There is no cure but there is also a lack of support for people with Endometriosis. It can be difficult to find resources or know which information is correct when it comes to learning more about Endo.
I have been really dealing with endometriosis and its variety of symptoms since 2008. Being a Registered Nurse, I trust other health care professionals to know what is best for me and my health; but at the same time, educating yourself and knowing what is best for you is extremely important because this disease affects each person differently.
When I first was “diagnosed” with Endometriosis (my family doctor made a very educated guess based on my symptoms otherwise diagnosis can only be confirmed through laparoscopic excision & biopsy) I was 25 years old. I had been on birth control since I was 11 years old and had been off of it (by personal choice) for almost 2 years when the random pains started.
When I researched Endometriosis at the time of my diagnosis, I found a short paragraph stating it causes period pain (which is a complete understatement for those who have experienced this pain) and can cause issues with fertility. I thought to myself, I’m young and otherwise healthy so I'll be fine. Had I known what I was going to go through in the years to follow, I would have looked further into this disease and what preventative measures could have been taken then.
In 2013 and early 2015 I had my first 2 surgeries for Endometriosis with an obgyn, who told me he removed all the Endo and that I should be fine despite the fact that I said I had more pain after each one. After finally getting into the Centre for Pelvic Pain & Endometriosis, it was suggested I try IVF before another surgery as I was already 32 at this time. We had just started getting our testing done when my pain became unbearable.
Because of miscommunication, I couldn't get in touch with my specialist at the Centre for months so I ended up going to New York to have surgery by a well-known Endo specialist. I was diagnosed with Stage 4 Deep Infiltrating Endometriosis after that surgery.
My uterus was also operated on as I had been diagnosed with Adenomyosis prior to the surgery. I wasn't able to fully experience relief from this surgery as the adenomyosis continued to progress. I reached levels of pain that I didn't believe were possible to live through. Somehow, I pushed through but eventually I couldn't; I had to quit work, started many therapies, and went on Lupron for 15 months which has left me with serious side effects.
Eventually I had to have a total hysterectomy for Adenomyosis & both Fallopian tubes & left ovary removed removed due to damage caused by Endo. I was not able to access an Endo specialist for this last surgery so excision was not performed. I still experience chronic pain, nausea, fatigue, bowel and urinary issues to name a few.