What are your endometriosis symptoms like?
They have varied throughout the years and depending on whether or not I was on birth control, however, my most prominent, long-lasting symptoms have been « IBS » issues, chronic stomach problems, bouts of constipation, and diarrhea throughout most weeks, and abdominal pain. I had heavy, exhausting periods as a teen and in my early twenties, and have been suffering from amenorrhea (loss of periods) for years now, even though I’m only 28. I continue to have flare-ups of endo (without bleeding) that include swelling, bloating, fatigue, fainting, and constant, stabbing and ‘tearing’ pains in my stomach; I also urinate a lot. Hair loss, weight loss, and anxiety have come along with my other symptoms, too.
What was your journey to diagnosis like?
I was first told in 2006, at the age of 13, that I ‘likely’ had endometriosis–this was because I had started getting periods and they lasted for months on end– 8-11 months was my average. They were heavy and painful, I was fainting and bleeding through ‘super’ tampons and pads within minutes. All my family doctor could offer was birth control pills. She said I would have to stay on them until I was ready to have children (and suggested that childbirth would ‘help’ the endo even though that is not a proven fact). Throughout my teens I remained on birth control. Although it made my periods shorter and more predictable, my IBS/digestion issues really took over my life. I visited GI specialists and had new family doctors/GP’s over a ten-year span, all of whom diagnosed me with ‘anxiety and IBS’. They offered no help, just a colonoscopy to ensure I did not have any other issues and suggested I take a lot of walks, eat well and drink water. In my mid-twenties, my periods became very heavy any time I tried to stop taking birth control. I had several Ultrasounds (nothing picked up endo, of course) and was told to just stay on the pill by two OBGYNs. I would bleed through my pants at work or at events unexpectedly and was always ‘on alert’ for breakthrough bleeding; this happened even when I was on birth control, too. Then, my periods started disappearing when I turned 26 in 2019– I’d get one or two a year at most– and my current OBGYN said this was likely the result of my low body weight (from always being unwell/not digesting food properly). It wasn’t until I had a painful cyst rupture in mid-2020 that things got bad; however, even with a CT scan at an ER, I was sent home and diagnosed with a ‘benign rupture’; no evidence of endo was seen. Following this episode, I had an ‘endo belly’ for ten months, up until my surgery; I was swollen and in pain every single day, even without a period. I lost 30lbs in just a few months, my hair began to fall out, and I was experiencing night sweats. I could no longer hold my bladder. The pain and fatigue were nearly unbearable, and I even fainted whilst driving (luckily I was in a traffic jam on a highway) due to the swelling and pain being excruciating; my body was exhausted. Finally, my OB agreed it was time to do a diagnostic laparoscopy when I refused to take any more pills or hormone therapy. In June 2021 I was diagnosed with endometriosis. Even with a vegan, low-sugar, anti-inflammatory and gluten-free diet, and with constant birth control use, the endometriosis had managed to spread everywhere. While many spots are’superficial’, I do have some deeply embedded endo, and it is widespread all over the entire pelvic region. The OB did not feel comfortable stating an exact stage, as he is not a specialist, but feels it is quite advanced and, I am currently waiting on a specialist appointment with a highly regarded, endo-expert, as I wish to have a more extensive excision surgery. I still struggle, but from what endo was removed during my laparoscopy, I have found some relief. In total, throughout 15 years I saw 4 GP’s, 2 OBGYN’s and 2 GI’s (one of whom laughed at me when I suggested, at the age of 17, I had endometriosis). It was a fight, it was terrible at times, and it frustrates me to this day that individuals suffering from suspected and diagnosed endometriosis have to wait and advocate for so many years to be understood. Finally receiving surgery and diagnosis gave me that « Ha! I told you so! » feeling of validation, but it was followed by enormous grief for my old self, my old body, and any phases of my life where I felt good. I have suffered immensely from birth control side effects as well– depression, severe acne, and scarring– but I was told for years that birth control was my only option. Recently, I have had some great days, but also have weeks where I feel terrible. Now, all I can do is manage the pain, and wait for my specialist to call me. I have begun a journey to learn to love myself again, endometriosis and all.
What has your experience with treatment for endometriosis been?
