What are your endometriosis symptoms like? In high school, I started taking birth control for painful, heavy periods and stopped taking it about 10 years later for other medical reasons (2018). Along with painful periods, painful intercourse and painful ovulation, I eventually began having extremely painful bowel movements. I was literally biting my hand the first time this happened because the pain was so extreme. I thought I would pass out.
What was your journey to diagnosis like? I first presented with painful periods in high school. Instead of looking into causes, I was put on birth control – which gravely impacted my mental and physical health for the 10 years I was on it. Over that time, I was diagnosed with irritable bowel syndrome (IBS). When I stopped taking birth control and pain returned with a vengeance, I ended up in an emergency department and received referral to see the gynecology residents. I was clinically diagnosed with endo by the first resident I saw, with medication recommendations to manage the pain.
What has your experience with treatment for endometriosis been? I took Visanne for the first 6 months after my diagnosis. It did help with pain for me, but it was so, so bad for my mental health. After 3 months, I attempted to tell the specialist it was making me suicidal, but they insisted I take it for the full 6 months. After deciding to try to conceive, pain management has been limited. One surprising thing that helped reduce bowel pain was not using internal period products (tampons, in my case). This reduced painful bowel movements on my periods to a more manageable level. I also saw a pelvic floor physiotherapist which really helped me in overcoming some mental blocks pertaining to painful intercourse. While not a cure, it helped me so much. Otherwise – heat for back pain, Aleve on the worst days, getting enough sleep – I really don’t have a routine.
How does endometriosis affect your day-to-day life? Endometriosis has always impacted my intimate relationships, which I only knew once I was diagnosed. Painful intercourse is frustrating, and has caused me distress in past relationships, compromising my safety and mental health.
How does endometriosis affect your emotional well-being? I think the hardest thing has been the mental toll of endometriosis. Since I haven’t had a laparoscopy, I have no idea what is actually happening in my body, and that makes me feel insecure and uncertain. I already experience some general anxiety, and the fear of what the pain will be like on a given day does not help. I also experience severe PMS, and have a hard time taking hormonal drugs, which are the majority of solutions, medication-wise.
How has endometriosis shaped turning points in your life up until now and looking toward the future? The biggest impact has been in failing to conceive for over 18 months, and going through fertility treatment cycles with no success. Since I’ve always wanted children, this has been a challenging journey, and one I feared most when receiving my diagnosis. Financially, it is a burden as well – fertility treatment is for the rich! Going through fertility treatment feels like a gamble, and each month of grieving is exhausting.
How have you found hope and support in your endometriosis journey? I have a supportive partner and family, and have attended a few The Endometriosis Network of Canada (TENC) support groups. I also speak with a psychologist semi-regularly. I still feel like I suffer through a lot on my own, because I don’t want to be a burden.
What do you think healthcare for endometriosis in Canada should look like? I definitely think that educating young people about endometriosis is essential and needed in sex ed curriculum. I also wish that doctors would stop just prescribing birth control when a young person is experiencing painful periods. I would have gone through a lot less grief if I had answers a decade ago, and would probably have better health outcomes in the long run. I wish that specialists would try and consider things more holistically. It feels like my mental health was directly ignored by the gynecologist when I told them I was having suicidal thoughts. I think more training for gynecologists on the mental health impact is needed.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Accessing healthcare is hard!