Anna Wilken has lived with endometriosis for almost 12 years. A condition that is estimated to affect one in ten women.
March is all about women’s empowerment. In addition to International Women’s Day on March 8th, this month is also the official “Endometriosis Awareness Month”. On March 26th, Facebook also turned its attention to one of the most widespread chronic women’s diseases, endometriosis. The complex disease is also known as the “chameleon of gynecology” because symptoms and courses can vary greatly. Frequently described signs are severe pelvic pain and involuntary childlessness.
The former “Germany’s next top model” candidate Anna Wilken (25) has been living with the disease for many years and has published the book “In general, I’m strong”. Together with those affected and supporters, she spoke intensively in live talks on Friday about the experiences of those affected and the current state of research. Why is there still less research into women’s diseases and why is pain taken less seriously by women? “Everything that has to do with our menstruation is still a big taboo in our society,” says Wilken and describes in an interview how much endometriosis affects your life itself.
Endometriosis is estimated to affect one in ten women. Nevertheless, like many other women’s diseases, it is a taboo subject, why?
Anna Wilken: I think that’s mainly because endometriosis is associated with a lot of ignorance. In some cases, many of those affected do not even know that they are sick. But on the other hand, many doctors are also uninformed! With typical symptoms, such as severe menstrual pain, many sick people are not taken seriously. “Don’t stand in line” or “That’s completely normal” are sentences that they hear from people around them – and that also from experts. In addition, everything that has to do with our menstruation is still a big taboo in our society. You can see this in the fact that period blood is not shown in red but blue in advertising. This makes something completely natural taboo.
What symptoms should you watch out for and what therapy options are there?
Wilken: Basically, there is nothing wrong with keeping an eye on your cycle and body. If the symptoms you’re having are keeping you from doing something because they’re so severe, then it’s definitely not normal. Be it that you cannot go to work or school, that you have to cancel a boyfriend or girlfriend or that even the smallest things are not feasible because of the pain. The symptoms are very individual, starting with pain that is (un) dependent on the cycle, pain during sexual intercourse or during gynecological examinations. Intestinal and bladder problems, tiredness and depressive moods as well as back pain and headaches, allergies and intolerances are often added. The list of symptoms is varied.
There are very different options for therapy, here everyone has to find their own way and ideally discuss everything with his / her doctor. A laparoscopy is used for diagnosis and at the same time can also relieve pain by removing the endometriosis. But the pill and gestagens are also popular, as is complementary medicine. TCM, osteopathy, homeopathy – there is not the only right way for everyone, but there are always individual options.
How long have you been living with endometriosis yourself?
Wilken: I was suspected at the age of 13 and was diagnosed when I was just 19. Now I’ll be 25 in a few weeks and have been working on this topic for almost 12 years.
Depending on the severity, different symptoms can occur. How does the disease manifest itself in you?
Wilken: The characteristics actually don’t play a major role. Because even women with a slight degree of endometriosis can have severe pain and, conversely, I even know some women with very pronounced endometriosis – but hardly any pain. As for my symptoms, I’ve actually taken everything I could with me. Especially the endobelly (painful bloated stomach, editor’s note) causes me big problems.
You consciously go public with the topic. How does the community react to their openness?
Wilken: My community is really grateful for my openness to the topic of endometriosis. I get a lot of encouragement from those affected, but also from all those who first became aware of the topic through me – and some of them only received a medical diagnosis as a result. It is precisely for this reason that it is so important to pay even more attention to the topic and to all those affected.
They even published a book “As a rule, I am strong”. How has the response been so far?
Wilken: The response so far has been very positive and I am grateful for that. Sure, there are always people who don’t like what you’re doing. But that’s absolutely fine! Not everyone has to like my opinion, my story or me. But if it helps some in the end, then I’ll be happy!
Together with those affected and supporters, you raised awareness of the disease with live talks on Facebook on March 26th. How important is the exchange with one another?
Wilken: As already mentioned, women’s diseases are still a big taboo in our society. What many sufferers lack is a protected space in which they can openly discuss their diagnosis and how to deal with the disease. This is what the Endo Facebook community offers them, for example. Here we unreservedly show each other trust and respect and can encourage one another. Of course, the group only serves as a place of exchange, not for professional medical advice.
Whose help can you always count on, who will support you?
Wilken: In addition to my family and friends, I know that I always meet with understanding in my Endo Facebook community. Whenever I feel bad and I share it with my community, there is always someone online who has a few words of encouragement and cheer for me. And just knowing that I am not alone gives me a lot of strength.
Is the illness affecting your relationship with Sargis Adamyan?
Wilken: No, not at all. We have grown with all of the things and that is also very nice. In the beginning it wasn’t just me who had to get used to what it means to have a chronic illness and let’s be honest: there can be ups and downs even without illness.
More than half of all women with endometriosis have trouble getting pregnant. Have you already tried artificial insemination yourself?
Wilken: Exactly, we have been in treatment at the fertility clinic since 2018 and have tried almost everything. I am sure that one day we will hold our miracle in our arms.