Under the curse of Eve (My Experience Of Endometriosis)

Member Name: dawnfrancis

Product:	My Experience Of Endometriosis
Date:	24/08/01 (559 review reads)
Rating:

Advantages: absolutely none

Disadvantages: infertility, excruitiating pain, messes up your image of yourself as a woman

I've never told anyone this story in its entirety before. But after having been a member of Dooyoo for a couple of months and discovering what a wonderful and supportive community it is, it just felt right today to sit down and talk about something which has haunted me for the best part of my life.

That dark shadow is called endometriosis. Many other Dooyooers have done a brilliant job on describing this condition and I don't wish to even try to emulate their efforts. Instead I'd urge you to read their ops. I'm going to talk about the psychological side instead, and the deep and scarring impacts of this disease on the mind and soul.

I started my periods at the age of 11. The first day I was in denial, but by the end of it I was somewhat proud that I had 'grown up'.

The next day I was on the sofa doubled up in agony and fearing for my life. Sounds dramatic but that's how it felt. Nobody had ever warned me it could ever be so bad. In sex education at school painful periods were never described, and my mom (a sufferer of bad periods herself) had taken great effort to 'appear normal' throughout her pain so that I would not be frightened as a young child.

Off to the GP then. I was given Ponstan, the GP's favourite cure-all painkiller for the monthlies. Let me tell you - you might as well eat a Smartie. Ponstan is a load of c**p for serious period problems.

Things got worse. I passed out at school several times from the pain. I used to get violent diarrhoea and sickness every month. Eventually I got a referral to a gynaecologist.

Let me tell you, few things are more damaging to a young girl than a visit to the gynae. Granted, some of them are very, very good. Others I would gladly kick in the nether regions if I met again. There you are, a young, unconfident girl being asked all sorts of excrutiatingly embarrassing questions by a man - who more often than not doe
s not believe what you say. Dooyoo know, I actually had one doctor request that my mom left the room. When she went out he said to me 'come on now, you can tell me in secret, are you making all this up because you want us to put you on the pill?'!!

I have never forgotten that consultation, or the feeling of having my suffering downgraded to that level.

Eventually I was prescribed norethisterone. This is a VERY good drug which is taken 3 weeks out of every four. On the fourth week you stop and have your period, but it is chemically modified, so that it is lighter and somewhat less painful. I still suffered greatly but with a lot of willpower I could manage.

And so I lived my teenage years in this way until suddenly at the age of 24 things got dramatically worse, to the point that I was nearly incapacitated by pain. I had a new symptom. It's too embarrasing to explain, suffice to say it was like someone knifing me up the back passage. The pain was so great that I would go into shock, and start shaking uncontrollably. The tablets weren't working any more. My whole body was invaded by something I could not see. At one point I even thought I might have cancer, because I started to have symptoms at other times in the month too.

so back to the gynae. And this time I was taken seriously. A 24 year old doing a PhD is more difficult to patronize than a young girl. I was admitted to hospital for a laparoscopy. They put a little camera into my womb and had a look around.

The results were that I had endometriosis. Parts of womb tissue were actually growing on my bladder and on various sites on my guts. Each month they would bleed and the blood could not escape, hence the intense pain.

a few weeks after a wonderful, wonderful doctor sat down and explained that my 13 years of suffering had been due to this disease. He said that doctors never used to believe it could occur in young teenagers, bu
t views have changed. I may even have been born with these womb cells in the wrong place, just waiting to be triggered off by puberty. He prescribed Danazol, a drug which has helped many endo sufferers, and arranged to see me again.

But I never went back.

The reason? I'd had a gutful. The physical pain was bad enough, the psychological was worse. Years of pain had taken their toll. And I was seriously beginning to question my femininity. Maybe I was never meant to be a woman, and that's why I was having these problems. The fact that I'm probably infertile strengthened this view.

gradually this conviction strengthened. Every bad period I had after that convinced me that my view was right, was a further insult to my feminity. I discovered that the Danazol suggested by the doctor can have 'masculizing' side-effects. These can include a deepened voice and facial hair. This sent me totally off the rails - it was proof! The doctors were trying to turn me into a man - because that's what I should have been born as.

And so for the past few years I've been doing a highly unconventional form of self-treatment. I've stopped my periods completely. I take my norethisterone nonstop around the year, and it fools my body into thinking it's constantly pregnant. The doctors don't know - they think I'm taking it 3 weeks out of every 4 then having a period, as it's supposed to be taken.

I know what I'm doing is potentially dangerous and I would not advise others to try it. It's just that personally, I could not go there any more. I was at breaking point. Long-term effects of prolonged norethisterone use can include liver failure, and my close friends and family warn me that for all I know, I could be dicing with death.

But I value quality of life more than quantity. I know what I've done is wrong but the endo won in the end. It traumatized me to such a
degree that I can no longer bear even one more period. I'm now actually 'addicted' to these drugs and cannot get off them without suffering suicidal depression. I know they have altered my brain chemistry, maybe permanently.

That is my story. I am not proud of the choices I've had to make, nor do I condone them and please, please do not consider doing what I've done without medical advice. I don't want to influence any other Dooyooer adversely. I just wanted people to know the psychological pain that this dreadful disease can inflict, and what we sufferers have to do to survive.

In the end it was the assault on my mind that finished me, more than the physical pain could ever have done. To all other sufferers..I wish you courage and strength in your battle. To non-sufferers, I ask you to remember our stories the next time you see a woman prancing around on some tampon advert.....

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