I’ve come to see my journey with Endo in chapters.

Chapter one began with the onset of symptoms, followed by the long struggle to find a diagnosis. My symptoms started at the age of 13. It took 7 years, almost as many GPs, countless hospital visits, and a couple of ruptured cysts before anyone could give those symptoms a name. This chapter was shaped by dismissal and the constant feeling that something was wrong, even though no one seemed able to see it. It was confusing and lonely and shaped so much of how I learned to move through the medical system.

Chapter two began with the diagnosis. Having a name for what was happening brought relief, but the treatments I was given did nothing to ease the pain. The dismissal continued. New treatments were handed to me one after another. Surgery, IUD, hormonal injections. I tried everything I was offered because I wanted my life back. This chapter became about searching for the right people and the right plan. Another decade passed. I kept asking questions, kept seeking second and third opinions, kept educating myself on the best treatments and therapies. By the time I finally had excision surgery, I had built a team I trusted and felt, for the first time, that we were heading in the right direction

Now I’m in the third chapter. Progression. I’m 34, have been through three laparoscopic surgeries and now have an added diagnosis of adenomyosis. My symptoms settled for about a year after excision surgery, then I developed cervical stenosis, which may have happened during surgical procedures I underwent.  I’m sure the risks were explained to me, but at the time I was in so much pain that none of it would have changed my decision. I just wanted to be able to function normally. This chapter feels uncertain. I catch myself wondering how many other issues have been caused by the treatments I tried in the hope of a pain free life. I don’t have those answers yet. I suppose I’ll find out as I go.


I don’t know what the next chapter will hold, but I know there will be one. To be continued...