What are your endometriosis symptoms like? When I first started to have endometriosis symptoms we didn’t know what it was. I had referral pain in my abdomen and I had to stop running/exercising, I had a couple of ovarian cyst ruptures- which led to the thought of PCOS. I had my IUD removed as we thought it was causing the cysts. After removal I had another cyst rupture so we tried a copper IUD. My pain was getting significantly worse. I could not work, I constantly had to cancel on friends and family, I shut every one out. I was fortunate to have really great doctors which led to my very quick diagnosis (by laparoscopy). Since endometrial tissue was removed my pain has decreased. But nothing can remedy the years lost to constant knife stabbing pain in my pelvis, the nerve pain running down my thighs, the burning lower back pain that would run up to my neck rendering me immobile- or the loss of a work and social life where no one understands- endometriosis is invisible to everyone else. I just wanted to sleep and make it all go away, Advil and Tylenol never worked for me.
What was your journey to diagnosis like? My symptoms started when I was 26 and I started to get cramps with my period. I had never experienced them before. Maybe once or twice but never with that amount of intensity. I also started to get very depressed with my birth control, so a doctor told me to « flush out » my periods by skipping three with a new birth control to manage my depression and PMS symptoms. I then went to my general practitioner (GP), who I love, and I went off of birth control and everything seemed to return to normal. I then got an IUD 7 months later and at first everything was fine, and then whenever I exercised I would get pain in my abdomen. It didn’t line up with my periods (which were slightly irregular even without birth control) and I started to get tests done for digestion and a few other ideas. I started to go home from work because of the pain. I ran a half marathon in June 2017 and the next day driving home I had my first cyst rupture. But I didn’t know what it was so I thought I was dying. I then got another cyst rupture. So we removed the IUD. But then I had another cyst, so we put in a Copper IUD. My pain then went to stabbing in my pelvis, lower back pain, severe neck pain, and nausea, and bowel pains, which I never had before. My gynecologist asked me to track my pain symptoms and period for a few months and booked me a laparoscopy. In 2019 in January I had my surgery and was diagnosed with endometriosis. It was bittersweet, knowing that I wasn’t going mad, that it wasn’t all in my head, but also upsetting that I had endometriosis and was going to have to deal with that for the rest of my life. Ultimately, my GP and gynecologist were incredible and really listened to me and had me complete all of the necessary tests. Not everyone is that fortunate.
What has your experience with treatment for endometriosis been? I was lucky to work for my family business so that I could make appointments freely. Before my diagnosis I would go to massage therapy and stop exercising – but my massage therapist explained to me that my tissue was so reactive, that even though she had released the tension, it could come back by my taking a few steps. After surgery I figured out what works best for me, and it’s not a one size fits all kind of deal. Osteopathy, massage therapy, pelvic floor physiotherapy, stretching (all the time), and counselling helped me. There is a mind to pelvic floor connection that I really had no knowledge of, the osteopathy and physiotherapy were amazing in that. Counselling will really help you personally. Again, I had a schedule that allowed me to make appointments and benefits that I was able to use for most of these treatments. Two years after surgery I very rarely go to any of these professionals, however at the beginning I needed them and would highly recommend anyone else diagnosed to do the same.
How does endometriosis affect your day-to-day life? I still cancel plans or go home from work when I have an intense flare that I cannot manage. Prior to surgery I would constantly miss work, I couldn’t exercise, I quit sports, I cancelled dates and plans with friends weekly. I often would spend entire weekends on my couch unable to move. It was very depressing, and you feel very alone and isolated. For a while I just stopped making plans knowing the day of I would have to bail and being scared that no one would understand or invite me out again.
How does endometriosis affect your emotional well-being? The biggest issue for me was the depression. For always being in pain, for feeling like a burden, for not having a social life, for being afraid that any partner I had, might not want to sign up what came along with me.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I have been very open with people about my endometriosis which has improved my friendships, familial relationships and relationships. Most people are very understanding when you give them the chance. I have frozen my eggs as a precaution. Currently I don’t have any fertility issues, but that’s not to say I won’t in the future with Endometriosis.
How have you found hope and support in your endometriosis journey? My parents were very supportive at the beginning of my endometriosis symptoms. Because I work with them they were able to see the physical/emotional struggle first hand. My mom took me to the ER more times than I can remember. My friends were incredible. They would check in on me and understood I wasn’t trying to be flakey. My GP, gynecologist, massage therapist, counselor and osteopath will forever be my favourite people. They were all so understanding, educated and also willing to learn more from me. Not everyone knows about endometriosis and they all asked me the right questions so that we could all learn more and derive better treatments off of that.
What do you think healthcare for endometriosis in Canada should look like? Personally, I think that osteopathy, pelvic floor therapy, counselling, and massage should have a little more coverage for those that have been diagnosed. (I know of a few people that, without a doubt in my mind, have endometriosis and their doctors have not put them on the list to get a laparoscopic procedure. So I do think there should be a faster route and more belief from doctors that it’s not just « PMS » to get the diagnosis/procedure) I also think that at a point a round of egg freezing should be covered. Yes, women are often choosing to have children later in life, so egg freezing is becoming more common. But if you are diagnosed with a condition that could impact your fertility and it’s not in your control, it would be nice to have coverage (or partial coverage) for a round (based off of each individual’s specific endo condition).
What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis affects everyone differently. You can have a tiny bit of endo in your body causing a world of pain. Or you could be riddled with it internally, not know, and then possibly find yourself having fertility issues. I would also love for people to understand central nervous sensitization. And that endometriosis often comes with comorbidities. It’s often invisible so if someone tells you they are having a flare, they are having a flare. You just can’t see it.