Title -- Endometriosis : A lonely disease .
The initial years of my introduction to womanhood were pain free. However in my mid teens I had my first cramps. They would put me out of action for up to 3 hours at a stretch then which was nothing compared to what I got in adulthood.
I recall a particularly bad bout I had which left me nauseous . I ended up vomiting and lying on the toilet floor because I hadn’t the energy to walk back to the bedroom to lie down . This was unfortunately just the beginning. One such prolonged attack came in the middle of the night and I started wondering if it was appendicitis . The pain started at my lower right abdomen and it spread across the middle in what I would describe as an intense contraction and deep pain . It wasn’t a contraction that eased off but intensified as the hours passed. Then hit a peak and eased off .
From once or so each week of my cycle to more and more often and then there came a point when medications became necessary for me to get past these attacks. Panadol ( paracetamol ) turned out to be useless and it took a long time to take effect by which time I would have started feeling nauseous . I didn’t know much about endometriosis then but upon hindsight , it was probably the start of the disease . Few elders were willing to talk about periods and it was often hushed up . I got the impression that it was taboo . During the worst of these attacks I would be dealing with waves of contractions .
The two years I spent as a trainee teacher were a horror . I was sometimes forced to miss lectures and training sessions as I collapsed in the sick bay . It was then that I first heard of endometriosis and that there was no need to suffer in silence because medications were available to control the pain . Ponstan was one of the first recommended to me by a colleague who too suffered from this problem . I consulted a doctor and started on it . An understanding lecturer referred me to a relative of his who started me on synflex and that worked for awhile . Another not so understanding one stared at me when I was doubled over one day unable to walk and asked , "Is it really THAT BAD ???" Someone ticked him off and said why yes it was , in fact she had been to the hospital for this problem and had to have a jab .
I soon learnt through trial and error after some painful years that once the cramps hit , no amount of pain medications would ease it off , and that you needed to recognise the symptoms to take it before it struck . This was easier said than done . Sometimes the first waves would hit say while you were on the move and by the time one got to a convenient place to eat something to take the painkiller with , it would be too late . At the first school where I was posted I would often get struck and have to take time off . Several times I had to leave to get to the hospital or report late for work because the pains had hit and the medications were taking their own sweet time to work .
It was about this time that a colleague who had been diagnosed with endometriosis urged me to see a gynaecologist . I was taken aback at first because I was then not married and of course still a virgin . The very thought of instruments going up my bottom was repelling . Months passed and I finally gave in . I went initially to a private gynaecologist . A vaginal examination was abandoned as I found it uncomfortable . The doctor found another way . He palpated my middle with one finger in the rectum and that was a lot more comfortable . A scan revealed a fibroid . This cost a lot of money and once I had my civil service card which entitled me to a subsidy I got a referral and saw a gynaecologist at a local hospital . The entire unit has since moved to the KK Women’s and Children’s’ Hospital . This turned out to be the best decision I ever made .
The doctor recommended synflex too and I have since been on that particular painkiller at various dosages . Maybe I am biased but I received nothing but total sympathy and understanding from the gynaecologists I have been with at KKH . They made me feel as though I was not just imagining the thing and pain . As I described my pains and odd symptoms to the first KKH gynae I was with , he mused , "This sounds like endomertiosis ." At this stage because the pain could still be controlled by painkillers , he decided against the aggressive approach . I wondered aloud if I would become immune to the painkillers to which he said no . If it ever got to the point where they stopped working it would probably mean that the disease was getting too big a scope for this range of medication to handle .
This was a comfort to hear as I was then bombarded with well meaning but misguided advice from colleagues and anyone who wanted his or her two cents worth .
1) Don’t drink iced tea . That is the cause of your pains . ( when I pointed out that my pains had started in my teens and that I started drinking iced tea only in my 20s , that usually shut them up fast ) .
2) One elderly colleague said , "quick eat a bar of chocolate it will stop the pain ." I gave her a stare . I was then in the middle of another attack and was in no condition to argue .
3) "It must be because of your tampons ." and no amount of explaining would convince those persons it wasn’t so . I mean when you are in the middle of such an attack the last thing you want to do is to have to defend yourself from someone who insists on a 15 minute lecture . For that matter a pal of mine whom I introduced to tampons insisted that her pains stopped when she started using tampons .
4) "Pineapple it must be pineapple ." That person was taken aback to learn that till today I do not like pineapple and do not eat it if I can help it .
5) "You mean you have to take painkillers regularly ? You had better stop it at once . It is dangerous and stupid . I don’t even take one ." I got this line most frequently from people who do not have severe and extreme cramps . Fellow sufferers whom I related this story to would often wish that person a labour from hell without medication .
6) It certainly wasn’t an immunity problem either and many people got angry when I said it wasn’t do no matter how politely I spoke . Till today I seldom get influenza and the likes . I have come to a point whereby I now just get plain rude outright : Go read up on the disease before you discuss it further with me .
Such were the comments I got . It was tiring .
Months passed . One day I woke to the disturbing fact that I had overdosed ( OD in medi-speak ) . The pain was so intense I had take an extra two 275mg tablets without much thought . I had forgotten that day to mark the doses I had taken . What was even more disturbing was that I was still in pain until hours later . I called the hospital and managed to speak to the doctor who urged me to come in for an emergency consult . I was scheduled for a laparascopy the following week . I remember lying on a trolley feeling odd as my gown was open backed and the Operating Theatre was cold . I was out cold before I could say anything .
When I woke up to the sound of someone calling my name my gynaecologist’s face appeared and I asked them what they had found . The diagnosis was confirmed and I was officially an endo victim and had a fibroid to boot . I found out after my 2nd surgery that because removal would cause possible problems ( I am making an educated GUESS here that it could be because of its position ) in a pregnancy it was then safer to leave it in . 6 months of Danazol followed and it was bliss despite the side effects . I spotted off and on , had my skin break out , had mild nausea but it was bliss not having to worry about having to time my painkillers .
