What are your endometriosis symptoms like?
It felt like someone was stabbing me with a knife and twisting it on my right side. I had numbness down my legs, back pain.
What was your journey to diagnosis like?
2017 was the first time I started noticing pain. It got so bad that I went to the ER and had emergency surgery for my appendix. After that surgery, it got worse. I returned to the hospital in extreme pain and a lesion on my ovary was found. Thickening on my bladder was also found and I had a cystoscopy. They found nothing. I had a colonoscopy and nothing was found. I went through 3 years of constant pain and unexplained symptoms with many inconclusive tests.
In the summer of 2020, the lesion grew enough that my gyno decided to operate. My surgery was scheduled for February 2021 but I ended up in the emergency and had emergency surgery which diagnosed endo in January 2021. I thought that was the end and I finally had a diagnosis that doctors would understand why I was in pain and would be able to help. In May 2021, the pain came back and it was unbearable. I ended up in the closest emergency and was immediately tossed over to internal medicine.
No one would listen to me that I had endo and would consider that as a reason for my extreme pain. I was admitted to the hospital and had another colonoscopy, nerve testing, MRI and the only thing that came back was that I had microscopic colitis. I was sent home with opioids and told to talk with my gyno. I couldn’t believe they didn’t consider my endo as the reason why I was so sick. I eventually got a second surgery in September 2021 and had extremely dense endo encasing my ureter and ovary. A stent was put in due to the damage and I was kept in the hospital for a few days due to pain. I’m still recovering but went through absolute hell to get in front of a doctor that knew anything about endo. I remember sitting in a doctors office screaming and balling my eyes out that I will become a drug addict if someone can’t help me. I’m 27. The most shocking part was that I was surgically diagnosed with endo and it was not considered when the exact same symptoms prior to surgery came back. I was devastated that this would be my experience for the rest of my life.
What has your experience with treatment for endometriosis been?
The only thing that relieved pain for me was surgery. I was on orlissa after my first surgery and could not tolerate it. It makes you extremely depressed. I was also on birth control pills and that helped for a few months until the pain came back very intensely. I am now on Lupron and norlutate. It is ok but I have extreme bloating and significant weight gain. Endo drugs are extremely expensive if you don’t have coverage (which I don’t). I don’t know how lower income families can afford going through this disease.
How does endometriosis affect your day-to-day life?
Endometriosis is debilitating. There are days I’m in so much pain that I can’t get out of bed. It is really hard to live your life when you are terrified the pain will come back unexpectedly.
How does endometriosis affect your emotional well-being?
I couldn’t sleep. Friends thought I was avoiding them because I wasn’t well enough to see them. I thought I was going to die sometimes and just wanted to be alone then have my loved ones see me like that.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I would like to have kids in the future but I’m terrified that I won’t be able to because of this disease. I’ve began the process of freezing my eggs to preserve my fertility but it is incredibly expensive. It’s been a really hard topic for me to deal with.
How have you found hope and support in your endometriosis journey?
The only time I felt hope was when my surgeon called me after finding out I was back in the hospital and said she was going to help me. She was the only person I felt listened to me and believed that my pain was real.
What do you think healthcare for endometriosis in Canada should look like?
I think endometriosis should not be investigated through the process of elimination. I kept on being told that they wanted to make sure it wasn’t something more serious. From my understanding, if my surgery was delayed any further, I would have had some serious complications with my kidneys that could be permanent. I also think it’s important that doctors are more educated on endo. I had a doctor do nerve testing and I showed him my surgical report. He said yes. That would explain my I had numbness down my leg. Before my surgery , the doctors thought I had Crones disease or Arthritis.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
I think people should know that even though you can’t see endo on imaging or through blood tests, it doesn’t mean it’s not there