Health: My thirty-year war

Thirty years of pain came to an end three weeks ago when I came to my senses and decided to live a life without agony, even if it meant living it without children. At the age of 39, I had my womb and ovaries removed.

Ever since I started my periods at the age of nine, I had suffered from a painful gynaecological disease that went undiagnosed for 30 years.

I might still be lying in a corner of my sitting room praying the pain would cease long enough for me to walk to the toilet if it hadn't been for friend who told me, in August last year, that my symptoms sounded just like endometriosis.

Weeks later, I was to discover that I was a text-book case of a condition that had been discovered as long ago as 1895. Endometriosis is thought to afflict one in 10 women but, as in my case, it often goes unrecognised. A national survey, published yesterday, found that women with the disorder wait on average seven years for a correct diagnosis.

Endometriosis is caused by the lining of the uterus, the endometrium, floating back up through the fallopian tubes and fixing on the internal organs instead of being shed during a period. The fragments of endometrium continue to respond to the hormonal signals sent by the ovaries every month and fill with blood, thicken, break down and bleed - but the blood has no way to escape and remains in the body. Recent cases have shown this material can travel throughout the body; it has even been found in the brain.

Many sufferers eventually develop adhesions that cover the ovaries and block the fallopian tubes, causing infertility in 20 to 40 per cent of sufferers as well as pain.

Medical opinion is split on why some women develop the disease. The latest research, by Stephen Kennedy, consultant gynaecologist at the John Radcliffe Infirmary in Oxford, seems to indicate there might be a genetic cause, but the theory is far from proved.

I first went to the doctor when I was 14, when the pain became unbearable. Over the next couple of decades, I was treated for anaemia, depression, backache, ovarian cysts, severe fatigue and haemorrhoids. Three years ago, I had a laparoscope inserted into my navel and carbon dioxide pumped into my abdomen so the surgeon could have a good look around. He found dense pelvic adhesions which, he said, were probably the result of infection, and which had virtually glued my ovaries and fallopian tubes to the wall of my abdomen.

I was told to put up with the pain; even with surgery, the adhesions would return. I did this until last August, by which time the pain was so bad I was spending large amounts of time flat on my back. I was told that ovulation was causing the pain; nine days later, the pain was worse and I was admitted to hospital with a suspected infection.

Then I found my saviour - Mark Charnock, consultant gynaecologist at Oxford University, who told me for the first time that I didn't have to put up with it. So started a series of examinations during which I had every instrument imaginable inserted in every opening the body has to offer.

In October, I had another laparoscopy to cut the adhesions, which was when the endometriosis was spotted. I was told there was no cure for this disease except for menopause or hysterectomy. Even though I am separated, the thought of giving up my ability to give birth was appalling.

Hormonal treatments are available but many have side-effects or are experimental. Women in the US have been treated successfully with a drug called Danazol, a synthetic version of a male hormone which shrinks the implants, but the side-effects of increased facial hair, bloating, weight gain, hypoglycaemia and lowering of the voice can cause severe distress.

Finally, I opted for treatment with pseudo-menopausal drugs in the form of Zoladex, a synthetic hormone known as gonadotrophin-releasing implant. This suppresses the action of the ovaries and thus creates the equivalent of the surgical removal of the ovaries. At 39, I was menopausal and possessed by a demon singularly unfamiliar with the principles of bladder control.

Tested in the US, these drugs have only recently been used in the UK. Trials have shown they produce cancer in rats after six months, so they can only be used in the short term providing there is a brief spell of relief while the patient adjusts to the prospect of losing her ovaries. Long-term studies of the drug have already shown a loss of bone mass which can lead to osteoporosis and a thinning of the vaginal wall.

Taking the drug got rid of the pain, but it meant six months of hot flushes and night sweats. I didn't get a good night's sleep for the entire course of treatment; I would have said yes to anything that would put an end to my agony. My GP concluded that a hysterectomy was the best option, although I found it a frightening prospect.

I woke up from the operation a new and happier woman. Perhaps it's the HRT implant put in at the same time, but I feel better than I have done since my first period at the age of nine, despite the fact that I am recovering from what is a very major operation. I wish I had done it 20 years ago. Perhaps I wouldn't have spent so much time in misery.

Contact the National Endometriosis Society helpline on 0171 222 2776.

SYMPTOMS CHECKLIST AND SOME TREATMENT OPTIONS

TELLTALE SIGNS:

Pain before periods

Pain with periods

Pain on ovulation

Pain with intercourse

Pain with bowel movements

Pain with urination

Bleeding between periods

Heavy, irregular or skipped periods

Fever

Enlarged lymph glands

Flu-like symptoms (lethargy, muscle ache)

Fatigue

Diarrhoea

Constipation

Backache

HORMONAL TREATMENTS

Oestrogen: Female hormone that suppresses the function of the ovaries. Side-effects include weight gain, nausea, vaginal discharge, depression and irritability. Research has shown increase in the rates of vaginal cancer.

Androgen: male hormone that also suppresses ovulation. Masculinising side-effects include deepening of the voice, increased facial hair and severe acne.

Danazol: a form of danocrine, a pseudomenopausal, synthetic male hormone. About 90 per cent effective in pain control. Shrinks implants and has been found to restore fertility in some cases where fallopian tubes are blocked. Side-effects include weight gain, depression, facial hair increased, deepening of the voice, decreased breast size, hair loss, swelling, fatigue and sweating.

GmRh: Synthetic female hormone marketed as Zoladex. Almost complete relief but untested beyond six months.