The wandering womb

Endometriosis is a painful condition which affects up to 20 per cent of women. What can you do if your doctor doesn't seem to be listening to your cry for help?

At the age of 13, Geraldine McGovern (29) suffered excruciating pain during her periods. Every month during menstruation, she would also be wiped out by bouts of diarrhoea and vomiting.

"I tried everything to relieve the pain, from raspberry leaf tea to rosemary oil to shots of whiskey. [For 13 years] I was seen by the same gynaecologist  . . . who made me feel like I was imagining the pain. Then, by chance, I was referred to another doctor who carried out a laparoscopy [a surgical procedure under general anaesthetic which can diagnose and treat endometriosis] and only then did I find out that I had endometriosis," she explains.

McGovern's case is not unusual, as many women suffer from endometriosis - a common gynaecological problem in which endometrial tissue (normally present only in the womb) grows outside the womb - for between eight and 10 years before diagnosis.

"This situation is changing and women are now being referred more readily for laparoscopy," says Dr Mary Wingfield, obstretrician/gynaecologist at the National Maternity Hospital, who runs an endometriosis clinic.

"The problem is that laparoscopy is such an invasive procedure - requiring a general anaesthetic - and yet it remains the only way to diagnose endometriosis." A blood test is currently used to monitor endometriosis but this is not sensitive enough for diagnosis.

Misdiagnosis is also not uncommon. Marie Crean (41), who is now treasurer of the Endrometriosis Association of Ireland, was first referred to a gastroenterologist, diagnosed with irritable bowel syndrome and given drugs to calm the bowel. Two years later, following no relief of symptoms, Crean was re-diagnosed with severe endometriosis.

"I had begun to link my symptoms with the time of my periods. But, by the time I was diagnosed, my insides were a complete and utter mess," Crean says.

She now speculates that endometriosis may have set in after the birth of her son by Caesarean section 16 years ago, because endometriosis is known to thrive where scar tissue is present.

One of the most common gynaecological complaints, endometriosis affects one or two out of every 10 women. It occurs when the endometrial tissue which forms the womb lining (the nutrient rich tissue designed as a nest for a fertilised egg), grows in areas outside the womb, at times linking organs together inappropriately or preventing the correct functioning of organs. Endometriosis can affect fertility when the ovaries and fallopian tubes are infiltrated with endometrial tissue.

Currently, there is no known medical cure for endometriosis. However, it disappears during pregnancy and following the menopause, due to changes in the reproductive hormones in the body at these times.

Dr Wingfield says that while there is increased awareness of endometriosis, it is difficult to say whether the condition is on the increase. "It is becoming a medical problem because women are not pregnant as often as in the past."

Crean says that the Endometriosis Association of Ireland is getting more calls from mothers of teenage girls who are showing the symptoms of endometriosis.

"Our next project will be to target these young women and explain how it is not normal to miss school and not be able to participate in games during their periods," she says.

Surgical and drug treatments can provide relief for varying lengths of time.

"One of the difficulties is that endometriosis is so different in each case and treatment has to be individualised for each woman depending on whether fertility is an issue and she wants to have children or whether she wants medical or surgical treatment," says Dr Wingfield. Medical treatments suppress symptoms while surgical treatments (mainly laparoscopy) burn away endometrial tissue via laser or cauterisation.

One of the biggest issues for sufferers is finding a treatment plan which can help them conceive when the condition has compromised their fertility.

Fiona O'Carroll (31), was diagnosed with endometriosis in July, 2001, following years of painful periods and a long spell on the contraceptive pill to relieve the pain.

"It disabled my life through my teenage years and my 20s but I think for many women it is only when they have difficulty conceiving that endometriosis is diagnosed," says O'Carroll. "By the time I was diagnosed, I had severe endometriosis - my uterus and bowel were joined together because of it. Laser laparoscopy - which is only available at St James's Hospital, Dublin - was seen to be the only suitable treatment in my case. Meanwhile, I got married and moved to Galway."

While awaiting surgery, O'Carroll was put on pseudomenopausal drugs to relieve her symptoms. However, she suffered huge side effects - hot flushes, depression, fatigue, mood swings - and was relieved finally to be scheduled for surgery in April of this year.

"The big issue now is to have a baby. It's been difficult considering everything my body has been through - endometriosis, drugs and surgery. But, I'm going to a herbalist at the moment and starting to get healthy again."

McGovern has realised that she suffers more pain from endometriosis when she is stressed or upset. Becoming aware of when her pain is worst and doing yoga and breathing exercises to relief the pain has helped.

"I was very angry for a long time because doctors and colleagues wouldn't believe the pain I was in. And, I was never offered any form of counselling. Now, I'm letting go of that anger and learning to support myself better," she explains.

Some women are also finding pain relief via complementary therapies such as acupuncture and herbalism. Reducing the intake of red meat and dairy products has also helped some.

"I've made a lot of changes to my diet. I don't eat red meat. I've cut down on white bread. I attend an acupuncturist and I've taken up yoga," says Crean.

A new book, Endometriosis - a key to healing through nutrition by Dian Shepperson Mills and Michael Vernon (Thorsons) presents evidence from a placebo controlled study which found that nutritional supplementation and/or improvements in the diet may offer significant alleviation of some of the symptoms of endometriosis. They hope this work will prompt further research into the role of nutrition in the treatment of endometriosis.

The Endometriosis Association of Ireland is hosting its first open day from 10 a.m. - 5 p.m on Saturday in the Pillar Room, The Rotunda Hospital, Dublin. Speakers from the medical and alternative healthcare professions will be present.

A new website, www.endo.ie will also be launched. Tel:01 8735702 for more details.