Download the Pelvic Pain e-Booklet - Dr Susan Evans

ENDOMETRIOSISPELVIC PAINTable of ContentsIntroduction 3Period pain 4Bloating and bowel troubles 6Painful sex 8Bladder troubles 10Fatigue, anxiety and low mood 12Sudden pain on one side 14Pudendal neuralgia 15Bad headaches and migraines 16The chronic pain condition 17About us, and keeping in touchwith other women19Disclaimer and copyright 192

ENDOMETRIOSISPELVIC PAINIntroductionHow to use this bookThanks for getting our e-booklet!We know it’s hard to get the information youneed when you have pelvic pain. A bitawkward at times, and really annoying if noone seems to know what’s wrong with you.Don’t worry. We see women just like youevery day and want you to be well. You arecertainly not alone.The first step is to learn more about pelvicpain and we hope this ebook will help.Where do I start?To work out what you need, it’s a good idea tofirst think about how many days a month youhave pain:•Some women have pain with periods butare otherwise completely well. They havewhat doctors call ‘dysmenorrhoea’ andoften have a medical condition calledEndometriosis. The section in this ebookon ‘period pain’ may be all you need.•Other women have a mix of differentpains with pain of some kind almostevery day. They may also be tired,anxious or worn down by pain. They havewhat doctors call ‘chronic pelvic pain’.There is a section in this ebook on all thedifferent pains you may have.At the beginning, it’s a good idea to make alist of your problems. By keeping a list, youcan look back later and work out whichtreatments helped you most. You can alsosee how you have improved and feel goodabout yourself.If you have lots of problems, you might like tothink about which problem bothers you mostright now and work on that.The mix of pains we have included is the‘bigger picture’ of pelvic pain. It can include anirritable bowel, a painful bladder, painful sex,pelvic muscle pain, anxiety, low mood, fatigue,pelvic nerve pain, headaches, or suddenpains on one side.But isn’t there one thing that will helpeverything?Unfortunately, not yet.It is true that for many women, surgerythrough a telescope (called a laparoscope)can make a big difference to their pain. It is animportant part of pelvic pain management,especially if your major problem is period pain.However, there are some types of pain youcan’t see at a laparoscopy and can’t fix withsurgery. These pains are just as real as painsyou can see, but are treated in different ways.You may have been told that ‘everything looksnormal’, but your pain remains. You may haveworried that you are weak in some way.If you find this ebook useful, you are welcometo send it to friends, boyfriends and family.There are millions of women in the world withpelvic pain.If you like the e-booklet, you’ll lovethe book!The e-booklet is a great start, but you may stillhave questions and want to know more. Ourfull size book, ‘Endometriosis and Pelvic Pain’has much more information on all the differentpains and it’s really easy-to-read. There arestories of real women just like you, informationon fertility, and everything you need to knowbefore deciding whether or not to have anoperation. The book is available for $25Australian dollars atwww.drsusanevans.comor,With our best wisheswww.nzendo.co.nzSusan Evans and Deborah Bush3

ENDOMETRIOSISPELVIC PAINIf simpletreatmentsdon’t help,you may haveendometriosisPeriod PainDysmenorrhoeaPeriod pain is the commonest type ofpelvic pain, but what’s normal?None of us know what anotherwoman’s pain is like, and you mayhave wondered if your bad periodpain is really normal and you areweak in some way.What is normal period pain?Well, period pain should only beconsidered ‘normal’ if:• The pain is only there on thefirst 1 or 2 days of your period,and,• It goes away if you use the Pillor take period painmedicationsIf not, it is not normal.Severe period pain in young womenis a bigger problem now than it wasin the past. Our grandmothers oftenhad their first baby before they were20 years old. After that came yearsspent pregnant or breast-feeding untilmenopause arrived. Even if theirperiods were painful, at least theydidn’t have many of them.Girls start their periods earlier nowand become pregnant later. Theymay have 300 to 400 periods aheadof them before menopause.I don't think my pain is normal.What could it be?Painful periods can be due to:•Pain in the uterus (womb),especially if pain is on the first1-2 days of a period, or,•Pain from endometriosis,especially if pain is there formore than 1-2 days or doesn’tget better with the pillMany women with bad period painhave both these problems, and weknow that women with endometriosishave a more painful uterus than otherwomen, even if it looks normal.Am I too young to haveendometriosis?Endometriosis used to be thought ofas an uncommon problem of womenin their 30s and 40s. We now knowthat it is a common problem thatusually starts in the teens.Endometriosis in teens often looksdifferent at a laparoscopy and caneasily be missed. In older women it isoften a dark brown colour. In youngwomen it may look like tiny clearbubbles that can be hard to see.Teens often worry about beingdifferent from other girls. In fact, astudy of 1000 girls aged 16-18 yearsin Canberra, Australia (MDOT study)found that 21% of the girls hadsevere pain with periods and 26%had missed school because of periodsymptoms.It’s really important that teenage girlsget good care so they can livenormally.Endometriosis New Zealand has awebsite just for teens atwww.me.school.nzYou may have been toldthat your period pain isnormal, just part of being awoman, or that you shouldhave a baby.There is much more thatcan be done now4

