What are your endometriosis symptoms like?
My symptoms started with every day spotting which was resolved by starting birth control at age 19. I had my first flare up at 31 after coming off birth control to try and conceive. The pain was so bad it woke me up with a stabbing pain under my ribs/low back and heavy vaginal bleeding. The flare ups began happening more often to the point that I was in so much pain I was almost crawling to get to the washroom but would wait as long as I could to go because going was excruciating.
During a flare up the only thing that would make the pain manageable was to double up on Aleve and Tylenol as often as I could take them. Although the pain was debilitating and had me crying curled up in the fetal position I was to afraid to go to hospital because of COVID. Pain became part of my everyday life, along with a heating bag, ice pack and a walk/exercise just to try and keep things manageable as I didn’t realize this pain was still endo and not from “sitting to long” or sciatica or whatever other story I told myself or others suggested was causing it.
What was your journey to diagnosis like?
When I was 19 I was put on birth control for an irregular period. I was one of the lucky ones, I spotted everyday but had no pain. Fast forward 11 years – I stopped birth control to start a family and was surprised the same irregular period started again. After being unable to conceive, despite over a year of trying, I reached out to my family doctor who sent me for an ultrasound – they found a large cyst on my right ovary. Cue the pandemic! I had my first flare up -I had never experienced such debilitating pain in my life but was afraid to get help.
After my 2nd ultrasound the cyst had grown so I was referred to a gynecologist. In a telephone appointment in Sept. 2020 the gynecologist asked me some questions (do you have pain during sex, with BM etc- I said yes) and like that I was diagnosed with endometriosis. I finally had an answer! I could not have surgery to remove the cyst as it was considered non-emergency, and treatment the gynecologist could suggest would prevent me from conceiving so I was referred to a fertility clinic. We conceived spontaneously in May 2021. We were so happy and the pain stopped which was a HUGE bonus for me but the bleeding did not. At 23.5 weeks pregnant the bleeding got so bad I was rushed to the hospital by ambulance. My body couldn’t fight anymore and my daughter Kamila Grace was born by emergency C-section but that did not stop my body from bleeding and that night I went back into the OR. It wasn’t until I came out that I found out how bad my endometriosis was. Like a cancer it has spread to almost every organ in my abdomen and my uterus was thinning as my daughter grew which is why I was bleeding. I had a hysterectomy and 2 days later my beautiful baby girl joined the angels.
What has your experience with treatment for endometriosis been?
I didn’t know it at the time but my first form of treatment was birth control which allowed me to live a healthy and happy life. However, after going off birth control and receiving an official diagnosis my access to care was limited as a result of the pandemic. Ultimately my treatment was a hysterectomy as a result of a life threatening bleed that occurred while pregnant. My surgical treatment continues as the endometriosis attacked non-reproductive organs in my abdomen as well. I can’t help but wonder “what if” .. I got diagnosed sooner, or they did more imaging or a laparoscopy to determine the severity- could I have been a mother? Would my non reproductive organs have been spared? How many more women will suffer such devastating loss as a result of delayed diagnosis/treatment and access to care?
How does endometriosis affect your day-to-day life?
Endometriosis has changed my day to day life as it has become more abut managing pain than enjoying life. A good work day requires a heating bag and a lunch time walk to not be in significant pain by the end of the day. On flare up days work happens in bed with pain medication and a heating bag praying for the end of the day so I can curl up into a ball. This is only possible because of work from home due to COVID as prior to WFH I would have to call in on really bad days even though most times I would do my best to push through. Social events with family and friends have been cancelled on occasion because the pain is so overwhelming I am nauseous, and can’t manage to get off the couch. When I do manage to get out for a social event my friends and family can visibly see I am uncomfortable and I try to say I’m fine but they’re right. While exercising seems to provide relief in my day to day life when I have a flare up even a walk around the block seems unachievable as I am bent over and almost crawling on the ground to get home and lay down.
How does endometriosis affect your emotional well-being?
Endometriosis has made me an emotional mess from fearing the next flare up to feeling like I am crazy. Endo has affected my sleep as the pain is so bad it keeps me awake or I am so nauseous I am to anxious to close my eyes. It’s also incredibly lonely as I began to lie about having chronic daily pain – who wants to be around someone who is always complaining that their back hurts? However, the worst emotional affect has been it cost me being able to carry my daughter to full term which has caused me to feel incredible sadness and anger.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
My husband and I have always dreamt of retiring early and spending time with the two children we hoped to have however, my endo had other plans. As a result of my hysterectomy our dream of having children has been shattered – at least how we planned it. The future is unclear now but seems to be concentrated on staying busy with work and re-evaluating friends and family we wish to have remain in our life as we are now in different places with different futures.
How have you found hope and support in your endometriosis journey?
I consider myself beyond lucky to have some incredibly supportive friends and family. Whether it be cooking a meal when I have a flare up and can’t get out of bed or motivating me to get outside for a walk. I changed my job in the past year and was fortunate to have the most incredible manager. He knew I was experiencing chronic pain and pregnancy complications but would always provide support for whatever I needed and truly made me feel valued and that he genuinely cared about my well being. I am also grateful for my health care providers who tried their best to get me answers even though they were unsuccessful. In the most heartbreaking moments of my life (pregnancy loss and hysterectomy) I had two surgeons and several nurses who were kind, caring and compassionate. They literally saved my life and have given me hope that things will get better, I will be monitored and we will manage my pain while getting me back to physical and emotional health.
What do you think healthcare for endometriosis in Canada should look like?
Health care for endometriosis needs to be more proactive than reactive. Health care providers need to be educated on the symptoms of endometriosis so they can get patients better care. In my case I should not have just been put on birth control and left on it for 11 years without doing any exploring as to why I was bleeding daily. I also feel that there needs to be better imaging to determine the extent of the disease or perhaps there needs to be various forms of imagining used as I only ever had ultrasounds. I believe any suspected case of endometriosis should be confirmed by a laparoscopy as that seems to be the most reliable way to confirm the disease. Finally, the wait time for diagnosis and treatment needs to be DRASTICALLY reduced as living with debilitating pain is not something that should continue for years before getting help.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
I think its important for people to know that living with endometriosis in Canada does not help better outcomes or equal better diagnosis and care. Getting a diagnosis in Canada does not happen as quickly as I believe it should as in my opinion there is not enough knowledge of the disease amongst physicians who do not specialize in endometriosis. THIS NEEDS TO CHANGE! Women should not be forced to continually fight for answers and care there needs to be more education of physicians and the public to ensure less women have the devastating impacts to their life that I have experienced.