strong>and</strong> herfamily. IVF <strong>and</strong> surrogacy are anthe outset it was always their baby but ofcourse you do bond with them; there’sno way you can’t especially towards theend of pregnancy <strong>and</strong> there was a bit ofsadness there when I h<strong>and</strong>ed him over.But all in all it has been the mostrewarding experience. I feel hugelyprivileged to have carried their baby <strong>and</strong>to think that I have changed the futurehistory of their family.’Our relationship‘My partner <strong>and</strong> kids were fully behind meall the way. He looked after me throughoutthe pregnancy <strong>and</strong> was there for the birth.I couldn’t have done it without him.’emotional rollercoaster. You need astrong relationship at the outset. Comingthrough this has made us even stronger.’Our tipsIt’s vital that there is absolute trustbetween you. I never doubted Mel.Get support. It’s stressful, bothemotionally <strong>and</strong> physically. We couldnot have survived it without thesupport of friends <strong>and</strong> family.Go to a clinic that supportssurrogacy. We took time to chooseone. It’s also important that thehospital where the baby will be bornis underst<strong>and</strong>ing.Don’t go it alone. Get advice <strong>and</strong>support. We chose the organisationSurrogacy UK because we found themessage board <strong>and</strong> regular gettogethersinvaluable. We went to amediation session to go througheverything involved.Never give up on your dream.For further information visit www.hfea.gov.uk | 35
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Freezing <strong>and</strong> storing embryosIF SOME OF YOUR EMBRYOS CREATED DURING AN IVF CYCLE ARE NOT USEDYOU CAN HAVE THEM FROZEN AND STORED FOR USE AT A LATER DATEDuring IVF treatment, your ovaries may bestimulated to produce more eggs than usual,which means that you may end up with morehealthy embryos than you can use. Under<strong>HFEA</strong> rules, clinics can only transfer amaximum of two embryos if you’re under 40<strong>and</strong> three embryos if you are 40 or over (<strong>and</strong>using your own eggs). This is designed toreduce the risk of multiple pregnancy (givingbirth to twins, triplets or more).Most clinics will give you the chance to freeze<strong>and</strong> store suitable ‘spare’ embryos for futureuse. This can be as part of the IVF or ICSIpackage, or as an extra service for which youmay have to pay. Your embryos may also beable to be stored for future use if your plannedtreatment needs to be cancelled after eggcollection - for example, if you have overrespondedto the drugs (see page 24).Is it for you?If you store your embryos it meansthat if you decide to have anothergo at IVF you don’t have to gothrough the expensive, <strong>and</strong>sometimes difficult, process of eggstimulation <strong>and</strong> collection all overagain. It also means you don’t haveto take fertility drugs that put you atrisk of ovarian hyper-stimulationsyndrome or OHSS (see page 24)<strong>and</strong> you can maximise your chanceof conception from one eggcollection.Making decisionstogetherBefore your embryos can be stored, theclinic asks you <strong>and</strong> your partner to signa form agreeing to their freezing <strong>and</strong>storage. This includes how long youwant your embryos stored for, how theymay be used <strong>and</strong> what you want tohappen if one of you dies or becomesincapable of withdrawing your consent.Storage timesEmbryos can normally be stored for upto five years, though this can beextended under certain circumstances(see below). You can change your mindat any time, in which case you should letthe clinic know about your decision.While the embryos are in storage, theclinic should contact you regularly tocheck that you want them to remain instorage. Don’t forget to let the clinicknow if you move, or if yourcircumstances change in other ways,36 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertilityfor example, if you split up or divorce.Should you divorce, this does notautomatically mean that either person’sconsent is withdrawn.Towards the end of the storage period,the clinic will get in touch <strong>and</strong> ask youwhat you wish to do next, such asextend the storage period, allow theembryos to perish or donate them forresearch or to another patient.In certain situations you may beallowed to store your frozen embryosfor up to ten years. For example,if you or your partner have beendiagnosed as infertile <strong>and</strong> are likely towant to use your embryos for futuretries at IVF or if you are at risk ofhaving a child with a geneticallyinherited condition.Very occasionally, you may be allowedto store your frozen embryos for evenlonger than ten years, for example, ifyou or your partner become infertile asa result of cancer treatment. In thiscase the embryos cannot be storedonce you reach 55 (unless you turn 55during the first five years of storage).<strong>The</strong> freezing processOnly embryos which are developingnormally <strong>and</strong> have not fragmented aresuitable for freezing. Before your embryosare stored they are frozen in a vat ofliquid nitrogen.<strong>The</strong> medical term for this iscryopreservation, from the Greek wordcryo meaning cold. A special liquid calleda cryoprotectant is added to protect theembryos against freezer damage.Donating your embryosAlternatively, if you have completed yourfamily or decided to call a halt to IVF,you may wish to donate your embryosto another person or allow them to beused in research. Of course this is yourdecision, <strong>and</strong> your embryos can only beused in this way if you give your consentto this in writing.If you donate your embryos to research,they could be used in studies to help IVFtechnology, or in stem cell studies.Even when great care is taken,however, some embryos do not survivefreezing <strong>and</strong> thawing. This is why, whenit comes to your next treatment cycle,you may be advised to have moreembryos thawed than can actually betransferred.Both of you will need to consent againto any future use of your embryos.For more information about researchprojects licensed by the <strong>HFEA</strong>, visit Howwe Regulate on www.hfea.gov.uk.If you donate your embryos to anotherperson to be used in treatment, thesame rules on donation apply as todonating sperm or eggs. This meansthat any child born from your donationwill be able to find out identifyinginformation about you when they reachadulthood (see page 30).YOU ASK…We want to have another go at IVFusing our frozen embryos. What areour chances of success?Your chances of having a baby using athawed frozen embryo are slightly lowerthan with a fresh embryo. <strong>The</strong> goodnews is that your chances of becomingpregnant with a thawed frozen embryoare not affected by how long theembryos have been stored.What happens when we want touse some of our frozen embryos?It all depends on why you need fertilitytreatment <strong>and</strong> what your doctor advises.If your periods are regular <strong>and</strong> your clinicoffers treatment every day, your doctormay suggest using a natural cycle. In thiscase, ultrasound scans may be used tocheck your developing eggs <strong>and</strong> urine orblood tests to check when you areovulating (releasing an egg). This meansyour doctor can thaw <strong>and</strong> replace theembryos when the lining of your womb isat its most receptive.If your periods aren’t regular, or youdon’t have them at all, your doctor maysuggest you use drugs to dampen downyour natural hormones <strong>and</strong> trigger a‘false’ period. You are then givenprogesterone to help prepare yourwomb for an embryo. <strong>The</strong> embryos arethen thawed <strong>and</strong> replaced in the womb(see page 22).What happens if my partner orI withdraw consent?Who do the embryos belong to?