What are your endometriosis symptoms like? A sharp stabbing pain that can bring me to my knees. I lose my breath and have to grab a hold of something till the pain passes and then can stand up.
What was your journey to diagnosis like? I have had painful periods since my first period at the age 13. I thought it was completely normal the pain, heavy bleeding and headaches. Even though I was missing school, sports and social events. I went on the birth control in my later teens in order to helped with my symptoms. At first this did help until my daily headaches became weekly migraines. I was having really bad blurred vision and once I stopped taking the pill my migraines got a lot better. At the age of 25 I started to have painful bowl movements and was diagnosed with IBS. I changed my diet and it did help for a bit. At the age of 30 I experienced a lot of abdominal pain, unexplained acid reflux and painful bowl movements and started to loose a lot of unexplained weight. I was feeling really anxious trying to get my family doctor to help me find the right specialist. I was referred to a general surgeon who preformed a colonoscopy and an endoscopy. This confirm I had microscopic colitis and GERD. I still felt horrible with a lot of abdominal pain. I started to notice some connections in my own body and changes so I asked to see a gynecologist. I wanted a second opinion about my bowel movements so I asked to see a GI doctor. After my colonoscopy I have never felt the same I have had right sided pain everyday for the last 5 years. After floating back and forth between doctor appointments trying all sorts of medications. When I finally met a GI doctor that I found myself who was 3 hours away from my hometown. Said they would take me in sooner than my original appointment. It would have taken a year or longer if I did not called around myself. The GI doctor spoke to me and I filled her in on my journey and I will never forget what she said to me. She said “I think you have adhesions on your bowels, which would be endometriosis. “ I called my gynecologists’ office right after I left the GI’s office and booked a appointment right away. I got in fast signed the papers for my laparoscopic surgery. Two months later I had my surgery. When I woke up from my surgery my gynecologist was there. She said to me “You have endometriosis!” “There was a lot of it, we removed it from your reproductive organs, bladder and bowel.” I just smiled. I knew there was no way I imagined this horrible pain. I was happy to finally have a name to my pain. I was 33 when I got my diagnosis. I thought after my surgery the pain would be over but unfortunately now at the age of 37 I realized the journey still continues. I also learned I may be experiencing some other health conditions as well. So I am working with my endometriosis specialist and a neurosurgeon.
What has your experience with treatment for endometriosis been? Birth control did help with my heavy bleeding and the pain for a few years. Unfortunately I had headaches on it the whole time and than it became daily migraines in my later 20s. When on Visanne I had headaches, breast pain and leg pain daily. Had to stop taking it as well. I have tried pelvic floor physiotherapy multiple times. Also did not have luck with it. Any time they worked on my abdominal area it would create bowel pain. I left there feeling worse. The one thing I discovered at physiotherapy was I enjoy heat pads and I continue with this daily. I enjoyed acupuncture but unfortunately I did not have benefits and it became to costly going every week. Osteopathic massage I find helps, but once again can be costly. Fascia stretch helps my body. Yoga helped a lot. It helped so much I am now a yoga teacher. I wanted to learn more about the practice so I took my teacher training and even added yoga for pelvic so I could help others in the endo community. Food is something I charged a lot. I found charging my diet helps with my symptoms. Having laparoscopic surgery was the best treatment I ever did it help my pain the most. Everyone body’s are different what works for one may not another. Listen to your body. These are just some treatments.
How does endometriosis affect your day-to-day life? I have right sided pain daily for the last 5 years. When I was at my worst I could barely get out of bed. I find I know more about my symptoms now and can pin-point what ache is what at this point. But I am still not satisfied with my quality of life. So I am always trying new things in order not to feel pain. I feel when I exercise I feel better. However my cardio I find I am short of breath easy. Lower forms of exercise like yoga work for me best. I have had to cut my hours at work at my full time job as I can no longer do my job like I use to be able too. If I start to get extra hours it tends to make my symptoms worst as I do have a physical job. I am focusing on my yoga to fill in where I had to cut hours. I am extremely blessed to have a supportive husband and family. I have unfortunately have lost some friends during this journey but I have also gained some. The ones that stuck by me I keep close to my heart. Food wise I find if I stick to my diet of clean GF and dairy free diet it helps. If I drink or eat something that may trigger my symptoms it will not take long for my body to react. Sleeping is usually the worst for me. I experience the most pain at night. Lower back pain and have to sleep with a lot of pillows plus a heater pad.
How does endometriosis affect your emotional well-being? I definitely need to get better sleep. I wake up from pain in my back and bowl often. I cry a lot more than I use too. I definitely am not as intimate as much as I use to be which makes me sad. However I am very lucky my husband and I still connect in many ways and still are physical but not like we use to be in my 20s before I had daily pain. I use to get anxious before I knew I had endo when I would have a bad flare but now I just know to sit and wait it out. I find at times now I am more irritable than I use to be and have to take more down time way from others and reconnect. To get to a more claim state of mind.
How has endometriosis shaped turning points in your life up until now and looking toward the future? If I had not gone through my endo journey I might not have found my true passion. That is teaching yoga. I feel a sense of healing. Healing to my students whatever they are going through and healing for myself. I feel I am a happier person now than I ever was. I took things for granted and complained a lot. I have learned a lot about the body and holistic approaches now. Now I want to help others in there journey of wellness. No one’s journey is the same and there is not one treatment will work for endometriosis. I now want to advocate for endometriosis and help others who are suffering alone in silence.
How have you found hope and support in your endometriosis journey? I never gave up hope during my journey. I just kept listening to my body. Even when doctors would say “we don’t know what’s wrong with you.” I just knew I had to keep searching for the answers myself in hopes of finding it. I am thankful for my family and friends. I am thankful for my gynecologist who gave me my endometriosis diagnosis.
What do you think healthcare for endometriosis in Canada should look like? More ways to get earlier diagnoses, and more research. More education about endometriosis provided to healthcare providers. More test and treatments.