Coping with unseen agony

Mar 22 2004

By Julie Cush, The Evening Chronicle

Endometriosis is a painful condition affecting two million women in the UK. We report on a lifeline being thrown to sufferers in the North East. ********** Claire Hollywell. Amanda O'Rawe is proud of the fact that she has never taken a day off sick because of endometriosis. The 37-year-old, of Cramlington, has suffered from the condition since her early 20s, but for many years she held down a demanding job as a regional manager in charge of seven Body Shops. Story continues ADVERTISEMENT Despite suffering excruciating bouts of pain, she never once rang in sick, even if it meant getting up at 5am to give herself time to come round. At times she could hardly stand up and often had to dash to the toilet, bolt herself into a cubicle and lie down on the floor until the attack passed. She also found painkillers weren't much use, but they had the effect of keeping her calm when the cramps came. Because of the extreme tiredness, when not at work Amanda would sleep all evening and at the weekends and the lack of exercise took its toll on her weight which ballooned to 20st. She is now down to 12st and has been on a career break since January, but is hoping to set up her own business as a human resources consultant. Now she is helping her friend Claire Hollywell to set up a support group and charity to help other sufferers. Another side effect of the condition is that sex is often painful and this also killed Amanda's love-life. "I know of some women who are only in their 30s who no longer bother with sex because it is too painful," she reveals. "We are hoping to get the support group going in the next couple of months because it really helps talking to other people in the same situation. "My attacks can last up to about 10 minutes and the only way to deal with them is to be alone and lie down. "But I'm proud of the fact that I fought never to take a day off sick because of this condition. "I always put my make-up on and dress well and hopefully when people look at me they cannot tell there is anything wrong. "My friend Claire has helped me a lot - she comes across as being the life and soul of the party and is a real inspiration." When Amanda was diagnosed it was found that her ovaries - which should be either side of her womb - were actually stuck together behind it. One of the most effective treatments she has tried was the drug zoladex which is used to treat breast and prostate cancer patients. Amanda had eight injections over six months last year and found it a "miracle" drug which gave her a new lease of life, although the effects wore off eventually. Endometriosis is a painful, chronic disease which is caused by cells, like those which line the uterus (womb), growing on other internal organs. The tissue, known as endometrium, can be found on the abdomen, ovaries, fallopian tubes, and ligaments that support the uterus. Other sites for these endometrial growths may include the bladder, bowel, vagina and cervix. Less commonly they are found in the lung, arms and thighs. This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does - each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This triggers internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation - and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems. It can also cause organs to stick together causing extreme pain. Diagnosis is usually made during an internal investigation known as a laparoscopy. It is minor surgical procedure carried out under anaesthesia and reveals the size and extent of the growths. Treatment for endometriosis has varied over the years and one option is a hysterectomy and removal of the ovaries. Painkillers are often prescribed for the pain. Treatment with hormones also aims to stop ovulation for as long as possible and can ward off endometriosis, sometimes for months or years afterwards. Claire Hollywell, 28, wanted six children but is considering having a hysterectomy, such is the pain of her condition. Three years ago she had high-flying career in London but endometriosis forced her to give up her new life to return home to be cared for by her family. She suffered from severe back ache, tiredness and extremely painful, irregular periods from the age of 20. And after several years she struggled to continue as normal and had to give up her job as an area manager for a major retail firm. She was diagnosed incorrectly with irritable bowel syndrome and pelvic inflammatory disease and spent months trying to comply with special dietary regimes to try and treat these syndromes. Even now, after steroid and laser treatment, her condition is so severe that it can stop her from leaving the house she shares with her husband Mick in Whitley Bay for six out of seven days a week. She said: "I know that, to most people a hysterectomy is a huge procedure, but I have to think seriously about anything which will give me my life back. "The trouble is that some women find the endometriosis comes back even after a hysterectomy and grows on the outside of their bowel. "It is a horribly painful condition - and like many people I had no idea it could have such a profound effect on your life. "I consider myself to be a strong career woman but when this comes along it just scuppers your plans. "I want to set up the support group because by talking to other sufferers you realise you are not being pathetic and the pain is very real." * To contact Claire and the North East Endometriosis Support Group, call 07782 293425. * The National Endometriosis Society helpline: 0808 808 2227 or visit www.endo.org.uk ************ Painful symptoms What are the symptoms of endometriosis? They vary from woman to woman, but generally speaking include: Pain before and during periods Pain during sex Pain during urination Painful bowel movements Other Gastrointestinal upsets such as diarrhoea, constipation, nausea. The cause of endometriosis is unknown. But some experts believe immune system or hormonal problems trigger the condition. It may also be caused by a genetic fault carried in families. Another theory suggests that remnants of tissue from when the woman was herself an embryo may later develop into endometriosis.

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