What are your endometriosis symptoms like? At first just pain with periods. But I now have some kind of pain daily. And little nodules all over my abdomen. At first my leg would only go numb and have burning sensations during my period. It’s now numb always and burns during my period. I have troubles going to the bathroom during my period. Both ways. If I try to pee it’s painful and takes a long time. If it’s the other way it’s very painful and sometimes I see stars and throw up. I have all kinds of digestive issues. I’ve passed out trying to work with this pain. Companies aren’t kind if you take time off for your period. Ambulances are expensive when people call them every time you pass out. I’ve been fired so many times for sick time. I got my period at 8. At 10 my dad took me to the emergency room. After a bunch of tests I was admitted to psychiatric care. I’m still afraid to tell doctors when I’m in pain.
What was your journey to diagnosis like? It took 25 years (I know I was in pain this long as I was 10 when I was admired for psychosomatic pain with my periods). I’ve been through countless gynecologists who often write off my pain and bleeding as psychological. I’ve had 2 surgeries and 2 procedures that didn’t do a darned thing to help. Or they diagnose me as “heavy bleeding, heavy cramps.” I’ve had trouble getting pregnant too, and just figured I couldn’t until I saw an excision doctor in Calgary. The doctor who sent me to her said she didn’t think I had endo until I asked about my numb leg. Then she said she’d seen a person once with endo whose leg did the same and referred me. She tried me on Lupron until I could get in. At first, it worked well and seemed like a miracle. But then it stopped working and I had my period all the time. With so many side effects it didn’t seem worth it. My spouse came to the appointment with the excision doctor. He pointed to the poster on the wall with all the symptoms and said “she has all these, but the other doctors said it wasn’t endo… how come they don’t know?” I’ve been waiting 3 years since seeing the excision doctor who says I likely have endo. And I’m waiting now for surgery. I’m so sick all the time. But I’m supposed to get it sometime in early 2020. (I’ve been waiting 3 years). With COVID I hope it’s not too much longer. I really want a baby and the excision doctor says an excision might mean I can get pregnant. I’m so close to 40 and I’m worried about the wait. I mean it’s a pandemic so I have to wait it out. Being on the list is hope. My doctor says with the nerve surgery he’s doing with my excision he can’t get rid of all the pain. But can turn it down. That sounds like a pretty good deal.
What has your experience with treatment for endometriosis been? I’ve tried a lot. The local pain clinic has been amazing. I’m in regularly for kinesiology and pelvic physiotherapy. I’ve been on Lupron, which for me is awful. When I was younger I tired every birth control under the sun. Progesterone only ones don’t work well for me. But keep trying until you get one that works. I worked in the US for an employer that could fire us if we took birth control while not married (premarital sex). Without an endo diagnosis, I couldn’t take it. I got sick and after 3 years lost my dream job. I was diagnosed with gallstones and came to Canada to find out I had none. Birth control makes all the difference for me. Endo massage has been huge. My massage therapist works on all the nodules she finds in my abdomen. And in combo with the pelvic physio, I got my sex life back. I’m hoping to have an excision soon and see if it helps my pain. I’d love it if going to the bathroom was easier.