What are your endometriosis symptoms like? In high school I thought my period was suppose to be a bit painful. My mom also grew up having painful periods but was never diagnosed. There were times in high school where I would have to go home due to pain and vomiting. After I graduated high school my period pains got more and more severe, I would end up vomiting for a week straight during my menstrual cycle with stabbing pains in my abdomen.
What was your journey to diagnosis like? About a year after I graduated high school, my monthly cycle became my fear every month. I would be bedridden for a week straight non stop vomiting with excruciating stomach pains. I would end up in the emergency almost every month and would get admitted due to my vomiting, pain and dehydration, I would spend about 3-7 days in the hospital on IV for them to never seem to find anything wrong with me. This cycle went on for about a year and a half and the doctors didn’t have any idea what to do other than give me heavy pain killers and send me on my way, which all those did was make me constipated and then have extreme pain due to not being able to pass a bowel movement. After over a year I was referred to a gynecologist and after another painful 6 months I was finally able to see her. She immediately thought endometriosis and wanted to book a laparoscopy, where they ended up finding and burning endometriosis.
What has your experience with treatment for endometriosis been? After the laparoscopy surgery I was put on a medication called Orillisa, as well as anti depressants and had a few good months. I then started having my pain and vomiting again and this vicious cycle started again. Pain, vomit, hospital – very month. At this point the gynecologist thought there wasn’t any point to do a surgery again and that there wasn’t anything more she could do. I honestly felt hopeless at that point. My family doctor referred me to another doctor to check my bowels and abdomen area. I ended up also getting diagnosed with irritable bowel syndrome (IBS) and every month at my period time certain foods would make me extremely sick. I ended up going gluten/dairy free which was not easy at all and did see some progress some days but then kept doing downhill. After spending another 6-10 months dealing with my IBS I still wasn’t getting any better and went back to my gynecologist where her only suggestion was to get an IUD. I went forward with that although I was completely terrified. It took about 3-4 months after the IUD to start feeling better but now these past few months I have not visited the hospital every month for the first time in 2 years and I have been able to somewhat go back to my normal diet from before. I still eat mainly gluten free to be cautious of my IBS but I have been doing better with an IUD and a mix of medication for IBS and endometriosis.
How does endometriosis affect your day-to-day life? It had a huge impact on my life , I wasn’t able to work, go to college, have a social life, travel, and I lived in fear I would wake up in pain and end up in the hospital. I didn’t feel like myself during this time, and it was one of the hardest things to go through, but when you finally get through it you look back and see how strong you are and how nothing can take you down!
How does endometriosis affect your emotional well-being? I was honestly terrified to go to bed at night. Morning and during the day was the worst time for me, during the night I would sometimes feel better but once I would wake up after sleeping I would be in immediate pain. This really took a huge tole on my anxiety and depression, I was scared to go out, I didn’t want to leave the bed due to pain, this also affected my boyfriend and his mental health to see his girlfriend so sick and not getting better day after day.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Becoming diagnosed with endometriosis completely changed the way I looked at life. I did eat very unhealthy before and did not work out often, getting so sick did make me see how important your body is, I now eat healthy and workout! It also really showed me those who truly care for me and wanted to be there during those hard times and friends who couldn’t have been bothered to see me. After having such a hard path after high school I wanted to really get myself back so I went back to college!
How have you found hope and support in your endometriosis journey? My family, my boyfriend and his family were my huge support staff during this time! I also wouldn’t have been able to manage as well if my dental hygienist didn’t recommend an amazing naturopath.
What do you think healthcare for endometriosis in Canada should look like? Number 1 is a quicker diagnosis, it took over a year to refer me to a gynecologist and it also took 2 years to get a referral call from a pelvic centre and by the point I was figuring out my endometriosis on my own. Canada has kept endometriosis in the quiet for too long and too many women are suffering from it. Canada’s medical system did nothing for my endometriosis other than give me opioid drugs for my pain and have me live life in pain for years just to only be able to diagnose via surgery in hopes it would maybe work. Canada has put endometriosis on the back burner in healthcare and I wish something could have been done to help young women like me get diagnosed faster and not have to live their youth and teenage years in the hospital in pain.