What are your endometriosis symptoms like? 

I live with daily cramping, sometimes manageable, sometimes so bad I can’t get out of bed. The pain radiates through my left side and down my back and leg. Gas pain brings me to my knees. I don’t remember the last time I went a week without spotting or bleeding. I suffer from chronic fatigue and depression. I am anemic. Some days my stomach is so swollen I can’t wear jeans and can’t eat because I feel full. I also suffer from Adenomyosis.

What was your journey to diagnosis like?

About 3 years ago I was referred to a gynecologist for dysfunctional uterine bleeding and severe cyclical pain. This was after about two years of complaining of symptoms to my GP. I never received any sort of ultrasound or other testing, I was put on Vissane and told to come back in three months. There were no changes with Vissane and my gynecologist said that if I wanted children there wasn’t much that could be done in ways of treatment and that they just wanted to get my bleeding under control so that I could get pregnant. I felt like I was constantly making appointments over and over again without any sort of resolve. I continued to suffer. Multiple ultrasounds and being told they were clear. Multiple trips to emergency, being treated like my pain wasn’t real and that I was a drug addict (I avoid any form of painkiller unless absolutely necessary and won’t even take Tylenol for a headache…)

I’ve had more than one ER Dr laugh in my face. I can’t even begin to name all of the hormones and medications I was put on with my gynecologist. At one point they even said « I’m frustrated I can’t get this under control ». Luckily, I was referred to a Reproductive Endocrinologist when my gynecologist felt there was nothing more they could do. My reproductive endocrinologist after two appointments sounded the alarms due to my symptoms and sent me for a biopsy. Turns out I had a pretty significant case of atypical endometrial hyperplasia. 5 years of pain and constant heavy bleeding and I never had an endometrial biopsy. This saved my life I’m sure of it. Fast forward to the consults with my Oncologist and I start suffering from pain so severe I’m hospitalized. Over a 3 month period I was sent for ultrasounds and an MRI where it was determined that I suffer from severe adenomyosis as well as deep infiltrating endometriosis. I finally had an explanation for all of my pain and suffering. Even after all of this, I still have not been given a referral to see an endo specialist, but at least I finally have validation. I know that I will still need to fight to get proper treatment for my endo which is really really sad. 

What has your experience with treatment for endometriosis been? 

I have not yet received proper treatment for my endometriosis.

How does endometriosis affect your day-to-day life? 

I suffer from depression and daily anxiety, my social life has suffered. I often can’t leave my house due to pain and/or bleeding. I struggle to trust medical professionals Going into a Dr’s office makes me extremely uncomfortable because I feel like I am going to have to fight every time to be heard I have had to kick and scream to get my family to listen. It took years I have had to take time off of work when my symptoms were overwhelming

How does endometriosis affect your emotional well-being? 

I suffer from anxiety and depression My partner and I are rarely intimate because it hurts too much I suffer from chronic fatigue

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

I struggle with infertility My career growth has been put on hold because I often require time off each month due to symptoms

How have you found hope and support in your endometriosis journey? 

Facebook groups like the Endometriosis Network of Canada. Being vocal about my symptoms and conditions and connecting with other women who have similar experiences

What do you think healthcare for endometriosis in Canada should look like? 

The Health Care system in Canada is not even remotely close to where it should be in regards to Endometriosis. Doctors need to start believing their patients. There needs to be more resources and more trained and skilled professionals that are equipped to properly treat Endometriosis. There needs to be more regulation preventing Dr’s that aren’t trained in Endo treatment from doing botched surgeries that do more harm than good. The misinformation needs to stop.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

That Endometriosis is a full body chronic disease. That it is very real and can cause severe symptoms. Family and friends need to be supportive if someone they know is suffering.