What are your endometriosis symptoms like? Bloating, constipation, pelvic pain, painful periods, heavy periods, cystic acne, weight gain, fatigue, headaches, painful sex, painful orgasms, heart palpitation, difficulty breathing, anxiety, depression.
What was your journey to diagnosis like? My symptoms started in 2014. I started developing really awful cystic acne so I sought out help from a dermatologist. He put me on a ton of medications including topical ointments, birth control, antibiotics, and eventually Accutane. My acne started getting a little better but I started developing a ton of other symptoms and eventually stopped all treatments related to acne. The symptoms I started experiencing were chronic constipation, severe abdominal bloating, fatigue, headaches, weight gain, and pelvic pain. I actually lost my period for about 6 months after coming off birth control and when my period finally returned it was so unbearable, like nothing I’d ever experienced before. I ended up in the ER almost every month because the pain during my period and the week before my period was so bad. I was always in bed with a heating pad, taking extra strength pain medications every few hours trying not to throw up or pass out. Over the past 7 years, I’ve seen over 20 different doctors and specialists and no one was ever able to properly diagnose or treat me. Myself and my family have spent tens of thousands of dollars in alternative treatments to try and get me well. I was also sent for dozens of tests, ultrasounds, and MRI’s which ultimately provided little to no clarification as to what was going on with my health. In 2018 I was diagnosed with Lyme Disease, which is another disease on the rise with little to no treatment options available in Canada. I have been treating that disease out of pocket ever since. But in 2019 my family doctor suspected that I also had endometriosis and referred me to a “specialist” in Toronto. I finally had a telephone appointment with this doctor and it was deeply upsetting and disappointing. This doctor was very dismissive and also didn’t seem to have the proper knowledge or skill to treat this disease. This doctor told me that pregnancy and menopause cures endometriosis which I know to be untrue. This doctor also told me that they usually try to reserve surgery for women who are trying to get pregnant which is so discriminatory. They are basically saying that your life and your pain is less important because you aren’t planning to conceive. I also was told that I would have had to wait 2 years to have surgery with which is just ridiculous. So I started joining support groups online and met a lot of other Canadian patients who had travelled to the US and Europe to have endometriosis excision surgery there. There are so many people in this country unnecessarily suffering from this disease because most of the doctors in Canada aren’t equipped to treat this disease. Their main treatment is to put us on various long term medications that have serious side effects instead of offering us what we really need, which is surgery by a skilled surgeon. So after doing a lot of research and discussing with my family, I decided to have fly down to the US in to have surgery. During my surgery, I was officially diagnosed with Stage 2 endometriosis and retroperitoneal fibrosis. Endometriosis was found and removed from multiple organs and ligaments. I had a lot of adhesions and scar tissue in my abdominal cavity. My appendix had to be removed because it was severely damaged. My surgeon also freed up my bowel which was adhered to my abdominal wall in multiple areas and my left ovary which was adhered to my pelvic wall.
What has your experience with treatment for endometriosis been? I received expert excision surgery for endometriosis by a skilled endometriosis surgeon. I made the decision to have surgery in the US because I was unable to get proper care here in Canada. Most people can’t afford to pay for this surgery out of pocket, including me and my family, so we decided to take out a loan. That being said, I don’t regret this decision at all. Having this surgery was probably the best decision I’ve made related to my health in these past 7 years. It is the first time I’ve actually started to see improvements in my health. My pelvic pain has almost all but disappeared. My period pain has significantly decreased and I no longer need to take 10-12 Advils per day. I lost about 10 pounds just from having surgery alone, my energy has returned and I’m able to workout and be active again, which is something I thought was out of the question for me. My digestive issues unfortunately still persist but I am hoping that I will still see some more improvements over the next 6 months.
How does endometriosis affect your day-to-day life? Having endometriosis affected my quality of life in more ways than one. It affected everything from work to family, my social life, relationships, exercise, finances, sleep, etc. I lost a lot of friends and relationships, I felt a lot of judgement and misunderstanding from my peers and coworkers. I was often left feeling ashamed and embarrassed of my condition and didn’t want to be around anyone and even on the days that I did want to be social, I’d have to stay home because of my symptoms. I missed out on career opportunities, family and friend events, vacations. I also landed myself in a lot of debt from all of my medical expenses. I had no energy to do anything. I could only really manage to stretch or go for short walks. I also suffer from extreme insomnia and have had to turn to sleeping medications, melatonin and cannabis. I would often skip work events and social events because they were usually in the evening and that is when my symptoms would be the worst. If I had to attend a function, I would starve myself throughout the day so that I wouldn’t have to deal with digestive pain and embarrassing bloating in public.
