Most people have never even heard of the disease which means Ann Marie Moore will almost certainly need a hysterectomy, ending her hopes of having children. Endometriosis is a common condition and can mean misery for women like Ann Marie, leaving them infertile. Today she will hear from a specialist whether she will definitely need the operation. But she tells Jan Winter she is determined to help others in a similar plight by running a support group in the district

ALTHOUGH SHE is only 40 this month, Ann Marie Moore has had almost a lifetime of health problems.

It was only fours years ago that the diagnosis of endometriosis was made, giving a name to the pain she had suffered since her teens and a cause for her infertility.

She could not even pronounce the word - and was heartbroken when a doctor suggested she had to have her womb removed. "At 35 I faced that. I said: 'But I wanted to have children'."

Ann Marie and fiance Nick decided to go for infertility treatment with in-vitro fertilisation, and she was prepared to undergo surgery to remove fibroids which were in her womb. But there was a further health blow when Ann Marie, from Idle, started to suffer from angina and eventually had to have a triple heart by-pass graft, which put an end to the IVF treatment.

"I would give everything and anything I own to have a baby with Nick, but I know it's an impossibility," she says. The couple are starting the process which could lead to them adopting a child and know it's the quality of their life together which counts, and that encourages Ann Marie as she takes hard decisions about surgery to remove her womb.

She was today hearing from her gynaecologist about the results of an MRI scan, which will determine whether or not she needs a hysterectomy - a major operation for Ann Marie because her bowel and other areas in her pelvis have been badly affected by the endometriosis.

The disease is a condition in which cells like the ones which line the inside of the womb become established outside it. This can take place anywhere in the pelvic area: on the ovaries, Fallopian tubes, bladder, womb, bowel or on the pelvic wall itself.

Like those inside the womb, they shed each month like a period, but cannot escape and spread through the pelvic area, causing sticky adhesions.

Like many women, her periods started when she was 12 or 13 but she had only experienced two when she suffered the trauma of her mother's death at the age of 40. She had suffered heart problems but her early death left her husband to bring up four children, with Ann Marie as the oldest girl.

"I didn't get to speak a lot to my mother about my periods. When I had my periods it was hell, so painful, but although I could talk to my dad I assumed it was normal. If I went to my doctor's and mentioned it, he said to take paracetamol, and for years I struggled on."

Some months were better than average, but often Ann Marie could barely walk because of the pain. She left school and worked as an operative in various factories but her painful periods interfered with normal work patterns.

After marrying at the age of 24, Ann Marie found sex painful - a common symptom of the disease but one which she was too embarrassed to mention. "I went on for years and years presuming all this was what other people had. If I mentioned it to doctors they were often patronising, they said it was only periods. We tried for children but I didn't get pregnant and I went on fertility drugs.

"It was hard because one friend went on them at the same time as me and she got pregnant and I didn't. There was a real stress on my marriage. I had tests and it was stressful, keeping temperature charts. I had no energy and was always tired, and even had the pain mid-cycle, when I was ovulating."

The marriage broke down and the couple were divorced six years after the wedding.

Ann Marie met Nick and the couple became engaged four years ago. She says her fiance, who is eight years younger than she is, has been a tower of strength for her and extremely understanding throughout her bouts of illness.

"Every month it was getting worse with my periods and Nick was getting fed up with me putting up with it. He said: 'You can't carry on like this'."

Then she had an operation which revealed the endometriosis and was initially told she needed a hysterectomy, causing Ann Marie great distress because she was still hoping to have children.

She has tried various drug therapies to relieve her symptoms, with varying success. The side effects can be severe although the periods improve.

When Ann Marie needed an operation, which left her with a scar from her bikini line to her tummy button, she insisted that the words "Do Not Perform Hysterectomy" were written in red letters on the consent form before she would sign it. "I wasn't ready for that. I didn't know enough about endometriosis at that time," she says.

She and Nick started to have infertility treatment, which was halted when her heart problems started. "The first angina attack happened when we went to Paris for the weekend and we were late getting back to the coach. I thought it was a panic attack. I was a full-time student at Bradford and Ilkley Community College then, studying for an HND in business studies. I finished the first year but had to give up."

A special test found a small blockage in one of Ann Marie's arteries around her heart. "Then I was afraid to go to bed because I was having angina attacks when I was asleep. They would wake me up and I was on quite a few tablets."

The surgery to insert the by-pass graft was an ordeal, with Ann Marie suffering various side-effects which meant she had to be readmitted to hospital again and again. "My heart's fine now although for some reason I'm still breathless and I feel as though there's a weight on my chest, and I have swollen ankles.

"My endometriosis plays havoc all the time. For some reason I've had two periods this month and they've been real humdingers.

"We can't book holidays because we don't know what I'm going to be like. Sometimes Nick comes home and I'm in a heap on the couch.

"With the support group, I decided there might be someone else who's in a similar position to me, who didn't know where to turn. I can offer information and support - it helps talking to someone in the same position as yourself. There is help and information available, people are not alone.

"Nick comes to help at the support group and came to the annual general meeting. If you can get your partner or husband involved it gives them a better understanding.

"I have to feel positive as best as I can. I always try to be positive, that there's light at the end of the tunnel."

Fact File

The benign but degenerative condition of endometriosis estimated to affect up to two million women in Britain. The cause is not known and there is no cure.

Cells like those which line the womb become established outside it, in other areas of the pelvis, such as the ovaries, Fallopian tubes, bowel, bladder or on the pelvic wall. These shed each month and they become sticky and spread.

This can cause pain during periods, ovulation, sex, and bowel movement.

It can also cause difficulty in getting pregnant. Between 20 per cent and 40 per cent of infertile women have endometriosis.

Surgery can remove the endometriosis, depending on its extent and where it is, and drug therapies can also be used.

Research by the Endometriosis Society found there was an average of 6.8 years delay in diagnosing the condition in women, and three-quarters of sufferers felt the disease had prevented them from leading normal lives.

l For local support, contact Ann Marie on Bradford (01274) 413529. The National Endometriosis Society is on 0171 222 2781.

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.