Jane’s story: ‘This pain is like being on fire’

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  3. Jane’s story: ‘This pain is like being on fire’

My pain started just after I hit puberty. I would cry with pains that would radiate down my legs, back and into my stomach; pain that would attack out of nowhere during school, the middle of the night, at a friend’s house, etc. At this time I was told a number of things were causing this but never connected it to endometriosis.

Woman on bed curled up in painWhen I would get a period I would be brought to my knees in pain. I literally could not stand up straight, and I felt as if I couldn’t breathe. My ovaries would pulse and for hours on end I would be left in a fetal position, crying and taking pain meds that would never even cut the sides. I have been found in the middle of the night on the bathroom floor or in work bent over a counter. I can only describe this pain as like being on fire.

This pain has left me in states of anxiety and depression. Over the years I have been misdiagnosed so many times, from the mention of scoliosis to sciatica to slipped disks, and more. I have been on so many different pills and cocktails of pain meds. And I now have the Jaydess coil which has removed the bleeding but left many other symptoms behind.

I had my first surgery in 2014, where I was told there was no endometriosis! And from there I got no follow-up. Four years later, still suffering at this stage, I had pain daily. After plenty of research, I was even more certain I had endometriosis. I changed hospital and had a second surgery where they did find endometriosis and removed it through ablation. My ovary was also stuck. This was never picked up in any internal or external ultrasound I have had. I was told straight after this surgery, at the age of 27, that I should be thinking of having kids in the next two years. Trying to digest this when I had not even removed my hospital gown was extremely hard.

This disease has taken over my life in so many ways and I feel I most definitely need another surgery – but I just don’t feel any confidence in the Irish healthcare system to perform another, knowing ablation is not the answer.

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