<strong>The</strong> law states that if either of youwithdraws consent, the clinic has toremove the embryos from storage.Under <strong>HFEA</strong> rules, the clinic must informboth parties that this is aboutto happen, either by telephone or inwriting. This is why it is so importantto let your clinic know if your contactdetails change.Wasn’t there a high profilemix-up with some frozen embryos,which led to a couple havinganother couple’s baby? Could thishappen to us?It is very unlikely these days. All clinicshave a system for double-checking thecouples being treated <strong>and</strong> the identity ofthe eggs, sperm <strong>and</strong> embryosthroughout the culture process. Beforeembryos are transferred, the woman’sidentity is also double-checked. <strong>The</strong><strong>HFEA</strong>’s Incident Alert System, which wasintroduced after this mix-up occurred,means that licensed clinics can shareany lessons they have learnt from actualincidents or near misses to keepreducing the risk of anything like thishappening again.For further information visit www.hfea.gov.uk | 37
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08If you become pregnantMAKING THE SWITCH FROM BEING A FERTILITY PATIENT TO A MUM-TO-BEMAY NOT BE AS EASY AS YOU IMAGINED. BUT THERE ARE WAYS TO MAKETHE TRANSITION SMOOTHERMost clinics will offer you a pregnancy test acouple of weeks after your treatment but if youwant to do one for yourself, home pregnancytest kits will also give you a pretty accuratereading at a couple of weeks - do bear in mindthat there’s a risk of a test showing a falsepositive result if it is done too early.If the result is negative, or you get a weakpositive, it’s worth doing another test two weekslater just to double-check. Whatever the result,don’t forget to inform the clinic so they canenter it on the <strong>HFEA</strong> register.If you are pregnant, you may start to noticeother clues such as missing your period,feeling or being sick, sore breasts, wanting togo to the loo more often, tiredness, sensitivityto strong tastes <strong>and</strong> smells, as well asmood swings.Next stepsSome clinics stay in touch during theearly weeks of pregnancy <strong>and</strong> do one ormore ultrasound scans to make sureyour baby is developing normally. Othersdo not offer continued care, in whichcase you will need to make your ownarrangements for your antenatal care<strong>and</strong> birth.If you are going to have NHS care, thefirst step is to visit your GP who willarrange a booking visit at the hospitalwhere you will meet the midwives <strong>and</strong>doctors who will look after you duringyour pregnancy. If you are goingprivately, then you will need to make anappointment with a private consultant.Finding supportIf your treatment is successful, don’t besurprised if you are not as overjoyed asyou expected to be. It can take time toadjust <strong>and</strong> you may go through arollercoaster of emotions. This is quitenormal. <strong>The</strong> important thing is to acceptyour feelings whatever they are, <strong>and</strong> toremember that most mums-to-be gothrough a mix of emotions on discoveringthey are pregnant whether they havebeen through fertility treatment or not.Antenatal care doesn’t usually start untilaround the 12th week of pregnancy butyou may feel you need some supportduring these first few weeks. Some clinicswill encourage you to stay in touch <strong>and</strong>you may find it helpful to talk to one oftheir counsellors. <strong>The</strong> clinic may be ableto put you in touch with other womenwho have had a baby after fertilitytreatment <strong>and</strong> will be able to empathisewith how you are feeling. <strong>The</strong>re are alsogroups you could join, such asACeBabes, or an internet support group(see page 44).MakingconnectionsIf you had fertility treatment at a largeNHS hospital with a maternity unitattached (even if you paid privately), or ina large private hospital with a maternityunit, there may be links between the two<strong>and</strong> your notes can be passed from oneto the other so they know your history.If this is not the case, it will be up to youto tell the doctors <strong>and</strong> midwives caring foryou about your fertility treatment <strong>and</strong> it’sworth thinking carefully about how muchyou want to disclose. For example, if youare an older woman but used donor eggs(ie, from someone under 35) in yourtreatment, <strong>and</strong> if your doctors do notknow this, they may suggest antenataltests that are, in your case, unnecessary.38 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityCheckpointEmotionally, you may find being pregnant tough but physicallyyour pregnancy should not be any different to someone whodidn’t have fertility treatment. <strong>The</strong>re are some situations whichmay mean you need more scans or appointments at thehospital. <strong>The</strong>se include:previous miscarriages or stillbirthsage - the older you are the greater your risk of complicationssuch as pregnancy diabetes <strong>and</strong> pre-eclampsia (the highblood pressure condition of pregnancy)expecting twins, triplets or moreyour general healthNatural concernsMore than a million babies around the world have now beenborn as a result of assisted conception treatment such as IVF<strong>and</strong> the chances are you will give birth to a healthy baby. But aswell as huge benefits, all medical treatments carry some risks.<strong>The</strong>re is no way of ruling out the slight chance of problems, nomatter how the baby was conceived, <strong>and</strong> most problems arerelatively minor. You may find it hard, but try to relax <strong>and</strong> enjoyyour pregnancy if you possibly can. You have come on a longjourney <strong>and</strong> now you are about to set out on another.YOU ASK…Will I be more likely to miscarry after fertilitytreatment?<strong>The</strong> average rate of miscarriage following IVF is slightlyhigher than following natural conception. This is because,firstly, women who have fertility treatment will have apregnancy test very early on in the pregnancy. A womanwho conceived naturally may experience what sheconsiders to be a ‘late period’ when in fact an embryo hasbeen created, but failed to implant. Secondly, the risk ofmiscarriage rises with the mother’s age. Women who havefertility treatment tend, on average, to be older than thosewho conceive naturally.I’ve been told my risk of an ectopic pregnancy ishigher because my tubes are blocked or damaged.What is this?An ectopic pregnancy is one in which the embryo startsto grow outside the uterus, usually in the fallopian tube,but sometimes in the ovary, cervix or elsewhere in theabdomen. <strong>The</strong> risk is slightly higher if your tubes are notworking properly.Tell-tale signs to watch out for include pains low down inyour stomach <strong>and</strong> vaginal bleeding. If you do experienceeither of these, get medical advice immediately. Ultrasoundscans <strong>and</strong> blood tests can help to confirm the diagnosis.For further information visit www.hfea.gov.uk | 39
