My important story: The enormity of endo

I have rarely talked about my health and experiences with endo. It is difficult for me to discuss it. I recently reconnected with my “endo sisters” and have found the courage to speak up. I hope it might help others in some way. This is the shortened version of my story!

I had my first period at the age of about 12 ½ and it was horrendous. Every period was the same. Heavy, with clots and very painful. The teenage years were filled with horrific pain. There were so many times where the period pain was so bad, I thought I was going to vomit or pass out. The pain started just before my period arrived, during it, of course, and then recovery for a couple of days after. In my family, it was just “women’s problems” and you put up with it. There seemed to be an unspoken history of endo in my family.

At about the age of 19, I took myself to a GP. The first GP wanted to put me on the pill, which for me intuitively, was a bad idea. So, I then took myself to a female GP, who sent me for an ultrasound. Next thing, I’m diagnosed with a cyst on my right ovary about the size of an orange. It was 10cm in diameter. I saw a gynaecologist by myself and was booked in for surgery the next day. The procedure was not clearly discussed with me and I didn’t really understand what happened.

The doctors’ appointments and surgeries then began. I had five operations in about eight years, with the first three occurring in the first three years. Each one was with a different doctor and each one each promising I could get better. I was in my early twenties when I ended up being diagnosed with severe endo and adenomyosis. The endo was around my whole pelvic area, bladder and ovaries.

There were a couple of trips to the emergency department, as the pain had been so bad after a couple of the operations, that it was frightening. I’ve had so many doctors look at me, poking around at my belly, that there are too many to count. I’ve even been told that maybe it was appendicitis when I knew it wasn’t. Some doctors seemed to think that I didn’t know my own body because I was young at the time. There were many and varied types of scans, and many, many blood tests.

When I was about 26, I was back at uni completing my Master’s degree. One doctor said I needed to have children by the time I was 28. I didn’t know if I wanted to have children at all. What a suggestion to make. Apparently having children, would “fix me”.

Throughout the years of surgery, my health worsened. Each time, I felt like my life force was weakened more and more. It was harder and harder to recover. The pain in between my periods worsened and my girlie bits hurt even more when I had my period. I had to deal with unpredictable bloating, which meant I had to be careful what clothes I wore. I was very slim and couldn’t wear the usual figure-hugging clothes that young women my age would wear. The constipation at period time was an added bonus, contributing to my swollen belly. I was offered horrendous drug treatments, which I refused. I tried lots of alternative treatments by different practitioners, which only sometimes provided temporary relief. I seriously considered having a hysterectomy after my fifth operation.

I do believe endo is an auto-immune disease. As a child into my teenage years, I contracted many illnesses. I had mumps,