How does endometriosis affect your emotional well-being? Endometriosis caused me to have severe insomnia and I would need to take sleeping medications, melatonin, cannabis, or a combination every night just to fall asleep. I avoided having intimate relationships because sex was always painful and I was so self conscious about my body in regards to pain, weight gain, and bloating. I suffered from severe anxiety and depression and cried almost every single day. I often had terrifying thoughts of suicide. Not because I wanted to die, but because I wanted the pain and suffering to end. When it came to work or interacting with peers, I felt like I had to put on a show and pretend that everything was ok, for fear or losing my job, being rejected, or unaccepted.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I really wanted to go back to school to get my bachelor’s degree but because all of my money gets tied up in medical treatments, I had little money for anything else. My parents eventually started paying for some of my medications, supplements, doctor’s appointments, and treatments which I know was a financial burden to them. I haven’t been able to date, let alone enter into a committed relationship which is something I desire in life. I really want to be married someday and have a family of my own and endometriosis has completely gotten in the way of me finding a partner. My career was also affected, and I often saw colleagues get promoted before me, even though I had worked for the company longer and had more experience. I felt like my former employer thought I was a liability because of my illness instead of an asset. My doctor wrote a note to my employer to allow me to work 2 days from home and I believe that my employer and colleagues thought I was getting a « free pass » and didn’t work as hard as them. When in actuality, I was working 10x harder to prove myself to them, all the while dealing with an immense amount of pain and symptoms everyday.
How have you found hope and support in your endometriosis journey? My family was always there to answer the phone when I needed them. Always giving me words of encouragement and telling me that the day would eventually come when I wasn’t suffering. Finally finding my surgeon in the US. He was the first doctor to validate what I was going through, and offered understanding and sympathy. Almost every other « Western Medicine » doctor I had seen in the past completely disregarded me and made me feel like I was crazy or exaggerating. Support groups were amazing! If it wasn’t for these groups and the many patients/advocates in them, I don’t think I would have ever known that I had endometriosis and I would never have had surgery. I’ve made a lot of friends through this and it was such a relief to know that I wasn’t the only one going through this. My new employer has also been so understanding and respectful towards my illness. They gave me time off to have surgery and everyone was so welcoming and kind when I returned to work. I feel like I don’t have to hide my illness from them, unlike at my previous job.
What do you think healthcare for endometriosis in Canada should look like? General practitioners should be able to recognize symptoms of endometriosis, even if they are unsure if the patient has it. I would complain of GI issues to my family doctor and she would immediately send me to a gastroenterologist, who also had never heard of endometriosis. Many endometriosis symptoms can sound similar to other illnesses, but endometriosis should always be explored. It shouldn’t take 6 months to a year to see an endometriosis specialist and it shouldn’t take 1-3 years to have surgery. Excision surgery by a skilled surgeon should be the main course of action when it comes to treating this disease. Currently, most Canadian gynecologists push medications and injections as the only treatment plan and these often always come with serious and possibly lifelong side effects. They shouldn’t be prescribing medications that put young patients into medical menopause. I’ve also found that many doctors, nurses and admin staff have terrible bedside manner and lack empathy for their patients. I understand that they are all busy and probably pushed to the full capacity, but they need to understand that their patients are human beings who are going through hell and are turning to them for help, understanding, and compassion. And if a patient isn’t able to get a timely, effective, and safe surgery here in Canada, than our government should provide them with financial assistance to get surgery outside of the country. Families shouldn’t have to take out loans and go bankrupt just to get the medical care that they need.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Wow there are so many things that people should know about having endometriosis, and I probably won’t be able to cover them all. But I want others to understand that this disease is chronic and debilitating. Patients aren’t overexaggerating when they talk about their symptoms. We want to be accepted, understood, and validated for the suffering that we are experiencing. I think Canadians also need to know that endometriosis is very common and that severe period pain and chronic health symptoms are not normal.