Guest post by Dominique from Switzerland

I am 26 years old and was diagnosed with endometriosis around 6 or 7 years ago, but I had been in excruciating pain for sometime before then, since I began my period at the age of 12 or 13. I also suffered from chronic migraines which, combined with my periods, meant that I was absent from school very, very often.

The migraines, which were already very debilitating in and of themselves, were treated separately. I thought the relief from the migraines would be enough for me to cope with my period pains, but unfortunately not. So began my long journey of countless doctors appointments. I am from Switzerland and I must admit I was lucky in that my diagnosis did not take as long as that of other endometriosis sufferers. What slowed the process was not the lack of awareness from medical personnel (I was very lucky to be treated by an established and renowned endometriosis specialist) but rather my own fears of voicing out loud what I was experiencing, as this unfortunately still to this day touches on such a taboo subject.

No other friend of mine dealt with such pain – at least not that I was aware of. My mother, who is my biggest supporter, could not relate at first, as she had never experienced pain like mine. So it was difficult to be heard; almost as difficult as it was to speak up for myself. I was young and thought that perhaps all of this was in my head. I was also scared to visit a gynaecologist for the first time at a young age for the sole reason of having period pain. I had never heard of someone consulting a gynaecologist for this reason. But my mother insisted and I finally accepted.

This gynaecologist understood me and directly suggested that I get an MRI, which I have now been having once a year since 2015. She told me about endometriosis – this difficult to pronounce word and almost unknown disorder – and I could not believe that all of my pain, suffering and absences from school could potentially be justified. It confirmed this was not just all in my head. The MRI confirmed endometriosis (although a laparoscopy is the most reliable for a proper and complete diagnosis) and I felt a weight off my shoulders.

Soon thereafter I was put on the continuous pill, and it was another long ride of trying to find one that suited me. I still very much depended on painkillers because, although I wouldn’t get my period, I still experienced many uncomfortable symptoms. At some point recently, the pill did seem to have reduced the appearance of endometriosis on my MRI – which again made me question myself, as the pain never really subsided.

I was late to the sexual intercourse ‘game’ and could never answer gynaecologists when asked: “do you experience pain during intercourse?” This seems to be the determining factor as to whether or not you are eligible for a laparoscopy. This was extremely difficult to answer and hear. Not only did I feel ashamed to say that I, a 20-something, had never had sex, but it also made me increasingly scared and stressed to think that my first experiences would be painful and unenjoyable. I needed more answers and help but, without this one factor, I felt like I was put on pause. I dealt with it and told myself I would get better, and for some time I did because I had eventually found a suitable pill for me.

Around two years ago though, I began having excruciating lower back pain that would radiate to the front at the level of my ovaries. In short, it felt like a constant period pain that would never go away. I was even out of breath from the pain, and felt like I was a 20-something trapped in the body of a 90-year-old. No painkillers alleviated my suffering and I tried everything: paracetamol, ibuprofen, codeine and, as a last resort, tramadol. I also tried the natural healing route: CBD, acupuncture, physiotherapy, osteopathy, massage therapy, you name it. I even went to see a naturopath, who concocted magic potions for me. I tried sleeping on different pillows, in different positions. Nothing worked.

I was absolutely discouraged, but didn’t make the link that this could be connected to my endometriosis. It was an osteopath from Geneva who questioned it and encouraged me to consult doctors again and further. I started with my GP, who referred me to a rheumatologist and sent me for an MRI of my back. This came back all normal except for a slightly displaced disk, which my rheumatologist said could not explain my pain.

Doctors thought this pain could be explained by the stress that came with my mother being diagnosed with breast cancer and my parents separating. I believed it partly, but still decided to consult further. I had to be my own advocate, and although sometimes it felt like there was no light at the end of the tunnel, I knew something was wrong and listened to my body.

The rheumatologist said this was more likely linked to my endometriosis, while my temporary gynaecologist (a specialist in endometriosis, who was covering for my usual gynaecologist while he was doing research) told me to was linked to the slightly displaced disk. I could not believe that two doctors working in the same hospital would each blame my pain on the other’s speciality, so to speak.

In parallel, I began being sexually active and discovered a new level of pain – one that mimicked my back pain and made me feel even worse. I had been going to weekly physiotherapy and hydrotherapy sessions, which did absolutely nothing other than temporarily relieve some of my pain. Finally, last summer, I decided I could no longer take this and knew that, because I could now say “yes, intercourse is painful”, I would be taken somewhat more seriously, which really pains me to say.

I went in for another MRI, which showed that my endometriosis seemed to be regressing – but I pushed and finally was scheduled for a laparoscopy, because my temporary gynaecologist thought he may have felt something in the back of my uterus. It is so important to note that any lesions smaller than 5mm are not detected on MRIs and that, although they may not be present on an image, it means absolutely nothing. Especially because the size of the lesion has nothing to do with the amount of pain someone experiences.

Before I was operated on, my temporary gynaecologist still wanted me to consult my usual specialist, who would be back from his research a few weeks later. I did, but he could not feel whatever his colleague had felt. In any case, he told me a laparoscopy was the best way to move forwards with getting answers, especially because I ticked all of the boxes that seem to make a woman eligible for surgery.

I finally had my laparoscopy on 22 January, which resulted in my diagnosis of stage III endometriosis. The adhesions, although not catastrophically spread out all over, were very thick and created nodules on my uterosacral ligaments. This, he said, probably explained both my chronic lower back pain and the pain I experienced during intercourse.

The relief has been overwhelming, physically but mostly emotionally, and I am still in disbelief that I have found an answer. I am taking care of myself and listening to my body more than ever, and really hope that the pain subsides for good. Raising awareness is so necessary and I hope that one day, awareness of this disease will reach a level equivalent to the number of women affected in the world.

I had a really good specialist who listened to me all these years and tried everything before resorting to surgery, so I recognise how lucky I have been in my not so lucky endometriosis journey. When it comes to endometriosis, doctors are criticised more than they are recognised, and I sincerely hope that one day this will change too. We all deserve to be heard, and I hope my story encourages other women too.