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Moving onSOMETIMES TREATMENT DOESN’T WORK AND YOU MAY NEED TIME TO RECOVERPHYSICALLY AND EMOTIONALLY BEFORE THINKING ABOUT TRYING AGAINAfter the physical stress of treatment <strong>and</strong> thebuild-up of hopes, it can be devastating ifyour treatment doesn’t work. Many expertsrecommend that you wait for a couple ofmonths before trying again, which gives youa break from the stress of treatment <strong>and</strong> achance for your body to recover.You may want to talk to your specialist aboutwhether to try again - using the same or adifferent method - <strong>and</strong> whether there is anythingyou can do to boost your chances ofconception. Seeing a counsellor can also helpyou to talk through your feelings.Remember that, just as in any pregnancy, manyembryos are lost early on. Were you not havingtreatment, you might just think this is a late period,rather than a miscarriage. But when you arehaving fertility treatment, you’re only too awarethat the embryo transferred to your womb hasfailed to implant <strong>and</strong> that you have ‘miscarried’.<strong>The</strong> reasons why<strong>The</strong>re are two main reasons whythings can go wrong.1. Treatment may have to be cancelledbefore the eggs are collected orbefore the embryos are put back inthe womb if:the ovaries don’t respond to thedrugs used to stimulate eggproductionthe ovaries over-respond (ovarianhyper-stimulation) to the drugs usedto stimulate egg productionno eggs are found during eggcollection - for example, if the follicles(egg sacs) have developed but theyare found to be emptythe collected eggs don’t fertilise sothere are no embryos to betransferred to the wombthe embryos fail to develop in thelaboratory, so cannot be transferredto the womb.2. <strong>The</strong> embryos fail to develop in thewomb. This is the most commonreason for treatment beingunsuccessful. <strong>The</strong>re is often noobvious explanation but one of thefollowing may be the reason:Embryos have a reduced chance ofimplanting. <strong>The</strong> egg may not havematured properly in the first place, ormay not have divided as it shouldafter fertilisation.Chromosome problems. Manyembryos that look healthy have faultychromosomes - the structures insidecells that contain genes <strong>and</strong> controlhow the cell works <strong>and</strong> what it does.New pre-implantation geneticscreening (PGS, see page 25) is atechnique that can be used to detectsome chromosomal problems. Thiscan make it easier for doctors toexclude embryos with such problems,<strong>and</strong> transfer other embryos instead.Poor blood flow to the womb. Even ifthere is nothing wrong with the qualityof the embryos, if circulation to thewomb is poor, you have less chance ofgetting pregnant <strong>and</strong> a greater chanceof miscarriage if you do conceive.Next stepsWhether you have had one or more triesat fertility treatment, sooner or later youmay have to decide whether or not togive it up. You may feel you cannotafford more treatment, financially oremotionally, or your specialist may tellyou that you have little or no chance ofconceiving. Alternatively, you may justfeel that enough is enough <strong>and</strong> yousimply want to get on with your life.It is important that you feel you aremaking a choice to stop treatment, <strong>and</strong>that it is not a sign that you have failed, ornot done enough. Of course, it need notmean giving up all hope of having children- you may wish to explore the possibilityof other options, such as adopting <strong>and</strong>fostering. Remember, there are no wrongor right choices, just the one that is rightfor you. It’s often helpful to talk to acounsellor, or to others who have been ina similar situation, as you come to thisdecision about how you can best ‘moveon’. <strong>The</strong>re is a national organisation, Moreto Life, which provides support for peoplewho are exploring what life withoutchildren has to offer (see page 45).40 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility<strong>The</strong> ‘Immunology Question’A few clinics may suggest immunologicaltreatment. Some experts believe thatthere is a link between a number ofimmunological abnormalities <strong>and</strong>infertility, IVF failure or pregnancy loss.<strong>The</strong>se are sometimes thought to berelated to the level of ‘natural killer cells’or NK cells.Such tests <strong>and</strong> any recommendedtreatment can be expensive <strong>and</strong> it is agood idea to discuss the risks <strong>and</strong>benefits in detail with your clinic. To date,the view of the Royal College ofObstetricians <strong>and</strong> Gynaecologists(RCOG) is that there is not enoughavailable data to justify the blood tests,endometrial biopsies <strong>and</strong> steroids thatmay be involved. <strong>The</strong> <strong>HFEA</strong> supportsthis view <strong>and</strong> will continue to monitor<strong>and</strong> review the available evidence forsuch treatments.For more information, visitwww.hfea.gov.uk/ForPatients<strong>and</strong> www.rcog.org.ukOur story: Our decision evolved over about five yearsBarbara, an IT consultant, hadto have an ovary removed as a resultof an ovarian cyst, <strong>and</strong> she also hadblocked fallopian tubes. Her husb<strong>and</strong>Jeremy has low sperm motility.Despite four attempts at IVF,treatment failed to work <strong>and</strong> theydecided not to carry on.Barbara tells their storyTreatment time‘We went private because the NHSwaiting lists for treatment were long<strong>and</strong> we had the funds to pay. After fourfailed cycles the hospital suggesteddonor treatment. We decided to giveourselves time to consider this as wellas adoption but eventually decided notto pursue treatment.’Feelings‘Although I’m a positive person it wasexhausting keeping up a front <strong>and</strong> Iwithdrew from a lot of activities. Ourdecision not to pursue treatment oradoption evolved over about five years.I can look at it reasonably strongly nowbut deep down I am still angry at theunfairness of it all.’‘I told my boss who was underst<strong>and</strong>ing,but I didn’t tell anyone else at work<strong>and</strong> shortly after ending treatment,I switched jobs - partly I think inretrospect to get away from anenvironment I associated with loss <strong>and</strong>stress. My closest friends weresympathetic but regular chats with mymom who lives in Canada were the bestsupport while my mother-in-law gave methe hugs <strong>and</strong> comfort that I missed frommy own mom. My dad didn’t really knowwhat to say <strong>and</strong> would start talkingabout my brother’s children -as though talking about them would‘encourage’ me to be successful at IVF!’Our relationship‘It put a strain on our relationshipespecially immediately after we hadstopped treatment <strong>and</strong> before wewere really able to think about movingon. We were both so ‘lost’ that if oneof us had made a move to chuck it inthe other might not have had thestrength to do anything about it. But westuck it out, stayed close - even withouttalking about it a huge amount - timemarched on, <strong>and</strong> we both startedrealising that life is good, although it’snot necessarily what we would havechosen <strong>and</strong> we are thankful that wehave each other.’Our tipsTake it a step at a time.Don’t let fear stop you whether it’sto continue with treatment or stop.Don’t automatically assume thatothers will underst<strong>and</strong> what you’regoing through.If people say or do somethinginsensitive they aren’t necessarilytrying to hurt you. Choose a‘technique’ for dealing with it, such assilently counting to ten while smilingat them - they’ll get the hint - <strong>and</strong> inmost cases will feel horrified thatthey’ve hurt you.Making acomplaintIf you are not happy with your clinic, orfeel things went wrong because ofsomething they did or did not do, youmay want to complain. All licensedclinics have a proper complaintsprocedure <strong>and</strong> a named person toh<strong>and</strong>le complaints. Minor complaints canoften be dealt with on the spot.Before you decide to make a complaint,you may wish to consider what kindof outcome you are hoping for fromthe clinic. Do you, for example, wantthem to:investigate the matter?accept they have made a mistake<strong>and</strong> apologise to you?take disciplinary action against amember of staff?offer you compensation?reassure you that the same thing willnot happen again to another patient?a combination of these actions?For more information about theprocess of making a complaint (whichdiffers depending on whether yourtreatment is NHS funded or whether youare paying for your own treatment), visitwww.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 41
