Meanwhile, her complaints are becoming an increasing limitation in her daily life. “I have had a lot of trouble with community all these years. That just hurt. My self-image also became increasingly negative. You feel less feminine.”
Her sense of femininity is especially negatively affected by her body hair. “I have always thought: I am hairier than other women. The excessive hair growth started around the age of 17. In places where hair normally grows in men. I got a moustache, a beard, and chest hair. Eventually I had to shave three times a day. That is very confronting.”
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PCOS
A few years ago, Van der Burg became pregnant with her youngest child through IVF. “The excess hair got worse during pregnancy. I had moved and had a new doctor. Because of the excess hair I went to him. Miraculously, he did recognize the problem. After sixteen years I was finally referred to the Erasmus hospital.”
“In the hospital they examined me very specifically for PCOS,” Van der Burg continues. “An ultrasound of my ovaries was made, egg vesicles were measured, and five tubes of blood were taken. The results showed immediately that I have PCOS. It felt very liberating to finally hear this. Everything I have felt and indicated for sixteen years has now been confirmed.”
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Alopecia
Although the diagnosis feels like a liberation, acceptance is another story. Since the diagnosis, she has developed even more physical complaints. “I have a heart rhythm disorder and since a year and a half also androgenetic alopecia. I really like the alopecia. My head hair fell out and now my eyebrows do too. My hair was the only bit of femininity I had left and it’s gone now. In February I had my uterus removed. How feminine can you still feel when everything is taken away from you? I am no longer me.”
“My doctor once told me that with this disease you mourn for yourself. I don’t like buying clothes for myself or doing something nice for myself. I haven’t dated in six years. On the last date, the man said to me, “I’m not dating a boy.” That has partly led to the fact that I am now seeing a sexologist.”
In terms of treatments, there is currently little to do for Van der Burg. “I recently got a wig. I was only partially reimbursed by the insurance, but it does make you feel more feminine. I could go back on the pill, but I can’t do that in combination with my cholesterol tablets. Then you run the risk of a pulmonary embolism. Actually there is nothing more to do. My daughter is starting to get the same complaints as I have. I encourage her to have those complaints investigated. PCOS appears to run in the family, my mother was diagnosed after me.”
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2023-07-02 08:03:42
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