Endometriosis: “Years of suffering for nothing”

Worldwide, one in ten women of childbearing age suffer from endometriosis. This chronic disease is caused by the migration of endometrial tissue outside the uterus. Symptoms include digestive problems, pain in the lower abdomen during sex, extremely unpleasant periods or difficulty getting pregnant. The causes of this affliction are multi-factorial, ranging from age, genetics and diet (consumption of saturated fatty acids could play a role). On the occasion of the world endometriosis day which was to take place on Saturday March 28 (the Endomarch was canceled due to Covid-19), Why Doctor collected testimonies from patients. Today, 30-year-old Olivia tells us about the years of medical wandering she had to endure before she was finally diagnosed and operated on.

“Two years after my period started, at 16, I started having a lot of pain with each period. At 17, I therefore decided to take the pill and I was entitled to a small lull of one or two years. Then, the symptoms started again. So I went to see a gynecologist to change the pill, I thought it was no longer suitable. Three years later, another gynecologist suspected endometriosis for the first time. I had several ultrasounds, they told me that I had nothing. I insisted a lot and they ended up giving me an MRI. I changed gynecologists all the time because I was still in so much pain. I was told again that I had nothing, that it was stress, that my pain was psychosomatic…

I ended up making up my mind and abandoning my investigations. For three years, I gorged myself on medication until, finally, I saw an endometriosis specialist. I had an ultrasound with him then an MRI and he immediately saw ovarian cysts and nodules… In all, the diagnosis of endometriosis therefore took eight years. Years of suffering for nothing, during which I was regularly absent from work because of my pain. It took a specialist to diagnose me. Does that mean that gynecologists don’t know enough about the disease? That radiologists are not well trained to spot lesions? I’m wondering…

Anyway, once diagnosed, I was recommended to start taking the pill continuously to try to lessen the lesions and pain, but that didn’t calm me down. That’s why, in 2015, I finally had surgery. I was changed to another pill right after so that I no longer had my period. I was given Androcur but it was recently banned due to a health scandal.

For a year now, I’ve been taking Suregestone: it’s progesterone (steroidal hormone mainly secreted by the cells of the corpus luteum of the ovaries and the placenta, editor’s note) continuously. I no longer have any pain but a lot of side effects: a huge drop in libido, fatigue, acne, greasy hair… I was promised that it would be regulated at one time or another but I don’t believe it not too much because there is no estrogen in this pill. However, they are the ones who are supposed to regulate the hormonal problems that I am facing… But too bad.

I have tried the pills with estrogen before and it was a disaster, I had a stomach ache all the time. I live with it. Even if I must say that at the level of my love life, it is always very complicated. I still have pain during intercourse, even if it is less. I don’t talk about these problems to all the men I meet, but when I stay with a guy for a long time, I explain it to him. They never really understand. Some don’t care at all while others are afraid of hurting me. Because of this, we make much less love. I don’t know if I will ever be able to have a normal sexuality.”