What are your endometriosis symptoms like?
I was lucky to have a very normal and painless period when I first got it. It wasn’t until I was 21 I started having cramps that got worse as I got older. I thought it was normal with my body changing into my twenties. By the time I was 23 I would have cramps that would leave me bed ridden until my period ended. They were so awful that no pain medicine would help, even turning from laying on my back to my side was excruciating. I would cry because of how badly it hurt and how helpless I felt really nothing would help me get rid of the pain.
What was your journey to diagnosis like?
I spoke to my physician immediately about it and she always told me to just take pain medicine before my period starts. A year and a half went by and every time I saw her I brought it up and got the same answer. It wasn’t until I had a constant ache on my right side that I knew had to be my ovary. Finally I got sent to do an ultrasound and was diagnosed with stage 4 endometriosis. Honestly I didn’t feel happy or relieved to have an answer, I was angry because I knew something was wrong with my body and got ignored for so long.
What has your experience with treatment for endometriosis been?
I was referred to a gynecologist that specializes in severe cases like mine and had to wait over a month to see her. My next period had come around before me seeing my new doctor and my right side endometrioma had ruptured. It was the most excruciating pain I had felt in my life. It left me in and out of consciousness, nauseous and unable to lift my head without feeling like I would faint.
My insides felt like it was being stabbed and shredded to pieces. I was rushed to the emergency and after being given morphine and gravol I waited to get admitted. I had a really high fever and the gynecologist there told me that the bacteria from my ruptured cyst was getting into my stomach, infecting my blood and that I needed surgery as soon as possible or else I would die from sepsis. Everything was happening so quickly after finally getting admitted I had no time to really process how scary the situation was.
They wanted to remove my entire right side ovary and Fallopian tube but asked me multiple times if I wanted kids. The doctors did everything they could to save my ovaries and my life. They were only able to drain them and cleaned up the fluid, wanting to not risk heavy bleeding and me loosing my ovaries as they weren’t specialize in severe cases like mine. I felt so much better after my surgery and the gynecologist taking care of me there told me that she could tell how much pain I was in because I shouldn’t have been feeling so great after having a major surgery lol. (They had to cut me from the top of my bellybutton to the top of my pelvic bone).
How does endometriosis affect your day-to-day life?
My specialist who I now see has me on medication that controls my pain very well and I’m now waiting for a surgery date with her to have my cyst removed and cleaned up as safely as they can. It feels great to be under her care now and I’m so thankful for all the doctors and nurses who took such great care of me during my hospital stay. I’m back to working full time and not having to be terrified every month to have my period.
How does endometriosis affect your emotional well-being?
Endometriosis is an awful illness that is not life threatening on its own but definitely can create a ton of complications that are!! I hope everyone can be taken seriously when expressing to their doctors about their pain and not have to go through something similar like me. Every chance I get to speak about it and encourage someone of insisting to their doctors for further testing I take it!!
I hope to raise awareness to help situations like this come to an end. For myself personally it has made me extremely uncomfortable in my own body, I’ve gained a lot of weight and my medication has affected my skin as well, I know it’s a trade off to not have that excruciating pain but it’s still difficult to look at my body and not like how I feel in it and in my clothes anymore. I know after my second surgery I will be able to exercise again without the fear of rupturing my cysts that are now back to their normal size. I always try to think positive about it or not think about it at all but it is tough when my future feels so uncertain now. I’m lucky to have such supportive parents, best friends and boyfriend in my life who always listen, comfort and understand me.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Starting a family of my own has always been such a dream to me. My doctor says I have alternatives to have my own children and that when the time comes for me to start she will be right there to help and guide me through it all.
What do you think healthcare for endometriosis in Canada should look like?
I believe that doctors should take patients seriously the first time they express having awful menstrual cramps. Even in the emergency I still needed to wait hours until being admitted and hours again until the gynaecologist got to see me. They should know in the emergency that having a fever with endometriosis and having extreme bloating and pain means that an endometrioma cyst has ruptured and is beginning to infect the blood. The gynaecologist at the emergency was so upset that no one told her I had a fever until she got around to reading my report herself. It was thanks to her that I was able to have my surgery quickly and put on a constant IV of antibiotics.