What are your endometriosis symptoms like? Infertility, painful periods including pain attacks of super intense pelvic pain, lump in groin that was cyclically painful.
What was your journey to diagnosis like? I spoke with 2 doctors once severe period pain symptoms started in my mid twenties. I was put on mefanimic acid as pain control and was told I had ‘dysmenorrhea’. There was no reason given for my 4 yrs of infertility as all tests came back normal. I was told that a cyclically painful lump in my groin was an inflamed lymph node or a lipoma and it was not explored further. 2 more years passed and in that time I became pregnant naturally but miscarried at 9 weeks. I was driven to search for answers as to why I lost this pregnancy. The lump in my groin became unbearably painful as well as several focal points in my abdomen. I pushed and pushed for my Gyn to look into the lymph node and told him I suspected that I had endometriosis. He did agree to do an ultrasound on the lump. The ultrasound diagnosed an inguinal hernia and the Gyn told me that the lump was “definitely not endo” according to the ultrasound. I had surgery with a general surgeon to repair the hernia several months later and we discussed taking the lump out at the same time, which he agreed to. My hernia was fixed and the pathology report on the lump came back as endometriosis and scar tissue. I had not had any previous surgeries so I had to research how endometriosis could end up as a lump in my inguinal canal, outside of my pelvis. During this research I learned a great deal from Endopaedia. I learned about excision surgery and knew that I needed to find out if I also had pelvic endo, which I highly suspected from symptoms. In doing research and learning about the level of skill required to properly excise disease I knew my current Gyn would not be qualified to perform excision. Though he claimed to do excision he did not have fellowship training specific to excision. When I politely asked about his training he became slightly offended. I didn’t go back. Instead I sought out a qualified excision surgeon with the help of a Facebook support group for women in Alberta with endometriosis. There were only 4 surgeons in the province at the time who could perform proper excision. I was able to make an initial appointment with one of them who, to my relief, was an incredible ally for women with pelvic pain and agreed to perform a laparoscopy and excuse anything he found. At the time of surgery I was diagnosed with pelvic endometriosis with endo affecting my uterus, bowels and ureters. The journey to diagnosis took 7 years.
What has your experience with treatment for endometriosis been? Finding a qualified excision surgeon changed my life. Endometriosis requires a multifaceted treatment plan, but the cornerstone of that plan should be removing the disease through excision surgery. Although it did not improve my fertility, it did resolve my pelvic pain, and bladder and bowel symptoms. Learning to advocate for yourself and educating yourself on the disease and types of treatment is so important. If proper excision is not available in your community you may need to travel for appropriate care. I decided to forego any ‘suppressive’ medication after excision and focused on maintaining a healthy anti-inflammatory diet and exercising. I was pain free for 3 years until symptoms of adenomyosis appeared.
How does endometriosis affect your day-to-day life? The unpredictable pelvic pain, bladder and bowel symptoms interfered with my ability to focus and give my best to my job as an elementary teacher. I had to switch from a full time contract to a part time contract with periods of substitute teaching when things were so bad that I needed to be able to set my own schedule. As a teacher there is a lot of preparation required to ‘be sick’. Endo symptoms don’t often give you time to plan and I found this very difficult. Coupled with the pain of infertility it made my work life a huge struggle. Socially, I couldn’t always make commitments and I was thankful for understanding friends and family. Pain also affected intimacy with my husband and I’m lucky to be partnered without someone who is kind, caring and understanding.
How does endometriosis affect your emotional well-being? The unpredictability of symptoms and the intensity of pain caused me significant anxiety, especially around my period. I never knew if I would suddenly be on the floor at work or unable to drive home. Your life starts to revolve around the disease as it affects your job and social life, making your circles smaller and smaller the less you are able to function.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Endometriosis may have been the reason I had such difficulty becoming pregnant and the reason for my miscarriages. It stole the ability for me to have a biological child. On the other hand it gave me a powerful internal drive of advocacy and the passion to help others who are struggling with this disease, bringing some purpose from the pain.
How have you found hope and support in your endometriosis journey? Finding the Endometriosis Alberta Support Group is the best thing that happened along my journey. Not only did I find a team of women who “get it”, it is also what led me to my amazing surgeon and the resolving of years of pain and symptoms.
What do you think healthcare for endometriosis in Canada should look like? A multidisciplinary approach including an excision surgeon first and foremost, with the additional supports of pelvic floor physiotherapists, acupuncture, massage, nutritional counselling, and supportive emotional counselling.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis is largely a hidden disease, lost in stigma and with symptoms that can mimic other health issues. It is prevalent in 1 out of 10 women, yet up until diagnosis many feel they are suffering alone or should just “toughen up” and deal with their symptoms by themselves. The isolation and mental health challenges of being in severe pain can lead to suicide or thoughts of suicide.