What are your endometriosis symptoms like? My endometriosis symptoms vary from day to day. Some days I feel extremely bloated and heavy in the pelvic area, and other days I experience sharp, shooting pains internally that feel like it is pulling from multiple places within my pelvis to my rectum. I often need to stop in public areas to apply pressure to the pain points, which adds humiliation to the situation. During my cycle is when my pain is the worst; I experience tremendous amounts of pelvic pain, hearing loss, vision loss, uncontrollable bowel movements, vomiting, shaking, and fainting. I required emergency medical care on a monthly basis.

What was your journey to diagnosis like? I began my menstrual cycle at age 11 and immediately began experiencing left sided pelvic pain. When I presented my family doctor with symptoms a couple of years later, I was tried on multiple different birth control pills. I experienced negative side effects to the pills and they were not helping with my pain, that’s when I was referred to a gynaecologist. It was that gynaecologist that suggested that I might have endometriosis, and within a few months I had an operation date. Endometriosis was removed from multiple locations, and recovery time took six weeks. I struggled with pain for eight years before having a laparoscopy at age 18, and it only provided two years of relief. I am now 32 and experiencing pain on a daily basis with confirmed bowel and rectal endometriosis.

What was your experience with treatment for endometriosis been? Finding treatment for endometriosis was difficult. My mother had to assist me at doctors appointments because I was so young, doctors felt I couldn’t be experiencing as much pain as I was. With each new birth control packet I was given, I’d experience side effects but I kept trying hoping that one would eventually work. As time went on, many meds had come and gone, I started suffering from depression, anxiety, suicidal tendencies and began seeking mental health treatments as well. I continued to press for answers until surgery was offered and the suspected endometriosis was confirmed. Two years after surgery, I began experiencing symptoms again that have continued to progress. My cycles were too painful for any over the counter medication I had in hand, and I would need to seek emergency medical attention monthly. Hospital visits were a struggle in the beginning; nobody knew what endometriosis was or how to offer help to a chronically ill person. I pushed and advocated for myself each month in the same emergency room and one day the RN, to my surprise, knew what endometriosis was. He told me he wasn’t going to ask what my pain level was because he understood how bad it was. He told me I shouldn’t have waited 31 hours in agony before deciding to beg for pain medication in the ER. He told me he’d make sure I had a bed to prevent falling. I received pain medication via IV that evening, and every doctor and nurse to cross my path checked in on me. The treatment that I received on a monthly basis changed after that moment because I realized that I deserved help, thanks to the RN. I continued experiencing monthly hospital trips but I began cutting down the amount of time I spent ‘crying it out’ at home. I eventually began seeing a pain management doctor, and while they offered many options, I experienced negative side effects on all of them. The doctor recognized that I was not responding well to meds and asked if I’d be willing to try a cannabis lubricant. The cannabis lubricant provided relief in some sense but it was not strong enough to manage the pain on its own. I then was given the option to meet with another surgeon and I accepted. I waited six months to see the surgeon and during that time I made sure that my notes were up to date; symptoms, pain levels, meds, procedures etc. The day I met the surgeon, I was expecting to have to fight for rights to proper care and advocate like I did with all the doctors previous. This surgeon took my notes and read them page by page, discussing possibilities during the process, he believed everything I said. The internal and external exams caused me to scream and cry, loud enough that my partner could hear me from a separate room. To get a better look at what was going on inside my body, I was sent for an endo mapping ultrasound, UDS/cystoscopy, and a hip MRI. These tests were able to confirm that I do have endometriosis in the bowel and rectum, as well as trigonitis and bursitis. The surgeon and I then met to discuss the possibilities of an operation, which was surprising. He explained that I would need a bowel resection and would require a stoma bag, most importantly that he couldn’t guarantee that it could ever be removed. This was very concerning to me as I have difficulty healing overall. I now was faced with deciding if surgery was the right option for me again. Since I’ve had endometriosis symptoms since age eleven, I felt that managing the symptoms I was familiar with was a better option than beginning a completely new lifestyle with new symptoms, new discomfort etc from the bowel resection. I am now, once again, trying to manage my symptoms to the best of my ability. I am fortunate enough to have a specialist and GP that trust me and are willing to work with me, so I am able to manage my extreme cyclical pain with strong pain medication.

How does endometriosis affect your day-to-day life? I experience pain on a daily basis, and because of this I need assistance with most of my daily tasks. Cleaning my apartment needs to be done over a span of days, washing dishes needs to be completed in two washes, making the bed exhausts me. I often need to miss out on social gatherings and events with friends and family, I’ve missed opportunities to see my nephews in school performances, all because I am too ill to function like a human. Sometimes I push myself so hard to prepare for certain events and gatherings, that I cause pain to my body from preparing and moving. I am unable to exercise because it causes strain and pain on my body, and if I manage to take a leisurely walk, it requires multiple days of relaxation to heal from it. I find that I don’t have many friends anymore because I simply cannot keep up, I cannot manage someone else’s energy on top of my own. I am quite fortunate to have an incredibly large support system through my family.

How does endometriosis affect your emotional well-being? My mental health was severely impacted upon facing pelvic pain at age 11, only I was too young to recognize it. I was aware that I was unlike my friends, and I was aware that I felt much more anger than them, but I didn’t understand why. When I began trying birth control is when my mental health really decreased. I began experiencing suicidal tendencies along with depression and anxiety, which eventually led to seeking help at a crisis centre. Being so young, I struggled to understand the process of mental help and the embarrassment of being in such a program led to my leaving the program. It felt like nobody could relate to me or even comprehend what I was experiencing, so I kept bouncing around from one mental health professional to another. During this process, I felt things get worse; higher pain levels, confusing emotions, depression and anxiety turned me into an introvert. It wasn’t until my twenties that I met a massage therapist who seemed to understand what was going on inside of me, without me needing to say a word. That was the most impactful mental health help that I have ever received. She began introducing me to mindfulness techniques, exercises, workbooks, and that’s what led to my positive pathway of managing mental health. Part of the process was learning how to speak about my conditions, my feelings, my fears and worries to someone else, and most importantly to listen to my body and acknowledge my feelings.

