What are your endometriosis symptoms like? When I used to get periods, from aged 13-26, they involved intense cramping, bleeding, back pain (unrelated to my back issues), and at times the clotting and bleeding was so heavy I would faint or go into shock. I was on birth control throughout most of these years and although it felt ‘normal’ at times, the pain would always come back. I also had terrible IBS. Now I do not get periods, and even with a cleaner diet and lifestyle, I suffer from a constant ‘pull’ or tugging sensation surrounding my left ovary; I have felt the endo pain there for many years and even had a cyst rupture in that area. Whenever a flare-up occurs, a sharp ‘stab’ which can sometimes radiate around my legs and abdomen. I feel fatigued, discouraged, sore, and ‘out of it’ a lot; although I don’t have constant pain, I live in fear of a flare-up and have constant discomfort.
What was your journey to diagnosis like? It began when I started getting my period at 13 and soaked through super tampons and pads within 20 minutes, I was going into shock on the toilet and unable to move. I was prescribed birth control to assist with ‘suspected’ endo; my mom had it, but it went away after she had a procedure done, so they figured I had it too. Heavy periods through my teen years on birth control were sometimes ‘normal’ but I missed school often and had irregular bleeding as well. I also had horrendous IBS and occasional issues with constant urination. In my twenties, my left side started to ‘flare up’ often. Left ovary pain was dismissed and I was told to just try birth control in different forms and take Advil. I was told it was “part of being a girl” by so many people, even employers who didn’t understand my pain. I also have a back issue but knew that my endo pain was unrelated. Chiropractic didn’t help, neither did exercise. At 27, during the most stressful year of my life (filled with death, break-ups, moving, losing family, and the 2020 pandemic) I felt a sudden stab on my left side and ended up in the ER with fluid in my abdomen. This was a suspected cyst around the left ovary, though the CT scan showed abnormal fluid, the cyst wasn’t located. My OBGYN understood that for weeks following this, I had pain in the ‘spot’ I always had, but instead of a dull ache or ‘poking’ sensation, it was sharp. I changed my diet completely, gluten-free and vegan, and this eliminated many IBS symptoms I had along with endo, however, I dealt with intense stomach bloating and swelling. It has been 8 months since this episode, and I was put on birth control again to try and combat the endo. I am currently having my first flare-up in months (which is great; I also no longer get periods due to the pill) and the doctor says the next step is more medication. However, I am tired of the medication. I have no benefits, live alone, commute, and work a low-wage job due to the pandemic. I cannot afford to play around with my body (I don’t react well to medications, typically). He said this is the only way, as laparoscopies usually are a ‘last resort.’ I am trying to push for one; whether it be diagnostic as we still don’t know the severity of my case, of, a removal procedure.
What was your experience with treatment for endometriosis been? So far, for me, I have tried different birth controls but found nothing helped until my lifestyle changed. The low estrogen pill I am on now has not had any adverse effects (I do not get a period, but most women should on the pill) so, I cannot complain. However, my flare-ups were often food-related so eliminating wheat and dairy was my biggest step forward. This is subjective and differs person-to-person, of course. Exercise and ensuring your mental-health is looked after is crucial too. Also, heat pads/bean bags/hot water bottles are my best friend.
How does endometriosis affect your day-to-day life? People judge me. I’m the ‘sick girl’ already because I have gluten issues and IBS (even though they are resolved, my special diet is mocked as being ‘crazy’), and anytime I try to advocate or educate others about endo, they often say ‘yeah my periods are bad, too’ and change the topic. They don’t understand that I have suffered for years. I’ve had people talk about me at work, saying I’m ‘not well mentally’ because I took time off to visit the ER for ovarian cyst scares and bleeding. I’ve bled through clothing in public and been embarrassed by it often. Dating in my teens and twenties was okay; luckily I have always had men in my life who understood and cared; however, just getting into a new relationship now in my late-twenties was nerve wracking because I was scared to let him see me during a flare-up; I thought it would scare him away because I am often crippled by pain, emotional, exhausted and a bit of a mess. Luckily, he has been so sweet and understanding; I find being open from the start about it is key. Work and school have always been tough; I am always scared of being fired, and in school, if I missed an exam or a test, it was considered a ‘girl problem’ and dismissed hastily; I just never felt like anyone took me seriously or sided with me. My family has always been supportive; my mom and dad wish they could take it away from me, but know that I am strong and they have always supported any diet, medication or lifestyle changes I’ve made to help it.
