What are your endometriosis symptoms like?
Ongoing persistent pelvic pain. The type and location of pain will vary but it has also evolved into other related issues like IBS and chronic fatigue. It’s all extraordinarily draining. Not a day goes by that it does impact my life in one way or another.
What was your journey to diagnosis like?
It took 7 years and my own advocacy to get diagnosed. I was frequently told “you’re fine”, “drink more water” and “it’s all in your head”. I was the one that came to my family physician with Endometriosis as a potential cause of my pain. I had to demand a referral to genecology. The gynecologists’ thought I was too young to investigate surgically for endometriosis (at that time that was the only means of diagnosis). I again had to demand the surgery to get answers. It was all very distressing and exhausting but the diagnosis did give me piece of mind and a direction for treatment in the future.
What has your experience with treatment for endometriosis been?
Treatment has been challenging. Finding the right practitioner to advise on treatment was just the first in many. Trial of many options until finding one with a tolerable side effect profile. Imaging has always been disappointing with a lack of educated providers and minimal access to specialized ultrasound imaging. With no understanding of what is happening with my endometriosis, without visualizing during surgery, a lot of the treatment has been completely up to me which is challenging to manage as a patient.
How does endometriosis affect your day-to-day life?
Pre diagnosis it was a lot of missed days of work for pain, doctors visits and trips to the ER. Now it still impacts my daily activity but I’m learning to manage better now. That took many years. Some days are still spent curled up in pain.