Endometriosis: A cycle of pain

Geraldine O’Sullivan-Hogan suffered agony every month for 28 years, says Joy Orpen, and she is convinced doctors would have treated her more seriously had she been a man

Independent.ie

February 20, 2011

Having a chronic condition is bad enough, but when the medical profession fails to take it seriously, then a grave injustice is done. This, it would seem, is quite common in an illness that is exclusively confined to women.

Endometriosis is intrinsically linked to the menstrual cycle. It occurs when the endometrium — the tissue which lines the uterus — grows elsewhere, usually within the pelvic region. It behaves in much the same way as the lining of the uterus does, thickening and then bleeding during the menstrual cycle in response to hormonal changes.

However, unlike the tissue in the uterus, this waste matter has nowhere to go and causes scarring, tissue damage and adhesions.

If Geraldine O’Sullivan-Hogan, 50, had been diagnosed with this condition when she was much younger, she might have been spared untold suffering and confusion.

She says her childhood growing up on a small farm in rural Kerry was quite normal, until the age of 11, when she had her first menstrual period.

“That was fine, but the second was very painful,” she says. “It felt as if my insides were going to fall out.”

There was very little Geraldine’s mother could do beyond giving her daughter aspirin when she was menstruating. “I went to school dying from the pain. I also had a lot of diarrhoea, so it was difficult,” Geraldine recalls. Her problems were discussed with a doctor who said putting her on the contraceptive pill might ease her symptoms, but he refused to prescribe it as she was under 16.

So Geraldine had to soldier on.

“I dreaded getting my periods. I’d go around doubled over or I’d go to bed with a hot-water bottle. All there was in those days was aspirin. But, to be honest, even when I was given stronger painkillers later on, I soon discovered they didn’t touch that pain,” she says.

The Endometriosis Association of Ireland (EAI) says the condition is relatively common.

“A lot of women have endometriosis and never know about it because it doesn’t cause any problems. It is graded from one to four. In more severe cases the disease can behave in an aggressive manner and may spread to surrounding tissue, causing significant pain and infertility. The severity of the symptoms seems to depend on the location of the endometrial growths, if there are cysts, where the cysts have formed and if there are adhesions.”

The cause of the condition is unknown. One theory is that the endometrium escapes from the uterus into the pelvic area; another hypothesis suspects a genetic predisposition. What is certain is that there is no cure — all doctors can do is treat the symptoms.

Geraldine says an extensive survey in the US found that among endometriosis sufferers there was a high incidence of auto-immune type diseases, including lupus, MS, chronic fatigue syndrome, fibromyalgia, as well as muscular and skeletal issues. The condition could also affect the ability to conceive.

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Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.