How does endometriosis affect your emotional well-being? I am scared to complain too much, I am scared I’m just weak or that it could be worse and I should just be tough about it, I am anxious about how long this will go on for, and, I know I have fertility issues; I am scared this may impact decisions with my partner in the future. I feel like I let people down. I already had some issues with anxiety and depressive bouts in the past so endometriosis can just enhance those issues.
How has endometriosis shaped turning points in your life up until now and looking toward the future? It has shaped my life in many ways, and this year I am trying to focus on the positives. Career and Education: I am striving to launch my own freelance business; my endometriosis may come and go, or I may feel it continually, regardless, I want to be my own boss, work from wherever I please and be able to still be productive on the off-days. I also want to be around my animals because this brings me peace on rough days. I cannot continue to work various jobs and have to take a few days off or get medical notes every time I need an ultrasound. I feel as though I let employers down so, I figured being university and college educated, and independent by nature, why not utilize my skills and be an entrepreneur! That way, I can work from comfortable environments, and even on a horrible day, I can be productive and enjoy what I do. I know school and jobs have been rough for me at times so, I deserve a career where I can feel fulfilled. Relationships and family: I am in a new relationship and have found being very open about my illness and my concerns have been wonderful. However, I always feel that sense of guilt and anger toward myself that I may not be an ‘easy’ partner; I may, when the time comes, have a lot of issues conceiving. I feel at times (when my anxiety is high) that I am ‘less desirable’ than women who are otherwise healthy. I try to remain positive and let him know what’s on my mind; holding in your worries and emotions doesn’t do any good–whether it is a new relationship, a well-established one, or even a relationship with a family member– talking to a person (or two) who is close to you about your worries and pain will help.
How have you found hope and support in your endometriosis journey? Connecting to many support groups online (mainly Instagram) has been great; to hear others’ journeys, issues and stories always helps me feel better about my own endo-journey, but it makes me feel empowered and less ashamed. Utilizing how broad and amazing social media can be for a variety of causes is incredible. I have been lucky to have great parents, caring family members, and a few good friends who are always understanding, supportive, and not afraid to learn more about the disease. Every romantic partner I’ve had (3 ‘serious’ relationships in the past 10 years) has been patient and understanding; communication and openness is key!
What do you think healthcare for endometriosis in Canada should look like? I think it shouldn’t be so difficult to obtain a diagnosis. Endometriosis should be treated like any other invisible disease: epilepsy, cancer, depression, etc. I feel as though because it’s an issue that often has to do with ‘that time of the month’ people shrug it off as being normal. It was 2007 when I was first told I probably had endometriosis, because of my heavy, horrendous bleeding, and my mom’s experience with it. It wasn’t until 2020 and after a serious health scare that it was finally said “yes it is very likely the endometriosis you’ve felt for years” and even then, I still have to decide between breaking-the-bank for medication, or fighting for more to be done. I feel tired; women (or anyone) with endometriosis, or a suspected case, shouldn’t have to navigate through various specialists, ultrasounds, medications, and 10+ years of bad experiences before having a diagnosis; and even then, I feel many of us feel there isn’t much else beyond the diagnosis, not without advocacy for oneself and years of pushing different treatment options and research.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It is exhausting and can be discouraging; however, I feel that this will change. I can sense a lot of positive action is coming our way, and that everyone has to advocate for themselves and really push for more funding for research to be done, and action to be taken. A diagnosis, plain and simple, should not take ten years. It shouldn’t even take one. I have suffered, been misunderstood, and even been laughed at for fifteen of my twenty-eight years due to my symptoms and struggles; no person should go through that, no person should feel weak or crazy for expressing that they feel something isn’t right in their body. Doctors, employers, and the public in general need to recognize that endometriosis is a disease and we need help.