Access to care has always been a huge barrier, in my opinion, for anyone with suspected or diagnosed endometriosis. Waitlists are usually very long, and with Covid-19, everything is quite backlogged. My initial laparoscopy got canceled due to ‘another wave’ of the pandemic but was luckily only pushed back by about 7 weeks. In terms of treatment, I was on birth control for 15 years (give or take maybe 3 times when I took a 6-12 month break from it). While it did regulate my periods for a while, the side effects were really hard on me and I often hoped that I would be okay without it. Birth control can help with period predictability, duration, and heaviness, it can also help slow the spread and manage endometriosis; but for me, it honestly did very little. I suppose it managed my symptoms for a while, but my side effects are fairly long-standing now, and, I do not get periods anymore. Other treatments I have been offered include endometriosis-specific medication, such as Orillisa. I have yet to try these types of drugs, as they can be costly and also come with many potential side effects. I have heard good and bad reviews, so I think it really depends on the person. I am underweight due to my years of suffering from digestion and endometriosis really taking me down and causing extreme issues (daily) for the past year. I feel I will recover, but, in the meantime, I choose to not continue with any hormone-based treatments. I had one diagnostic laparoscopy with some endometriosis removed in June 2021, so, while I wait to see a specialist, my focus is primarily on pain management. Pain management treatments can vary; my favorite way to cope with pain is, NSAIDS (advil or naproxen, although rough on the stomach at times, taking these medications on painful days with food does help me). I also love my heatpads/heatbags and use them throughout the day; I am just cautious not to burn my stomach. Hot baths, hot tea (peppermint or ginger), slow walks and yoga stretches, and an endo-friendly, strict diet are great ways of managing symptoms. I also enjoy using castor oil and CBD oil topically with heat (applied over my stomach) as this provides some temporary relief. For back pain, chiropractic visits, as well as ‘icy hot’ type-gels work wonders. TENs units can also be useful, I find my abdomen is a bit sensitive however, using my TENs on my lower back does overall reduce my endo pain!
How does endometriosis affect your day-to-day life?
In the past year, I lost my job, my quality of life, and my own sense of self due to endometriosis. As a teenager/early twenties, I managed to live a fairly normal life…or, I thought it was normal because so many doctors assure me that it was. I bled, a lot. I always had to prepare for breakthrough bleeding or extreme clotting on my periods. I also had terrible bowel issues–they have improved as my diet has gotten more endo-friendly– but many doctors did not even think I had endo, so I ate a lot of ‘regular’ food up until recently. I was always trying to hide my numerous bathroom trips from friends, using Immodium, tums, and other drugs constantly to suppress my issues, or avoiding plans when I just couldn’t leave the bathroom. In the past year, my endo was at its worst. I felt like a horrible burden, even though everyone around me is nice to me and loves me regardless, I was struggling. It was the midst of the pandemic, so I was already a bit isolated, and it just got worse. I was working as a nanny. Initially, my job was 10 minutes away from my home, but for personal reasons (due to life changes) I moved, and my commute was then one hour. Sitting in the car often triggered my endometriosis, and having to be fun and energetic for children all day became impossible. I would be dizzy, weak, in pain, and gasping for air when I got home some nights. I tried everything– every method of pain relief, going to bed early, yoga, taking it easy all weekend in preparation for work– nothing worked. My quality of life was drained from me. I felt so guilty having to call in sick 1-2 times a week; my employers knew I wasn’t well and was waiting on a laparoscopy, but, I still felt useless and pathetic. I was depressed and angry with myself. I also felt this way on weekends; I had just started dating my current boyfriend this past winter. He has been so patient, considerate, and kind to me, but I felt embarrassed that I couldn’t even go for walks, or go more than a few feet without having to stop somewhere and urinate due to the pressure in my stomach (finding a washroom is very hard in public during a lockdown/pandemic, so I often had to do in alleyways and it was embarrassing for me). If I attempted to hold my bladder, I would faint. Now that restrictions from the pandemic are easing up, and, now that I’ve had some of my endometriosis removed (and received a validating diagnosis) I find my quality of life is improving, and, one of the ways I’ve achieved this is by accepting my diagnosis and being very open about it with my family and friends. I talk about endo a lot on social media, and I try to be honest. My friends now know that I was hiding a lot of my suffering from them and aren’t afraid to ask questions or know that ‘Lyndsy is okay if she goes to the bathroom a lot/wears her TENs unit out/has to bail on plans’. I think honesty is the best policy because endometriosis is a chronic condition and it is vital that those closest to you get the gist of your situation–it takes a lot of pressure off of me personally on the bad days to not have to explain or go into detail– those days are the ones I need to rest and be alone or with my boyfriend. I have accepted that I need to be kind to myself, and celebrate the smallest wins each week; even if those ‘wins’ are just going for a walk, or making a good meal. I did lose my job, but, it was for the best. The children I was looking after deserve to be entertained and occupied throughout the day (not sit on a couch with me while I suffer). The family made better childcare arrangements and I was fully supportive of their decision. Now, I am doing what I had always wanted to do–but never started– freelance writing. While losing my ability to work really put a damper on my spirit initially, now I look at this as a great opportunity to strive toward an endo-friendly career path!
