The diagnosis

As written in my previous post, we were in the middle of an IVF cycle when it started. Terrible pain… the more hormones I took (through pills and injections), the more I suffered. In the beginning it was still mild cramps and pain, but the further we went in the process, the worse it became. I went back to the fertility clinic at least 3 times, to have them check my ovaries, follicles and do another echography, to make sure everything was ok. I felt like something was blocking my normal bowel movement and was causing my body to feel pressure, pain and discomfort. It felt a bit similar to my regular menstruation problems, but 10 times worse. As the fertility clinic didn’t see or find something, we decided to continue the IVF cycle, since we already came this far. I was allowed to take some pain killers to survive and I was ready for the punction, which is the procedure where they fetch the eggs from the follicles. Of the 6 follicles I had, they were able to get 4 eggs. They combined these 4 follicles with my husbands semen and only one embryo survived.

After the punction, I was again in tremendous pain and was supposed to take hormones again to get my body ready for the transfer, which is the moment where they place the embryo in the uterus, hoping it will be strong enough to survive. During my moments of pain, when I was not rolling on the floor or laying in the bathtub, I was scrolling through the internet looking fertility or ivf blogs and websites to try and find out whether my pain was normal or to find a possible reason. It was at that time, that I read about endometriosis… the symptoms, the pain,.. it sounded all so familiar.

I went back to the clinic and asked them whether endometriosis could be the cause of my pain… they hesitated to confirm, but did agree that my pain was not normal. I decided to get in touch with an endometriosis specialist to get help, BEFORE I wanted to have the embryo transfer. With the amount of pain my body was in, I think pregnancy would have been impossible anyway. Luckily enough, I discovered that one of the worlds most famous endometriosis specialists was based in Zurich (and only half an hour away from my place)! I immediately contacted him and had an appointment 3 weeks later. These 3 weeks for me seemed like 3 months, as I still had big bowel problems. Almost no bowel movement and non stop cramps and belly aches. (If someone ever needs the name of the specialist in endometriosis, let me know. I can recommend him and can get you his details.)

When I met with the endo specialist, it was almost like a new part of my life had begun. Finally, someone who really listened to me and after hearing about my symptoms, he immediately confirmed that this might be endometriosis, as I had many of the usual issues. Pain and cramps, diarrhea and constipation around menstruation. I didn’t have any pain with sexual intercourse, lucky enough. During that first appointment he also examined my bowel and immediately felt that there was quite a big cyst sitting on the side of my bowel, which was most probably guilty of causing my cramps and horrible pain. He said the cyst must have been at least 6 centimeter big and at least had to grow for 10 years to become this big… The specialist also said that IVF was probably not the best idea for someone with such an advanced stage of endometriosis… Endometriosis which has settled in the deeper organs such as bladder, bowel or kidney is also called ‘deep endometriosis’ or endometriosis stage 4.

There it was… after all these years of going to doctors, emergency rooms and gynaecologists, who made me think I was crazy, overreacting and had a low tolerance for pain, I finally received a diagnosis. I had endometriosis… and if I had found out earlier, it would probably never have gotten this bad… and I would probably have started to have children earlier…

Oh well… shoulda, woulda, coulda… doesn’t help whining about it or keep on looking at what happened in the past. I had to look at the future and asked the specialist about my next steps. For endometriosis stage 4, it was very easy. The next step was excision surgery through a laparoscopy and he recommended not to wait too long to plan this… so we planned in the surgery about 10 days later, on March 11th 2019.

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