What can I do about period pain?Could I have endometriosis?Simple things firstPeriod pain medications work best whenthey are taken before the pain gets bad, sokeep some with you all the time and take themregularly during periods. The commonly usedmedications include ibuprofen 200mg,naproxen 275mg, or diclofenac 25mg.Take two straight away then one, three timesa day with food. All these medications cancause stomach irritation, so are best takenwith food.The Contraceptive Pill is often helpful. Askyour doctor for a pill with more progestogenthan estrogen for the best effect. Manywomen skip periods on the pill because fewerperiods means less pain. To do this, you needto be on a pill where all the hormone tabletsare the same colour. Plan a period only every2-3 months or preferably not at all. Ask yourdoctor or pharmacist how to do this.A Mirena ® intrauterine device (IUCD) iscurrently the most effective treatment for painfrom the uterus and lasts up to 5 years. Itslowly releases a progestogen medication tothe uterus that makes periods lighter, lesspainful and it is also a contraceptive.Remember that it is common to have irregularbleeding and crampy pains for the first fewmonths, but these problems usually settle.If you have not had children, or have a tenderpelvis you can ask to have it inserted under ananaesthetic if you wish. The best time is justafter a period, sometimes at the same time asa laparoscopy.Complementary therapies that can helpinclude acupuncture, Vitex Agnus Castus(1000mg daily) and magnesium (100-200mgevery 2 hours at period time for 2 days only).If simple treatments for period pain don't help,you may have endometriosis. This is wheretissue like the lining of the uterus grows inplaces outside the uterus around the pelvis.Most endometriosis can’t be seen on anultrasound.When simple things don’t helpLaparoscopy. A laparoscopy is an operationwhere a doctor puts a telescope through asmall cut in your umbilicus (belly button) tolook inside your pelvis. He or she can then:• Diagnose if any endometriosis ispresent, and• Remove the endometriosis if possibleThere are different types of surgery availableto treat endometriosis. Sometimes theendometriosis is excised which means cut outand sometimes it is cauterised (diathermied)which means burnt.Some laparoscopies for endometriosis arefairly short and straight forward, while otherstake much longer and are more difficult. Itdepends on where the endometriosis is andhow severe it is.We know that the amount of endometriosisfound at a laparoscopy doesn’t fit with theamount of pain. So, you may have a little bit ofendometriosis and a lot of pain, or a lot ofendometriosis and very little pain. Rememberthat even if you have endometriosis, that a lotof your period pain may also be from theuterus, even if the uterus looks normal.This is why a good combination of treatmentsto consider is a laparoscopy to remove anyendometriosis and a Mirena IUCD inserted atthe same time. The Mirena can easily beremoved later by your doctor without ananaesthetic if it doesn’t suit you. After alaparoscopy try to minimise bleeding andperiods.It is also true that even if you do haveendometriosis, a lot of your pain may be dueto other things such as a painful bladder,painful nerves or painful pelvic muscles.Endometriosis medications such asDanazol or a group of medications calledGNRH analogues do not removeendometriosis and do not improve fertility, butcan be helpful for pain relief in the short term.5

