Endo March – You´re on the streets, so what?

When the doctor told me my diagnosis in 2004, I heard the word “Endometriosis” for the first time in my life. All I knew back then was that it was NOT cancer. But WHAT I am dealing with, this I´ve comprehended only after years – years of struggling, falling down, standing up, struggling, falling down and so forth… Years, in which
  • my body turned into my “cage” and I´ve never managed to „function“ like I´d used to before.
  • the pain kept coming back like a stalker, who gets angrier the more you try to ignore him…
  • I have been reading as much as possible about Endometriosis, since the doctors seemed not to know a damn thing about it…
The worst feeling was to be the only one with Endometriosis. Women around me suddenly seemed to be at superhuman health, super fit and fertile like a bunny. Even in the hospital I was the only one with this diagnosis, surrounded by crisps eating, binge watching pregnant ladies and united with my roommate, who was fighting her breast cancer.

I did not meet other Endo Sisters for years. I only remember the cousin of a colleague of a friend of my sister, who wanted to talk to me on the phone about her Endo Cyst and did not want to talk about it in public, because she was scared that she could lose her job.

Endo March – a new hope

After a long period of denying my own disease I started talking about it quite frankly. And the more I talked about it the more women opened up and “outed” themselves. It was just then when I realized that we are dealing with a taboo. Most Endo Sisters don`t dare to talk about out of shame – shame on not coping with a pain that society seems to consider as normal, shame on not being able to “perform” at work, as mothers, friends and lovers.

I did some research and found that it is not less than 176 Million women around the world who are affected! 176 Million who should not be ashamed. It is a disease, not a choice!
Then I heard about the Endo March, initiated in the US, and meanwhile a demonstration that is taking place all around the globe to raise awareness for Endometriosis.


Endo March

Dr. Schweppe from the gynecological clinic Ammerland has made the whole thing a bit more detailed (1). Endometriosis is a disease without a lobby, no one cares about it:
  • Not the family doctor, because he often does not recognize it, because there is no such thing as the one typical, clearly attributable symptom,
  • Not Gynecologists, because they cannot afford the difficult, extensive diagnostics in their practice,
  • Not Urologists, Surgeons or Internists, since they often do not know it,
  • Not Endoscopic Surgeons, because they just remove it and get it done for them,
  • Not Endocrinologists, because they had to realise that a hormone treatment in the long run is not the solution,
  • Not the researchers, because they cannot afford the time-consuming basic research in addition to the clinical work in the long run,
  • Not the pharmaceutical industry, because expensive substances in the long run also show no success and they consider inexpensive drugs as sufficient enough for the treatment of the symptoms.


Will the Endo March bring something?

When I told family and friends about the Endo March they raised questions like:
 „You go on the streets, and then? No one is going to be cured from that.“

Well, I do not expect magic from a demonstration. However, what I hope is that Endometriosis and everything connected to it will leave the taboo and we will start talking about it without the need that we will have to constantly explain and justify ourselves. I hope that the information will help young girls who are affected to have the bravery to stand up to their doctors and even sometimes to the parents and make them believe that the pain they are suffering from is NOT normal.

There will be no cure so soon. But awareness will maybe one day help to deal with this disease in society.

Endo March – End the Silence! More information under: http://www.endomarch.org/

(1) https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-2003-42275
Pictures: http://www.endomarch.org

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