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It started with abdominal pain - cramps that Rosi experienced for a few days every month during her period that forced her to stay home for a few days.
Now 56, Rosi is in constant pain. For 26 years she has suffered from endometriosis, a chronic ailment caused by cells from the uterus lining that establish themselves outside the uterus. Hormone therapy in the form of oral contraceptives can help to alleviate the pain that is generally cyclical. The painful tissue can also be removed surgically. But in some cases, the pain merely gets worse and the women have to learn to live with it.
About 10%of all women of childbearing age are thought to be affected, but there are no exact figures as the symptoms are often ambiguous. They range from pain in the lower abdomen associated with periods, nausea, migraine and pain when having sex to difficulties with defecation. This complicates diagnosis.
Karin, 38, went to seven doctors before being diagnosed with endometriosis. "On average, diagnosis takes almost seven years," says Stefan Renner, of the gynaecological department at the university hospital in Erlangen, Germany, and head of the endometriosis centre.
"If the patient is no longer in control of her life as a result of pain, then it's time to go to the doctor," says Uwe Ulrich, senior gynaecologist at a Berlin hospital. What causes the disease remains something of a mystery. What is known is that cells similar to those in the lining of the womb cause the pain.
How the cells spread
These cells spread - mostly in the lower abdomen - where they behave in a way similar to the way their counterparts do in the uterus lining, affected by hormones in the same way that cause those in the womb to swell and bleed.
These cells may mimic behaviour in the womb, but they cannot be expelled from the body. Instead they cause inflammation, pain, scarring and even in the worst cases cysts, tumours and infertility. About half of all women unable to conceive suffer from endometriosis, Renner believes.
In most cases it is only possible to find the site of the disease by keyhole surgery. Definitive diagnosis requires taking a sample of tissue, Ulrich says. If endometriosis is confirmed specialist treatment is started. "The main therapy remains surgery," Ulrich says.
This treatment does not always work. Rosi has had 12 operations and still suffers pain. "Sometimes not all the sites are found," Ulrich says. "By the fifth operation, all involved need to ask themselves whether it's worth it." Rosi would be better served by being treated for pain than by yet another operation, he believes. Karin was luckier - one operation sufficed and she is now free of pain.
(Sapa, July 2010)
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