ENDOMETRIOSISPELVIC PAINRemember to tellyour doctor if youhave:• bleeding fromthe bowel• undigestedfood in yourbowel action• bowelincontinence,or• unexplainedweight loss.sAn irritated bowel or bloatingAn Irritable or Sensitive BowelAn irritable or sensitive bowel is agood example of a pain you can’tsee. It looks normal at a laparoscopyor ultrasound but certainly doesn’tfeel normal.Women feel bowel pain low in theirabdomen, in the same place thatthey feel period pain, pelvic musclepain, ovary pain, bladder pain andendometriosis pain, so it’s easy forall these pains to get confused.The most typical feature of bowelpain is that the pain gets better afterwind or a bowel action has beenpassed, and there are usually otherbowel symptoms too, such asdiarrhoea, constipation or bloating.BloatingDoctors often think of bloating as aninconvenience rather than a majorproblem. This is because bloatingrarely means a serious illness. Thetrouble is that bloating makes womenfeel unattractive and uncomfortable. Italso makes any other pelvic painworse. Luckily, there is lots you cando to feel better.Before you do anything aboutbloating, you should see your doctor.Sometimes women feel bloatedbecause they have an ovarian cyst.Your doctor can check this for you.If this check is normal, then thinkabout what type of bloating you have.The first type of bloating is wherethe abdomen swells up and yourstomach looks big. Women often feellike this near period time, but it is alsoaggravated by certain foods. Thesefoods are described further below.Cutting down on these foods oftenmakes a big difference to pain.The second type of bloating is afeeling of being bloated, when youlook normal. This is often due to achange in the way nerves workcausing abnormal sensations such asbloating, and sensitivity to touch. Youmay find your clothes uncomfortableor dislike anyone touching yourabdomen.This type of problem is describedmore on page 17, but other usefultreatments include:• Peppermint oil capsules taken3-4 times daily or pepperminttea• Iberogast liquid 20 drops froma chemist, drunk in warm wateras tea 2-3 times dailyMany women with pelvic pain have amix of both types of bloating.6

What can I do about bowel pain?Sometimes it’s my worst problemWhich foods might be a problem?Some of the foods most likely to causeproblems are a special group ofcarbohydrates, sometimes called FODMAPfoods. Common FODMAP foods includelactose, wheat products (bread, pasta, pizzaetc), onions, corn syrup, apples, and artificialsweeteners, but there are many others.Most people absorb these foods quite quicklyin their ‘small bowel’ (small intestine). Thismeans that very little of those foods reachesthe ‘large bowel’ further down.Some people absorb these foods slowly,which means that more of these foodsreaches the large bowel undigested. In thelarge bowel, the food is fermented by bacteriato form gas and other substances that irritatethe bowel and cause pain, diarrhoea andbloating. A small amount of these foods maybe no problem at all, but a larger amount cancause lots of pain. If they also have asensitive bowel, which many women withpelvic pain do, then they will really suffer.This means that while your friends may beable to eat any food and feel fine, your bowelwill be painful unless you are careful.Should I just go ‘gluten-free’?A gluten free diet is a special diet for peoplewith Coeliac Disease. Women with coeliacdisease need to be on a strict ‘gluten free’diet for the rest of their life.Women with an irritable bowel often feelmuch better on a ‘gluten free’ diet, becauseby cutting out gluten they are also cutting outwheat, a major FODMAP food. They do nothave a problem with gluten and may be ableto tolerate small amounts of wheat.Before you change your diet, ask your doctorfor a blood test that checks for coeliacdisease. This test isn’t reliable if you havealready cut out wheat from your diet, so it’smuch easier to get it done first.Are there other problem foods?Yes, definitely, but everyone is different. Youmight have a problem with rich or fatty foods(cream, takeaway, animal fats), alcohol,coffee, fizzy drinks, and spicy food.A low fat, low salt, high fibre diet is good foreveryone, but even more important if youhave bowel problems.If you find it all too hard to work out, adietitian may be able to help.ConstipationWe have been brought up to think that it’simportant to have a bowel action every day.Actually, it’s OK to have a bowel action everycouple of days or so, as long as it is soft andeasy to pass when it happens.It is easiest to open your bowels when thebowel motion is soft and your bowel iscontracting strongly enough to pass it easily.You can make the bowel action softer by:• Drinking enough water• Increasing the fibre in your diet• Taking a fibre supplement such asSterculia (normafibe ®). Thissupplement is useful as it causes lesswind than most other supplementsYou can increase bowel contractions by:• Regular exercise, brisk walk every day• Allowing unhurried time to go to thetoilet after breakfast in the morning• Avoiding medications such as codeine• A herbal treatment such as slippery elmBut my constipation is really bad. Nothingworks for me.Some women have severe constipation,even when they do everything right. It is veryunfair. They feel bloated and uncomfortablemost of the time. If so, it is time to talk toyour doctor, or maybe a gastroenterologist(bowel physician).7

