Inspiration: Yoshitoshi ‘s – The Octopus and the Awabi Diver

A from Delhi says so many of us have gynecology related issues which we brush away saying things like, “some have more period pain than others”, “some take longer to conceive than others”. I want to share the message that it’s always important to listen to your body and demand medical care. For a very long time I felt that my disease, endometriosis, took over my life. After years of battle I reclaimed it, and I would like to keep it this way!

This is her story.

“What if I would tell you there’s a disease approximately 10% of women have. What if I would tell you that the average time to diagnose this disease is 7.5 years. What if I would tell you that you have most likely never heard of this disease. Wouldn’t you want to know more?

noun l en·do·me·tri·osis l \ˌen-dō-ˌmē-trē-ˈō-səs\
the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility

Ten years ago I was blissfully ignorant of what endometriosis was. I did have very severe period pain, but hey, it is normal that some girls have more pain than others, right? That’s what I always thought, till I came across an article about endometriosis in the Cosmopolitan. Almost everything in this article sounded so familiar that I immediately went to the doctor: “I think I have this disease.” If I would not have read the article, I probably would have never gone to the doctor. After this, for the first time I was in so much pain during my period that I was not able to walk and passed out, but because of the article I already knew where to focus and was already in the testing phase when this happened.

In Europe you can only go to a gynecologist after a referral from the GP. This was the start of my battle as according to my GP 18 was too young for endometriosis. I did not accept this answer and after a long argument I received my referral to the gynecologist. After blood tests, ultrasounds and an laparoscopic surgery I was diagnosed with endometriosis.

At first this was a relief, it was a confirmation that I was not crazy, that something was wrong. And if you know what’s wrong, you know that you might be able to fix it. Very soon after that reality kicked in with extra help of hormones. In the initial years it felt like endometriosis was part of who I was.
I was in a lot of pain, not just during my period, and felt horrible because of the hormones I was taking. This was difficult for many people around me to understand. How, after a year, I was still not better. They didn’t understand the meaning of ‘chronic disease’. They didn’t understand the effects hormones can have on your well-being. And I? I didn’t understand why my body was doing this. It felt like my femininity was betraying me.

Since then, a lot has changed.

The main method for treating endometriosis is trying to stop periods as every period can increase the endometriosis with the development of uterine-lining tissue outside the uterus. So in order to stop my period I initially started with male hormones, which is an outdated way of treating endo and caused terrible moodswings. As that did not work well, I tried different medicines, hormones that were faking pregnancy and hormones that were faking menopause. The gynac forgot to give me something against the sideeffects of menopause, which caused osteoporosis. Because of this I am not allowed to take anything which has higher hormone levels than good old birth control pills.

As I was not happy with taking hormones, I tried several alternative therapies. What helped most for me were aroma therapy (note: this is not something any parlour can do, I went to a specialist who focused on endometriosis) for pain control and acupuncture to get more energy. After I moved to India I noticed that my pain decreased drastically. For me, that was linked to changing my diet to a mostly vegetarian one, as that was my only positive lifestyle change after the move.
In the last few years, I’ve been back in control of my life. In the initial years pain was controlling my life. It was not just something that occurred during my period, but could happen at any random moment. Nowadays I only feel sick for 1 or 2 days during my period or when I push myself too hard and don’t take enough rest. Endometriosis will always be a part of me, but it’s not controlling me anymore. I’m very grateful for how my pain has reduced over the years and how I can almost live a normal life again. I have come to peace that it’s okay for my uterus to have caused me all this pain.”

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