What are your endometriosis symptoms like?
Vomiting, constipation. Bladder pain. Bladder infections. Full body pain. Cramping nausea
What was your journey to diagnosis like?
I have been going to the Doctor to treat painful periods from age 12. Put on birth control age 13 to 19. 19-27 seeking help from local GP. Wouldn’t refer me to a gynecologist saying pain could be in my head and that I had IBS. Went to women’s clinic in 2016 and got a gynecologist there. She did a lap saying I had scarring but didn’t want to call it endo. Blamed scarring on maybe Appendicitis. IUD in. Still in pain for the next few years. New gynecologist told me can’t do anything until I decide to have kids. Start vomiting for 18 months straight. See GP, gastroenterologist, go to emergency and urgent care multiple times.
Say nothing is wrong. Just piling with medication for pain and vomiting. I asked to be referred to a gynecologist in Hamilton my GP said no, that I will see someone local quicker. I had a ultrasound and my gynecologist says there is a mass on my bladder and I need to see a urologist. So it’s not endo related. Have a surgery in December 2020 with urologist. He biopsy’s the mass in bladder says it’s endo and I need to see a gynecologist. Gynecologist tells me in January 2021 to have a baby and I will be fine.
April 2021 I’m in so much pain I would rather be dead. Parents take me to emergency and I am in near kidney failure. The endo had taken over my urinary tract system and completely blocked my uterus. I get to see the gynecologist in Hamilton and they have saved my life. And finally I get good care. But not in my city.
What has your experience with treatment for endometriosis been?
They tried treating with birth control ( IUD and pill) and most doctors in my area are unaware what endometriosis is. Or what it can do to the body. I have had two GPs in my area who have told me my symptoms is every thing else other than endo. Each time making me believe it’s all in my head. I have suffered a lot with anxiety and depression and with health care professionals not validating my pain made it so much worse. I got bounced around from specialist to specialist. And didn’t really get any type of treatment for a long time. Only since I nearly died from this disease do I feel like I’m getting the proper care. Which is sad it even got to that point. I finally got excision surgery, life changing. And I couldn’t get it in my own city.
How does endometriosis affect your day-to-day life?
Pre excision I would vomit 24/7. I would still go to work because I was told there was nothing wrong with me. I would work out four days a week because I thought that would make me better. I would drag myself there puking out of the car window. But I was told I wasn’t sick. So hopefully working out would make me feel better. I would constantly wet myself. Be in so much pain to pee. But I was told to do kegles as I was over thirty so that would stop that. In reality endo was taking over my bladder. I would work and be crying in private because I was in so much pain. But being told I wasn’t sick, I carried on. I lost 60 lbs and my blood pressure was getting higher. A nurse practitioner upping my meds without seeing me. I was told it was because of my anxiety Really I was in renal hypertension due to my kidneys being blocked
How does endometriosis affect your emotional well-being?
I wanted to die , I thought it was better then the pain I was in. No one believed me.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I wanted to have children by now But with everything that has happened over the last few years that journey will hopefully start soon.
How have you found hope and support in your endometriosis journey?
My mum and dad and boyfriend were with me every step of the way. I have a naturopath and a social worker I see to help me mentally and with my natural health. I used Facebook groups to realize I wasn’t alone. And TENC list of excision surgeons to help me find the right one. Also I read books and did research and new I had endometriosis years before doctors did. My urologist in Windsor for saving my life and calling in other specialist to preform that 14 hour surgery that saved my life.
What do you think healthcare for endometriosis in Canada should look like?
Accessible to all. Not according to what city you live in. Have enough endometriosis excision specialist to reflect the number of patients everywhere in Canada. Not just the big cities. Educate our family doctors to listen to their patients and what they want. Not to just push drugs and hormones at the situation.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
That endometriosis can kill, or extremely effect the quality of life. And that doctors listen to people when they say they have pain or symptoms. Hear us.