What are your endometriosis symptoms like?
My first symptom was a constant pain on the right side (3 times mistaken by appendicitis). Then, it would be the infamous endo belly, the pressure of a balloon growing and pressing my insides. Pain while peeing and pooping. After that, it only got worse. I spent months laying on the ground, 4 days per month. Missing school, because I couldn’t walk properly, my entire pelvis hurt, and I would get waves of cramping that felt like contractions. Every time I tried to exercise, I would cramp and bleed. I am an active person and I had to stop exercising because the pain would be excruciating, to the point I fainted a few times.
What was your journey to diagnosis like?
It took me 3 years of constantly advocating to finally be heard. I was dismissed numerous times by doctors in the ER. My own family doctor told me “I had to relax”, that my pain was just “muscle pain”. That it was “normal” to have painful periods. Or that perhaps I was just “too stressed”. The male doctor in my last ER visit said: “This falls outside of my scope of practice, I don’t feel comfortable performing an ultrasound, you should go home and take a Tylenol.” After this, I basically begged my family doctor to refer me to a gynecologist. The specialized clinic has rejected my referral 3 times. Finally, I could see my gynecologist, who -may I emphasize this- has expertise in endometriosis. The only person that didn’t start their conversation with “maybe you’re too dramatic”. After 7 months of waiting, I finally got my laparoscopic surgery. And I got a confirmed diagnosis. I could finally breathe. The story does not end there though. The symptoms are still there, though thankfully reduced. My case was “Mild”. It has taken me a while to get back to exercising, I still have cramps and I’m scared as hell to have my period again. Because with endometriosis, is like playing Russian roulette.
What has your experience with treatment for endometriosis been?
I have been on birth control since I was 16. Mostly on the pill. And then NuvaRing. After a few months, that particular pill would “stop working”. I would start menstruating profusely, and get “weird side effects”. Then I would switch to another brand, and it would get better. Finally, when I was 26, I got my first IUD. That’s when my symptoms started to get worse. After surgery, I still have the IUD (Kyleena) and I’m also on Visanne. It’s the only treatment that has helped me. Visanne is about $100 per month. So is a sacrifice: either you deal with the pain, or you invest.
How does endometriosis affect your day-to-day life?
I’ve had to miss school and work more times than one would like to recognize. I was always upfront about it. But it does feel horrible to have to miss days because you just can’t move. And you feel hopeless. My dad has seen me crying in pain on the floor. And he has cried with me (I have seen him cry maybe once throughout my whole life.) Endometriosis has affected every area of my life. The bigger piece is exercise. And now, being afraid of pain. And then having the courage to try and try and try.
Until you find something that works for you. I don’t let this condition define me. Nevertheless, it does affect my conversations with my partner (who really wants to become a father) and I know, all the ways I could have problems with a pregnancy. There is a lot of unknown factors. Things I can’t control. And is the fear of having fertility issues that have taken a toll on what I thought life would look like for me. At 30 years old, knowing there is a higher possibility things could go wrong definitely plays a role in how I feel about those conversations. Because, in this world, women are still seen as child-bearers (either consciously or unconsciously.). Knowing this, I feel…faulty. I am a huge advocate and I devote my time in raising awareness, but I also honour the struggles this condition has made in my life.
How does endometriosis affect your emotional well-being?
The fear of pain is a big one. The fear of having a period is another one. The fear of miscarriage too.