I was pain free for about a year before it started coming back gradually . I got married in my late 20s and my first child was probably clomid induced . I had been put on it to regulate my menses as it had gone heywire . I had requested to have my period deferred once as I didn’t want to bleed on my wedding day . I went off the pill immediately after only to find that the pains for some strange reason had turned from unbearable to excruciating . What had escaped my notice until now after my 2nd surgery was that the flow had become heavier . I mean no one stands by the loo counting tampons !!! It is only when someone else points out the fact to you or when you get questioned by the doctor that one starts thinking .
Another myth that surfaced at about this time was ‘have a child and you pains will lessen or disappear .’ Well I wanted children but certainly not for those reasons . After each child my pains again returned as before , gradually until one day it hits upon you that you are back where your were before . Thankfully despite the medications , I was able to breastfeed successfully my older child for a year and my younger one for 4.5 years . I was taught to start taking the medication before the period came and to continue with it at regular intervals until it had passed . Often I chose to go the heroic but foolish way that was to forget one dose .. or to try and do without it but ended up vomiting and in pain . Something my 2nd gynae said struck me as true , "Don’t try to be heroic or you will end up fainting in a place where no one knows you or your problem ."
I had settled into a pattern by then . I learnt to recognise the symptoms of an oncoming cramp or period . I would get food cravings mid month and nausea or have irritable bowel symptoms or excessive burping which was annoying . It would go on until my flow started and then I would be faced with how to cope with pain . I sympathised deeply with a pen pal who lived in the USA . As regularly as her pains hit , she got struck by diarrhoea and cramps . This went on for another 6 or so years . I had grown used to coping until recent months when the old pattern of needing that one extra tablet came back . Again I overdosed this time knowingly but in desperation . I suspected that the endo had grown back and in full force .
What happened next was pretty much a repetition of the first call for surgery except for one drawback . The day after I was booked in for the procedure my current doctor and gynaecologist called with some bad news . I was severely anaemic with a hb count of 7.5 . Except for one occasion where I was borderline , I had had blood taken on other occasions for various tests and was never anaemic . In fact I had always been well within the range of 11 to 14 . My diet hasn’t changed much all these years so I figured after discussion with fellow sufferers it probably wasn’t related to the diet . This was a shock . I realised after some brain racking ( again another educated guess ) that with a low blood count , that would mean any accidental severe bleeding during surgery would result in a possible scenario of O2 deprivation to the brain . I was instructed to megadose on iron tablets . 3 worrying days . I was worried that if surgery was postponed I would have to face another month of pain . Even though my period had finished I was still in pain with a dull ache at my side going down one leg . I was worried too because a postponement of afew days to let the hb count go up , would mean the possibility of no baby sitting as my family was going out of the country . The medical people had decided on a D and C as well to exclude the possibility of hidden polyps in my womb that caused the extra bleeding and contributed to the anaemia . I signed the consent forms with relief .. relief because finally I was going to get that dratted curse dealt with.
Thankfully I made it to the critical level . It went ahead as planned . The last thing I remember was me rattling on about how I would have preferred to be awake , so that if I was in pain I could complain . I had this fear of half waking up during surgery unable to mouth that I was in pain . The anaesthetist was probably thinking that he would have to knock me out FAST so that the good doctor haha!!! could carry on with his work . I woke rattling , my tongue running away with me after the surgery until the nurse with controlled amusement in her voice said that there were many people about me .
Another lady doctor who had been on the team showed me the photographs they had taken . I had endo spots on the ovary on that side that had been bothering me . Even in the haze , I noticed that the odd ache I had been living with for the last two weeks was gone . Needless to say they were elsewhere as well . I was discharged that day and had a lucrin injection before I went home . I spent most of the first day just sleeping . Post surgery I coped well as long as I didn’t try to lift anything heavier than I could reasonably manage . Sleeping in an odd position or lifting something abit too ambitious resulted as I found out to my dismay , in a pulling sensation at my side . Post OP old wives tales surfaced in all uninvited directions . Don’t drink cold water etc etc . Sometimes I think that the very reason why some of the older ladies are facing aches and pains is because they have abstained from too many different foods . That and osteoporosis is probably another cause as the traditional Chinese diet is bereft of dairy products . I guess I am an oddball . I don’t take to heat very well .Drinking too many warm or hot drinks often brings on a sore throat . I now take all my drinks chilled and hardly get a bad throat .
Endometriosis is basically the endometrium spilling over to the outside of the womb . What I understand is that when your monthly hormones cause the inner lining to be shed as menstruation , the outer spots go through their own cycle too . This often causes adhesions and scarring . What is even more frightening is that many women have it but don’t know it . Often their first symptom is an inability to conceive . This often delays parenthood by afew years .
Endometriosis is a lonely disease . People are often too free with their own misguided ideas on what causes menstrual cramps and fail to listen to the person who is suffering the pain . They are quick to label you a drug addict or imply that you are one because often the victim doesn’t look at all ill . I turned to internet groups and found to my dismay that there were no Singapore based lists or forums then on the search results . I joined overseas based groups only to retreat because I found them unresponsive . I couldn’t blame them as many women were from the USA and they didn’t quite use the same drugs with the same names there .
I have JUST started an online support group hoping to meet this need . This runs by email where women can talk freely about a taboo subject . Or they can choose to read mail off the web address for the group . I am an endometriosis sufferer . This is my story . I would like to take too this opportunity to urge all girls and women who suffer from this monthly nuisance to please seek treatment as there is no need to suffer in silence .
Click here to get to the support group's home page .
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