ENDOMETRIOSISPELVIC PAINEven if sex istoo sore rightnow, you canstill keepcloseness andhappiness inyour relationshipPainful SexDyspareuniaPainful sex is distressing. As wellas the physical pain, there is theemotional pain women feel when theyare unable to enjoy sex with theirpartner. No one feels like sex if ithurts, but it is easy for him to feel youdon’t care.What causes painful sex?There are lots of possible causes butwith some help, you and your doctorcan usually work out what theproblem is.To make it easier, it’s a good idea tothink about where your pains arebefore you go, and see if you canhelp your doctor find the problem.If you find a sore area, think aboutwhether this feels like the pain youhave with sex, or whether it is adifferent pain. A common cause ofpainful sex is painful pelvic muscles.Painful pelvic musclesThe pelvic floor muscles are the onesyou tighten when you want to stoppassing urine quickly. They canbecome tight, strong and painful.Often there is an ache in the pelvismuch of the time, sometimes withsudden crampy spasms. Intercourse,examinations, or using tampons arevery painful and sometimes the painlasts for hours or days afterwards.There may be sudden sharp orstabbing pains up the vagina or bowelwhen the muscles cramp. Pain isoften worse with exercise and isn’thelped by normal pain medications.You can check your pelvic musclesyourself by inserting one finger justinside the vagina. Push backwardstowards the bowel with your finger,then push sideways towards your hipon each side. Does pushing thesemuscles cause the same pain you getwith intercourse?If your pelvic muscles are painful, it isuseful to:• Use a heat pack or a hot bathwhen the pain is severe• See a specialised women’sphysiotherapist to help themuscles re-learn how to relaxand move normally.• Avoid exercises that build‘core-strength’. Your musclesare already tight and short, andexercises such as pilates mayaggravate the pain, even ifthey help other problems.• Explain to your partner that youshould avoid vaginalintercourse until the musclesimprove. Sexual activitywithout penetration is fine.8

ENDOMETRIOSISPELVIC PAINThe Evil Twins:Endometriosisand InterstitialCystitis are socommonly foundtogether, they aresometimes calledthe ‘Evil Twins’Dr MauriceChungBladder troublesWhy am I always in the bathroom?You may know all about cystitis.If so, you probably mean bacterialcystitis, which is the medical wordfor a bladder infection (urineinfection). The word ‘cystitis’ reallyonly means an irritated bladder. Itdoes not say what caused theirritation.Women with pelvic pain often haveanother type of bladder irritationcalled either Interstitial cystitis (IC)or Painful Bladder Syndrome(PBS). This type of cystitis isdifferent from a urine infection.There is irritation of the bladder wallbut no infection. It is another painyou can’t see at a laparoscopy.If you have endometriosis, bladdertroubles and pain on most days,then it is quite possible that youhave PBS. Sometimes it is thebladder which causes most of thepain.What problems does painfulbladder syndrome cause?The common symptoms include:• Frequency. (Needing to go tothe toilet a lot)• Nocturia. (Needing to get upto the toilet at night)• Urgency. (Needing to rush tothe toilet and finding it difficultto ‘hold on’)• Pain. Which gets worse as thebladder fills, and improvesonce the bladder empties• Pain with intercourse.Especially in positions that putpressure on the front wall ofthe vagina (near the bladder)Many women with a painful bladderdescribe having ‘frequent urineinfections’. Sometimes there is abladder infection, but often it is a flareup of their painful bladder that feelslike a urine infection. If urine is sent toa laboratory, it often shows someblood but no infection.Simple things firstA urine test with your doctor to checkfor infection or other problems is agood idea. They can also check for achlamydia infection of the urethra if asexual infection is possible.Make sure you are drinking enough(but not too much) fluid each day. Formost women, this will be around oneand a half, to two litres of mostlywater daily. If you drink a lot morethan this, that may be part of theproblem.If you still have problems, think aboutwhether any of the foods or drinks onthe next page trigger your bladderproblems. Use the ‘bladder first aid’treatment if your pain flares up, andtry a bladder medication such asamitriptyline from your doctor.10

