My experience with endometriosis
One in 10 people who menstruate live with the disease, and it takes years to get diagnosed
(File art/ Kristen Frier)
Imagine if you were experiencing pain from something no one could figure out — even doctors. Going through life with no real diagnosis and being in so much pain that you can’t get out of bed, that’s what it’s like to live with endometriosis.
It’s an underrepresented disease with underwhelming treatments, to say the least. I should know, I have it. If you have heard about it, you probably know it as the “period pain problem” affecting people who menstruate — but it’s not that simple.
Endometriosis is a disease where endometrial-like tissue, which lines the uterus, grows outside of the uterus and can cause bleeding inside the body. It grows like sticky weeds between organs or collects cysts on your ovaries, bladder, intestines, or on other parts of your body. It’s extremely hard to find, even through an ultrasound or MRI. Endo can only officially be diagnosed through laparoscopic surgery.
There are many symptoms that come along with endometriosis, such as pain during or after sex, painful bowel movements and urination, chronic pelvic pain, and fertility challenges.
When I see this list of symptoms, I see someone’s missed opportunities to live normally. The sadness of having to distance yourself from intimacy, experiencing persistent digestive pains, and missing out on starting a family can be really detrimental to your mental health over time.
My worst experience was with digestion. I had bloating, burning pains, and severe nausea every time I ate or sometimes for no reason at all. My lower right abdomen would swell into a giant bubble, making my belly look lopsided. There were many nights I would hold my stomach while I cried myself to sleep, and the medical system was nearly no help.
I was ping-ponged around clinics trying to get answers. Once I got referrals, I had to beg the specialists to dig into my case and take my pain seriously — and I haven’t been the only one. Almost 11 years of my life were spent sitting in waiting rooms, calling specialists, or going to the ER, while my friends were out enjoying their lives.
There are only four endometriosis specialists and one clinic for this disease in B.C. After 18 months on a waitlist, I finally got surgery at the BC Women’s Hospital with one of these specialists.
Four clusters of endo were found, namely one large mass strangling my lower colon, right where the swelling had always been. I wish I could say all my pain was completely erased, but unfortunately for most people, the recurrence rate of endo growing back is up to 67 per cent.
Even with a diagnosis, there’s no cure. Treatment options are limited to hormonal therapy, strong pain medication, or a complete hysterectomy — which triggers an early menopause.
This isn’t just a condition, it’s a disease, and it should be treated as such.
Seeing how one in 10 people who menstruate live with endo and the average wait time is five to 10 years for diagnosis, there needs to be more awareness around gender disparity and how those who menstruate are treated in the medical field. Especially when it comes to justifying pain.
March is Endometriosis Awareness Month, and more needs to be done for people suffering from this disease.
We need public awareness and public pressure. More medical training is needed in both knowledge and approach to patient care. We also need more funding for research, specialists, and we definitely need a cure.