How does endometriosis affect your emotional well-being?
My mental health has been effected by my endometriosis in different ways throughout the years. Primarily, my anxiety of ‘never knowing’ what would irritate my bowel, flare my endo, cause endo-belly or just make me feel awful. Sometimes it would be food, other times, if I walked too much, sat for too long etc… This caused a great amount of anxiety and frustration throughout the years when trying to make plans for occasions, parties and travel. This past year, while I was sicker than I had ever been, losing weight, looking unwell, failing at my job, feeling isolated due to the pandemic, and beginning a new relationship, I felt angry, down, and downright depressed by my condition. Talking about it with my partner openly helped; enjoying the best moments, and just being patient during the bad ones, is all we can do, but I am fortunate that he is so accepting and supportive of my condition. I know a lot of people have difficulties with intimacy due to their endometriosis and this can be humiliating. Whenever I feel like I’m not ‘enough’ or I’m ‘too unwell’, he reassures me that he doesn’t mind taking care of me and that I am so much more than my illness. I found speaking with a therapist, as well as being open with my parents, friends and family about how I was feeling was relieving and helped me get through the past few months of depressive episodes. Also, learning to be kind to myself, to treat myself and celebrate wins, and to not punish myself with frustration and guilt if I do not accomplish something– I always remind myself that tomorrow will be better–and so will the day after that.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
By the age of 27, endometriosis basically took control of my life. I had been suffering since the age of 13 in cycles, usually around my period, or, with IBS-type symptoms, but in 2020 I had to plan everything around endometriosis…and, I’m beginning to accept this and thrive. My diet is totally endo-friendly, and, I’ve had a lot of fun with it. My parents even get on board when I visit them and enjoy vegan, gluten-free, anti-inflammatory, low-sugar foods with me; my boyfriend is also very creative and has a knack for culinary skills so we’ve had some great times making delicious meals together. My job will have to be one I can do with endometriosis, and, that’s totally fine. I went to University and College but never did any jobs specific to my educational background– I was sort of a ‘floater’ between fields and contract jobs– but now I can focus on doing what I love, which is freelance writing and copywriting. While building your own business can be daunting and tiring, this is something I feel I can accomplish and enjoy, even during bad flares or days where I am bedridden. I will not have to ‘call in sick’ and not show up (physically) when I am expected to, rather, I can control my hours, my limits, and feel successful despite having a chronic condition. Independence is huge for me, and I still need to make a living for myself, while ensuring my body isn’t overwhelmed, and that I have enough rest and time to heal with my endo gets bad. I am also placing a lot of energy and focus into walking daily. While running and doing sports has always been an issue for me, there is something mentally freeing, and physically rewarding, about spending time alone (or with a friend) on a long walk. Some days I do this leisurely, and others, at a fast pace. Some days I walk for 10 minutes, and other days for 5 hours. It really depends on the day, I don’t push myself, but I let my body and mind guide me. I am trying every day to find new ways to advocate, education and share stories of my experience, and endometriosis in general, with my community. It is so crucial that this disease is more understood by doctors because waiting 15 years to be diagnosed–to be believed–is absurd.
How have you found hope and support in your endometriosis journey?