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Clinics licensed by the <strong>HFEA</strong>( as at 1 March 2007)For more information about each of these clinics, including the range of services theyprovide, whether they treat NHS or fee-paying patients <strong>and</strong> contact details, please go to theFind A Clinic section of our website: www.hfea.gov.uk/ForPatientsScotl<strong>and</strong>1 Aberdeen Fertility Centre2 Ninewells Hospital, Dundee3 Lanarkshire Acute Hospital NHSTrust, Airdrie4 Edinburgh Assisted Conception Unit5 Glasgow Nuffield Hospital6 Glasgow Royal Infirmary84 Glasgow Centre for ReproductiveMedicineEngl<strong>and</strong> (by region)North East7 Newcastle Fertility Centre at Life8 Centre for Assisted Reproduction,Gateshead9 Sunderl<strong>and</strong> Fertility Centre10 Hartlepool General Hospital11 Bishop Auckl<strong>and</strong> General Hospital12 London Women’s Clinic, Darlington13 Clevel<strong>and</strong> Gynaecology <strong>and</strong> FertilityCentre, Middlesbrough14 <strong>The</strong> James Cook University Hospital,MiddlesbroughNorth West15 St Mary’s Hospital, Manchester16 CARE Manchester17 Manchester Fertility Services18 Hewitt Centre for ReproductiveMedicine, Liverpool Women’s HospitalYorkshire <strong>and</strong> the Humber19 ACU Leeds20 Clarendon Wing, Leeds GeneralInfirmary21 Hull IVF Unit22 CARE Sheffield23 Centre for Reproductive Medicine,SheffieldEast Midl<strong>and</strong>s24 Queens Medical Centre Fertility Unit,Nottingham25 NURTURE, Nottingham26 CARE Nottingham27 Derby City General Hospital28 Leicester Fertility Centre29 CARE NorthamptonWest Midl<strong>and</strong>s30 Burton Hospitals NHS Trust, Burtonupon Trent31 Shropshire <strong>and</strong> Mid-Wales FertilityCentre, Shrewsbury32 St Jude’s Women’s Hospital,Wolverhampton33 BMI Priory Hospital, Birmingham34 Midl<strong>and</strong> Fertility Services, Aldridge35 Birmingham Women’s Hospital36 Centre for Reproductive Medicine,CoventryEast37 <strong>The</strong> Fertility Unit, PeterboroughDistrict Hospital38 <strong>The</strong> Rosie Hospital, Cambridge39 Bourn Hall Clinic, Cambridge40 Isis Fertility Centre, Colchester41 Brentwood Fertility Centre42 Essex Fertility Centre, Buckhurst HillGreater London43 London Female <strong>and</strong> Male FertilityCentre, Highgate44 Homerton University Hospital,Hackney45 CRM London, Marylebone46 Reproductive Medicine Unit,UCL Hospital NHS Trust, Holborn47 North East London Fertility Services,Ilford48 UCH London, Camden49 IVF Hammersmith, Acton50 Assisted Reproduction <strong>and</strong>Gynaecology Centre, Marylebone51 <strong>The</strong> Centre for ReproductiveMedicine, Barts <strong>and</strong> the London53 <strong>The</strong> Lister Fertility Clinic, Chelsea54 London Women’s Clinic, Marylebone55 <strong>The</strong> Harley Street Fertility Centre,Marylebone56 Cromwell IVF <strong>and</strong> Fertility Centre,Chelsea57 London Fertility Centre, Marylebone58 Chelsea <strong>and</strong> Westminster Hospital,Fulham59 <strong>The</strong> Bridge Centre, London Bridge60 Guy’s Hospital, WaterlooGreater London (cont)61 ACU King’s College Hospital,Camberwell62 Queen Mary’s Hospital, Sidcup63 Shirley Oaks Hospital, Croydon64 BMI Chelsfield Park ACU, OrpingtonSouth East65 Oxford Fertility Unit66 BMI <strong>The</strong> Chiltern Hospital FertilityServices Unit, Great Missenden67 <strong>The</strong> Woking Nuffield Hospital68 BMI <strong>The</strong> Chaucer Hospital,Canterbury70 Wessex Fertility Limited,Southampton71 <strong>The</strong> Princess Anne Hospital FertilityUnit, Southampton72 BMI <strong>The</strong> Esperance Hospital, SussexDowns Fertility Centre85 South East Fertility Unit, TunbridgeWells86 <strong>The</strong> Agora Gynaecology <strong>and</strong> FertilityCentreSouth West73 Southmead Hospital, Bristol74 Centre for Reproductive Medicine,University of Bristol75 Bath Assisted Conception Clinic76 Salisbury Fertility Centre77 Peninsular Centre for ReproductiveMedicine, Exeter78 BMI <strong>The</strong> Winterbourne Hospital,Dorchester79 South West Centre for ReproductiveMedicine, PlymouthWales80 London Women’s Clinic, Swansea81 Cardiff Assisted Reproduction UnitNorthern Irel<strong>and</strong>82 Regional Fertility Centre, Belfast83 Origin Fertility Care, Belfast42 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility1Scotl<strong>and</strong>84 3564243Greater4445 4647London4849 50 5153 54 5556 575860 5961636264NorthernIrel<strong>and</strong>8283NorthWestNorthEast7891011121413Yorkshire <strong>and</strong>the Humber192021Wales80778115 1618 1724252627 EastMidl<strong>and</strong>s3031 32 2833373435 36West 293839Midl<strong>and</strong>s737475South West782322657670716667SouthEast4142London857286East406879For further information visit www.hfea.gov.uk | 43
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Useful contactsACeBabesACeBabes offers support on pregnancyfollowing fertility treatment, multiplebirths, donor conception for donors<strong>and</strong> recipients, decisions surroundingfrozen embryos, trying for siblings,deciding to end treatment, <strong>and</strong> tellingchildren how they were conceived.Provides a quarterly newsletter,sub-group news sheets, meetings,personal contacts for specific conditions<strong>and</strong> an interactive website.Tel: 0845 838 1593Website: www.acebabes.co.ukBritish Infertility CounsellingAssociation (BICA)BICA aims to promote high quality,accessible counselling services for thosewith fertility problems. It offersinformation to patients seeking details ofcounsellors specialising in infertility.Tel: 01372 451 626Website: www.bica.netCancerbackupThis charity offers independent,accessible information, practical advice<strong>and</strong> support for people affected bycancer. Its range of information bookletsincludes how cancer treatments canaffect fertility (<strong>and</strong> the future fertility ofteenage patients).Tel: 0808 800 1234Website: www.cancerbackup.org.ukChild Bereavement TrustThis charity’s philosophy is based onlearning from families who haveexperienced the death of a baby or childor from children who have experiencedthe death of their mother, father, brotheror sister.Tel: 0845 357 1000Website: www.childbereavement.org.ukChildlessness Overcome ThroughSurrogacy (COTS)<strong>The</strong> main objective of COTS is to passon collective experience to surrogates<strong>and</strong> would-be parents, helping them tounderst<strong>and</strong> the implications ofsurrogacy.Tel: 0844 414 0181Website: www.surrogacy.org.ukDaisy Network PrematureMenopause Support GroupDaisy Network provides support <strong>and</strong>information for women who have gonethrough an early menopause. Memberscan speak to others who have beenthrough egg donation cycles, bothsuccessfully <strong>and</strong> unsuccessfully. Alsopublishes factsheets <strong>and</strong> a quarterlynewsletter <strong>and</strong> has an annualconference.Tel: 0845 122 8616Website: www.daisynetwork.org.ukDonor Conception Network(DC Network)DC Network provides contact <strong>and</strong>support for people who have childrenconceived, or who plan family creation,using donated gametes throughdonor insemination (DI) <strong>and</strong> IVF withdonor sperm or donated eggs. Alsoprovides support for adult offspring ofdonor conception.Tel: 020 8245 4369Website: www.dcnetwork.orgGenetic Interest Group (GIG)A national alliance of patientorganisations with a membership of over130 charities which support children,families <strong>and</strong> individuals affected bygenetic disorders.Tel: 020 7704 3141Website: www.gig.org.ukInfertility Network UK (I N UK)I N UK provides practical <strong>and</strong> emotionalsupport to those experiencing difficultiesin conceiving whatever stage of theirjourney they are at. <strong>The</strong>re is a regionalnetwork <strong>and</strong> local support groups, <strong>and</strong>the charity also produces factsheets<strong>and</strong> other information, including a video.