The Physical and Emotional Pain of Endometriosis

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A personal and touching interview with Lisa, as she shares her
journey through endometriosis.

Thank you, Lisa, for taking the time to share your experience. How long have you been suffering from endometriosis?

I’ve been experiencing severe pain from endometriosis since I was 13 years old.

When did you seek medical attention, and when was it finally diagnosed?

I started seeking out help the first time I blacked out from the pain. I was 13 years old. I’ve seen doctors and specialists in Canada and the US for over 20 years and was told I “likely” had endometriosis. Unfortunately, in most cases, the only way to get a definitive diagnosis is through surgery since it very rarely shows up on ultrasounds. My experience with the medical community has been disappointing and frustrating. Most practitioners told me there was nothing they could do since there is no cure and I just needed to live with the pain. I was prescribed pain killers and birth control, and those did very very little to reduce the severe pain. I advocated for myself and pushed to get surgery to remove the lesions and was denied every time because of the likelihood that they would grow back within 4-5 years.

For a disease that affects such a large percentage of people, very little is known about it and there are few specialists. I finally received actual care when I was struggling with infertility. My reproductive endocrinologist was sympathetic to the pain and referred me to a specialist who recommended surgery. After my surgery I was diagnosed with severe endometriosis and adenomyosis and went through a 4 hour surgery to remove as many lesions as possible. My bladder, bowels and uterus were fused together with endometriosis. My right ovary was twisted and fused to other organs. My appendix was riddled with endometriosis and had to be removed. Everyone was shocked that I had gotten used to living with so much pain but unfortunately, when you’re given no options for real pain relief, what else are you supposed to do? All in all, it took 23 years for an "official" diagnosis.

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How has it impacted your life?

Endometriosis has impacted every aspect of my life. My pain gets so severe that it causes vomiting, insomnia, and extreme fatigue. I have blacked out from the pain more times than I can count. It's an invisible illness and you look fine on the outside so it’s hard for people to understand how much you’re suffering .The pain is relentless, and all encompassing and often leaves me bedridden. I’ve missed important events; it’s impacted my relationships and it’s stolen my ability to have a child.

I wish the medical community spent more money and time to research this illness to find a cure.  Or to find actual pain relief options and ways to protect fertility if having a baby is in that person’s future plans. Unfortunately, my story isn’t unique, and I know a lot of women who’ve been brushed off by the medical community and suffer in silence for decades. It’s very emotional to talk about because I’ve lost so many years of my life to excruciating pain and because it’s a disease that largely impacts reproductive organs, people feel uncomfortable talking about it. It's deeply personal and it’s hard to be vulnerable and share such personal details, but the impact of this disease can be so lonely and isolating and I hope that by sharing my story, I might help someone feel less alone.   

What treatments have you found helpful, and would you recommend them to others?

I have tried birth control, strong pharmaceuticals, special diets (plant-based, gluten-free, anti-inflammatory), supplements, acupuncture, naturopathy, homeopathy, massage, special alkaline water, reiki, yoga and the list goes on and on. Some helped manage the pain a little bit but nothing really improved my quality of life.

The reality of this disease is there is no one-stop treatment that works for everyone since it impacts each person so differently.  Last year,  4 years after my first surgery, my pain was so severe that my specialist recommended a hysterectomy. In October of 2022, I had a hysterectomy and that has been a game-changer for me. My pain is reduced by 80% and my quality of life is so much better. It was a very emotional decision for a lot of reasons, but I don’t regret it. I’m so much happier and healthier these days.

Are there any support groups that you can recommend to others?
I’ve found comfort in following endometriosis accounts on Instagram.
A few that I like are: