What are your endometriosis symptoms like? Each time I get cramps or flare ups it feels like I’m getting stabbed over and over. I want to go in and pull out my insides.
What was your journey to diagnosis like? As a child I always had lower abdomen pains I cannot even tell you how many times my mom would come and get me at school. To the point that they thought I was faking to not go to school. Each time I would go to the hospital they would prep in case it was my appendix but it wasn’t. At 13 I got my period, I was in grade 6. The first month was ok. From 13 on to my 18 birthday each month was hell. Missing school at 16 was my worst year ever. I had gone and see a naturopath and he told me I had endometriosis. My aunt who had it has a child and never was able to have kids told me that it was the disease they told her she had after they did an hysterectomy on her and it even cut a piece of her intestine back in the 80ies. I was getting so sick tired very weak, high anemia and doctors told me that I had chronic fatigue syndrome I missed 2 months of school. My turning point was the day after I turned 18, I was working and was taking stock on a higher shelf with ladder and I got a very bad sharp pain, my manager was near by and caught as I was falling. He called my mom and I was brought to the hospital. The general surgeon who was on call that day said this was enough and I thank the god for him because he hospitalized my and said we will only dismiss you once we find the problem after 3 weeks being poked at and doing ultrasound, scans MRI they saw a like a mass in my lower abdomen so he decided to do an exploratory surgery. The day of my surgery would have been my high school prom. I was under for 5 hrs and that is when he found a big endometrial cyst of 6 cm behind my left ovary they reconstructed that ovary as best as the they could. They next day he confirmed I had endometriosis and it would be a tough journey and my chances of having kids was very low.
What has your experience with treatment for endometriosis been? My first treatment was the pill to control my cycle and try to limit my pain. After my surgery at 18, the surgeon had cleared most of the endo so I was good for 2 years maybe. At 20 pain started again – bad flares – so I was put on stronger meds for pain. I don’t remember the name but I do know that I lived with Naproxen by my side and still to this day at 44 years old.
How does endometriosis affect your day-to-day life? My twenties was surgeries over surgeries to clean my endo and trying to get pregnant. Each month was horrible my period was my worst enemy. I could not make plans without having flare ups my friends and family knew and were very understanding. My boyfriend from when I was 18 who is now my husband was my rock and was always by my side with each flare and hospital ride he was with me. Every surgery I always woke up with him and my mom by my side, my life would be a disaster without them. You need a strong entourage to be able to beat this monster.
How does endometriosis affect your emotional well-being? It got very hard for my husband and I when we would try and get pregnant each month and it was negative. Friends and family would be announcing they were pregnant. I would cry and isolate myself from people. It was hard for them to even tell us. We did so many different treatments with a specialist and thank god our last resort was IVF and we got pregnant with twins girls 14 yrs ago.
How has endometriosis shaped turning points in your life up until now and looking toward the future? After I got pregnant we thought it would get better but due to my endo at 24 weeks pregnant I got a placenta previa, started bleeding, was rushed to the hospital and they were able to stop the bleeding and save the babies but a was very hard and long 3 months in the hospital until I gave birth at 30 weeks to premie tween girls. I almost died giving birth because I lost too much blood. I had a blood transfer. We were blessed and I got to enjoy a good 2 years of normal pain after they cleaned me during my
c-section. Sex was not painful I thought having had the babies got rid of everything. Went back to work in 2009. My career was advancing nicely all was great until 2010 pain started again bladder infection one after another so back under for another clean up, but the doctor had told me the next time they would have to do an hysterectomy to remove my uterus. So in 2011 I had an hysterectomy but they kept my ovaries. I was finally ok and my life was amazing I had advanced in my career, my kids were in elementary school at this point. We moved in a bigger house, sex was much better no more pain. I found the strength to go back to school online for a marketing certificate got a higher position at work. In 2016, my flares came back with vengeance I could not understand since I had no more uterus. My bladder was pushing and I was peeing blood clots the pain was unbearable. Urinary tract infections, one after another. For 1 year I was in so much pain that I would go to work and have leave. The doctor said we needed to remove ovaries because endo was back and attaching to bladder. So we waited to get the call for my surgery. Work was understanding and I was able to work from home and go in on good days. I had my surgery in 2017 they removed my ovaries. So now the doctor said I would be going in menopause so endo would be gone. After my surgery it was very hard to recover. Hormones were crazy and pain was not better I was still swollen but in March I went back to work and tried to gain back my life to normal. I told the doctor that I didn’t feel like it was healing and I still felt cramps. She dismissed it and said it was normal. Work was so busy, I was a marketing coordinator for a whole cosmetic brand and we were launching a new body and there wasso much work. My body was not ok but I didn’t listen and pushed. My girls also were graduating elementary and I was involved at school for their graduation ceremony and celebration. In 2019, I was at work and with some colleagues and my face just went pale and I was going to pass out, I got such a bad pain in my abdomen that my back blocked instantly and my stomach started to swell. I was crying, left and went to the doctor who sent me to the hospital. They told me my endo was back, I could not believe it when I had no more reproductive system. My gyno who operated me didn’t believe me and didn’t even want to see me. My family who’s amazing insisted and said we will do an MRI to see. My family doctor read to me my results and yes my endo was back again with vengeance, I have nodule in my lower colon, a bigger nodule near my main artery next to the cul-du-sac area and 2 herniated discs. I’ve been off work since because of pain. I’m very limited on picking up things. Being followed at a pain clinic by a team of specialists for endo who have been try different drugs from Lupron to Orlissa because they are afraid to do surgery. Meds are so strong I got shingles because of them. My life went from amazing to not being able to do anything once again. I needed to get a lawyer to fight for me for insurance to keep on paying my long term disability. They don’t understand this disease. Finally, I won my case because my lawyer was amazing. But it’s always a struggle and Covid is not helping. Life is very hard living with endo, but I realized that you need a lot of support my family, my husband and mom are my rock.
How have you found hope and support in your endometriosis journey? The pain clinic was my turning point, knowing that I can reach my doctor and nurse. They are specialized in endo he knows what he’s talking about. He explains and listens. He’s the one who found out that the reason my endo came back is that when the gyno removed my ovaries a little piece must have remained inside. My husband and my mom we actually expanded my house during Covid and changed it to intergenerational house so my mom, who was living alone, could move in with us. She’s a big help and it’s a good thing for her too she didn’t want to be alone especially now with Covid.
What do you think healthcare for endometriosis in Canada should look like? We need more doctors who understand us, who believe us, who can research more about this horrible disease. Meds that don’t cause worse side effects than the actual pain. Less time to diagnose. Talk about it to let people know it exists. Have a better plan for people who can’t work because of it. Not having to get lawyers to fight for insurance that we paid for to pay us. Why is it always a battle for us, isn’t endometriosis a battle of its own enough?
What do you think it is important for people to know about the experience of having endometriosis in Canada? Get ready to fight your battle.