<strong>The</strong>y have a telephone advice line,medical advisers <strong>and</strong> a website withnews, forums <strong>and</strong> information.Tel: 0800 008 7464Website: www.infertilitynetworkuk.com44 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityMiscarriage Association<strong>The</strong> Association provides support <strong>and</strong>information on pregnancy loss.Tel: 01924 200799Website:www.miscarriageassociation.org.ukMore to LifeA national support network providing asupport service for people exploring whatlife without children has to offer - bothinvoluntary childlessness, <strong>and</strong> those forwhom fertility treatment is no longer aconsideration.Tel: 08701 188 088Multiple Births Foundation<strong>The</strong> Multiple Births Foundation providesprofessional support <strong>and</strong> information aboutall aspects of multiple births.Tel: 020 8383 3519Website: www.multiplebirths.org.ukNational Childbirth Trust (NCT)<strong>The</strong> NCT helps parents to have anenriching experience of pregnancy, birth<strong>and</strong> early parenthood, providing localsupport <strong>and</strong> contacts for socialnetworking. It runs antenatal classes <strong>and</strong>provides information on maternity issues,breastfeeding <strong>and</strong> postnatal support,including specialist groups for Caesareans<strong>and</strong> miscarriage.Tel: 0870 770 3236Website:www.nctpregnancy<strong>and</strong>babycare.comEndometriosis UK<strong>The</strong> Society provides a helpline, localgroups <strong>and</strong> clubs, a newsletter <strong>and</strong> otherpublications, workshops <strong>and</strong> conferences.Tel: 0808 808 2227Website: www.endo.org.ukNational Gamete Donation Trust(NGDT)<strong>The</strong> NGDT was founded as a registeredcharity in April 1998 in order to raiseawareness of, <strong>and</strong> seek ways to alleviate,the shortage of sperm, egg <strong>and</strong> embryodonors in the UK. <strong>The</strong> NGDT is a centralreference point for donors, recipients <strong>and</strong>health professionals.Tel: 0845 226 9193Website: www.ngdt.co.ukNational Institute forClinical Excellence (NICE)NICE is part of the NHS. It is theindependent organisation responsible forhelping patients, health professionals <strong>and</strong>the public to make decisions abouttreatment <strong>and</strong> healthcare.Tel: 020 7067 5800Website: www.nice.org.ukPink Parents UKPink Parents’ services to lesbian, gay,bisexual <strong>and</strong> transgendered familiesincludes information <strong>and</strong> support to thosewho would like to have children.Tel: 08701 273 274Website: www.pinkparents.org.ukProject Group on AssistedReproduction (PROGAR)PROGAR campaigns in two main areas:for the right of people with fertility difficultiesto informed choice <strong>and</strong> quality of care,including counselling; <strong>and</strong> for the right ofpeople to have access to identifyinginformation about their genetic origin.Tel: 0121 622 3911Website: www.basw.co.uk/progarProgress Educational Trust (PET)This UK charity provides information <strong>and</strong>debate on assisted reproduction <strong>and</strong>human genetics, promoting discussionamong patients, the wider public <strong>and</strong>professionals on their social, legal <strong>and</strong>ethical implications. PET holds regularpublic debates <strong>and</strong> conferences <strong>and</strong>produces a free web <strong>and</strong> email news <strong>and</strong>comment service, BioNews, with supportfrom the Department of Health.Tel: 020 7278 7870Website: www.progress.org.ukStillbirth <strong>and</strong> Neonatal Death Society(SANDS)SANDS provides support for parents <strong>and</strong>families whose baby is stillborn or diessoon after birth.Tel: 020 7436 5881Website: www.uk-s<strong>and</strong>s.orgSurrogacy UKA website <strong>and</strong> message board providingadvice on surrogacy in the UK. It was setup by Elizabeth Stringer <strong>and</strong> Carol O’Reilly,who have been involved in surrogacy since1994.Tel: 01531 821889 (10am-2pm)Website: www.surrogacyuk.orgTwins <strong>and</strong> Multiple Births Association(TAMBA)TAMBA provides support for families withtwins, triplets or more, <strong>and</strong> forprofessionals involved with their care. It hasa network of local twins clubs <strong>and</strong>specialist support groups, <strong>and</strong> providespublications <strong>and</strong> information packs.Tel: 0870 138 0509Website: www.tamba.org.ukUK DonorlinkA pilot voluntary contact register set up toenable people conceived through donatedsperm <strong>and</strong>/or eggs, their donors <strong>and</strong> halfsiblingsto exchange information <strong>and</strong> -where desired - to contact each other. <strong>The</strong>register is for anyone over 18 who wasconceived with donated sperm or eggs, orwho donated in the UK before the <strong>Human</strong><strong>Fertilisation</strong> <strong>and</strong> <strong>Embryology</strong>Act came into force in August 1991.Tel: 0113 278 3217Website: www.ukdonorlink.org.ukVerityVerity is a self-help organisation for womenaffected by polycystic ovary syndrome(PCOS) <strong>and</strong> is dedicated to improving thelives of sufferers.Website: www.verity-pcos.org.ukUseful websites<strong>The</strong>re are many websites that provideinformation about infertility <strong>and</strong>opportunities to ask questions <strong>and</strong>exchange personal experiences withothers. A few that patients havementioned to us are:www.fertilityfriends.co.ukwww.may-b-baby.co.ukwww.gettingpregnant.co.ukwww.ivf-infertility.comwww.singlemother.typepad.comwww.ivfworld.comLet us know of others you find helpful.<strong>The</strong> <strong>HFEA</strong> cannot vouch for the information supplied by other organisations mentioned in this Guide.Nor does the inclusion of such organisations’ details in the Guide imply any endorsement by the <strong>HFEA</strong>.For further information visit www.hfea.gov.uk | 45
