What are your endometriosis symptoms like?
I knew the pain that came with my periods was not normal right off the bat. I would be the only one missing days of school, the only I knew who needed help walking to and from the bathroom just to painfully urinate. At 14 years old, I wouldn’t know any better, but my mom did. She knew this wasn’t normal. Appointment after Appointment with my pediatrician would leave me with the diagnosis of « this is how periods are, for some their more painful then others » or just straight « dysmenorrhea ».
Basically I was told this is my new norm. This new norm would begin to creep slowly at first, a twinge of lightening in my left or right crease of my groin, which I now know to be my ovulation time. The lightening stabs of pain would only grow as days towards the start of my period. Within 3 days prior to my period arriving I would be crippled with the burning, scraping, feeling of what I can only describe as a baby Freddy Kruger in my uterus trying to claw his way free. What I would think is already the worst pain, the period comes, and my already 10 pain scale has shot to a soring 20. With the peak of that 20 happening every time I needed to urinate. I would get dehydrated because that’s how little I wanted to use the bathroom. I would be admitted several months in a row because of how bad the pain got. All to hear « your exaggerating, no one’s periods are that painful » which would be backed by normal looking ultrasounds.
What was your journey to diagnosis like?
Sex became the biggest red flag that something was not right. No matter how many times I tried, different positions, lube, sex was never enjoyable in the least bit. It was always painful and uncomfortable. That’s when I started researching why sex is so painful. That’s when I first saw the word Endometriosis. When I started to read other symptoms of Endometriosis, I started crying because I finally found something similar to what I’ve been experiencing for the previous 4 years.
I brought my self diagnosis to my doctor to only be completely shot down because « I was too young to have endometriosis » Thus my torment continued for 6 more years, until I finally got referred to a gynecologist. That gynecologist did an ultrasound and found a mass on my bladder, the mass led to 2 more years of non invasive investigations, but a stoppage to my period through a 3months of continuous birth control…heaven. Investigations led to the conclusion the mass was on my bladder, and did not penetrate through my bladder, this led to a exploratory laparoscopic surgery which would diagnose my stage 4 die Endometriosis.
What has your experience with treatment for endometriosis been?
As soon as I was officially diagnosed, my gynecologist put me on a drug called Visanne. This was a miracle for the first couple of years. My periods stopped completely and the pain that I was feeling almost daily for 10 years was gone. The downside was that my new torment became my mental health. It basically felt like I was going through menopause. My mom and I would be hot flashing together, laughing one minute then screaming at each other the next. But over pain, I’ll take this new norm happily. I stayed on this medication for 7 years. After the fifth year the pain started to slowly return. It was at that time, I decided to take my care into my own hands and discovered Endometriosis warriors within social media.
I found a great team of Endometriosis specialist at a local hospital and the best treatment plan from their point of view was excision of all my Endometriosis and immediate stop of Visanne. This level of care right from my initial intake consultation was nothing I had ever experienced since I started complaining of horrible period cramps. I had a doctor actually confirming that my suffering and pain was real, that my condition was extensive, and that I have options outside of birth control. I spent almost 2 hours in the first appointment. I never felt so understood in my life. My surgery was February 2020, it was 8 hours long, and that mass on my bladder, was actually my uterus. Unfortunately I had to lose part of my bladder in order to best preserve my uterus.
How does endometriosis affect your day-to-day life?
I remember not having anyone to pick me up from school when the Freddy Kreuger baby decided to try to rip it’s way our of my uterus. I had to take a bus home. Thankfully it’s only a 10 minute bus ride. The worst part of my trek home was the 5 minute walk from the bus stop to my house. The pain was so bad that I actually crawled home. On all fours. Because standing up straight was impossible without the feeling of my uterus, with already angry baby Freddy Kruger inside, being stretched.
How does endometriosis affect your emotional well-being?
I always felt like I was broken when my boyfriend and I would try to make love. I would push through the pain because that’s what I thought was normal. For 15 years I heard that the pain was all in my head, or that I was a liar who hated school. Right now the only doctor I see is my endometriosis specialist. I rarely visit general practitioners because of the fear that I’m never believed. Or that my ailments are too inconvenient to be looked into.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
With the extensive endometriosis I have, I am still learning to cope/accept that children might not be in my future. My husband knew that this could be a struggle and he married me anyways but I constantly feel like I’m failing him because I’m not pregnant after a year of my excision surgery and trying to conceive.
How have you found hope and support in your endometriosis journey?
My mom has always been my biggest advocate. She wasn’t the most educated women but she knew something was going on that wasn’t normal. She fought continuously with me, until I met my now husband. He became my biggest support person, and helped bring back my confidence that I can be loved and I can be very intimate with someone without the penetration aspect.
What do you think healthcare for endometriosis in Canada should look like?
The signs and symptoms need to be recognized early on! I believe part of the reason for my extensive endometriosis is due to how long it took for a diagnosis then for proper treatment. It seems far too many doctors and physicians are blind to this disease and for those who do know about the disease have to wait years before even being seen. Physicians need to believe their patients pain is real, despite clean scans. They need to recognize if Endometriosis is an area in which they are not comfortable in treating, to allow a referral to a more specialized doctor with experience on treating the disease.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis effects 1 in 10 women. Yet on average it takes 10 years to diagnose. Painful periods are not normal.