Unfortunately, I found no support from healthcare providers, other than Therapists (which I recommend to anyone struggling with endo-related anxiety or depression). My OBGYN that listened to me and performed my diagnostic laparoscopy was the only one who ever saw past giving me hormonal medication; I am hoping my future specialist will do the same. However, I am so incredibly fortunate otherwise. I am an only child and my parents have always been so supportive–most importantly, they always believed in my pain–even when doctors assured them it was all in my head. Every individual I’ve ever dated in my past was always kind to me, and I have supportive friends and family. I have a cat, and my parents have my two dogs at their house, and having animals around always calmed me; they all seem to know when I am having a bad day and come to my side to provide comfort; I love them more than they’ll ever know. For the past 2 years, I have lived alone, and have found that joining the Endometriosis Network of Canada’s support group, as well as connecting with other endo-warriors on Instagram, TikTok, and Facebook has been hugely rewarding for me. I can ask questions, tell stories, and listen in a space where I am understood, and where I empathize with others. Additionally, even just sharing a bit of my story–my true, endometriosis journey– with friends on Facebook has been huge. I have received so much support, so many invites for coffee, and so many encouraging words from old friends, coworkers, and even some of my elementary school teachers. This made me feel so loved, and so much less afraid to be myself and speak my truth, especially during an isolating pandemic. Lastly, my boyfriend has been great; we have only been together for a few months, but he and I speak openly about how I feel, he never shames me or lets me feel embarrassed, and doesn’t make a big deal if we have to rearrange plans when I am not feeling well. He took care of me post-op and sees me for who I am, beyond my illness, and that’s all I could ever ask for.
What do you think healthcare for endometriosis in Canada should look like?
n a nutshell, it should look completely different than it does now. I still cannot fathom how patients, such as myself, are turned away and told they do not have endometriosis for years, sometimes decades, before they are given a diagnostic procedure. When patients are constantly sick, suffering, and have visible signs of distress, we need to be taken seriously. I feel like the hypochondriac stigma is too widely used in ER’s–most people are not overreacting or ‘faking’–why would we want to do that? For me, I was gaslit and told I was fine, with every ER visit, GP, GI, and even on OBGYN, even though my physical symptoms included rapid weight loss, severe sweating, a heart arrhythmia, acne, a ‘bulge’ on my abdomen, endo-belly, severe bleeding, pain, and bowel issues that lasted years. Medical professionals need to do more than recommend ‘a walk’, ‘ drinking more water’ or, ‘destressing’. This makes patients feel as though it is all in their head, or, that it is okay to dismiss these clear signs of illness as normal. It isn’t normal. Doctors should understand symptoms of endometriosis do not always correlate with a bad period. They should understand that these issues can cost endometriosis sufferers our jobs, quality of life, ability to live alone, ability to have relationships, and ability to love ourselves. These issues cannot be solved by doctors offering generic, useless ‘mental health’ or diet/lifestyle tips, because endometriosis–although can affect mental health– is not a mental issue; it is a physical disease and needs to be treated as such.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It is isolating, terrifying, overwhelming, and honestly, very painful. It has taken more from me than I’d like to admit, but has given me so much strength and determination to help make changes in my community; even if that means educating just a few people. Endometriosis is invisible to the naked eye; it can take you down for days, weeks, or in my case, 10 months, or, you can have a long span of good days. People often do not believe you are sick, because you can have a few 8/10 ‘good days’ and show that to people on social media, or in person. Then, when you’re encountering rough days, people automatically assume your illness mustn’t be bad, or that you’re attention-seeking, because you aren’t sick 24/7. I wish people knew that if I’m waiting in line for a public restroom, sometimes I’m about to faint from the pain, or I’m about to lose control of my bladder or bowel. Even though I’m a young woman, dressed nicely, and smiling. Nobody ever thinks people who look well are suffering. I wish doctors knew how to do better, other than comment on my low-weight or diet choices and suggest I have a ‘mental health problem that affects my periods’; no, I have widespread, advanced endometriosis and had to wait 15 years to finally have a surgery that officially proved it. Finally, I wish they knew that we need help. It takes a village–the more the general public understands– the more people discuss and empathize, and the more aware we all are of chronic conditions, such as endo, the more understanding, awareness, and support will be available. In my lifetime, I’d like to see advanced imaging be developed and utilized as a means of early diagnosis (that we don’t have to beg for), and, surgeries or other methods or removal that could cure endometriosis. I’ve been put through the wringer fighting for myself, but, at the end of the day, I remain hopeful.