What are your endometriosis symptoms like? I’ve had intense pelvic pain since the age of 5. However, when I got my first period at age 12, things got much worse. I had lost a lot of weight, was very pale, became anemic, had extremely heavy and painful periods twice a month, started fainting and started feeling sick all of the time. Sex was painful for me ever since losing my virginity at age 16 and it continued this way throughout my life.In my twenties, my pelvic pain got significantly worse and I started having flare ups that would last several days. I started having daily morning vomitting, daily diarrhea and a lot of problems with frequent urination and holding my pee in. In my early thirties, just before surgery, I was completely debilitated and unable to work, eat or perform most tasks without going into severe flare ups.

What was your journey to diagnosis like? My first period with endo symptoms was at age 12 and my surgery was just days before my 32nd birthday. Before getting my period, my doctors believed my stomach pain was due to allergies or being lactose intolerant. At 12, I got my first period and it started coming twice a month and lasting at least 8 days each time, bleeding heavily. My doctor didn’t offer a reason, but started me on birth control to try to help my symptoms. After finding a birth control that worked for me, my symptoms were managed for about two years. Then, the effects would wear off and I would have to find a new birth control to try for the next 1-2 years. This continued into my 20s. In my mid 20s, I had ultrasounds done after having an extreme flare up after removing my IUD. They showed hydrosalpinx in both of my tubes and I went on several rounds of antibiotics. After the antibiotics didn’t work, the clinic told me that I probably had endometriosis and that I needed to find a Specialist ASAP. I got a new family doctor and started my journey for a specialist. She did a round of ultrasounds and found hydrosalpinx on both tubes and a 6cm cyst on my right ovary. I was first sent to a gynecologist who said I just had to learn to live with this pain and with having cysts burst regularly. She put me on birth control and said not to worry about my tubes or having surgery until I wanted to get pregnant. After a few years, I realized I couldn’t continue to live like this and I returned back to my GP to tell her that my condition has gotten worse. I had done a lot more research at this point and had a good friend recommend an excision specialist in Toronto that I should see. I asked for a referral to this doctor and waited over 8 months for my initial appointment. At my appointment, the specialist wasn’t there so I sat with two of her medical aids, who prescribed me Visanne and booked me for surgery and several more tests. I finally got a call from the specialist to ask me to come in again, as my surgery would be a lot more complex than they had thought. I told her that Visanne was making me bleed daily and she strongly suggested that I try Lupron next (to which I said no). She said that they were going to do a sonohysterogram to check my tubes and would let me know where my fertility stands. She also told me that I would never be able to stop taking hormone replacement therapy and dismissed many of my symptoms as “not being endo”. A few weeks later, I got a call telling me that both of my tubes were blocked with large cysts and beyond repair and needed to be removed. I finally realized that this doctor also wasn’t the right one for me and I started looking outside of Canada. After many conversations and months of research, I found a doctor in the US. The doctor specializes in tube reconstruction, wide excision and microsurgery. I sent him all of my medical records from 2015-2020 and quickly had a call scheduled with him. He believed that he could repair my tubes and remove endometriosis from all of the other areas I had it. He was worried about the potential damage to my other organs. He ran blood work that diagnosed me with androgen excess and insulin resistance. He also asked me to get off Visanne immediately and start taking the natural supplements he recommended. My original surgery date in May 2020 was cancelled due to the covid pandemic. However, we rescheduled for July 2020 and my husband and I made the trip down to the US. At my pre-op, the doctor did an ultrasound himself and showed me the heavy adhesions that he could see on my left ovary and tube. The next day, I underwent a 4.5 hour surgery. Pathology showed endometriosis (abdominal walls, uterosacral ligaments, vagina, rectovaginal space, intestines, sigmoid serosa) and endosalpingiosis (bladder, abdominal walls, uterosacral ligaments, vagina, rectovaginal space). I had heavy adhesions on my ovaries, tubes, bowel, bladder, uterus, appendix, liver and colon. The doctor diagnosed me with previous severe pelvic inflammatory disease and Fitz-Hugh-Curtis syndrome on my liver. He removed all of my adhesions and removed my appendix. He did a cystoscopy during surgery and found Hunner’s lesions inside my bladder, so he diagnosed me with interstitial cystitis as well. It turned out that the symptoms that I was told weren’t endo (nausea, vagina pain, frequent urination) WERE endo.

