What are your endometriosis symptoms like? 

This is a poem I wrote a couple of years back describing my latest endo-attack: The ritual begins with the familiar battle cry of pain brought to life by the rats gnawing through what once resembled my remaining ovary. The intrusive cavalry known for their swordsmanship arrives swiftly, disabling my ability to stand upright. The final reinforcements are called forth with an arsenal of flaming arrows, grenades and missile launchers. I retreat. My skin burns and itches from the heating pad as it soothes my internal wounds. Drained from the pain after years of fighting, I no longer have the mental or physical strength to continue the war. The tears fall as I relinquish the last of the control I foolishly believed I regained. I survey and accept the losses. I accept my full potential has and will continue to be wasted as this disease declares war. I accept my endometriosis, cautiously moving forward, knowing that I’ll be called to fight in a losing battle at any moment.

What was your journey to diagnosis like? 

I had only been thirteen for a couple of months, so when I first felt the sharp pangs shoot across my lower quadrants, I thought to myself: Ok, Erin. This is it. I will finally be a participant in the pads versus tampons debate that echoed throughout the girls’ washroom. However, there was no blood, only the mind-numbing-red-hot-searing-pain which would accompany me to this day. The pain made it difficult to stand-upright so, my mom took me to the hospital where my tender and bloated abdomen was pushed down as though it were soft, pliable dough ready to be kneaded. The doctor dismissed our concerns for appendicitis as I did not fit his textbook definition of screaming and hitting his hands away, instead of simply crying when he applied pressure.

So, he sent me home with an appointment for an ultrasound the following morning as my white blood cells were elevated, showing signs of an infection. The ultrasound showed not only inflammation but a clear substance surrounding my appendix. In fear it had ruptured, I was rushed into surgery for an emergency appendectomy. As the gurney glided across the lightly scoffed two-toned beige vinyl flooring towards the operating room, I was overcome with two emotions. The first was vindication that my pain had been validated. And, secondly, anxiety, as while the emergency room doctor did not entirely dismiss my pain, he did not fully believe it either.

After the surgery, I learned my appendix did not rupture, and the surgeon suspected it was a case of acute appendicitis. And, as for that clear substance, he couldn’t explain and wrote it off as an anomaly. Over twenty years later, I’d find out there was a strong chance it was endometriosis. The pain didn’t stop after the appendectomy, and I spent the next thirteen years seeking help from various medical professionals only to have my pain dismissed, claiming it was nothing more than stress and normal period cramps. These blatant dismissals began to take a significant toll on my mental health. With no doctor validation, I started to believe something was wrong with me as everyone else with a period seemed to be functioning just fine.

I blamed and hated myself for not being strong enough to endure these so-called normal cramps. Exhausted of being labelled a ‘drama queen,’ I conditioned myself to push through the pain and hide my symptoms to the best of my ability. Even to the best of my abilities, I would still end up back in the doctor’s office and in some cases, the emergency room with severe pelvic pain, nausea and bloating multiple times a year. In 2009 at twenty-six, it had become not only a struggle to get out of bed, but the wild emotional rollercoaster I was forced to ride during my period was becoming too much. The hours of pain spent in silence caught up with me. My body surrendered to the latest battle, and I was admitted to the hospital with severe pelvic pain and nausea while visiting my sister for the holidays. I spent the next fifteen months being subjected to a plethora of tests, medications, more stress and a couple of irritable bowel syndrome misdiagnoses until finally, in March 2011, during exploratory surgery, lesions were discovered on my right and left uterosacral ligaments. There it was. I finally had validation. My pain was real. And, it had a name – Endometriosis.

What has your experience with treatment for endometriosis been? 

Since the exploratory and ablation surgery in March 2011, I have undergone five more surgeries, four of which were related to my endometriosis. My subsequent surgery was ablation, and only a few months later, in October 2011. It would be almost three years and a cross-country move before my first excision surgery in July 2014. The next surgery was on January 3rd, 2018, eight weeks to the day before my wedding. The surgery was excision, dilation and curettage, along with resuspending my abnormally retroverted uterus in hopes it would help with the pain and future family planning. During my six-week post-op transvaginal ultrasound, we discovered my uterus had shifted from the common anteverted position back to retroverted.

