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
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.
"About 40 per cent of sufferers have reduced rates of fertility," says Geraldine.
But none of this was known to her, when she began working.
"In 1989, I went to the doctor, but on this occasion there was a locum in his place and he put me on the Pill. But when I went back three months later, the usual doctor refused to prescribe it. So, I had to go to the locum who was in a practice elsewhere," she says.
Over the years, Geraldine would encounter doctors who failed to take her problems seriously, even though her symptoms were getting worse and worse. "Coming up to a period I'd start feeling very cold and would experience a lot of pain. I used to have to sit on the heaters at work," she explains.
"At a hospital in Cork I was told I had a retroverted uterus. That is classic in endometriosis. Yet they refused to do a laparoscopy. They said it was too risky."
Then there was another doctor who told her not to eat pasta, and another who put her on a medication that kept her awake at night, making matters even more difficult to endure.
"If I were a man, they would probably take it seriously. But they don't seem too concerned about women's issues. They seem to think it is normal to have such painful periods," Geraldine says.
So for 28 long, painful years Geraldine searched in vain for an explanation for her many health problems.
Then, in 1999, she began having episodes that would cause her to perspire profusely and her stomach to go so rigid she just couldn't move.
Following one such frightening attack, she was finally admitted to the Bon Secours Hospital in Tralee where internal growths were detected.
An ultrasound and a scan revealed the presence of cysts on both ovaries.
"The gynaecologist said the cysts were causing the severe pain. The surgeon who operated on me said the cysts had turned to 'bone'.
"But then she clarified that by saying they had calcified. She had never met anyone else who had cysts that had calcified. That will tell you how long I had them," she says.
Subsequently Geraldine was put on a male hormone to counteract the effects of estrogen which is the hormone responsible for the menstrual cycle. Fibroids were also discovered. In 2007 a uterine fibroid embolisation (UFE) procedure was performed. This blocked blood supply to the fibroids causing them to wither. Soon after, Geraldine's persistent stomach problems began to disappear.
So, 28 years after they had first presented, Geraldine's problems were finally being taken seriously, and slowly she began to improve.
However, one situation that could not be reversed was her childlessness. Married to Sean since the early Eighties, Geraldine discovered she was infertile in 1995, and that came as a real blow.
"Like anyone else I would have liked to have the option whether or not to have children," she says. "But I was denied that choice because of the late diagnosis of endometriosis." Geraldine stresses the importance of early diagnosis and a better understanding of this often very troubling disease.
"People seem to be reluctant to go public about this. So I really want to raise awareness in the community and in the medical world about endometriosis. A late diagnosis can cause years of pain, all sorts of lifelong problems and can lead to infertility."
L
The Endometriosis Association of Ireland, tel: (086) 320-3855, see www.endo.ie,
or email info@endo.ie
Originally published in
