After years and years of struggling I finally got the answer: ENDOMETRIOSIS. Like many of us, I started my period at a very young age and experienced since my 16th-17th extreme pains just before and during my periods. Days I had to lay in bed, just like recovering from flu and take pain killers (like candy).
I went to the doctor and he prescribed the pill, the pain should be less within 3 months, but I was experiencing more pain every time, so they kept on changing my pill, but no change took place. I still had heavy periods and more and more pain. I was only referred once to the gynaecologist as a teenager, the only thing he had to say was that my uterus was leaning to the back, which apparently was very normal according to him. I found out from my specialist this year (2020), that this was the first indication, together with the pain, that I could suffer from endometriosis.
Maybe it was my fault not to visit a gynaecologist more often, I should have, but every time I had to hear, period pains are normal. I can guarantee you that these kind of pains are not normal, I also was bleeding a lot, very often and blood cloths during my periods are very normal. But I doubted myself, as doctors told me that the pain was normal, and asked myself if I was really exaggerating all of this. Over the years I also experienced lower back pain and cramps in my back when I had to run to the bathroom, swopping form constipation to diarrhoea. When I complained to my last gynaecologist about back pain, I received the answer “If you lay down in bed for too long, you will also have back pain.” Very unprofessional according to my opinion.

I kept going for years, until February 2020, I experienced lower back pain, like usual, but worse, and a bloated, very painful feeling in my abdomen as well as a constant fever of 39.8. I went to the doctor and was rushed to the hospital, because they thought my appendix was about to burst. Once in the hospital I had to undergo scans and they could not find my appendix, because cysts of 10cm where blocking their view, cysts on my ovaries. In the mean time I had a blood test done, because the cysts could explain the pain, but not the fever and it seemed that my inflammation level in my body was extremely high, I was kept in the hospital and started on antibiotics as well as pain management. A week later, my fever nor my inflammation level in my blood dropped and the doctor told me that my infection was poisoning my blood, so they had to do surgery and do a laparotomy (Caesarean cut). Saying that the possibility they might have to remove my uterus, ovaries and fallopian tubes is very high.
After I woke up, I received good news, they removed and drained the cysts with as little damage as possible (still do not know what the damage is they caused). After recovering for 3 weeks, I was in immense pain again and went back to the doctor, again tests and the cyst grew back and inflamed my blood again, only this time the antibiotics worked. I was put on Visanne and was told that I have to take Visanne at least for 2 years before we can think about children (I am 32 now).
My husband and I, decided to go see a endometriosis and fertility specialist in June 2020. He could not believe that they did a laparotomy, his word were: “they must have thought you were going to die, otherwise they should not have performed a laparotomy.” He scanned me again and suspected hydrosalpinx, blocked fallopian tubes filled with a toxic fluid. I had to do a HSG scan (extremely painful) and his diagnoses was confirmed, both my fallopian tubes are blocked because of the endometriosis. If my husband and I wanted the highest possibility to conceive (IVF), we were told that it would be best to remove my fallopian tubes. We booked the surgery, the day after my doctor tells me, that due to scar tissue (from the previous operation), which got kind of glued together with endometriosis my fallopian tubes are grown into my bowel system as well as my bowel system into my bladder, so removing them will be possible with another laparotomy but it can be very dangerous for me. So we decided not to go for that surgery and try IVF, knowing we have a less chance to fall pregnant.

Currently, my husband and I underwent one IVF cycle, unsuccessfully, but we are not giving up. I am convinced that if I had received the diagnoses earlier, in my teenage years or early 20’s, that my endometriosis would not have caused the damage inside my tummy and pelvic area. Endometriosis is a serious decease, there is no cure (yet), but there is treatment. I find it terrible that doctors and even gynaecologists know so little about this and the problem is, they can only suspect it with symptoms but diagnose through surgery. If you suspect you have endometriosis or your daughter or friend has endometriosis, please go to a specialist as soon as possible and don’t tell yourself or someone else “period pains are normal”.

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