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityGlossaryAb<strong>and</strong>oned Cycle:An IVF treatment cycle cancelledafter drug administration has begunbut before egg collection.Amniocentesis: Withdrawal ofamniotic fluid from the amniotic saccontaining the foetus, usuallybetween week 14 <strong>and</strong> 18 ofpregnancy. Genetic diseases of thefoetus can be revealed by tests onthis fluid <strong>and</strong> the foetal cells itcontains.Amnion: <strong>The</strong> inner membrane of thesac in which the embryo develops.Amniotic fluid: <strong>The</strong> fluid filling thecavity between the embryo <strong>and</strong> theamnion.Assisted hatching: Mechanical, laseror chemical breaching of the zonapellucida (outer layer) of the egg.Assisted Reproductive Technologies(ARTs): Collective name for all artificialtechniques used to assist women toconceive children, including IVF <strong>and</strong>ICSI.Asthenozoospermia: A below normalnumber of sperm in the maleejaculate.Azoospermia: <strong>The</strong> complete absenceof sperm in male ejaculate.Blastocyst: An embryo that hasdeveloped for five to six days afterfertilisation.Blastomere: A cell taken (by biopsy)from a blastocyst.Cell: <strong>The</strong> basic unit of all livingorganisms. Complex organisms suchas humans are composed of somatic(body) cells <strong>and</strong> germ line(reproductive) cells.Cervical mucus: Secretionssurrounding the cervical canal, whichduring ovulation, alter in amount <strong>and</strong>texture to allow sperm penetration.Cervix: <strong>The</strong> narrow passage at thelower end of the uterus (womb),connecting to the vagina.Chlamydia: A sexually transmitteddisease which may remainundetected for a long time. It maydamage female <strong>and</strong> malereproductive systems, causinginfertility.Chorion: <strong>The</strong> outer membrane tissueof the primitive placenta.Chorion villus sampling (CVS):Removing a small amount (biopsy) ofplacental chorionic villi for geneticanalysis, usually between week 8 <strong>and</strong>12 of pregnancy.Chromosome: Threadlike structure ofDNA with associated proteins locatedin the cell nucleus, containing geneswhich carry genetic information.Cleavage: <strong>The</strong> division of the zygote(cell formed by fertilisation) toproduce a blastocyst.Clomid: A drug used in stimulated DI<strong>and</strong> IUI cycles.Clomiphene: A fertility drug used tostimulate the production of follicles.Congenital malformations: Anymalformation seen at birth, eitherresulting from genetic (inherited) orenvironmental causes.Counselling: Discussions aimed atgiving emotional support to helppatients underst<strong>and</strong> <strong>and</strong> cope withthe consequences of infertilitytreatment.Cryopreservation: <strong>The</strong> storage ofgametes or embryos by freezing atlow temperatures.Cytomegalovirus (CMV): A memberof the herpes groups of viruses. Mostadults <strong>and</strong> children who catch CMVhave no symptoms, although somepeople may get a fever, sore throat,fatigue <strong>and</strong> swollen gl<strong>and</strong>s. CMV is ofmost risk to unborn children ofwomen who get CMV for the firsttime during pregnancy. About 7 to10% of these babies will havesymptoms at birth or will developdisabilities including mentalretardation, small head size, hearingloss, <strong>and</strong> delays in development.DeoxyriboNucleicAcid (DNA): <strong>The</strong>major constituent of chromosomes,<strong>and</strong> the hereditary material of all livingorganisms.Dizygotic: Derived from two (di) eggs(zygote). Dizygotic twins form whentwo separate eggs are fertilised byseparate sperm.Donor: Person who allows theirgametes or embryos to be used forfertility treatment or researchpurposes. Although the geneticparents of children created using theirgametes, donors are not the legalparents when treatment wasprovided in a UK licensed clinic.Donor Insemination (DI): <strong>The</strong>introduction of donor sperm into thevagina, the cervix or womb itself.Egg or oocyte: <strong>The</strong> gamete producedby a woman during her monthlycycle.Egg collection or egg retrieval:Collection of eggs from a woman’sovary using an ultrasound <strong>guide</strong>dneedle, or a laparoscope (a fibreoptictelescope used for looking into theabdomen) <strong>and</strong> needle.Egg donation: Donation of eggs by afertile woman for the treatment ofothers or for research.Egg sharing: An arrangement with aclinic to reduce IVF treatment costs,where a woman undergoes atreatment cycle, donates some of hereggs, but uses some herself.Embryo: A fertilised egg that has thepotential to develop into a foetus.Embryo biopsy: <strong>The</strong> removal <strong>and</strong>culture of one or two cells from anembryo in vitro prior to geneticscreening.Embryo division: Splitting of anembryo grown in vitro, at a very earlystage, into two or more sections.Each section can be grownseparately producing multiple clones(fission cloning) of the single originalembryo.46 | For further information visit www.hfea.gov.uk
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Embryo freezing <strong>and</strong> embryo storage:Spare embryos can be frozen(cryopreservation) <strong>and</strong> stored forfuture use.Embryo transfer: <strong>The</strong> replacement ofembryos back into the femalepatient.Endometriosis: A female condition inwhich endometrial cells, whichnormally line the uterus, implantaround the outside of the uterus<strong>and</strong>/or ovaries, causing internalbleeding, pain <strong>and</strong> reduced fertility.Endometrium: <strong>The</strong> lining of the wombwhich grows <strong>and</strong> sheds during anormal menstrual cycle <strong>and</strong> whichsupports a foetus if a pregnancyoccurs.Epididymis: A highly convoluted tubeabout seven metres long connectingthe testes to the vas deferens. Spermmoves along the tube <strong>and</strong> is storedin the lower part until ejaculation.Fallopian tube(s): <strong>The</strong> pair of tubeswhich lead from the ovaries to theuterus (womb). After an egg isreleased from one of the ovaries, it istransported through a Fallopian tubeto the uterus. <strong>The</strong> tubes are the siteof fertilisation in natural conception.<strong>Fertilisation</strong>: <strong>The</strong> penetration of anegg by a sperm resulting in theformation of an embryo. Naturallyfertilisation occurs in the woman’sbody (in vivo), but it can also occur inthe laboratory (in vitro).Fibroid: A ball of fibrous musculartissue which may grow in themuscular wall of the uterus. This cancause pain <strong>and</strong> excessive menstrualbleeding <strong>and</strong> result in impairedfertility.Flow cytometry (sperm sorting): Amethod of sperm sorting used forsex selection. X <strong>and</strong> Y chromosomebearingsperm are stained withdifferent fluorescent dyes, <strong>and</strong> canthen be sorted by colourFoetus: <strong>The</strong> term used for an embryoafter the eighth week of developmentuntil birth.Follicle(s): A small sac in the ovary inwhich the egg develops.Follicle-stimulating Hormone (FSH): Apituitary hormone which stimulatesthe follicle production by the ovary.Often administered in assistedconception to stimulate production ofseveral follicles (ovulation induction).Gamete: <strong>The</strong> male sperm or femaleegg which fuse together to form azygote.Gamete Intrafallopian Transfer (GIFT):A procedure in which eggs areretrieved from a woman, mixed withsperm <strong>and</strong> immediately replaced intoone of the woman’s Fallopian tubes,so fertilisation occurs inside the body(in vivo).Gene: <strong>The</strong> unit of inheritance.Everyone inherits two copies of eachgene. A dominantly inherited geneticdisease occurs when only one copyof the gene is sufficient to producethe disease e.g. Huntington’s chorea.A recessively inherited disease onlyoccurs if both copies of the defectivegene are present e.g. Tay-Sachs’disease, Sickle cell disease.Genome: <strong>The</strong> basic set of genes inthe chromosomes in any cell,organism or species.Gonadotrophin Releasing Hormone(GnRH): Hormone released by thehypothalamus which stimulates thepituitary to produce LuteinisingHormone (LH) <strong>and</strong> Follicle-stimulatingHormone (FSH).Gonadotrophins: Drugs used tostimulate the ovaries similar to GnRH.Gradient sperm sorting methods:Way of sorting X <strong>and</strong> Ychromosomes containing sperm, forsex selection.