For a long time it was said: you have to endure severe pain during your period. Endometriosis is now becoming more and more known as a possible cause. On the other hand, we still know very little about another: adenomyosis
One week a month: For most women, this is more or less the period in which they adjust to discomfort, possibly pain. That’s how long it takes on average period.
Pain so bad that fainting and vomiting are “normal”.
Chiara Schreder, on the other hand, only has no pain for one week a month. Days before her period she has heavy ones cramps in the abdomen. During menstruation itself it is unbearable. She suffers from fainting spells and throws up frequently. Then another week of pain. And then finally a few days without medication.
“When doctors ask me to rate the pain on a scale of one to ten, I say eleven,” says the 25-year-old filmmaker from Upper Austria. And on good days? “Five.” She got her period when she was 15. Since then she has survived every month this ordeal and knows all the comments about it: “That’s normal”, “That’s how it is for many”, and “Don’t be so rude!”
But Chiara Schreder doesn’t do it. Your pain has an organic cause. Two years ago she was diagnosed with adenomyosis. This creates uterine-like tissue in a place where it doesn’t belong – in the muscles of the uterus. Adenomyosis is closely related to endometriosis, the most common disease in women of childbearing age, and it is not uncommon for women to have both at the same time.
Adenomyosis is less well known than endometriosis, but at least as painful
In people with endometriosis, uterine-like tissue usually settles in the lower abdomen, but sometimes also in other parts of the body. It behaves cyclically like the uterus. Every month it is active – only nothing can drain off like menstrual blood. This causes inflammation, adhesions and cysts. There are no exact numbers on how common endometriosis is – not every one is accompanied by severe pain. However, estimates assume that four to 30 percent of all women are affected. Conversely, it is believed that in half of all women with severe menstrual pain, the cause is endometriosis.
While knowledge about endometriosis is growing, at least slowly, and the condition is gaining attention, it is Medically speaking, adenomyosis is a far greater unknown. However, their spread seems enormous: According to studies, adenomyosis affects up to 70 percent of all women of childbearing age. Nevertheless, it is rarely diagnosed by gynecologists. Thanks to ever-improving ultrasound technology, they have only been gaining new insights for a few years. It is becoming apparent that adenomyosis may be a disease that precedes endometriosis. If it could be detected early, it could be treated – and patients would be spared many years of suffering and pain.
professor dr Sylvia Mechsner is head of the endometriosis center at the Berlin Charité. She has been researching adenomyosis and endometriosis and treating those affected for almost 20 years. She knows: Even diagnosing endometriosis is time-consuming. Especially at a young age, the pathological changes in the abdomen are often not so pronounced that they can be detected in the ultrasound. Only later do tissue foci or cysts appear in the bladder or intestines.
A diagnosis is difficult to establish
Identifying adenomyosis is even more difficult: Only ultrasound images of a thickened or asymmetrical uterine wall provide clues, Cysts in it or an irregular transition between mucous membrane and muscles. Sylvia Mechsner therefore asks her patients exactly what their symptoms are. The gynecologist needs an hour to know whether endometriosis or adenomyosis is the reason for her pain.
“Affected women have symptoms for an average of ten years before they are diagnosed with endometriosis,” says Sylvia Mechsner. Often the cause is only recognized when the uterus of an older woman is removed and examined – or when people are trying to get pregnant and are unsuccessful. Because the pathological changes can lead to a fertilized egg cell not implanting in the uterus or not being held. In addition to the years of pain and limitations, there is also an unfulfilled desire to have children.
“Adenomyosis and endometriosis seem to have a genetic cause,” says Sylvia Mechsner. “We assume that the uterus is cramping too much.” Over many years, this ensures that tiny injuries develop in the uterine wall: “The mucous membrane lies directly on the musculature of the uterus, there is no shifting layer in between.” In the intestine, a layer of connective tissue ensures that the contents of the intestine slide through the organ without tearing the mucous membrane. On the other hand, if mucus and blood are expelled from the uterus during the menstrual period, unrestrained shearing forces act on the mucous membrane and muscles. “Hairline cracks can form in the transition zone,” says Mechsner. During the wound healing process, stem cells in the lining of the uterus are apparently also activated, which migrate and form adenomyosis in the muscles or create endometriosis foci in the abdominal cavity through the fallopian tubes.
Treatment of adenomyosis only after family planning is complete
Both diseases are difficult to treat. It is often limited to alleviating the symptoms – with painkillers. In the case of endometriosis, the foci can sometimes be removed by surgery. In the case of adenomyosis, which occurs solely in the musculature of the uterus, the only option is to remove the organ. Which also means not being able to have children anymore. “That’s why we only do this for women over 40 whose family planning is complete,” says Sylvia Mechsner.
In younger patients it touches down hormones, namely progestogen-only preparations or the combination pill, but not for contraception, but as a drug. Taken consistently, they prevent menstrual bleeding. Hormonal coils or artificial menopause induced by medication can also stop the progression of the disease. The thought behind it: By suppressing menstrual bleeding, the monthly cramps of the uterus also stop. The micro-injuries can no longer increase and the disease would come to rest.
Chiara Schreder shied away from hormone treatments for a long time – her fear of side effects was too great. Instead, she tried acupuncture, osteopathy, and herbal treatments. After a long struggle, she has now had a hormone spiral inserted on the advice of her doctor. In the months that followed, the pain initially even increased – and then steadily decreased. Since then her condition has continued to improve and each month has more and more good days.
Learn more…
To read
dr Sylvia Mechsner’s book about endometriosis and adenomyosis: “Endometriosis – The underestimated disease” (242 p., 24.99 euros, ZS Verlag)
In the web
The German Endometriosis Association provides information, advice, addresses of self-help groups and certified endometriosis centers: endometriose-vereinigung.de.