What can I do about my bladder troubles?Sometimes they are my worst painDietary changes. There are many foods thatcan make bladder pain worse, but mostwomen only have problems with some ofthese. They include:• Foods high in acid such as citrus fruit,cranberry juice, vitamin C, some herbalor green teas or tomatoes. A plain mint/chamomile tea or just water is best• Foods that stimulate nerves such ascaffeine, chocolate or cola drinks• Foods high in sodium or potassiumsuch as bananas• Artificial Sweeteners includingaspartamine etc• Fizzy drinks (including mineral water)Diet cola drinks are probably the worst as theycontain acid, caffeine and artificialsweeteners. Cigarettes can also affect thebladder.If you eat these foods, remember how you feelafterwards. If you feel worse, this may be atrigger food for you. You may also find triggerfoods of your own.Medications are really useful but you mayneed to try a few different ones with yourdoctor to find the right one for you:• Low dose amitriptyline from yourdoctor. This is a good first choice as ithelps frequency, urgency, pain and thenumber of times you pass urine atnight. It can also sleep, bloating andheadaches. A dose starting at 5mgtaken around 3 hours before bed andincreasing slowly to between 5 and25mg daily suits around half thewomen who try it. Sleepiness in themornings usually wears off in a week orso, but start with a small dose.• If amitriptyline makes you feel toosleepy, then you can try tolterodine1-2mg daily, oxybutinin 5-15mg daily orsolifenacin 5-10mg daily.• Hydroxyzine 10-50mg at night is oftenhelpful but not available in Australia.This is an anti-histamine so especiallyuseful for women with allergies.• Pentosan polysulphate sodium(Elmiron®) 100mg three times daily.This is the only medication specificallyused for painful bladder syndrome. Ithelps about half the women who take itbut is expensive and may take up to sixmonths to work.Bladder First AidIf there are times when your pain or urgencycomes on suddenly, you may be able to help itquickly by:• Drinking 500ml of water mixed withoo1 teaspoon of bicarbonate ofsoda, ora sachet of Ural ® orCitravescent ®.• Then take 2 paracetamol tablets (1g)and drink 250ml water every 20 min forthe next few hours• If you are no better, have a urine testfor infection. Only take antibiotics if aninfection is found.Remember that if your bladder problemscontinue, you should discuss this with yourdoctor.11

ENDOMETRIOSISPELVIC PAINFatigue, anxiety and low moodSick and tired of feeling sick and tiredPelvic pain can affect your lifedramatically, and it’s understandable ifyou are just ‘sick and tired of feelingsick and tired’.You may have had pain for a longtime, been told that everything wasnormal, or not been taken seriously.You may have had treatments whichhaven’t really helped and beendisappointed.It’s hard to feel positive when thishappens, but even so keeping apositive attitude is one of your bestdefences against pain.You have lots to look forward to.What is your coping style?These coping strategies arecommon, but maybe it’s time to reviewhow you manage your pain, and worktowards being the woman you’d like tobe.‘Choosing to live well with pelvicpain doesn’t mean you have tobe a superwoman,but it does mean choosing not tobe a victim’Best practice treatment is not justabout what your doctors, and healthcare team can do for you. It’s alsoabout self-help, and what you can dofor yourself.Everyone copes with pain a littledifferently. Maybe you put on a braveface at work or with friends, wheninside you feel far from well. Maybeyou have struggled on, trying to copealone.You might recognise some of yourown feelings and behaviours in thePain Cycle chart below.Doing things for yourself can help youfeel ‘back in control’. This can bedaunting in the beginning, but themore you do things for yourself, themore you will build confidence and theeasier it will become. Remember,setbacks are normal and not a reasonto give up.‘Fit, happy people have lesspain’The Pain CycleWhile you may put on a braveface at work or with friends,inside you may feel far fromwell.Can you relate to any parts ofthe pain cycle?12