What was your experience with treatment for endometriosis been? I started showing severe symptoms at age 12 and was put on birth control. I ended up staying on some sort of birth control until age 30. I had to switch brands every 1-2 years when the symptoms would return and each birth control came with its own set of side effects, which would range from headaches to nausea to mood swings. At 30, I had exhausted most birth control options and was prescribed Visanne. Visanne left me bleeding daily for the entire 9 months I was on it and gave me horrible headaches, fatigue and nausea. Finally, in 2020 I went off all hormone replacement therapy, started taking supplements and had excision surgery. I’m now 5 months post-op, still HRT free and feeling better than I have in years.

How does endometriosis affect your day-to-day life? In the summer of 2020, I was off HRT to prepare for my upcoming July surgery. At this point, I wasn’t physically working at the business I own very much because I was growing more and more sick every day. However, I had decided to come in for a few hours to help get some things done. I got in and did a few tasks that involved physical activity. When I sat back at my desk, I started to feel extreme pains creep into my abdomen. I knew that this was going to be the start to a flare up. I ended up going to the back lunchroom and lying down on a couch, to hopefully pass the pain. The pain started to get more and more intense and by the time a staff member came in to check on me, I was crying loudly with my pants half off and grabbing the garbage to throw up into. My staff got extremely scared and worried and started bringing me things to help keep me comfortable (bags filled with hot water, blankets). My youngest staff member was crying. My business partner called my husband to come over and pick me up, as I couldn’t drive. When I was finally sitting in the car to go home, my business partner said that he hoped my upcoming surgery would help because it was really scary to see how fast I can go from feeling fine to being completely debilitated. This is endometriosis.

How have you found hope and support in your endometriosis journey? When I was at one of my “lowest” points in my battle with endo, I reached out to my Facebook support groups and asked if anyone else had overcome the challenges that I was facing. At first, I felt defeated as I hadn’t gotten a single positive response. Finally, a few days later, a girl commented on my post with her surgeon’s name and website. She said that she wasn’t in the same situation I was in, but she knows that he specializes in the particular area I needed. Long story short, I DID end up flying to the US to see this same surgeon and his surgery saved my life!! Before heading over, I also met a few fellow warriors from the support groups who gave me endless encouragement about my upcoming trip and surgery. I was fortunate enough to meet Canadians who had traveled there themselves and were willing to have long phone calls with me about their experiences. I was also fortunate enough to meet warriors in the US who took care of me with care packages once there and gave me the confidence to travel during the pandemic. After coming back from surgery and sharing my story, I’ve met even more amazing warriors who have been through the same or who are also hoping to go out of country for surgery. The resilience, hope and strength in this community gives me hope that we can all overcome this together.

What do you think healthcare for endometriosis in Canada should look like? I believe that endometriosis needs to be taken far more seriously in Canada. We need more tools and training for surgeons and the funding to be able to do so. We also need funding to provide endometriosis training to all doctors and OBGYNS nationwide so that the symptoms can be recognized earlier and effective treatment can be given. We, as a country, should become more interested in discovering the root causes, most effective treatments and best diagnostic tools for endometriosis.

What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis patients in Canada need to advocate for themselves if they want effective treatments. Too often, we’re put on hormonal therapies at very young ages and told that this is the best that can be done for us until we’re ready to have kids/ready for a hysterectomy. Effective treatment does exist and we deserve access to it without over 1 year wait time. We deserve to be believed.