An interview with Martina (her geman blog: www.endobay.de)
How did you notice that something is wrong?
When I was 15 I got prescribed the birth control pill. With the pill I all of the sudden felt terribly nauseous before my period and during my period I was for 2-3 days in huge pain. I was only able to rolling from one side to the other and couldn’t leave my bed.
How did you feel when you got diagnosed with endometriosis?
I received the diagnosis when I was 29. I had to be an emergency operation because the ulcers had become so large that they had to take out 4kg tissue, including 30cm of my intestine.
Then they told me that it was endometriosis. I didn’t understand the term. I just thought: “Ok, it’s not cancer. But what am I dealing with?”
I was unaware of that it is chronic
and I will have to fight and
deal with the consequences of the disease
for the rest of my life.
At the same time I now had the explanation for my years of suffering. I had to think of a conversation with my gynecologist when I was 15 and he said: “Every woman has problems when she has her period”
In retrospect I was very upset about that. Would I meet him I would give him a lecture.
How did you deal with it?
After surgery I have lived from day to day and concentrated on small advances. I thought that now that I was operated the matter would be over.
I had finished my studies a week before the surgery and wanted to move to Scotland. For that I needed start-up capital. So I went as fast as possible back into my old student job.
I haven’t understood for a long time
that I was not “healthy”.
Not even after a further emergency surgery
caused by an intestinal obstruction one year later.
Although I had less and less energy and suffered much from the side effects of the hormone therapy. But I always thought: “I will be fine!”
Especially because I was signaled from the outside that I was not sick (doctors, job agency etc.).
Society still wants you to performance. And you want to perform.
Basically anyone hardly knows what it means to have endometriosis.
It is not a “signal word” such as cancer. It sounds unbelievable but I really realized that I am “sick” when the ulcers returned in their full “bloom” 9 years later and I was in pain daily over months I couldn’t do anything, and the doctors said at next surgery I would hardly get around to a stoma.
What has changed in your life?
Oh very much! I had to learn
(against the motto of our society)
not defining myself over performance.
I have learned to listen to the signals of my body.
I allow myself more breaks.
I pay attention to diet, don’t eat wheat products.
I try to keep fit.
However, many sports are no longer possible. I used to love dancing. I miss that almost the most.
Now I have a dog to “force” to go out which is good.
I have learned to say “no”. I also no longer the need to be on every party. My circle of friends has shrunk.
My priorities have shifted.
Many would call it selfishness,
I call it survival.
How are you today?
Endometriosis is constantly changing. Not only have the ulcers caused problems. Meanwhile the pain is limited.
But there are other things that are repeatedly mentioned in connection with endometriosis: Migraine, insulin resistance, histamine intolerance, allergies, and exhaustion.
The adhesions in my gut and strictures of the intestine cause problems again from time to time. Just last year there was a renewed intestinal obstruction due to adhesions and I had to be in an emergency surgery again.
Are there still sometimes days/situations that are difficult for you?
Let me restate it: It is never simply with endometriosis.
I’ve still got all the possible symptoms. Only yesterday I still thought when buying groceries: “Do not tip over! Stay conscious!” And I dragged me with dizziness through the aisles.
Many women with endometriosis struggle
with that they can’t have children because of their disease.
My desire for children was never big so it’s less of an issue for me.
I struggle more about not fulfilling my big dream of emigrating.
To date I can’t watch films and reports about Scotland on TV. Then I start crying.
Has your view on life changed?
A lot! I was previously someone who believed in fate, in predestination. My worldview was a mixture of romanticism and esotericism and full of magic.
I thought everything is possible if only I would want.
After a total of three emergency surgeries
and with the experience that from now on
everything can be over all of the sudden,
I have become a rationalist.
The confrontation with the disease from the medical side has somehow meant that I now see things from a more “scientific” point of view.
This does not mean that I now wonder less in my life and that I don’t discover any more wonderful things. The saying “enjoy the little things” there’s really something to it. Although I don’t take a smell at a flower every day but the moments that I consciously feel are beautiful have now become commonplace moments.
What is the goal of your blog?
I follow several goals:
I want to send a message to affected persons “you are not alone!” This is very important to me because endometriosis often makes you isolated. It is nice to meet a person who simply understands things without much explanation, without much justification.
Then I want to raise awareness.
I want people to know what endometriosis is. That it is a serious disease.
And last but not least I often find myself just wanting to vent. The blog is kind of a processing strategy on my personal journey with endometriosis.
What feedback do you get for your blog?
Other affected persons often said something like “thank you for making me laugh with all this sh….
What touches me the most is feedback like: “Thank you for your article. I gave it to my mother/my friend etc., finally they understand me.” I always tear up and cry. Firstly, because behind it there is a long time of suffering, and secondly because my own struggle was worth it.
I also have a response from a publisher who has now taken me under contract because they want to report about the disease. This is an absolute honor for me!
But also a huge challenge! Therefore, it is a bit silent on my blog.
But I hopefully have the final book in my hands in March 2017 and hope to fulfill other’s expectations.