Fatigue, Anxiety and Low MoodI’m so over it!Simple things first•Take some time to think about what it isthat worries you most about the pain andask your doctor about your concerns.Often these fears are unnecessary.•Ask your doctor if your Vitamin D levelmay be low, or whether a course of irontablets would be helpful.•Think about the things that trigger yourstress, and problem-solve them one at atime•Accept that you might need help. Otherswill be glad to help, especially when theysee you making positive steps for yourown well-being.•Prepare for visits with your doctor bywriting down your symptoms and thequestions you’d like to ask.•Plan time for fun and leisure, and keepactive. Being outdoors is a great way tomanage pain and stress. Do things youlike which take your mind off the pain andkeep you busy. Singing and music are agreat start. There are many things youcan still enjoy.•Look after your body. Smoking, alcohol,drugs and being overweight make peoplefeel sluggish and tired. You don’t need it.•Start regular gentle exercise, which tonesthe body and releases ‘feel good’hormones. Walking is wonderful. If youhave pain, then exercise is essential.Even a 10 minute walk each day is auseful start. If exercise causes you pain,read pages 8 and 14. It’s OK to startsmall and build up•Get regular sleep. Simple remediesinclude lavender oil on your pillow,chamomile tea before going to be andregular, calm bedtime routines.•Consider relaxation or meditation to sendpositive energy to the mind•Learn to love your body. Replaceunhelpful thoughts with helpful ones.These things help you make pain a smallerpart of your life. There will be some things youcan’t do, but look for things you enjoy that youcan do to keep happiness and activity in yourlife.When simple things don’t workIf you still feel low, it’s really important to seekhelp. Depression and anxiety are common ifyou have had a lot to cope with.These problems didn’t cause your pain, butthey do make it harder to get better and youdeserve to be well. Keep up with the things onthe ‘simple things first’ list and get help. It’sreally important. There are lots of services tohelp you.Useful services include:•Your doctor or a psychologist. Explainhow you feel and ask if you could bedepressed. There is no need to feeluncomfortable talking with your doctorabout this•online information on depression atwww.beyondblue.org.au,andwww.depression.org.nz• free online self-help programs atwww.facebook.com/ehub.selfhelp• a telephone information line at1300 22 4636 (Australia)13

ENDOMETRIOSISPELVIC PAINPudendal NeuralgiaPain where you sitThis is a pain you may not haveheard of before, and it’s a pain thatmen can get too (!) especially if theyspend a lot of time cycling.The pudendal nerve is the nervethat goes to the muscles and skinbetween our legs where we sit. Somepeople call this the ‘saddle area’, whichmeans the part of you that would toucha saddle if you were riding a horse.The nerve travels through sometight places around the inside of yourpelvis, where it can get irritated or beput under pressure.What causes pudendal neuralgia?The common causes includechildbirth, injuries, cycling, long termconstipation and tight, overly strongpelvic floor muscles. Sometimes nocause is found.What are the symptoms of pudendalneuralgia?There are many different symptomsbut they are usually worse when sitting.The symptoms include:•pain in the area of thepudendal nerve anywhere fromthe clitoris or penis back to theanal area. It may be on one sideor both sides, near the front, orfurther back. This pain is usually aburning or sharp ‘electric’ feeling•sexual problems with lessfeeling in the penis or clitoris•difficulty opening your bowelsWhat can I do to help the problem?To help the nerve recover, youshould:•avoid activities that putpressure on the nerve, such assitting, or cycling•when you do sit, use a ‘Ushaped’foam cushion with thefront and centre area cut out, or siton 2 towels rolled up under eachbuttock so there is no pressure inthe centre•see a pelvic physiotherapist tolearn how to relax and lengthenyour pelvic muscles, to takepressure off the nerve•avoid straining when you passurine or open your bowels, andavoid overly strengthening yourpelvic muscles•some centres offer botox to thepelvic floor muscles or pudendalnerve blocks for this problemPudendal Neuralgia is so common incyclists, it is sometimes called ‘CyclistsSyndrome’15

