What are your endometriosis symptoms like?
I have a career and work full time but over the years I have began to miss more days off work and special events. Endometriosis is unpredictable and you simply cannot plan for the future due to the lack of freedom from the symptoms. My normal and most prevalent symptoms are lower burning abdominal pain, pain down my legs and up my back, irregular bowel movements, and heavy and prolonged bleeding (sometimes months to years at a time).
What was your journey to diagnosis like?
I struggled with endometriosis for almost fifteen years before being diagnosed. I had seen six doctors and paid thousands of dollars to travel to the States after being diagnosed with multiple things that just didn’t seem correct. I had two laparoscopes with no diagnosis until 2018 when I started seeing a new family doctor who decided to take a look and found severe endometriosis on multiple organs.
What has your experience with treatment for endometriosis been?
I would contribute the fact that it took fifteen years to diagnose to the waiting times to see doctors and specialists. Since I was fifteen years old I’ve been on every hormonal and suppressant medication there is available in Canada. Over the years I’ve been on experimental medications, medications that created new medical issues, and had multiple procedures that have never truly treated the disease. A few of the medications that I have been on include Orilissa, Lupron, Depo Provers, Mirena IUD, Yaz (and other birth controls), and Vissane. I can say that I was never truly warned about the side effects and long term affects on my health and fertility by being on some of these medications. None of these medications actually treated the Endometriosis and only focused on suppressing hormones for a period of time which may have slowed down the growth but did not stop it. The side effects, and now fertility effects that I am experiencing are devastating and looking back I wish I hadn’t blindly jumped in to using these medications.
How does endometriosis affect your day-to-day life?
I cannot plan to do anything without considering how I may feel on a given day down the road. I don’t plan to go away on vacation because the prolonged bleeding may not have stopped by the time we go away. I don’t commit to plans and events like I used to because I cannot guarantee that I will be feeling good enough to go. I feel as though I am not as reliable at work as I want to be because I cannot control my body or symptoms of the disease or medications I am on. As an adult woman it is discouraging to have the small everyday things that become normal but take away your sense of self and confidence. I have a different drawer of clothing and underwear that I consider my “Endo” clothing which is extremely humiliating because it makes me feel bad to wear those particular items out even though no one else would ever notice.
How does endometriosis affect your emotional well-being?
Endometriosis has greatly affected my mental health in more ways than I can explain. My career is very important to me and the fact that I can’t always be relied upon at work really makes me upset. Endometriosis not only affects my body but it affects my relationship because my emotions are so greatly impacted by it. My spouse suffers when I suffer and unfortunately it has created a barrier in terms of intimacy because my symptoms are never consistent or expected.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
It’s been a struggle to continue with my career that I worked very hard for. There is never a day at work that I am completely pain free and that takes a huge mental toll when I’m unwilling to walk away from what I worked so hard for.
How have you found hope and support in your endometriosis journey?
In 2021 I saw an Endometriosis specialist in my province who I waited fourteen months to see. That was the first time in my fifteen year journey that I felt heard and understood. She was so kind and had taken so much time to research my case prior to meeting me. The clinic closed while I was meeting with her and she stayed late to ensure she explained everything and put a plan in place. In my case it’s to the point where a hysterectomy and excision is the only thing that will bring some relief. After losing all of my 20’s and teen years to this disease, I am ready for the rest of my life to start. There is someone or something out there that will improve your life and change your story, you just have to continue on and never give up.
What do you think healthcare for endometriosis in Canada should look like?
Healthcare for Endometriosis in Canada is no where near where is should be. There is a lack of specialists and way too many people and doctors who provide incorrect information. I think for the amount of lives this disease ruins there should be greater access to health care for Endometriosis and fertility. I think that there needs to be further studies and more doctors specialized in this field to distribute care properly across Canada.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
There is proper care to be found in Canada. Don’t get discouraged if you don’t find the right doctor or treatment right away; not every case and person is the same. You do have to advocate for yourself in Canada’s healthcare system and it may take some time but you will get the assistance you deserve if you don’t give up.