Warning: Content warning: medical gaslighting, medical trauma, gendered language
My health is something that has always been on my mind.
Being diagnosed with celiac disease at five gave me an acute awareness of my body. For those first five years, I was very sick. Thankfully, the Children’s Hospital of Eastern Ontario (CHEO) determined through an endoscope that the cause of all this was an autoimmune disorder, and I was highly allergic to gluten. The diagnosis process was filled with needles, poking, prodding, and testing, which was a lot for me as a young child and my parents.
It took a few years to get a handle on it, and I became much healthier as we did. I guess I figured that since I had experienced so much illness as a child, this would be it for me, so I had my fill.
Unfortunately, with the arrival of menstruation came a new challenge.
From my very first period at thirteen, I was faced with intense pain that radiated down my legs, made me sick to my stomach, and landed me in bed each month. I didn’t question this for a while, assuming it was normal. It wasn’t until I was sixteen that I stumbled across a YouTube video of someone talking about their experience with endometriosis (“endo”) I started to worry about what I was feeling.
I booked an appointment with a nurse practitioner to discuss what I learned. I will never forget sitting across from her and explaining what I was feeling and my discovery that my symptoms were similar to those with endo, only to be met with the response that “some girls [and people] just have bad periods” and that I could not possibly have that condition at my age. I still think about this when I look down at the scars on my abdomen.
Thankfully, my doctor insisted that the procedure should go ahead, and on January 20th, I underwent excision surgery to officially diagnose and remove the endometriosis and insert nerve blockers. I remember coming into the recovery room. I had trouble keeping my eyes open, but I forced myself to ask the nurse if they found endo. She told me they had biopsied what they thought was endometriosis in two places. A week later, I received the results that confirmed this suspicion – it was incredibly validating. All along, I was right; I knew my body.
When I was seventeen, I tried more options again.
This time I was prescribed birth control. I took the pills every day for two weeks before I realized something was wrong. I stopped taking them but didn’t feel any better.
We found out later that the medication contained a wheat filler and that I had unknowingly been ingesting the very thing my body cannot process for fourteen days. For some reason, pharmaceutical companies don’t have to disclose their ingredients, even for allergens. I was sick for six months and had to start taking anxiety medication. Despite reaching out to the pharmacy and the company, no one has taken responsibility for this. In fact, I was blamed for not asking enough questions before taking it.
A few months after, I had an appointment with a gynecologist. She believed that I had endometriosis and prescribed Visanne, which would cease menstruation while stopping the endo from spreading. And it worked. For a while, I was symptom-free.
That was until two years later.
I was standing up from my seat in a lecture hall when I felt a strange tugging, painful sensation in my right lower abdomen. The pain became severe, and I ended up going to the emergency room, where the doctor suspected that I had a burst cyst. My gyno thought the symptoms were most likely from the endo causing nerve damage, which left me with a tremor in my right hand. I was placed on a waitlist to see a specialist.
After one year on the waitlist, I met with my specialist, who suggested a multi-disciplinary approach. I was prescribed nerve pain medication and access to the Ottawa Hospital Pain Clinic, an amazing place with many resources for managing the physical and mental impacts of chronic pain. I was also placed on the long wait list for surgery. I diligently took my medicine, adapted my diet to become more anti-inflammatory, and took different workshops at the clinic.
My symptoms worsened over time, and I could no longer do any of the physical activities I had enjoyed. This all happened while I was trying to complete my undergrad. I am so thankful school had moved online; otherwise, I don’t think I would have graduated this spring.
Due to COVID-19, “elective” surgeries were being cancelled. So much depended on government regulations, the hospital’s regulations, and trying to avoid catching COVID myself. I don’t think I’ve ever cried as much as I did in those two weeks. The mental anguish of knowing that help was within reach but could possibly be delayed was devastating.
Finally, I was given a surgery date of January 20, 2022. The weeks leading up to the procedure were hell.
Due to COVID-19, “elective” surgeries were being cancelled. So much depended on government regulations, the hospital’s regulations, and trying to avoid catching COVID myself. I don’t think I’ve ever cried as much as I did in those two weeks. The mental anguish of knowing that help was within reach but could possibly be delayed was devastating.
Thankfully, my doctor insisted that the procedure should go ahead, and on January 20th, I underwent excision surgery to officially diagnose and remove the endometriosis and insert nerve blockers. I remember coming into the recovery room. I had trouble keeping my eyes open, but I forced myself to ask the nurse if they found endo. She told me they had biopsied what they thought was endometriosis in two places.
A week later, I received the results that confirmed this suspicion – it was incredibly validating.
All along, I was right; I knew my body.
Life post-excision surgery has been amazing. I have been pain-free nearly every day. There are still small things here and there, but it is entirely manageable. I’ve been able to do things I enjoy again – I even biked 19 km this past summer, which was an exciting feat!
Since surgery, I have felt much more confident in sharing my story and adding my voice to the endo community, calling on the Federal Government to implement a National Action Plan on Endometriosis.
In April, I had a successful meeting with Kate Wahl and my MP, Michael Barrett that resulted in him Jointly Seconding Motion M-52. This motion both recognizes the issues surrounding endometriosis and calls for a plan. I have been able to channel a hard experience toward positive advocacy.
Our community is strong and resilient – I am excited to see change unfold. Hopefully, we can secure a better understanding and care for future generations.
The content of this post does not provide or replace medical advice. It is important to follow up with your doctor with any healthcare concerns you may have and to work with medical professionals to develop treatment plans that are right for you.
About Jena Wren (she/her)
I’m Jena; I’m 22 and a recent graduate from the University of Ottawa in Conflict Studies and Human Rights. I am working to establish myself as an endometriosis advocate and support others in our community. In my free time, I love reading, fibre arts, and, more recently, hiking and biking!
Sources
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Gonzalez K, Trigo S, Miller C, Urajnik D. Rescheduling of Cancelled Elective Surgical Procedures Among Older Adults Post–COVID-19.
Can Geriatr J [Internet]. 2021 Feb. 18 [cited 2022 Sep. 20];24(1):73-6.https://cgjonline.ca -
Maddern Jessica, Grundy Luke, Castro Joel, Brierley Stuart M. Pain in Endometriosis. Frontiers in Cellular Neuroscience.
VOLUME 14, 2020.https://www.frontiersin.org