What are your endometriosis symptoms like? I started to suspect I might have endometriosis when I was 22. The pain started in my right ovary, and on ultrasound it was found that I had an ovarian cyst almost big enough to require surgical removal. My family doctor was able to treat it with a prescription, but the pain continued after the cyst was gone. Ovulation and periods were the worst. I would frequently need to take days off of work during my period because I couldn’t walk or even stand up on my own. I became scared of being alone during these times because I was worried about fainting and hitting my head. At 23 I met with a gynaecologist who agreed to do an exploratory laparoscopy. Because he didn’t specialize in endometriosis treatment, the disease was only burned on the surface during this procedure. Still, I was able to cope for a few years after that, until 2018 when the pelvic pain and intense fatigue became a daily occurrence. My periods had started to feel unliveable, and after a second laparoscopy I told my doctor that I was experiencing severe depression and was worried I might harm myself if I had to keep going through such painful and heavy menstrual cycles.

What was your journey to diagnosis like? I was lucky to receive my endometriosis diagnosis via laparoscopy about a year after I first told my doctor I suspected I had endo. I had been to the emergency room for pelvic pain several times by then but I never met a doctor there who seemed to understand how severe the pain was or what the problem could be. I started doing my own research and told my family doctor that I knew what I was experiencing wasn’t just normal period pain. I’m grateful she listened because I know many others don’t receive a diagnosis for several years.

What was your experience with treatment for endometriosis been? I’ve avoided many of the hormonal treatments for endometriosis because of sensitivity to medications and the many troublesome long term side effects that go with them. Prior to my diagnosis I received the Depo Provera shot which stopped my periods but also caused major weight gain and depression as well as a drop in libido. Since then I’ve had four surgeries total, including a total laparoscopic hysterectomy. In that time I was also prescribed Visanne but the mental health side effects were scary enough that I had to stop soon after starting it. In the past two years I’ve found that medical cannabis, pelvic floor physiotherapy and acupuncture have been the most helpful in treating my chronic pain. Excision surgery, while the gold standard of care, happened too late for me.

How does endometriosis affect your day-to-day life? Endometriosis has taken away my ability to work full time. It was also the cause of my infertility before my hysterectomy. It often affects my ability to do any sort of strenuous exercise, be physically intimate with my partner, complete housework and have a regular appetite. I have had weeks where I couldn’t walk without a mobility aid and couldn’t even dress myself. Endometriosis has affected almost every aspect of my life.

How does endometriosis affect your emotional well-being? My daily struggle with endometriosis symptoms is a major contributor to the state of my mental health. I had dealt with anxiety and depression prior to my diagnosis, but as the disease has progressed I have struggled more with feelings of worthlessness and in general feeling lost. My quality of sleep has suffered also since I will often wake up with pelvic pain. Many of my friendships have ended because I simply couldn’t keep up my end of the relationship after I became disabled.

How has endometriosis shaped turning points in your life up until now and looking toward the future? Endometriosis has had a significant impact on both my career path and my ability to have children. At 28 I was told there was almost no chance I would conceive naturally and would need to go through the IVF process in order to try to become pregnant. I can also no longer work full time due to the severity of my symptoms (pain, nausea, and fatigue).

How have you found hope and support in your endometriosis journey?  The greatest support I have found is in my husband, my sister, and the friends I have who share the diagnosis of endo with me. Talking to other people who know first hand what you’re going through is so crucial when it comes to this disease. I’m also part of a few different endometriosis support groups online which have provided me with a ton of great info and advice over the years.

What do you think healthcare for endometriosis in Canada should look like?  I would like endometriosis surgery to only be performed by those who have been trained in expert excision and not regular OBGYNs. I would like every medical doctor to know the correct definition of endometriosis and understand how it can be detected and not waste time on tests and imaging that don’t confirm presence of the disease. I want patients with endometriosis and those who are suspected to have it to be treated with compassion and to never be told that they’re imagining their pain again. I would like doctors to stop saying that debilitating pain with menstrual cycles is normal, and to stop recommending that patients either get pregnant or undergo a hysterectomy, neither of which treat the disease. I want trans and nonbinary patients to feel safe and understood when discussing endometriosis with their healthcare providers, since we know that this is not a condition that only affects cis girls and women. Lastly, I want treatments like physiotherapy and acupuncture to be recommended right away instead of only hormone therapy, and I want doctors to be clear about the very serious side effects that accompany the majority of medications used to treat endometriosis.

What do you think healthcare for endometriosis in Canada should look like? It’s important for people to know that this is a multi-system disease that can affect people no matter their age or gender; that it can become a disability; that endometriosis and those living with it should be taken seriously and not have to go through years of hoops to get a diagnosis and proper treatment.