<strong>Human</strong> Chorionic Gonadotrophin(HCG): A protein hormone usuallysecreted by the chorionic villi of theplacenta. Its presence in the maternalblood or urine indicates pregnancy.HFE Act: <strong>The</strong> <strong>Human</strong> <strong>Fertilisation</strong> <strong>and</strong><strong>Embryology</strong> Act 1990.<strong>HFEA</strong>: <strong>Human</strong> <strong>Fertilisation</strong> <strong>and</strong><strong>Embryology</strong> <strong>Authority</strong>.Hysterectomy: <strong>The</strong> surgical removalof the uterus (womb).Hysterosalpingogram: An x-ray of theFallopian tubes, through which dye ispassed, to see if they are obstructed.Implantation: Where an embryoembeds itself in the uterus lining,after passage through the Fallopiantubes.Impotence: Term for a man’s inabilityto perform sexual intercourse or gainan erection.Inner cell mass: A clump of cellsgrowing within <strong>and</strong> to one side of theblastocyst from which the embryodevelops.Insemination: <strong>The</strong> artificial placing offreshly ejaculated or frozen sperm inthe female reproductive tract.Intra-cytoplasmic Sperm Injection(ICSI): Where a single sperm isdirectly injected into the egg.Intra-uterine Insemination (IUI):Insemination of sperm into the uterusof a woman.Intra Vaginal culture (IVC): A methodof incubating sperm <strong>and</strong> aspiratedoocytes together in a container heldin a woman’s vagina, allowing in vitrofertilisation without using complexlaboratory facilities.In Vitro <strong>Fertilisation</strong> (IVF): <strong>Human</strong>eggs <strong>and</strong> sperm mixed together in alaboratory to achieve fertilizationoutside the body. <strong>The</strong> embryosproduced may then be transferredinto a female patient.In vitro: Performed outside the body(i.e. in the laboratory).In vivo: Performed in the body.Karyotype: <strong>The</strong> microscopicappearance of a set ofchromosomes, including theirnumber, shape <strong>and</strong> size.For further information visit www.hfea.gov.uk | 47
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityGlossaryLaparoscopy: Examination of thepelvic or other abdominal organs witha fibreoptic telescope insertedsurgically below the naval. Duringlaparoscopy, suction applied to theneedle can be used to recover eggsfrom follicles in the ovary.Licence: A legal document stipulatingterms <strong>and</strong> conditions for which acentre may carry out a licensablefertility treatment at a specifiedpremise.Live birth rate: <strong>The</strong> number of livebirths achieved from every 100treatment cycles started.Luteinising Hormone (LH): Hormonereleased by the pituitary gl<strong>and</strong> inresponse to GonadotrophinReleasing Hormone (GnRH)production. Essential for developmentof eggs <strong>and</strong> sperm.Menstrual period/Menstruation: <strong>The</strong>monthly bleed which takes place if nopregnancy occurs, caused by thesloughing off of the womb’s lining.Menstrual cycle: A woman’s monthlycycle where the egg is released froman ovary, the uterus develops <strong>and</strong>finally blood <strong>and</strong> tissue are lost viathe vagina if a pregnancy does notoccur.Microsurgical Epididymal SpermAspiration (MESA): Extractingrelatively mature sperm from theepididymis using a small needle.Monozygotic: Meaning single (mono)egg (zygote). Monozygotic twins formwhen one fertilised ovum separatesinto two identical zygotes.Morula: <strong>The</strong> ball of cells formingabout 3 - 4 days after the cleavage ofthe fertilised ovum.Multiple birth: When a multiplepregnancy actually results in the birthof two or more babies.Multiple birth rate: <strong>The</strong> percentage ofall births in which more than onebaby was born.Multiple pregnancy: A pregnancywhere two or more foetuses developat one time in the uterus (womb).Neonatal death: <strong>The</strong> death of a babywithin 28 complete days of delivery.Nucleus: <strong>The</strong> part of a cell whichcontains the genetic material, DNA.Oestrogen/Oestradiol: Female sexhormone produced by the ovary.Levels fluctuate during the menstrualcycle.Oligozoospermia: Low sperm count.Less than twenty million sperm permillilitre. Severe if less than five millionsperm per millilitre.Oocyte: <strong>The</strong> female gamete (egg).Ovary: <strong>The</strong> female reproductive organproducing oocytes from hormonestimulatedgerm cells.Ovarian Hyperstimulation Syndrome(OHSS): A serious complicationfollowing stimulation of the ovarieswith gonadotrophin drugs.Ovulation: <strong>The</strong> release of an egg froma follicle in the ovary.Ovum: <strong>The</strong> female gamete (egg).Partial Zona Dissection (PZD): Inconjunction with IVF, making a smallhole in the egg’s gelatinous coating,with a small glass needle, to assistsperm to reach the outer eggmembrane.Percutaneous Epididymal SpermAspiration (PESA): A technique forsperm recovery. A fine needle ispassed into either the epididymalregion of the testes, or the coiledtubing outside the testicles thatstores sperm (epididymis), <strong>and</strong> spermrecovered by gentle suction.Peritoneal cavity: <strong>The</strong> cavity of theabdomen where the Fallopian tubes<strong>and</strong> the uterus are situated.Perinatal Mortality Rate: Perinatalmortality is the total number of foetaldeaths <strong>and</strong> neonatal deaths.Pituitary: Gl<strong>and</strong> in the brain whichproduces many hormones includingFollicle-stimulating Hormone (FSH)<strong>and</strong> Luteinising Hormone (LH).Polycystic Ovarian Syndrome:Condition where many small cystsform on the ovary, resulting inhormonal imbalances which cancause infertility. Treatment involvesdrugs or surgery.Polymerase Chain Reaction: Aprocess used in DNA analysis.Pregnancy rate: <strong>The</strong> number ofpregnancies achieved from every 100treatment cycles commenced.Preimplantation Genetic Diagnosis(PGD): <strong>The</strong> removal of one or twocells from an embryo to test forspecific genetic disorders/characteristics prior to embryotransfer.Preimplantation Genetic Screeningfor Aneuploidy (PGS): <strong>The</strong> removal ofone or two cells from an embryo, fortesting to ensure the chromosomenumber is correct (euploidy) <strong>and</strong> notmore or less than usual (aneuploidy).Primitive streak: Thickening in surfaceof embryos which results in the firstclearly recognisable stage inembryonic development.Profasi: Purified <strong>Human</strong> ChorionicGonadotrophin used in assistedconception to mature follicles <strong>and</strong>cause ovulation to occur.Progesterone: Hormone produced byboth the ovary <strong>and</strong> corpus luteumafter ovulation encouraging thegrowth of the lining of the womb.Prostate Gl<strong>and</strong>: A gl<strong>and</strong> whichsecretes an alkali solution uponejaculation making up a major part ofthe ejaculate.Selective reduction: <strong>The</strong> procedure inwhich one or more normal foetusesin a multiple pregnancy resulting fromassisted conception are destroyed.<strong>The</strong> procedure may be hazardous tothe remaining foetus(es).Seminiferous tubules: Very long <strong>and</strong>convoluted tubules which make upthe bulk of the testicles. It is here thatsperm is produced.48 | For further information visit www.hfea.gov.uk
