What are your endometriosis symptoms like? I experience daily pelvic pain as a result of multiple endometriomas (cysts). The myriad of symptoms cause me to experience reduced energy, back pains and headaches many times a week. This spiral into feelings of worthlessness and shame – shame at not being able to be the active person I was and be an active member of my family.
What was your journey to diagnosis like? I truly never thought I would share a story like this. I started my periods early at age 11 and started birth control at 13. By the time I was 15, I was in my regular GP’s office asking what was wrong. I bled a lot and for a long time and experienced pain. She had no real answers and also, not a ton of concern over the normalcy of this. Over the next few years I switched birth controls and nothing really changed. Eventually, I too bought the lie that this was just normal. Flash forward to 2015 when I was finally ready to have a baby. I had stopped taking any contraceptives in 2013 as I worked on completing a 120lb weight loss through lifestyle changes. I thought I had done everything right to prepare for making my family and yet, after a year of trying… nothing. Sporadic cycles and sadness. I went to a fertility clinic and began treatments – there were multiple factors and yet, I was never told what specifically was my fertility issue – they pegged everything on my partner. This is where the medical system failed me. I went ahead with IVF out of pocket and was blessed to have twin girls. 2 years after they were born, I suffered a bilateral hemorrhagic cyst rupture that resulted in an ER visit. I started to have daily pain, headaches, hormonal swings and further testing by a now new GP led to more cysts called endometriomas being identified. I got angry – I researched and I got every single medical record of mine. Fertility clinic records, my GP records – everything. I combed through them and what I found was many reports at the fertility clinic pointing to endometriosis, even going as far as naming a related disease, adenomyosis by name. Yet here I was – never having been told this. I went through fertility treatments blind because no one felt I needed to know this or worse yet, that I might need to seek treatment. I was referred to a local OBGYN who threw more contraceptive at me and insisted that no one would ever see me for endo unless I took medication first. She was arrogant and refused to refer me to a specialist for excision. I left the appointment angry – sad and extremely afraid. I felt like I was carrying diseased organs and yet, no one would help me. The system – this system I believed in and that was suppose to help heal me; literally slammed the door on me and let out a deafening « NO. » I fought harder – dedicating time and resources to research and seek – no demand referrals. I finally made it to an endo specialist and I feel lucky to be here – awaiting some treatment but I can tell you – my anger and fear are still there. I worry about a system that may deny me help again is this endo returns. I worry about having to spend money or travel to another country to seek treatment because I am not heard here.
What has your experience with treatment for endometriosis been? Treatment – this word inspires so much hope for an endo patient who has been told so many times there is nothing that can be done. Take this medicine! Meditate! I work with a naturopathic doctor who specializes in endo and am also working with an excision specialist to remove the endo. Waitlists for surgery are long so I do what I can to manage symptoms and hope that the 6cm cysts I have does not rupture.
How does endometriosis affect your day-to-day life? This disease impacts all areas of my life – to the point that I no longer feel like the person I was. I used to be active, energetic and positive. Now, in addition to the constant physical pain, I am negative and pessimistic. I am angry with the system and doctors who do not believe this disease exists. Doctors who block patients, who treat people with endo as liars. I am able to work, but do find I take many more sick days than I did before. I have to be careful of leisure activities as I fear further ruptures and having to go to the hospital. I no longer see the hospital as a safe place where I can heal but rather, a place where I may be judged, ignored or have to educate a doctor about what is going on. My marriage is suffering as I cannot be intimate.
How does endometriosis affect your emotional well-being? I would say the mental health aspects are by far the worst. Ongoing pain chips away at your mental health so slowly that you hardly realize what has happened.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I feel uncertainty about my future – at only 37, I worry that I will spend the next 10 to 15 years dealing with this. Fighting to be heard, fighting for treatment. It makes me feel bleak about things. Can I travel? What happens if I have a cyst rupture? Can I take on a new job? What about sick days and my new employer understanding what I am experiencing. Relationships suffer, I suffer. The cycle continues.
How have you found hope and support in your endometriosis journey? Support groups have been the saving grace – along with some friends who have had the same experiences. We are able to be angry together and support each other. Groups like the Canadian Endo group and Nancy’s Nook have been life savers. However – when you join these groups and see how many women suffer this same journey and experience the same blocks in the Canadian system – it is staggering. We are failing and it is just okay with decision makers.
What do you think healthcare for endometriosis in Canada should look like? There needs to be an overhaul of this dated system which seems content to exist in status quo. The system should include more education for doctors and specialists as well as more education for women as to what is normal and what is not.
What do you think it is important for people to know about the experience of having endometriosis in Canada? People need to know how serious this disease is – how many systems and functions it can impact.