Endometriosis: widespread but seldom recognised

Endometriose: Weit verbreitet, aber selten erkannt

Severe period pain or difficulty getting pregnant – endometriosis could be responsible. But the disease often goes undetected for quite a long time.

What is endometriosis?

Endometriosis is a benign but chronic condition where tissue similar to that which normally lines the womb (endometrium) starts to grow elsewhere outside it. This can lead to superficial or deeply infiltrating growths (endometrial implants), ovarian cysts or thick bands of scar tissue (adhesions). Like the endometrium, this tissue builds up and sheds with the menstrual cycle. However, the blood cannot flow out of the body as normal and has to be broken down by the immune system, which can lead to various types and degrees of pain, and infertility.

How does endometriosis develop?

We are not yet entirely sure. One likely theory: endometrial cells, which normally exit the body via the vagina along with the menstrual blood, migrate back through the fallopian tubes into the pelvic area, where they attach themselves and start to grow, stimulated by the hormonal cycle.

Preventing endometriosis? Because the exact cause of endometriosis is unknown, no preventive measures have been developed so far.

Prevalence of endometriosis

Around 10% of all females of childbearing age are affected by endometriosis; in Switzerland, that's roughly 190,000 women. The disease often begins between the ages of 20 and 30, but in some younger women it starts during their very first period.

Does it only affect the genital area?

Endometrial implants can occur almost anywhere in the body, but are most commonly found in the lower abdomen. A distinction is made between endometriosis

  • in the genital area: Endometriosis in the fallopian tubes, ovaries (in the form of cysts), wall of the uterus
  • Endometriosis in the ligaments of the uterus
  • Endometriosis in the vagina
  • Endometriosis in the pelvic peritoneum
  • Endometriosis in the bladder
  • Endometriosis outside the genital area, e.g. in the gut or navel
  • In rare cases, the lungs, liver, skin (such as in an old scar) and other organs can be affected.

Symptoms of endometriosis

Endometriosis is not necessarily associated with symptoms; some women don't experience any pain whatsoever. Others, however, find the pain practically unbearable. The symptoms are non-specific and depend on where the endometrial implants have settled.

But women often complain about pain:

  • in the lower abdomen shortly before or during their period
  • in the lower abdomen regardless of their monthly cycle
  • during sex or gynaecological exams
  • in the legs and/or back
  • during bowel movements
  • when urinating
  • If the wall of the uterus is affected, there will also be heavy menstrual bleeding
  • If the implants are stuck to the bladder or bowel, blood may appear in the urine or stool

Does endometriosis make you infertile?

Every third to fourth woman who is unable to have children suffers from endometriosis. However, we still don't know exactly why this should be. One possible explanation: the inflammation leads to poor egg cell quality and can stop the sperm and fallopian tubes from functioning properly. This makes fertilisation more difficult.

Why does the condition often go undetected?

Many women consider a painful period to be normal or ascribe their inability to get pregnant to other causes. Reports on women's experiences additionally show that their symptoms are often not taken seriously and go undetected by their doctors. So it takes an average of six years for the condition to be discovered. A long time to suffer. «Endometriosis not only affects a woman's physical wellbeing, it can also have a psychological impact and place a great strain on partnerships,» says Peter Martin Fehr from the Graubünden Cantonal Hospital's endometriosis unit.

Diagnosing endometriosis

A thorough discussion of the symptoms, a physical exam and ultrasound can provide the first pointers. The only way to reach a clear diagnosis, however, is by laparoscopy. This means inserting a small instrument inside the abdomen to view the affected organs and remove tissue. It's even possible to remove the endometrial implant during this diagnostic procedure.

Why is a proper diagnosis needed?

According to specialists in this area, it's important to detect the disease at an early stage: on the one hand, to prevent infertility, and on the other, to stop the pain becoming chronic.

Treating endometriosis

«Treatment is based on the individual patient's needs.», says gynaecologist Peter Martin Fehr. There are a number of treatments to choose from, and they can often be combined. Ideally, this will involve different specialists working together at specialised units.

Elements in detail: Medication Laparoscopy Hysterectomy

Medication for endometriosis

  • Anti-inflammatory painkillers
  • Hormone treatment. This ensures that the implants no longer go through the cyclical changes, thus reducing the inflammation. Oestrogen-progesterone combinations, various progesterones or GnRH analogues are used to alleviate or suppress the monthly cycle.

Hormone preparations can have side-effects such as weight gain or mood swings. It is important to speak to your doctor about them.

Laparoscopy for endometriosis

Endometrial implants are removed by laparoscopy. The gynaecologist inserts special instruments into the abdomen through tiny cuts in the skin. The affected areas are either cut out or destroyed using heat or laser.

The success rates are good

Some 80% of women notice an improvement in their condition after the operation, providing they also take hormone preparations. While these alleviate the symptoms, they do not improve fertility.

Surgery alone can increase the chance of getting pregnant. Every second woman who has the treatment is subsequently able to have a family. However, sometimes additional treatment such as artificial insemination is required.

Hysterectomy for endometriosis

If your family planning is complete and you experience very severe pain, you might consider a hysterectomy to remove the womb. Removing the ovaries and fallopian tubes at the same time is generally not recommended.

Is endometriosis curable?

Endometrial implants can come back after an operation. Without hormone treatment, 40% of women see a recurrence of the symptoms within two years. They usually don't disappear completely until menopause.

Alternative therapy?

  • At present, there is no clear evidence that endometriosis can be cured by natural means. Alternative treatment methods like Traditional Chinese Medicine (TCM), exercise or a change of diet may help relieve the pain. 
  • If the pain is chronic, an interdisciplinary approach involving pain management, physiotherapy, psychotherapy and nutritional advice is recommended.
  • If you are unable to work, or have work- or insurance-related problems, a social worker might help.
  • It can also be a good idea for sufferers to join a self-help group where they can talk to others

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