What are your endometriosis symptoms like?
Stabbing, sharp pain. At its worst, it felt like someone was stabbing me with a sharp knife….constantly…without mercy. My nerves felt like they were on fire and screaming inside. I felt weak and anxious at the same time. Due to my adenomyosis as well, it felt like a pulling and tugging sensation within my pelvis and back….there was tightness and inflammation everywhere. I would get migraine headaches and have difficulty sleeping. It become increasingly difficult to digest food and function on a daily basis. I would be stricken with anxiety and fear due to chronic panic attacks (due to abrupt pain) in public. This led to isolation, depression and dependence on substances.
What was your journey to diagnosis like?
It took me a very long time to get diagnosed. I was not diagnosed until I turned 33 years. My husband (at that time) and I were trying to get pregnant and it was a struggle. I was just told to take pain killers for bad periods by my doctor. My periods became longer and heavier and more painful as the years went by. Finally at the age of 33 I was referred to a gynecologist. I had a laparoscopy to confirm that I indeed had stage 4 endometriosis. I had never heard of this disease and was very confused. I was told there is no cure and that I should take birth control pills to suppress the endometriosis.
I was trying to get pregnant so this was a confusing treatment option. I tried to manage naturally with an Ayurveda, anti-inflammatory diet by removing gluten, dairy, fried foods, etc. I did yoga and meditation regularly (these practices I still upkeep). This helped but I was still suffering and a few years later my pain returned violently. I was admitted for an emergency surgery as my ovary (right ride) had ruptured. Apparently the endometrial tissue had wrapped around and suffocated my ovary. Me doctor saved my life. She was an amazing surgeon and excised the ovary and removed the endometriosis she found.
I also started on Mirena after that (by then I had a divorce). I had a good few years without tormenting pain after this surgery and did my best to maintain a healthy lifestyle. Once I turned 40 years old, I decided to get a hysterotomy as I did not want to take birth control forever. I also had decided decisively that I did not want to have kids anymore. My surgeon was the AMAZING. At that time I was living in BC. She suggested I participate in the Pelvic Pain Program which includes physiotherapy, psychotherapy, workshops on pain management, etc. It was phenomenal. I then had my surgery and sure enough I also had adenomyosis. No wonder I had so much pain! She also left the left ovary in so that I would not go into menopause. I am very grateful. I still live with pain but it is managed.
What has your experience with treatment for endometriosis been?
Pelvic Pain Program and Pelvic Floor Physiotherapy Gluten free and dairy free diet
How does endometriosis affect your day-to-day life?
I had a divorce because this took a toll. I also could not keep consistent work. It impacted my social life. I still cannot enjoy food and things that others do in the same way
How does endometriosis affect your emotional well-being?
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I am divorced and single.