The sutures put in place to hold my womb, while still intact, were being stretched as my uterus moved. The pain was excruciating. On July 26th, 2018, I underwent my fifth endometriosis surgery in just seven years, a hysterectomy and left-oophorectomy. Unfortunately, even with these surgeries, I am still in pain. I am still working with my endometriosis surgeon, trying alternative medicines and therapies in hopes to help manage these symptoms. In between these surgeries, I tried various treatments and medications. Hormone treatments never worked for me. I felt unhinged and not in control of my emotions when I was on Marvelon and Visanne. Even after my hysterectomy, progesterone made me depressed, anxious and angry. I could feel myself becoming activated for no reason. I have found acupuncture helpful at times. However, that can get pricey if you don’t have extended insurance. One thing that has continued to help me through this endo-journey is my therapist. We practice EDMR work which has helped me process the trauma associated with endometriosis.

How does endometriosis affect your day-to-day life? 

I wish I could say now, at the beginning of 2022, at the age of thirty-eight, that my symptoms have gotten better, but they have gotten worse. I still suffer from severe pelvic pain, nausea and bloating. As I write this on January 10th, I’m in pain; I’ve had ten days with bouts of dry-heaving and six days with bouts of vomiting from an endo-attack that started on December 30th. This is endometriosis, and it is relentless.

How does endometriosis affect your emotional well-being? 

Endometriosis is my faceless tormentor that has forcibly taken residence within my body. It has made me feel less of a woman by removing my ability to become a mother. It has turned my husband into my caregiver. I no longer have the career I envisioned and work towards. I lost friends who were unable to empathize with its impact on my physical and mental health. Endometriosis has stolen moments from my past, present and future. I spend most of my time beached on the couch, waiting for the latest attack to end and trying not to worry about when the next battle begins. It brings not only debilitating physical pain, but that debilitating pain infects my mind as well. It does not matter how much work I do in therapy; the moment I am unable to complete a thought or have to stop what I am doing because the pain and or nausea have taken over, I am instantly brought back to my endo-depression. My mind swirls with voices from the past, “But you don’t look sick,” “At least it’s not cancer,” “It is probably stress,” and “Are you sure you’re not just being emotional” to name a few. Even though I know it is a form of gaslighting myself, invalidating my pain and giving life to those misinformed voices from my past, I still go there because that is what I was conditioned to do. I was thirteen when I first experienced this pain and it took another thirteen years before that pain was validated. And it is not like my pain is always believed, even though I am armed with my endometriosis diagnosis.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

It has completely changed my life course. I left my film career as I could no longer hide how all-consuming my pain had become. I did everything I could to keep my life on the track I had envisioned. And now, derailed, I am trying to figure out where my life is going. I honestly don’t have a plan other than to raise awareness and advocate when my endometriosis allows.

How have you found hope and support in your endometriosis journey? 

I have found hope through the clinic I go to.  However, the support that has been shown by my husband is unparalleled. I am incredibly grateful for everything he has done and will continue to do. He has sacrificed furthering his own career goals to help care more for me. I honestly do not know where I would be without his love and support.

What do you think healthcare for endometriosis in Canada should look like? 

It needs to be better. We need to have better options for treatments. Ablation surgery should no longer be offered when we know excision is the gold standard. There needs to be better training for all doctors, especially gynecologists and even endometriosis specialists. My Toronto endometriosis surgeon told me that if I weren’t willing to help myself, he would no longer help me after I told him I had concerns about changing my diet from gluten-free vegan to macrobiotic and eating meat. He also told me my pain was my fault because I didn’t meditate enough.

It took years to undo the damage his words caused as he was one of the best endometriosis specialists in the province and I was made to believe I could trust him. I wish I trusted myself more than I did those doctors. There also needs to be a better understanding of how our mental health is affected by chronic pain. So when we are in the ER, do not accuse us of drug-seeking and do not look to my partner for my pain validation. That has happened more than once, and the worst was while attending an urgent care clinic. I had asked for more pain medication, and the nurse denied me saying my pain couldn’t be that bad. About ten minutes later, my male partner asked the same nurse, and she came over with more pain medication. Nothing will make you feel worthless than having your pain ignored, only to have the same pain then be acknowledged because it came from a man.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

Endometriosis lesions are being found all over the body – it is not just a uterus disease. This disease does not care about your life plans. It does not care that you might be smiling to hide the pain as it ravages the insides of your body. It is the cancer that does not kill you, but it sure as hell tries to kill your spirit by forcing you to live on the far side of hope. Especially, when you realize just how little funding and research goes into endometriosis research here in Canada. Ahem, the “Canadian Institutes of Health Research Funding Decision Database showed that endometriosis related projects received only $7.3 million in the past 20 years—just $7.30 per person estimated to be living with endometriosis in Canada today.” ( How can we have hope our pain will end knowing how hard we must advocate to be heard? It shouldn’t be up to the patients to fight this fight – we are already fighting a ruthless disease, and we are exhausted.