Endometriosis

The enemy in my belly: endometriosis

Some complain of the most severe period pains, others feel as if they have upset their stomach during menstruation. Pain during urination, bowel movements or sexual intercourse is also not uncommon. Endometriosis has many faces - and most of them are pretty ugly.

The fact is, because it brings such a variety of symptoms, endometriosis is often diagnosed late or not at all. Yet it is estimated that 4 to 30% of all girls and women of childbearing age are living with it1. Among women undergoing fertility treatment, 30 to 50% are affected. In all patients, the type of mucosa that actually lines the uterus is also found in places in the abdomen that are not intended for it. This can be, for example, in the abdomen, vagina, ovary, intestine, kidney or bladder. During menstruation, all affected regions contract, which can cause severe pain depending on the size and location. Severe inflammatory reactions and scarring are also associated with endometriosis, causing fertility to suffer in many.

Not every gynecologist immediately initiates a comprehensive diagnosis when a patient reports such symptoms, and so many girls and women think that such pain is simply part of menstruation. Or that they can't tolerate certain foods or are generally very sensitive. But the fact is: no woman should have to live with endometriosis. Even if it can't be magicked away, there are some effective treatments for the pain and for fulfilling the desire to have a child, if there is one.

„Why me?“

It has not yet been researched how exactly endometriosis develops. There is a transplantation theory that states that menstruation can also occur in a backward direction, i.e. inward instead of outward - cells then enter the abdominal cavity via the fallopian tubes, which is how endometriosis develops in the small pelvis. A second theory is the metaplasia theory. It assumes that endometriosis cells develop from stem cells in the peritoneum. This requires certain stimuli, e.g. estrogens (female hormones). A third, more recent theory suggests that endometriosis develops from loosened parts of the lowest layer of the uterus. Newer explanatory models discuss genetic, immunological, and hormonal causes. The fact is that endometriosis runs in some families1.

Endometriosis is particularly common among girls and women who were very young when they had their first period, who have extra or frequent bleeding, and who are still childless. In 2014, a longitudinal study from Australia suggested that early use of birth control pills may increase the risk2. According to the current state of research, diet has at most a small influence, with a lot of red meat probably having a negative effect, and a lot of fruit and green vegetables having a positive effect1. But here, too, many questions remain unanswered.

How endometriosis is treated

With such a wide range of symptoms, it is clear that it often takes several doctors to come up with a diagnosis and a treatment plan. If your gynecologist does not take your symptoms seriously, then please keep looking. Sometimes a gastroenterologist or nephrologist will have the right idea. If you have severe endometriosis, you are in good hands in an endometriosis center with specialists from many disciplines. The German Endometriosis Association has an up-to-date list of these centers3.

Many patients benefit from the hormonal changes during pregnancy, in the short term or even permanently3. Another advantage: If the baby is breastfed for a long time, menstruation often also stays away for a long time - meaning endometriosis pain does as well1,4,6.

Painkillers that also inhibit inflammation, such as ibuprofen, are suitable for short-term use during the days 4 after consultation with a doctor or pharmacist. Relaxation techniques, biofeedback, yoga, and acupuncture can reduce the sensation of pain and help to make the symptoms easier to bear1.

Many people report good experiences with nutritional supplements, CBD oil, hot water bottles, mud wraps, herbal therapy, and much more5. Even the scientific guidelines on endometriosis acknowledge the potential of naturopathic therapies6.

In severe cases, surgery may be necessary to give the patient – temporary or permanent - relief. On the one hand, laparoscopy, which can already be part of the diagnosis and enables some women to become pregnant, has proven itself effective. On the other hand, surgery is necessary when organs are so severely affected by endometriosis that their function suffers. Patients are in particularly good hands in a center with a lot of experience with these procedures.

Optimistic view to the future

Many girls and women still agonize over several years until they are finally diagnosed with endometriosis. Currently, seven years pass on average until diagnosis1. But where previously those affected could only hope for the positive effects of pregnancy and breastfeeding on the one hand, and menopause on the other, a great deal of research is now being done on endometriosis worldwide. More and more women are talking openly about it, meeting in self-help groups, and becoming active.  Thus, it can be assumed that the number of competent doctors and effective therapies will steadily increase and that more and more girls and women will have a good life despite a diagnosis of endometriosis.

Help for affected persons

Do you suspect you have endometriosis or have you already been diagnosed?

At the Endometriosis Association Germany you will find more helpful information and many support services.

 

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Sources:

1) Brochure of the Endometriosis Center of the University Hospital Erlangen.: https://www.uk-erlangen.de/fileadmin/dateien/content_pool_dateien/infobroschueren/UEZ_endometriose_broschuere.pdf

2) Tu FF et al: The influence of prior oral contraceptive use on risk of endometriosis is conditional on parity, Fertility and Sterility, Volume 101, Issue 6, 2014, Pages 1697-1704, https://doi.org/10.1016/j.fertnstert.2014.02.014

3) Endometriose-Vereinigung Deutschland e.V.: https://www.endometriose-vereinigung.de/sefzertifizierte-endometriosezentren.html

4) Stiftung Warentest (2021): Medication for endometriosis: https://www.test.de/medikamente/krankheit/endometriose-k265/

5) Endometriose-Vereinigung (2021): https://www.endometriose-vereinigung.de/literaturtipps.html#schmerzen

6) Interdisciplinary S2k guideline (2020):https://www.endometriose-vereinigung.de/files/endometriose/015-045l_S2k_Diagnostik_Therapie_Endometriose_2020-09.pdf