What are your endometriosis symptoms like? Since my symptoms started developing, every-time I would eat something and there would be food in my stomach, the ‘heaviness’ would trigger unbearable pain. Every time I wanted to use the washroom, my uterus would start cramping and I would feel like I am in labour pain. Later, we found out that my endometrial growth was on the stomach and bladder (and a few other tissues). I was once working and I fell on the floor and collapsed from the pain. My coworkers held my hand as I howled loudly from the ‘labour pain’.
What was your journey to diagnosis like? I was EXTREMELY disappointed by the way I was treated in Canada. I went to 8-9 doctors here, who would trivialize my pain. Some would do a urine test and some would shrug it off as ‘normal pain’. I was not even directed to see a gynecologist because they thought it was not needed. This is after I had entered the office crying in pain. They also made me feel like I was a crazy person who was stressed out because of something else. I also have endometrial polyp that went undiagnosed as a result as well. This was all within a year. One day I stopped walking. I hit the lowest point. I then went to see a brown doctor hoping that maybe she would believe a brown woman in pain. She actually did believe me and referred me to a gynecologist. Relieved, I went to see him. I told him that I was in 10/10 pain scale, and I could no longer walk. I can never forget how he looked me in the eye and said- You don’t have anything, you are fine. That is the day I GAVE UP on the Canadian healthcare system. I decided to put my studies on hold because I knew that my situation in Canada, so called ‘developed country’, would not change. I went back home to ‘developing country’ India, where after a few months, I found a doctor who took charge of my case and scheduled my surgery within weeks. My condition slowly improved, and I recovered and came back to resume my studies. I NEVER go to a doctor here because I am so heavily scarred from the way they treated me. I go back home to India so that my doctor can do follow-up checks on me. The difference between India and Canada is that in India, you don’t have to prove to a general-physician that you are dying of pain. The Canadian system should learn from this, and remove the middleman (GP), who are anyway not experts in any specialized field (especially gynecology).
What was your experience with treatment for endometriosis been? My Treatment was in India. And thank god for that. No waitlists in India. And doctors actually listen to the patients. My Indian doctors firstly believed me when I said I was in pain. They also listened and understood that I am suffering from unbearable pain. They then conducted the ultrasound test themselves so that they could assess the situation. Then they immediately scheduled a laparotomy and performed excision of endometrial growths.
How does endometriosis affect your day-to-day life? Living with endometriosis (pre-surgery) was one of the darkest period of my life.
Work: Not being able to walk, having stabbing pain and occasionally having labour pains was a nightmare. I had a temporary memory loss every time I would experience pain.
Exercise: I don’t even know what to write here. I was unable to walk, so exercising sounded like a luxury life to me.
Social life: I would not be able to move out of the bed. Even if I was thirsty or wanted to use the washroom, I would sometimes just stay in bed because I knew that if I moved, the pain would come back.
How does endometriosis affect your emotional well-being?
How has endometriosis shaped turning points in your life up until now and looking toward the future? I have chosen to stay single because I know that no one would understand my pain and the baggage that comes with it. As mentioned before, I had taken a 5 month break from my PhD studies. Thankfully after receiving treatment in India, I have resumed studies. Had I not gone to India, I would have given up on my career by now.
How have you found hope and support in your endometriosis journey? The Vancouver Endometriosis Society was a helpful tool for me because I connected with people who were going through the same journey. Thankfully my amazing family, my friends and some of my coworkers were a great support system. I received NO help from Canadian healthcare, so I will refrain from including them here. I am thankful that my doctors in India helped me get my life back!
What do you think healthcare for endometriosis in Canada should look like? 1. Incorporate education about endometriosis- birth control is NOT the first line of treatment for endo, excision Surgery is!!! 2. Doctors who are already practicing – take patients who complain about period pain seriously and immediately send them to an expert in endo (NOT a random gynecologist with NO specialization in endo). Send out emails to all of them and make them hear our horror stories
3. Eliminate middle man when it comes to period pain. I should be able to see an endo specialist immediately. 4. I don’t understand how people with horrible pain are expected to be on a waitlist? Would you do the same for chemotherapy? No! Then why do have a waitlist for endo. Its the most ridiculous thing I have ever heard of. 5. Spread awareness on period pain not being normal!
What do you think it is important for people to know about the experience of having endometriosis in Canada? 1. It is on the list of one of most painful disorders known. It like leaving someone who was stabbed unattended. 2. It affects mental health in imaginable ways. I have considered stabbing myself on my thigh so that I could distract myself from the pain. 3. It takes 7 years for people to be diagnosed.