What are your endometriosis symptoms like? Endometriosis is a whole body disease that affects both my physical and mental health. I spent over two decades with undiagnosed endometriosis. Regularly I experience bloating, pain that ranges from a 4 to a 12 depending on the month, burning pain in my hips and legs and pain in my ovaries and bowel. I am often bloated, tired and experience nausea, vomiting and diarrhea. Some days it is difficult to get out of bed and get moving. Endometriosis has also affected my ability to have children. 

What was your journey to diagnosis like? I got my period at an early age but knew from the start that perhaps what I was experiencing was not normal. I could not understand how one was to exercise, got to school, or function during their period as mine made it barely possible to walk or be away from a bathroom. I jokingly dubbed it « the gore » and internalized that pain was just part of the experience of being a woman. At 16 I ended up passing out from pain and found myself in the emergency room, only to be checked for appendicitis and told to go home. Eventually a family doctor put me on birth control to « manage » my symptoms. In some cases this helped, but it also brought a lot of hormonal challenges. In my 20’s I decided to stop taking the the birth control and found myself having a very heavy period that lasted 3 months. This led me back to the ER where I was given some medical grade iron, a prescription for another form of birth-control, and told my iron levels were close to requiring a blood transfusion. The next decade was spent trying to find a diagnosis for what was going on with my body. This led to visits with half a dozen different gynecologists, various ultrasounds, procedures and tests but everything came up empty and it was never suggested to me this could be endometriosis. When I turned 30 I wanted to have a child, and coming off birth control was a necessity. I was told it would take a while, by my doctor, for my body to rebalance after so many years of hormones. What occurred was similar to what happened in my 20 – I began a very heavy period that lasted 8 months straight while I waited to be referred to a new gynecologist. Another two years of appointments, ultrasounds, and procedures such as hysteroscopy, hysterosalpingography, and other invasive procedures once again left me without diagnosis. My gynecologist hit a dead end and refused to continue to support me stating he « did not know what else to do. » I was only then referred to a fertility clinic. After 3 different fertility clinics we identified cysts on my ovaries and I was misdiagnosed and treated incorrectly for PCOS. With fertility being the catalyst for action, I was eventually refereed to another gynecologist to remove a large cyst on my left ovary in hopes it would help me conceive (at no point was endometriosis considered as a possible diagnosis and only because I was trying to conceive the laparoscopic surgery was performed). My first surgery was 5 years ago, and it confirmed endometriosis as a diagnosis. The surgery was too complex for the gynecologist to remove the cyst without compromising my ovary, and it was performed laparoscopically with some of the endo being partially removed through ablation. At the request of my fertility specialist, the gynecologist was asked to stage my endo to help support a plan of action for my infertility, however the gynecologist refused stating as he did not believe in « the relevance of staging » and indicated « you just have endometriosis and its very common. » Pain meds were offered but no further information or support was given about the disease. While going through the medical system, I also explored many alternative options for diagnosis and support with my symptoms. I tried naturopaths, herbalists, massage therapy, restorative yoga – you name it. The only person that provided some reprieve was a wonderful practitioner that worked in Traditional Chinese Medicine. He took my claims seriously and suggested I had endometriosis before my official diagnosis – but the cost, time (1 hour drive each way), and emotional exhaustion led me to stop bi-weekly acupuncture treatments after three months. Finally, a new competent endocrinologists and fertility specialist, after several rounds of failed fertility treatments and procedures, decided the best course of action was to try again to remove the cyst and clean up the endometriosis through excision to create a more hospitable environment for pregnancy. A clear action plan was in place for me and my care and I finally felt heard and seen. Unfortunately, however, when walking from the surgery I could see in his face the sadness and disappointment. The endometriosis had created adhesions across my entire bowel, bladder and ovaries and was placed at a stage 4. We were not able to remove the endometrioma from my ovary, as it was not possible without full ovary removal. My fallopian tubes had completely sealed from endometriosis adhesions. The doctor indicated it was one of the worst cases he had seen. Successful pregnancy became a vanishing hope. It took me 20 years to be properly diagnosed with endometriosis. At almost every turn I had to advocate for myself and my health from a young age, and I still fell through the cracks. The disease progressed in my body and was misdiagnosed, dismissed, and then taken lightly when diagnosed. I was rarely heard and went through more medical interventions than I can remember – many of which were not necessary and could have been prevented had I been diagnosed at a younger age. I still have a hard time believing that it took so long, and that none of the gynecologists I tried to gain care and diagnosis from suggested, based on my symptoms, that endometriosis could be a possible culprit. This disease has taken away my ability to be a mother – had I been diagnosed sooner this may not have been the case. It has affected every part of my life and continues to. Now in my 40s I feel brave. I have began to manage some of my symptoms with diet and exercise and a realistic assessment of how I’m feeling. I no longer try to put on a brave face and push through when I can’t. I talk about the disease, especially to younger family members. I put myself and my care first, and above all I listen to my intuition and body and no longer dismiss my pain. I feel a call to action to support the younger generation – if I can help others, my own suffering will not have been in vain.

