I submitted my experience with endometriosis on the EndoAct Canada. You can read mine and the stories of several other endo warriors below.
What are your endometriosis symptoms like? Endometriosis can take many forms. I have had multiple surgeries that have slowed my pain, but here is what it was like before that. For me, it was severe period cramping that caused dizziness, mobility issues, and even blacking out. Occasionally, I have break through bleeding or spotting that can cause additional cramping outside of my cycle. The cramping felt like someone was squeezing your inside and pulling them around accompanied by sharp stabbing pains. I have blacked out from the pain, missed work and school, and saw a decline in my mental health.
What was your journey to diagnosis like? My diagnosis was a long one. I have always had a heavy flow and bad cramping with my cycle, but eventually, the pain was becoming unbearable. My family doctor sent me to a gynecologist who could help me make sense of what was going on. That experience, despite leading to my diagnosis, was grueling. I was told that I may have endometriosis, and perhaps a cyst on my ovary or other complications. He joked at the idea of having a hysterectomy for treatment options, but thought I may still want to have kids. I was 22 and did not find this remotely funny. I was then sent to have an ultrasound done, where they located the cyst. This was almost a miracle, because that is what led them to operate, and I fear that without it they would not have as surgery is the only way to conclusively tell if you have endo. They scheduled an operation for a cyst removal and said if they found endo, they would remove that as well. It turns out they did, and removed what they could but told me I would need to see a specialist to get the rest as it was unreachable to him. I was then referred to a women’s clinic where the wait time to get an appointment was upwards of 6 months. At this point my pain was becoming worse, so I called every day to see if there were any cancellations. There was, and I was able to get in months sooner. They did internal ultrasounds (booking time also took a long time) and then I met with the doctor who told me my uterus was fused to my bowel with endo and another surgery would be needed. Within 2 years I had two surgeries for endometriosis, and several other procedures done afterwards.
How does endometriosis affect your day-to-day life? My day-to-day life was not usually impacted unless I got my period. I would have occasional cramping or dizziness, but I was luckier than most. However, once my period came that was a different story. I became essentially immobile, or doped up on pain killers that most of my day-to-day tasks were not the most feasible. I missed classes or sat through them in agony, had to work because of my financial need but was hunched over in pain or lying on the floor throughout my shift. I was typically bedridden or on the toilet, and even blacked out while peeing once. The frustration and emotional discomfort was also apparent in the rise of my depression and anxiety. This impeded my social life, prevented me from dating, and even caused rifts between myself and family members.
How does endometriosis affect your emotional well-being? I just mentioned this briefly, but when you have physical pain, the mental toll is also present. I had depression and anxiety that only became worsened by my severe pain, or frustration by prolonged bleeding and blood clots. When you can’t go anywhere for the fear of soaking through a super plus tampon and mini pad, the emotional ramifications are great. I lost out on social events, didn’t date for years, succumbed to binging tv in bed and losing my ambitions. I am lucky for the access to health care and treatments I have been given, but the hoops you have to go through to get simple diagnoses or the time it takes to get surgery can be extremely hard on you emotionally. Sometimes it feels like there is no light at the end of the tunnel. Recently, I developed vulvodynia which put a burden on my new relationship as any form of insertion (even a cotton swab) was excruciatingly painful. This is even more emotionally draining as it just seemed like one thing after another to prevent me from being happy and healthy.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I like to think of the strength endo has given me. Sure, I may not be able to have kids, I experience a lot more pain than the average person, and don’t see the beauty in my period, but I have learned a lot about myself throughout my womanhood. I know that my purpose is to help others, and I even started my own company (www.gldngrl.ca) to do just that. I know that I need a partner who understands that intimacy is not always going to be fun for me, and is even really painful. I am extremely emotional because of all I have gone through but learned that my emotions have helped me shape the person I am becoming. I am strong, passionate and driven to make my life into something that makes this all worth it. When it comes time to start a family, I have come to terms with adoption and accepted that I may never have kids that share my genes, but ones I’ll love all the same. I know that wherever I am working, I need to have a boss who understands my diagnosis and is supportive of me, not someone who shames me for being sick or missing work. I am committed to learning more about this disease and my goal is to help educate and empower other women through my experiences.
How have you found hope and support in your endometriosis journey? As you can probably tell, my journey with endo has not been easy (like most women). It was really only recently that I came to terms with my reality, accepted it and decided to share my story with others and help them learn the same. I recently started my own jewelry business that donates towards The Endometriosis Network of Canada (TENC), so that more women – or those born with women’s reproductive parts – can feel supported in their own endo story. Through gldn grl, I have met other women who have similar experiences to me, some in much worse situations, and those who never even knew what endo was. That is invaluable to me as we are learning to help each other and grow together.
What do you think healthcare for endometriosis in Canada should look like? I think there are huge steps to improve the health care for endo. There is a huge lack of funding that should be put towards research and treatment. This disease affects 1 in 10. That’s over 2.6 million women in Canada alone, and a huge number of society has never even heard of it. Women’s health care has always been put behind men’s, and that needs to change. We have a long way to go to help not only women’s diseases, but women’s diseases that you can’t see. Endo not only affects us physically, but mentally as well and that should always be considered when you receive a life-altering diagnosis. In my case, I not only had heavy bleeding, blood clots, pain with sex but also an ovarian cyst and vulvodynia with my endo. That is not just one disease, it is my whole reproductive system and that should be taken seriously. I will never forget that I had a doctor – a male doctor – laugh at the prospect of me removing my uterus to help my pain. That is unbelievably insulting and degrading. There is a lot more that the government should be doing to ensure that all doctors understand the signs of endo so that women don’t go untreated or misdiagnosed.