ENDOMETRIOSISPELVIC PAINBad Headaches and MigrainesAre they related to my pelvic pain?You may be surprised that wehave included headaches in this e-booklet, but they are really common inwomen with pelvic pain, especially atperiod time.It’s always best to talk about yourheadaches with your doctor first, butonce they are happy that there is noserious illness present, we suggestyou try one of these treatments.None of these treatments suiteveryone, so you may need to trymore than one to find something thatsuits you best. It is worth the effort,though. Your headaches are unlikelyto go away by themselves and life isbetter without headaches.Headaches with periodsA headache that comes each monthwith a period often improves with oneof these options:•A mirena iucd in the uterus•A diclofenac 100mg suppository•A ‘triptan’ nasal spray availablefrom your doctor, or,•An estrogen hormone patch usedat period timeA low grade headache for severaldays each monthSometimes they may be severe,while at other times just a nuisance.It is definitely worthwhile trying apreventer medication taken every day.Helpful medications in young womeninclude:•Amitriptyline 5-25mg 3 hoursbefore bed each day•Cyproheptadine (Periacten), 2 to4mg each night•Other medications from yourdoctor, or explained in our bookTry each one for 2-3 months andkeep a headache diary, so you candecide if it has helped.Migraines at other timesMake a plan with your doctor andask about a ‘triptan’ nasal spray.There is much more information onheadaches in our book, and atwww.migraineclinic.org.ukRemember to tell your doctorstraight away if:• Your headaches havechanged or becomeworse• A headache comes onsuddenly• You have a stiff neck orfever• Your headache startedafter an injury• You have newsensations, weakness orabnormal movements16

ENDOMETRIOSISPELVIC PAINThe Chronic Pain ConditionNeuropathic PainIf you have pain on most days, orseveral different pains, you may havewondered why your body is sosensitive. Someone may have toldyou ‘it’s all in your head’.You don’t need to worry that you areweak, or that the pain is imaginary. It’sreal, but it may be something youhaven’t thought of.Often it is a change in the way thenerves, spinal cord and brain workcalled neuropathic pain or centralsensitisation. Pain from nerves is yetanother pain you can’t see at alaparoscopy, and part of what doctorscall the “Chronic Pain Condition’How did it happen?When something painful happens tous, the nerves in that area send painsignals to the spinal cord and then upto our brain. It is when the brainnotices the pain that we feel it.Sometimes, after bad pain, or if therehas been pain for a long time, thepain pathways from the pelvis to thebrain change. The structure of thenerves change and they start sendingpain impulses to the brain at any time,not just when something painful ishappening. The brain changes too,and starts to feel pain even withnormal sensations like touch ornormal bowel function.Central sensitisation is very commonin women with pelvic pain, but it isalso common after back injuries, orshingles. The pain that is felt longafter a badly injured leg is amputated(Phantom Limb Pain) is another typeof neuropathic pain.Do I have the Chronic PainCondition (neuropathic pain)?There are no scans or blood tests thatshow neuropathic pain, but once youunderstand it, neuropathic pain isquite easy to pick:•It can come on at any time, andis usually present on most days•The pain may be burning, sharp,or aching•It is common to feel bloated,even if you look normal•It is common to sleep badly•Things that would not normallybe painful, are painful. Somewomen feel pain just withtouching their abdomen. This iscalled ‘Allodynia’•Things that are painful becomemore painful. For example,periods may have always beenpainful, but are now very painful.This is called ‘Hyperalgesia’•When the pain is really bad, youmay feel it over a bigger area.This is called ‘Wind-up pain’The Chronic PainCondition is a medicalcondition, just as asthma,diabetes, andendometriosis are medicalconditions. We just don’tknow as much about it.17