What was your experience with treatment for endometriosis been? I have been offered several treatment options since being diagnosed, but have responded very poorly to most. I have very adverse side effects to drugs that inhibit hormone production such as Lupron and Famera and these side effects make these drugs not worth taking for me. I have also been offered the birth control pill as a way of managing my symptoms, but feel that the pill in many ways masked my disease and made it difficult to truly understand the impact of the disease on my body. Attempting to become pregnant also made this a non-option for at least a decade while trying to conceive. Acupuncture and therapies such as massage have helped to varying degrees with pain management, but what I have enjoyed most about these treatments is that I often feel more seen and heard and am given more time by these practitioners than by busy doctors who have very large patient loads. I truly believe that a blended model for treatment for endo must include a team working together to support the health of one person – similar to cancer care. I am grateful for the diagnosis and surgery Western medicine was able to provide, but in many cases I felt disappointed by the lack of necessary coordinated care. Perhaps things are changing with a focus on patient-centred care in Canada. During my most recent visits to the ER, I have felt a palpable shift, with doctors and nurses showing empathy and a seemingly better understanding of endometriosis and pain. Currently, I take care of my endo by taking the very best care of myself. I go for walks daily, and give myself permission to rest when the pain is unbearable. I try to do yoga and go for massage when possible. I am trying to control my inflammation and stress and am conscious I have a chronic disease and not all days will be great.

How does endometriosis affect your day-to-day life? The biggest and most significant impact from endometriosis has been infertility and all that comes with this. Secondary to this the pain can impact my activity level and ability to be present for others. I have had to take time off from work for various surgeries and procedures. It’s affected my interactions with others, both in a positive and negative ways.

How does endometriosis affect your emotional well-being? Endometriosis has gone hand in hand with a lifetime of anxiety. Several of the medications I was on had to be stopped as they caused suicidal ideation (one of the rare symptoms). There have been bouts of depression and hopelessness that have plagued me when a flare up is particularly bad. Chronic pain grinds away at the very fibre of your being until you no longer resemble yourself.

How has endometriosis shaped turning points in your life up until now and looking toward the future? Most fundamentally it has changed my identity and what I imagined this part of my life would be like. It has robbed me of the ability to have children, but has lit a fire in me with regards to my health and career. I am more impassioned to help others and to no longer be silent about the disease. Things did not evolve as planned, but I have reached the point where I can coexist with it, and find ways to take from my journey the learnings that will carry on with me for the rest of my life.

How have you found hope and support in your endometriosis journey? Seeing this next generation of women talking about endo and advocating for it gives me so much hope as does the TEN network. I’ve been thinking for years about how to get more involved with advocacy, and just as the pandemic hit was heading to New York for the America Endo conference as things shut down. Seeing the Endo Act and this research being conducted gives me hope. The love and support of my husband and caring friends has also carried me through. When things are tough a heating pad is set up and tea is made and I know I am not alone. I’ve also had several carrying practitioners that truly wanted to help find solutions for my pain. For all of them I am grateful.

What do you think healthcare for endometriosis in Canada should look like? Health care for endo needs so much reform, as does education. I know women with endo that have so little knowledge of the disease as they have had their voices diminished my health care practitioners. Not being properly educated on the disease and the complications it can cause on your entire body and its systems feels like negligence. Women has been also taught to talk about endo without a trauma informed care lens. They have internalized that the pain, invasive procedures, and lacklustre care are just standard and normal. This needs to change! Endometriosis care needs to start with giving more up-to-date education to general practitioners and even gynecologists – many still perform ablation surgery causing more damage from adhesions than helping. Many women are mistakenly told that removing their uterus is the only way to help endo and that it will cure the disease. Many more are told pregnancy is a cure. There is so much misinformation. It is startling at times and feels like the medical establishment is gaslighting this disease and the women who deal with it. The model of care needs to be wrap around care much like cancer treatment, and more needs to be done to educate those in our society about how this affects the women who have it. A team that includes mental health practitioners, chronic pain management specialists, dieticians, fertility specialists, in addition to doctors, needs to be established. I would love to see in the future endometriosis clinics that focus on this form of treatment and care.

What do you think it is important for people to know about the experience of having endometriosis in Canada? People need to know that this is a chronic disease that affects all aspect of the person’s life. Workplaces need to have a mandate in place to support women with endometriosis just as they would for any other disease, granting sick days and time off to cope with the disease. People need to know that in a room of 100 women 10 are likely suffering in silence. Young women need to know what a normal and not not normal mensural cycle looks and feels like, and be made to feel like their pain is listened to.