What are your endometriosis symptoms like?
I had a lot of pain at the beginning of my period. I also as a teenager had very wild acne. I bleed very heavily when I am permitted to have periods — more than an overnight pad per hour.
What was your journey to diagnosis like?
A lot of the below ties in with fibroids, but there is a correlation! Fibroids led me to endo… My mom told me recently that as a teenager she brought me to OBGYN appointments and that they suspected endo then. I said « No, that must have been someone else » but she told me that we had gone together as part of my acne treatment. She told me that she had been told there was no cure or treatment. She was so worried about my periods and hormones. I feel sad that she was not given correct information. I do remember receiving articles on endometriosis and reading them as a teen and relating to what was there even if I do not remember the doctor. Fast forward fifteen years, and I started spotting between periods. I was 33 wanting to start a family. I was diagnosed with fibroids in 2018 at 34. But there was no confirmed treatment plan that could be agreed on. I had some pap smears done at the beginning and my GP did not believe my pain. The first recommendation from my family doc was hysterectomy. And she sent a referral to a gynecologist. He talked with me about hysterectomy but wanted to do his own ultrasound.
He had trouble doing a biopsy or speculum exam due to my pain. So in waiting for that appointment, a follow up appointment for yet another attempt at a Smear or biopsy was booked where I was unsuccessful and I was offered no choice except for ablation. But then I was offered a myomectomy from the first gynecologist who then dropped me because I inquired about hormonal and medical management. I switched family doctors and enter gynecologist #3 who worked with me and attempted Fibristal to try and shrink my fibroids. No one mentioned pelvic floor physio. Or other gynecological problems. The fibroids kept growing despite medication. So I was sent to gynecologist number 4 for what I thought was to shrink fibroids with embolisation, and drove a few hours to get there. To be dismissed in a few minute appointment saying he did not believe that I would get approved since I said that having children would be nice. My referral went through unbeknownst to me, at the time, so I called my gynecologist number 3 since I thought I had failed. I cried. The radiologist did call me back but by then I got referred to gynecologist number 4. I was confused but got it sorted out and cancelled the radiologist. I have fibroids confirmed and heavily suspected endo. I have been waiting for surgery since August or September of 2020. I need to use Lupron since nothing staunchest my bleeding and I can go through 48 overnight pads in 48 hours. I use addback hormones.
What has your experience with treatment for endometriosis been?
Lupron is the only thing that helped in terms of medication. Pelvic floor physio has helped me control pain and gain control of my pelvic muscles
How does endometriosis affect your day-to-day life?
In bad months, I would lose a lot of work time. It was expensive to purchase all the pads. I lost so much blood. I became so sad because so many were having children and I cannot. My family suffered too, especially my parents. Dating became harder as my dates want to have kids and I cannot guarantee it.
How does endometriosis affect your emotional well-being?
Depression is a reality with all the workplace pregnancies and friendship pregnancies. I feel so guilty about not being able to have kids due to my medication and surgery circumstances. So it is hard to date people who wish for children. I have to think positive and remember my good side!
How has endometriosis shaped turning points in your life up until now and looking toward the future?
It has been harder to start a family. I have been reluctant to start relationships until I have been treated and have been waiting for treatment. Talking about endo and fibroids on date one is not something I feel comfortable with.
How have you found hope and support in your endometriosis journey?
I am part of two awesome online support groups. My doctor is amazing. My workplace supports me and is interested in learning! Also, I am trying to learn how to educate my MLA and government officials. Patient advocacy is so important.
What do you think healthcare for endometriosis in Canada should look like?
It should be simple and explain things clearly. Not be focused on fertility but on patient centered quality of life. Give patients choices and allow all patients to express their needs.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
There are long wait times. The system needs to be simplified.