What are your endometriosis symptoms like? No one truly understands an invisible illness until they experience it. Someone could pass me on the street and think that I am perfectly healthy and capable of anything. Unfortunately, what they don’t get to see is what happens inside of my head and what happens when I get home and can finally let go of the façade. There are days when I am invincible. I can do anything I want, whenever I want, however I want. Other days I am fragile. I need medication, I need help, I need comfort. It is truly horrifying how much you can hate your own body during those days.
What was your journey to diagnosis like? It took ten years for me to get diagnosed with endometriosis. I started having symptoms in high school, such as long and irregular periods, extreme pain during ovulation, and extreme pain during periods or leading up to a period. I think it took 4 doctors before one took me seriously. The first doctor diagnosed me with IBS, but when I complained about constant pain she suggested it may have progressed to IBD. By the third doctor, I went into the appointment with all of my research, what tests I wanted to be done, and what specialist I wanted to see. The fourth doctor was the specialist, who finally confirmed that I had endometriosis, and also confirmed that all of my pain, mental anguish, and symptoms were valid and real.
What was your experience with treatment for endometriosis been? For myself, the specialist opted to not proceed surgically just to confirm the diagnosis, but decided we start to treat it instead. She suggested we use Depo-Provera in order to control my periods to reduce pain, and to use CBD oil daily to help with inflammation. Not every day is good. The treatment doesn’t work 100% of the time, but it does work 99% of the time and I am very happy with that.
How does endometriosis affect your day-to-day life? I go to work everyday, I do my job and I come home. However, being social is one of the things I struggle with the most. Holidays are hard because I need to be careful about what I eat or drink in order to keep my pain and inflammation at a minimum. I find the social aspect to be quite exhausting and need down time to recharge to put the « I’m okay » face back on.
How does endometriosis affect your emotional well-being? Because of endometriosis, I also suffer from anxiety, depression, and insomnia. The toll that this pain takes on your mind is astonishing. You have to be in this body every single day, and it is not working how it is supposed to, it is not normal like everyone else’s, and it stops you from doing what you want to do. It isn’t fair. It’s hard to fight against your own body and your own mind. Because this is what you have, and you have to make it work.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Something that endometriosis has taught me, is that I’m strong as hell. I push through everyday. I wake up every day. I keep a positive attitude everyday. I can do whatever I put my mind to. Nothing can stop me.
How have you found hope and support in your endometriosis journey? The things that get me through are my best friend, who also suffers from endo. We can talk about things we are feeling or experiencing with each other, and have someone who entirely understands what you’re feeling. My significant other also helps me get through the bad days. If I am incapable of getting out of bed he takes care of me. He makes dinner, checks on me, lets me know that he is there. Those things are important.
What do you think healthcare for endometriosis in Canada should look like? I think women should be taken more seriously when it comes to their pain. Doctors tend to think that women are over dramatic or lying about their pain. I think it should be easy to diagnose endometriosis. It SHOULD NOT take 5-10 years. A patient shouldn’t have to do research to figure out what is wrong with them and tell the doctor what they think is wrong. The doctor should take them seriously and put in the effort to help their patient.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Just be kind. It isn’t easy. We need people on our side. We need people to understand. We’re not faking, we’re not looking for attention. We’re in pain. We’re having a hard time mentally. Just be kind.