Information
Endometriosis is a common condition where tissue that resembles and behaves like the lining of the womb (endometrium) grows outside of the uterus in other parts of the body. It can appear in many different places, including the ovaries, fallopian tubes, inside the stomach, and in or around the bladder or bowel. Endometriosis mainly affects people of childbearing age. It's less common in folks who've been through menopause.
Symptoms can include:
- very intense period pain that isn't relieved by taking painkillers
- heavy periods – for example when you leak despite using a large tampon and pad together
- pelvic pain – during your period or all the time
- pain during and after intercourse
- pain or discomfort when using the toilet
- hemorrhoids
- constant tiredness
- frequent headaches, dizziness or stomach ache
On average, it takes seven years for someone with endometriosis to be diagnosed although it's a very common disease: it affects an estimated 176 million people with uteruses in the world.
The reason for this is sexism. Period-related pain is cloaked with shame and secrecy. People affected by it are often told it's “psychosomatic”, a “women's curse” or that they are “too sensitive” - even by professionals like doctors, nurses and/or gynecologists). Endometriosis is difficult to diagnose – but not if the right tests are done. If you have been suffering debilitating period pain and / or several of the symptoms listed above and your doctor / gynecologist hasn't yet mentioned the possibility of endometriosis, seek another doctor, preferably a specialist.
Cure
There is currently no cure for endometriosis although different treatments are available to help manage the symptoms and/or relieve the pain. These include painkillers, hormonal medication such as the contraceptive pill, surgery to remove some of the endometriosis tissue (performed through laparoscopy) or, in some cases, some of the organs may be removed through surgery such as a hysterectomy. If you opt for natural medicine, there are also many options including acupuncture, homeopathy, phytotherapy or specialised diets.
Endometriosis is not yet a well-known condition. There is no "one-size fits all" therapy for it. Many folks have to go through several tries before they find the therapeutic procedure that works for them. Some can be cured, some cannot.
In Berlin, there are self-help groups that can help you get some advice and acquire knowledge about how to cope with the condition and / or what therapy to choose. There are also different certifications given to medical centers that guarantee a certain standard regarding knowledge of the medical staff as well as equipment. You can find a list below.
Costs
Generally speaking, German health insurance (public or private) will cover any treatment prescribed by your doctor for endometriosis. When a hormonal therapy is prescribed (such as the pill) you should make sure the doctor prescribes you one that is explicitly for the treatment of endometriosis; the costs of the contraceptive pill are not always reimbursed if it is prescribed in the regular way as hormonal contraception isn't free for folks over 20 years old. As for natural medicine, always double check with your insurance beforehand.
You won't be covered if you want to have an operation or be treated by a specialist outside of Germany, even if your treatment has failed here.
Endometriosis and childbearing
Having endometriosis does not mean infertility. Between 30% and 40% of folks with endometriosis may not be able to have children but many who have the condition become pregnant with or without reproductive assistance.
Pregnancy is not a cure for endometriosis. Being pregnant may provide temporary relief from symptoms but it does not cure the condition.
Delaying pregnancy is not a cause of endometriosis.
Information Listings
European Endometriosis League (EEL)
Website: http://www.endometriosis-league.eu/
Languages: English
Resources offered there: General Information
Endometriosis.org
Website: http://www.endometriosis.org
Languages: English
Resources offered there: General Information, UK resource
Jean Hailes
Website: https://jeanhailes.org.au/health-a-z/endometriosis
Languages: English
Resources offered there: General Information, Australian resource
Berlin Resources
Feministisches Frauen-Gesundheitszentrum
Address: Bamberger Straße 51 (Schöneberg)
Phone number: (030) 21 395 97
Website: https://www.ffgz.de/english-info.html
Languages spoken: Website in English and German.
Resources offered there: Information, Consultation, Courses and Training on Special Topics
Additional notes: Personal consultations offered for 15-30 euros.
Endometriosegruppe im Selbsthilfezentrum Neukölln-Süd (Gropiusstadt)
Phone number: (030) 605 66 00
Website: SHKGropiusstadt@t-online.de
Languages spoken: German
Resources offered there: Support group for endometriosis, fybroids, and cysts.
Selbsthilfegruppe Berlin
Address: Fehrbelliner Straße 92 (Prenzlauer Berg)
Phone number: (030) 443 43 17
Stiftung Endometrioseforschung
Email Address: info@endometriose-sef.de
Phone number: 04488 503230
Website: http://www.endometriose-sef.de/
Languages spoken: German
Endometriose-Vereinigung E.V.
Email Address: info@endometriose-vereinigung.de
Phone number: (0341) 3065304 (Monday to Thursday 9-12 and 13-15. Friday 9-12)
Website: www.endometriose-vereinigung.de
Languages spoken: German.
Resources offered there: Brochure available in German, English and Turkish. Online consulting in German - https://www.regelschmerzen-info.de/startseite.html.
Additional notes: They certify medical facilities as "endometriosis-centers" according to some criteria such as the availability of information or treatments, and / or the expertise of the doctors / surgeons. Another certification for clinics is the one given by EuroEndoCert, a private company commissioned by the Stiftung Endometrioseforschung (SEF) and the European Endometriosis Liga (EEL). The list of endometriosis-certified medical centers for Berlin is as follows (information correct as of June 2017):
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10117 Berlin, Kinderwunsch-/ Endometriosezentrum
Kinderwunsch- und Endometriosezentrum Berlin, Praxis für Fertilität rezertifiziert als Endometriosezentrum bis 2016
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10787 Berlin Kinderwunsch-/ Endometriosezentrum
Leitung: Herr Dr. med. R. Hannen und Herr Dr. med. Chr. F. Stoll Kinderwunschzentrum Berlin-Mitte rezertifiziert als Endometriosezentrum bis 2016
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12200 Berlin klinisches-wissenschaftliches Endometriosezentrum
Leitung: Frau Prof. Dr. S. Mechsner Oberärztin der Universitätsfrauenklinik Charité Campus Benjamin Franklin rezertifiziert als klinisches und wissenschaftliches Endometriosezentrum bis 2018
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14129 Berlin klinisches wissenschaftliches Endometriosezentrum
Leitung: Herr Dr. med. G. Tchartchian Klinik für MIC Berlin rezertifiziert als klinisches wissenschaftliches Endometriosezentrum bis 2016
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14193 Berlin klinisch-wissenschaftliches Endometriosezentrum
Leitung: Herr Prof. Dr. med. U. Ulrich, Chefarzt Klinik für Gynäkologie und Geburtshilfe des Martin-Luther-Krankenhauses Berlin rezertifiziert als klinisches und wissenschaftliches Endometriosezentrum bis 2020
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