There is a choice

FOR at least two weeks every month, Sally Margerison's life was a living hell. It took 26 painkillers just to get her through the day.

Now she is a happy, healthy mother-of-two, and she's on a mission. She believes too many women are being offered hysterectomies instead of less radical keyhole excision surgery to treat the symptoms of endometriosis, a relatively common gynaecological condition that can lead to intense pain, swelling and bleeding.

"Sometimes a hysterectomy is the answer, but not always," she said. "I find it extremely frustrating that women are having their wombs and their ovaries removed when there are alternatives available.

"Your ovaries are there for a reason; they are part of what makes you a woman. To lose them, for what I think is no good reason, is a crying shame."

Sally, who lives in Harrogate and is a heart disease specialist nurse, began having painful periods when she was 15. She went on the pill in her 20s and that put a stop to the monthly pain.

Then, when she was 29, she decided to try for a baby with her husband Rob. She came off the pill and they tried for 18 months, but nothing happened.

"Because I'm a nurse I thought about what might be causing the problem, and I considered endo," she said. "But it wasn't until I was actually diagnosed that the possibilities hit me. I thought okay, that's it, I'm never going to have children."

Luckily, with the help of fertility treatment, Sally did eventually fall pregnant - twice within 14 months. She had two beautiful baby girls, Claire and Hannah, now nine and seven, but she also had terrible pains in her pelvis that could last for weeks at a time.

"It was tough enough looking after two babies, but I was also ill for about 50 per cent of the time," she said. "I had to take painkillers all the time - usually about 26 Nurofen a day. I was basically overdosing just to get by."

Sally struggled on like this for a year before a laparoscopy confirmed that her pelvis was riddled with endometriosis, exacerbated, she believes, by the caesarean operations she needed to deliver her children.

"My womb was tilted back and stuck behind my bowel," she said. "Everything was one big twisted mess. It was then that I was told the only solution was a complete hysterectomy, including losing my ovaries."

She spent the next few days crying. Then she decided to fight back.

She found an acupuncturist in Pateley Bridge who helped her manage the pain but, at £30 a week, it proved too expensive. So she turned to the National Endometriosis Society for help.

It was at one of the society's support group meetings in Bradford that she met Ashwini Trehan, a consultant at Dewsbury Hospital and the man who was going to change her life.

"His message was really simple," she said. "Don't remove the ovaries, remove the disease. It seemed so blindingly obvious.

"I saw it as a real chance, but there were other women crying. I realised that they had already had hysterectomies and their chance had gone. They had been robbed of the chance to have children or they had lost their ovaries for no good reason. It was heartbreaking."

After seven hours of keyhole surgery with Mr Trehan, all trace of endometriosis had been removed from Sally's pelvis. It had literally been peeled away.

She was home within 24 hours and fully mobile again within a week. Unfortunately, two years later further tests revealed the disease had infiltrated her womb causing adenomyosis, a rare condition that only affects a small number of endometriosis sufferers. This meant a hysterectomy was inevitable.

"The main thing for me was that I didn't have to have my ovaries removed," said Sally. "That made a big difference. It means I have a regular cycle and that my bones are protected. It also means I still feel like a woman."

Since having her hysterectomy in 2002, she has gone from strength to strength. She now runs her own support group and is campaigning for centres of excellence to be set up around the country to help the two million sufferers.

In the meantime, she is working hard to raise awareness about the disease and the choices women have when it comes to treatment.

"Before endo sufferers make life-changing decisions they need to know what their options are," said Sally. "Women need to realise that a full hysterectomy should always be the last resort."

Endo facts:

- Most women with endometriosis are diagnosed between the ages of 25-40. Patches of endometrium (the inner lining of the womb) often occur in the pelvis or lower abdomen, and can occur in the fallopian tubes, the ovaries, within the muscle of the womb, in the lining of the nose, in the lungs, intestines, rectum and, very rarely, under the skin.

- Hormonal circulation during a sufferer's menstrual cycle means endometrial tissue anywhere in the body thickens and bleeds in the same way that the lining of the womb does during a period. If the tissue is trapped in other parts of the body it can lead to pain, swelling and bleeding.

- The most common symptom is painful periods. Other symptoms include painful sex, discomfort when urinating, rectal bleeding, bowel blockage and coughing blood.

- Difficulty getting pregnant is a common problem for women with endometriosis, especially if the endometrial tissue is near the fallopian tubes. Between 15 and 50 per cent of women who go to their doctor with problems conceiving will have endometriosis.

- The exact cause of endometriosis is not known. It has been suggested, however, that endometrial tissue can pass back along the fallopian tubes during menstruation into the pelvic or abdominal cavities. It has also been proved that endometrial cells can be carried in the blood and lymph vessels to remote parts of the body.

- Endometriosis is more common in close relatives of women with the disease. It is rare in Afro-Caribbean women and more common in Asian women than in white women.

- The condition is usually diagnosed after an examination called a laparoscopy, which involves a narrow viewing tube (a laparoscope) being passed into the body so the specialist can see the tissue and take a small sample.

- There is no cure. But treatments include: pain-killers for keeping the symptoms under control; hormone treatments to stop ovulation and encourage the tissue to shrink back; and surgery to remove areas of endometrial tissue.

- A hysterectomy or oophorectomy (removal of the womb and ovaries) are generally regarded as a last resort. There is evidence that, even after this radical surgery, endometriosis can come back.

Facts and figures: NHS Direct

The doctor's diagnosis

"Women should resist having a hysterectomy under any circumstances," said Ashwini Trehan, the consultant who operated on Sally and who is one of the few endometriosis specialists in the country.

"In most cases, a hysterectomy makes no sense. Endometriosis is a disease which usually occurs outside the womb. If you have a hysterectomy, you take the womb away and leave the disease behind."

Occasionally, as in Sally's case, the endometriosis infiltrates the womb and a hysterectomy is necessary. But, even then, Mr Trehan advises against removing the ovaries.

"Unless they are grossly distorted, it is simply not necessary," he said. "If you take away a woman's ovaries at 35 she immediately becomes 55. Overnight, you are robbing her of 20 years of her life."

Mr Trehan backs Sally's call for centres of excellence up and down the country, but this can only be achieved, he added, with a substantial injection of money, a structured training programme and a change in attitude across the board about this crippling disease.

"People concentrate on cancer because it kills you," he said. "But living with endometriosis can be as painful and soul-destroying as living with cancer, and it can go on for years and years."

For more information about Mr Trehan, endometriosis and keyhole excision surgery, click on to his websites at www.endometriosis-consultant.co.uk or www.keyholehysterectomy.co.uk

Updated: 09:42 Tuesday, July 27, 2004