How has endometriosis shaped turning points in your life up until now and looking toward the future? When I reached a point in my life that I really felt I could appreciate and accept what I was going through, I recognized that what I required in terms of care would not permit me to hold a “normal” job. I tried multiple positions at multiple workplaces, all ending because of my needing too many emergency days. Having worked in childcare for a long time, it felt the best option would be to open my own daycare, where I could create rules and guidelines to prevent my symptoms from worsening. At first, the excitement took over everything and I thought it was the greatest idea, until my cycle started showing up on all PA Days leaving me unable to work. Luckily I had support people to replace me during emergencies, but after five years of being self employed I made the decision to close the daycare. I remained unemployed for a few months, until an employer I knew was hiring. He was aware of my conditions and was willing to set up a very lenient schedule which allowed me to work on my own time, and from the comfort of my home. I have never been so grateful. My partner and I have been in a long term relationship, and he has been by my side through it all advocating for me when I’m unable. He goes out of his way to accommodate my needs, and I recognise how fortunate I am to have such a partner.

How have you found hope and support in your endometriosis journey? There have been a couple of times in which I felt hope and support during my endometriosis journey. The first time was during my monthly cyclical hospital visits to ER. After being dismissed by so many doctors or needing to fight to get pain medication, suddenly a nurse began his shift and he was aware of what endo was. He understood how high my pain levels were, he ensured that I had a bed to lay on to prevent falling from fainting, he even bumped my chart. I received strong pain meds that evening, and was sent home once I was comfortable. To my surprise, I ran into that same nurse for the next few months, and he showed me the same level of care during each visit which led to other doctors and nurses in ER taking me seriously. I refused to leave the hospital that first night I met him, without having the opportunity to shake his hand and thank him. My partner felt the same way, so he wheeled me around the hospital until we found him again. That nurse changed the emergency care I received moving forward. Another instance of finding hope and support was when I discovered TENC held an annual EndoMarch event. I attended my first event with my partner, sister, and mother by my side, we even volunteered. During this event I experienced a range of emotions; hurt and sadness that there were so many other people like me, suffering from pain but I also felt joy and support realizing that TENC offered online support and that everyone attending was there to support and represent each other. I left that event feeling like I had to be part of the organization, that I had to do something more to support TENC, and that’s exactly what I did. I began organizing Toronto’s first Run To End Endo which was and continues to be a great success. My family has always been a huge support system for me on a daily basis. I could only wish for other endometriosis patients to be so lucky to have the support that I do. They have been there every step of the way, making sure that someone is able to attend appointments and procedures with me, dropping off supplies, doing anything that I may require to assist in my comfort. They too, were there for the Run To End Endo, immediate and extended family, providing use of materials, assisting in set up and tear down, providing First Aid care, leading the event etc. I knew that my family would do anything for me, but to witness them all during this event was something that I will never forget. They were not only there for me personally, but they were there to support the entire endometriosis community that day.

What do you think healthcare for endometriosis in Canada should look like? Healthcare for endometriosis is far from what it should be. With many patients beginning their journey upon the arrival of a menstrual cycle; the very first place that most people would benefit from education on endometriosis is in middle school health class. If kids are taught about endometriosis in health class, it would assist young people in understanding that painful cycles are not normal, that fainting from pain is not normal, that there is a condition causing these symptoms. I couldn’t talk to my health teacher about my cycle or pain because she didn’t know what I was dealing with. If endometriosis was taught in schools, it would lead to earlier understanding and advocacy for diagnosis for patients which in result could eliminate numerous years of suffering. Every gynaecologist in Canada should be required to participate in extensive endometriosis education and training. It’s appalling that most gynaecologists in Canada are not even aware of the word endometriosis, that they feel menopause and pregnancy will cure or hinder symptoms, that patients are left to figure out their health concerns on their own. It is dangerous. Self education support groups are the main resource that patients have, yet there seems to be a divide amongst these groups and the actual endometriosis medical professionals. Patients are often dismissed by doctors for trying to self diagnose and find a decent pathway to treatment, but that’s the only way for them to educate themselves and understand the condition better. We need an endometriosis research centre in Canada; a dedicated place for researchers, medical professionals, and patients alike to provide and receive adequate endometriosis treatment. A place where research can continue to be done to assist in a better understanding of what causes endometriosis and to train medical professionals in how to treat it. The government should be assisting in creating and funding such a place given that endometriosis impacts the lives of so many, not only patients dealing with the condition but everyone around them as well, and will continue to unless action is taken.

What do you think it is important for people to know about the experience of having endometriosis in Canada? For people living with endometriosis within Canada, I strongly believe that it is important to be educated on the matter, and to advocate for yourself. It is important to find a support team, to remain strong, and to be patient as appointments with endometriosis specialists have very long wait lists. Depending on the specialist, their location, some have wait lists of two years for surgery dates. It is also important for patients to recognize that they can seek a second, third, or even fourth opinion if they feel they are not being heard or taken seriously by their doctor. As a patient, as the people living with this debilitating condition, it is important to remember that we know our bodies the best and we need to listen to what our bodies are telling us, it is not ‘just in our heads’.