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Sex selection: <strong>The</strong> sex of an embryois determined using PGD, in order toavoid sexlinked diseases.Sperm: Male gametes (or maturemale germ cells). Of the millions ofsperm present in the ejaculateroughly half carry X chromosomes,<strong>and</strong> half Y chromosomes. A singlesperm is called a spermatozoon.Sperm sorting: <strong>The</strong> separation ofsperm carrying X chromosomes fromthose carrying Y chromosomes priorto fertilisation, in order to determinethe sex of the offspring. Used for sexselection.Spermatid: An immature sperm cell.Stem cell: Reproduce indefinitely <strong>and</strong>have the capacity to develop(differentiate) into a large number ofdifferent cell types.Stillbirth: <strong>The</strong> birth of a dead infant.Stimulated cycle: A treatment cycle inwhich stimulation drugs are used toproduce more eggs than usual in thewoman’s monthly cycle.Stimulation drugs: Stimulate awoman’s ovaries to produce moreeggs than usual in a monthly cycle.Also known as superovulatory drugs.Subzonal sperm insertion (SUZI): Atechnique whereby one or severalsperm are injected directly throughthe zona pellucida (outer layer) of theoocyte.Superovulation/stimulation: <strong>The</strong>medical stimulation of the ovary withhormones to induce the productionof multiple egg-containing follicles ina single menstrual cycle.Swim up: Technique for separatingsperm, based on their ability to swimthrough a liquid.Teratozoospermia: Poor spermmorphology (shape) which causesinfertility.Testicular Sperm Aspiration (TESA):Sperm extraction technique whichinserts a needle into the lower regionof the testes to remove a small pieceof testicular tissue.Testicular Sperm Extraction (TESE):Sperm extraction technique involvesexposing testicular tissue through asmall cut in the scrotum <strong>and</strong> theremoval of a small piece of testiculartissue.Testis: Testicle or male gonad.Transvaginal aspiration: A method ofegg recovery in which a needle isinserted through the top of the vaginainto the ovary lining.Transvaginal oocyte recovery: <strong>The</strong>female bladder is emptied <strong>and</strong> aneedle passed through the vaginausing ultrasound guidance in order torecover eggs.Treatment cycle: One completelicensed treatment. Commences withdrug administration or firstinsemination.Trisomy: A syndrome reflecting thepresence of three chromosomes ofone type instead of the normalnumber of two. An example isTrisomy 21 resulting in Down’ssyndrome.Ultrasound: High frequency soundwaves used to provide images oftissues, organs <strong>and</strong> other internalbodily structures.Ultrasound-<strong>guide</strong>d aspiration: A nonsurgical,noninvasive method of eggrecovery using ultrasound images to<strong>guide</strong> the path of the oocyte recoveryneedle.Unstimulated cycle: A natural cyclewhere no drugs are given to stimulateegg production.Uterus: <strong>The</strong> female womb in whichthe embryo develops.Varicocele: A varicose vein on thetesticles. <strong>The</strong>se may cause testicleoverheating <strong>and</strong> be detrimental tosperm production.Vas Deferens: Pair of tubes whichconnect the epididymis to the urethra<strong>and</strong> transport sperm duringejaculation.Welfare of the child: <strong>The</strong> social <strong>and</strong>ethical considerations used whenconsidering the well-being of anindividual under the age of 18.Zona drilling: <strong>The</strong> use of chemicals todissolve the gelatinous coating of theegg leaving a hole through which thesperm can enter.Zona Pellucida: <strong>The</strong> transparentmembrane or shell surrounding theoocyte (egg).Zygote: <strong>The</strong> cell formed as a result offertilisation.Zygote Intra-fallopian Transfer (ZIFT):<strong>The</strong> transfer of embryos to theFallopian tubes for purposes ofachieving a pregnancy. Embryos aretransferred at the fertilised egg (onecell embryo) stage.For further information visit www.hfea.gov.uk | 49
<strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to Infertility | 2007/08Ask the clinicTHE FIRST CONSULTATION WITH A DOCTOR OR CLINIC CAN SOMETIMES BECONFUSING OR DIFFICULT. DO REMEMBER THAT CLINIC STAFF ARE THERETO HELP YOU AND WILL BE HAPPY TO DISCUSS YOUR QUESTIONS ANDCONCERNS WITH YOU. IT’S VITAL THAT YOU FEEL FULLY INFORMED ABOUT,AND COMFORTABLE WITH, THE RECOMMENDED TREATMENTSome patients find it helpful to keep a diary ofclinic appointments, cycle dates <strong>and</strong> otherinformation, such as notes from your consultations<strong>and</strong> questions that arise in between appointmentswhich you would like to raise next time.<strong>The</strong>re are many issues raised throughout thisGuide <strong>and</strong> you have probably also received a lot ofinformation from friends, doctors <strong>and</strong> the internet.We’ve listed some of the questions here that youmay also want to ask when you visit your clinic,to help you make the most of your consultation.What are the benefits of the treatment you’verecommended <strong>and</strong> why do you think it’s the bestoption for me?How many patients at your clinic have had thistreatment in the last two years, <strong>and</strong> how many ofthem have become pregnant/had a baby?Are there alternative treatments? If so, what dothey involve, <strong>and</strong> why do you think they are lesssuitable for me?What other options are available to me if thistreatment doesn’t work?How does my age affect the choice of fertilitytreatment?What drugs will I have to take, <strong>and</strong> what are the usualside effects they might have?Are there any alternatives to the drugs you havementioned?Can you break down all the costs involved in thistreatment? Are there any other costs that might arise?Is there any way these costs can be reduced?What lifestyle changes can I make to boost my chanceof success (eg, diet, exercise, stopping smoking, etc)?How will these help?What kind of counselling or advice service do youprovide? Is there a cost for this, or how many freesessions can I have?Does this clinic have a patient support group I can join,or are there other groups you would recommend?Could you tell me more about the assessmentprocess you will need to carry out before giving methe go-ahead for treatment (this is sometimes knownas the ‘welfare of the child’ assessment)?What happens next? Do I (<strong>and</strong>/or my partner) need todo anything now?50 | For further information visit www.hfea.gov.uk
2007/08 | <strong>The</strong> <strong>HFEA</strong> <strong>guide</strong> to InfertilityAcknowledgements<strong>The</strong> <strong>HFEA</strong> would like to thank the following individuals <strong>and</strong> organisations for their time <strong>and</strong> help incompiling the information in this year's <strong>HFEA</strong> Guide to Infertility:Clare Brown, Chief Executive, Infertility Network UKJennifer Hunt, Senior Infertility Counsellor, Hammersmith HospitalDr Maybeth Jamieson, Consultant Embryologist, Glasgow Royal InfirmaryWalter Merricks, Co-founder of the Donor Conception NetworkSusan Seenan, Communications Officer, Infertility Network UKJane Garton <strong>and</strong> Patsy Westcott for textTangerine for designOur thanks also to the many patients, past <strong>and</strong> present, who have provided helpful comments<strong>and</strong> suggestions.Above all, we would like to thank those who have been willing to talk about their personalexperience of treatment in this Guide, <strong>and</strong> to share what they have learned to help others.For further information visit www.hfea.gov.uk | 51
<strong>Human</strong> <strong>Fertilisation</strong> <strong>and</strong> <strong>Embryology</strong> <strong>Authority</strong>21 Bloomsbury StreetLondon WC1B 3HFTelephone: 020 7291 8200Website: www.hfea.gov.ukEmail: admin@hfea.gov.ukDesigned <strong>and</strong> produced by Tangerine-UK Ltd www.tangerine-uk.co.uk