What are your endometriosis symptoms like?
My period started when I was 10 and my first thought was “this is a nightmare”. My periods never seemed normal, and by the time I was in my early teens I was experiencing debilitating menstrual cramps. It felt like my uterus was being ripped apart, the pain was so severe it made me sick to my stomach. By the time I was 31, my pain became severe and chronic. Every time I ovulated I felt like I was kicked by a horse. Everyday my pelvis was consumed by painful, nonstop cramps. My insides felt like barbed wire had been wrapped around every organ. I also experienced significant digestive problems, weight loss, fatigue, and my PMDD worsened alongside my worsening endo.
What was your journey to diagnosis like?
It took 22 years of suffering before I was diagnosed and treated. Through my teens and 20s, no one around me validated my menstrual pain. Family members told me I was weak, and doctors told me it was normal to experience period pain and only offered ineffective hormonal treatments. I had a tubal ligation in 2019 and the gynecologist missed my endo and even wrote that I did not have it in my surgery notes. In January 2020, my symptoms took a dramatic turn for the worse and I began experiencing severe, chronic pelvic pain. I saw a variety of doctors with different specializations. I went to the ER many times and was almost always denied pain management. When a doctor finally decided to treat my pain, I needed morphine because of how bad it was. I was pushed out the ER with a handful of morphine and told to get more from my GP. No doctor wanted to entertain endo as a possibility, and instead I was told I just had anxiety or IBS and that nothing could be done.
Some doctors flat out said they didn’t know what endo was. I demanded my GP refer me to an endo specialist in the summer of 2020. That gynecologist was the only doctor to ever take my pain seriously. He was the only doctor I saw that provided compassionate care and said he was going to help me get to the bottom of my health issues. He wasn’t sure I had endo, but scheduled me for a hysterectomy, bilateral oophorectomy, and said he would excise any endo he found. My surgery was scheduled for November 2020, and was cancelled 6 days before the date because of COVID. My second surgery date was also cancelled, less than an hour before I was supposed to be wheeled into the OR. The third surgery attempt was successful. In April 2021, I was diagnosed via surgery with stage 2 endo, it was all over my pelvis. They also found vascular dilation associated with my ovaries.
What has your experience with treatment for endometriosis been?
Before surgery I tried many different things to try to treat my endometriosis. Lifestyle changes, anti-inflammatories, hormones, etc. did nothing for my pain. I eventually went on Lupron, a drug used to induce chemical menopause. Going through menopause at 32 was really intense. It totally disrupts your mind and body. It caused unpleasant side effects. I couldn’t afford the $400/month cost and had to seek financial assistance. I gave myself four of these injections, and absolutely hated having to insert a giant, painful needle into my thigh every month. It was the right treatment for me, and also helped with my PMDD. But I wish we had better options that weren’t so painful, so expensive, and didn’t carry so many serious side effects.
How does endometriosis affect your day-to-day life?
Endometriosis destroyed my life. The severe, chronic pain made it impossible to continue functioning like a healthy, able-bodied person. I had to go on leave from work and eventually left my career path altogether as my body can no longer handle the physical demands of my job. My surgery was delayed indefinitely because of COVID, and I had to sell my house because I had no income. EI sick leave pays so little that you literally cannot afford rent, food, and medications, let alone anything else. While everyone was complaining of lockdowns negatively affecting their life, I was already under an endo-induced house arrest. I was too sick to go out and do anything. I lost weight. I couldn’t exercise. I stopped talking to friends. I had no energy. I couldn’t eat. I couldn’t engage in my hobbies. I truly lost my life, and I’m still putting the pieces of my broken back together.
How does endometriosis affect your emotional well-being?
Endo took a huge toll on my mental health. I struggled with anxiety, because my body wasn’t working anymore and doctors were unable and unwilling to help me. Before my diagnosis, I was terrified of what could be wrong with my insides. I experienced severe hormonal mood swings called premenstrual dysphoric disorder, and they got worse along with my endo.
The pain and digestive issues made it impossible to maintain a healthy sleep schedule. I think the biggest struggle I’ve had is from the medical trauma I was subjected to. From doctors insisting my only option was to live in extreme, untreated pain for the rest of my life, to medical professionals and family members insisting my pain all stemmed from anxiety, I’ve experienced very little support for my endometriosis. I am fearful of doctors now. I have developed several symptoms of complex-post traumatic stress disorder but am too afraid of health professionals now to seek a diagnosis or treatment for it.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I lost my house because of endometriosis. I was unable to work due to severe, chronic pain and had no clue when I was going to get in the OR because of COVID. EI pays very little and I could not afford my medications and mortgage (let alone anything else), so I had to sell my house. I also had to give up my career. I was a geologist, and spent most of my summers in the field preforming grueling field work. My body can no longer handle that level of physical intensity. It was really hard to give up my home and career, I’m still lamenting those losses. As for the future, I will always be afraid of my endo coming back and destroying my life again. Now that I know how few supports we have for people with chronic illness in Canada, I know how vulnerable I am to things like homelessness or losing access to critical health care.
How have you found hope and support in your endometriosis journey?
My endo specialist was the first doctor to give me hope. He cared about my pain, he helped me manage it, and he made it clear he wanted to help me and figure out what was wrong. He started me on Lupron, and it was the first treatment I tried that actually reduced my pain. That gave me great hope as well. Online support groups and my “friendos” helped me immensely too. Being able to talk with people who understood what I was going through helped my mental health. Hearing stories from people who had successful treatments was inspiring as well.
What do you think healthcare for endometriosis in Canada should look like?
It needs to be better. My experience is all too common: being dismissed and invalidated for years before finally receiving a diagnosis and treatment. Our health care providers need to be more knowledgeable about this disease – it affects 1 in 10 women/AFAB people!!! When a person expresses they experience severe menstrual pain, everyone around them should validate that pain and also support that person in seeking medical health! Doctors should never tell women that severe period pain is normal. We need more endo experts; in Manitoba there are 2 endo specialists. With a population of about 1.3 million, that means we have about 650,000 women. 1 in 10 women have endo, which means approximately 65,000 women in Manitoba alone have endometriosis. And there are only 2 doctors based in Winnipeg to serve all these people from all over the province.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis is a nightmare. It is incredibly difficult to find a doctor who will validate your pain. It’s even harder to find an endometriosis expert. It’s so hard to find the right treatment that works for your body. It’s really, really hard to try to be a functioning member of society when your insides feel like they are being shredded every day. This disease takes so much from us.