What are your endometriosis symptoms like? Sitting at my desk at work is painful. There is a constant feeling of pressure in my lower abdomen. I’m always feeling the discomfort of constipation and a full bladder, plus the bloat. I can’t move in any way to make myself comfortable and a trip to the washroom doesn’t provide relief. I feel how tight the muscles of my vagina are – it creates such a sensitivity that it can feel like it’s burning. It’s exhausting to have to push this all into the background and still be expected to do my job.
What was your journey to diagnosis like? I have had symptoms for my entire life and am now 34 years old. I had always experienced constipation and digestive issues but would just be given stool softener as a child. I started to menstruate at 11 and my second period lasted for two weeks, heavy flow for most of it. I then knew that I could expect pain and heavy flow whenever I got my period. I started to try over the counter pain relievers like Midol, but had limited success. At fifteen, I experienced amenorrhea due to losing weight and had my first experience with a gynecologist. This doctor recommended birth control to regulate my periods and manage my pain but my mother refused. I continued on with pain through the rest of high school. My digestive issues were never looked at as though they could be a sign of endometriosis, and I had my first colonoscopy at 17. It was clear. When I moved out at 18 I went to a women’s clinic to go on birth control to help my pain. I took it consistently for five years until I could no longer afford it. When I moved to England at 25, I went back on birth control as it was free there. I made sure I had an IUS inserted before I moved back to Canada. After 2 years of having a Mirena IUS, I was bleeding through regularly and I had it removed to increase my dosage of hormones. This change, unfortunately had a negative impact on my mental health and I was taken off birth control. My symptoms worsened and once again I was given a colonoscopy at 30. Again, it came back clear. After this, my doctor left his practice and I had to start from scratch again with a new doctor. I had to start bringing in my husband to appointments in order to get my doctor to take me seriously. I had CT scans and ultrasounds aplenty. At 33, I first met my gynecologist. Within a minute he knew it was highly likely that I had endometriosis – I was a textbook case. My symptoms of pelvic pain and bloating, heavy periods, constipation, vaginismus were highly typical. He immediately had me stop my periods (which a male pharmacist decided I needed a discussion about). Despite COVID, within 9 months my gynecologist attempted non-invasive measures and eventually performed surgery to remove tissue from my abdomen. When he opened me up he found that my abdomen was filled with endometrial tissue. He had to bring in a general surgeon because my rectum was surrounded. Everything he removed tested positive for endometriosis. Two days ago, I saw my gynecologist and we’ve started the last ditch effort to avoid a hysterectomy. He’s changing my birth control to a dosage he’s had success with. I adore my gynecologist, but still I’ve had issues these past couple of days. My pharmacy at first did not fill my new prescription. I went in yesterday afternoon, it wasn’t completed, and I made it clear what the prescription was that I was looking for and that it was a change to my prescription. I later sent my husband to pick it up and he was given my old prescription. I called the pharmacy to let them know that I was given the wrong prescription and they gave me a bullshit reason of needing to confirm the change with my doctor – the doctor that sent the prescription in. Then they said they would have it prepared in thirty minutes. Again, I made it clear I had had conversations with my doctor and was aware. When my husband went again to pick up, a male pharmacist called again to confirm and seemed to want to talk me out of birth control. I let him know that I’m in touch with my gynecologist every six weeks and he needn’t worry and then he shut up – hesistantly. Endometriosis has filled my life with pain and the world has created barriers for me to ease that.
What was your experience with treatment for endometriosis been? Thus far, my treatments have not worked. I have fortunately had all of my treatments (birth control, pain killers, and surgery) covered by my provincial government and extended health plan but have had issues with pharmacists creating barriers to getting my birth control. I do wish we had treatments that were more consistently successful without surgery. Maybe if I had been diagnosed earlier I’d be in a better place.
How does endometriosis affect your day-to-day life? I’m in pain and unhappy with my body. I feel less able to be as active as I’d like to be which has led to weight gain and further issues. Additionally, pain and vaginismus has greatly affected my sex life with my husband.
How does endometriosis affect your emotional well-being? I have battled with anxiety and depression for my entire life. My sex life has been greatly impaired by increased pain.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Endometriosis has affected my relationships and how I went about family planning. It has impaired my ability to have sex with my husband and knowing that I would have trouble with fertility delayed my potential start to trying for children.
How have you found hope and support in your endometriosis journey? My gynecologist rocks. I love him. My sister-in-law, who is sadly deceased, had PCOS and endometriosis was a great support to me. Additionally, my husband and close friends have been extremely helpful.
What do you think healthcare for endometriosis in Canada should look like? I think there should be increased education of GPs, increased access to gynecologists, free birth control that is often used for treatment.
What do you think it is important for people to know about the experience of having endometriosis in Canada? I think it’s important that people know the daily pain and limited treatment options – in addition to how long diagnosis takes.