The Chronic Pain ConditionWhat can I do to help the pain?Things have just become too much for meNeuropathic pain affects our mood too.Women who have managed their pain well foryears, may start to feel ‘worn down’ by theirpain or anxious about things they don’t needto be anxious about.We know that some of the same chemicalsinvolved in neuropathic pain are also involvedin anxiety and depression, so once again, youare certainly not imagining it. These problemsoften improve once the pain is treated.What is the ‘Chronic Pain Condition’?Chronic pain is a medical condition, just asasthma, diabetes and endometriosis aremedical conditions, but it involves the waynerves work.Around 20% of people (men and women)seem to be at risk of developing a long termpain condition. Often there are a mix ofdifferent pains. For example, a woman withpelvic pain might also have tender points inthe muscles around her shoulders, headacheson most days, long term pain after an injury oran irritable bowel.Brain scans show that in someone withneuropathic pain, even small things are seenby the brain as pain.What will help me get better?Once chronic pain becomes established, acure may not be possible, but the good newsis that you can expect a big improvement withmanagement of your pain. All of thetreatments aim to help your nerves worknormally again.Lifestyle issues: You may have worked outalready that your pain is worse if you arestressed or over-tired. More than ever, youneed to be kind to yourself. This doesn’t meanlying on a couch all day. It means regulargentle exercise, a good diet, a positiveattitude, regular sleep, and resolving stressfulissues. Chronic pain is not dangerous, but it ispainful. Even so, there are still lots of things inlife you can enjoy and a positive attitude reallyhelps.Medications every day to help the nerveswork normally. These medications are notpainkillers, but often help pain when takenregularly.It is true that no one wants to take a regularmedication, but we recommend you see yourdoctor and try them at least for a couple ofmonths. Then think about the problems youhad before and decide if they have beenhelpful:•amitriptyline is an old-fashionedmedication that used to be used in bigdoses to treat depression. Small doseswon’t treat depression but often helpnerve pain, sleep, headaches, a bloatedfeeling, an overactive bladder and musclepains. It suits around half the women whotry it. Start with just 5mg (half a bluetablet) 3 hours before bed. If you are nottoo sleepy the next day, go up to 10mg,then slowly to between 10 and 25mg if allgoes well. If you are sleepy, stay on 5mgand wait for this to pass.•pregabalin or gabapentin. These aredifferent medications you can discusswith your doctor. Start on a small doseand work up. There is no hurry.•other medications for this type of painPreparing for an operationIf you have this type of pain and need anoperation, it is a good idea to talk to yourdoctor about using a neuropathic medicationbefore and after your surgery. This hasn’tbeen commonly used for pelvic pain surgeryin the past, but we believe it helps recovery.If you are already on amitriptyline then thisshould be continued until you are fullyrecovered.Alternatively, you can ask your anaesthetistwhether a dose of gabapentin or pregabalinjust before your operation might help with painafter the operation.18

About UsDr Susan Evans, MBBS, FRANZCOG,FFPMANZCA is a gynaecologist, laparoscopicsurgeon and specialist pain medicine physicianwho lives in Adelaide, Australia. She specialises inthe management of endometriosis and pelvic pain.Dr Evans has written a wide range of books andarticles on pelvic pain for health professionals,women and girls. She has presented at meetings,on TV and radio, in Australia and internationally.Ms Deborah Bush, QSM, Dip Tchg, LSB isChief Executive Officer of Endometriosis NewZealand and lives in Christchurch, New Zealand.She developed the ‘me’ (menstrual education)schools program for teenagers, provides expertadvisory consulting for women with pelvic pain inconjunction with their gynaecologist, and has beeninstrumental in raising awareness of endometriosisand pelvic pain in New Zealand and beyond.There’s much more youcan doIt’s always good to have friends. You can get intouch with other women just like you using thelinks in the pink box. Learn more about period andpelvic pain by reading our published book, andkeep up with news when you ‘Like Us’ onFacebook.CopyrightAll content copyright © 2012 Dr Susan F EvansPty Ltd. All rights reserved.Distribution of the intact, unaltered PDF version ofthe ebook is permitted.Printing, alteration or publication of the informationin any other form, without written permission fromDr Susan F Evans Pty Ltd is not permitted.www.drsusanevans.comDisclaimerThis ebook provides general information only andis not intended to take the place of medical advice.We will not be responsible for the results ofdecisions made resulting from the use of thisinformation, and recommend that you discuss yourpersonal situation with your doctor.Buy our bookIf you’ve liked the e-booklet, youwill love the book!‘Endometriosis and Pelvic Pain’has so much more about all thedifferent types of pain and lots onfertility. There are stories aboutreal women just like you and it’sreally easy-to-read.$25 in English or Mandarin from:www.drsusanevans.com andwww.nzendo.co.nzLike us on Facebookand keep up with latest news at:‘Pelvic pain news’, and‘Endometriosis New Zealand’Register for News!send your name and email topelvicpain@internode.on.net19