What are your endometriosis symptoms like? 

My first endometriosis flare occurred when I was 34, about 2 years after coming off oral contraceptives. My period came and along with it was a stabbing pain on the right side of my stomach. I though I had appendicitis. I was super nauseous and had diarrhea. After my period was over the pain subsided, but returned predictably every single month. It was a very deep pain, and when my dog would lay on my stomach during my period, it would be very hard to breathe. Eventually, I started getting hip and leg pain as well. I would sometimes get pain when having a large bowel movement. If I had a full bladder and used the bathroom first thing in the morning, releasing my bladder would feel like I was painfully taking pressure off my organs. Sometimes I’d get a shooting pain up the side of my stomach. After a year of failed fertility treatments and declining mental health and insomnia, the pain is now becoming constant. I also get pinching on my ribs, pain under my buttocks and in the front of my vagina. I’m not sure if its painful to have sex yet. Me and my husband haven’t tried since my symptoms worsened 6 months ago.

What was your journey to diagnosis like? 

I had a diagnostic laparoscopy when I was 26 as I was having some pain with intercourse. My Gynecologist indicated she didn’t see any Endo at that time, but surprisingly removed some scar tissue or adhesions off my left ovary. When I came off birth control in my early 30s and the pain hit, I saw my GP who ordered an ultrasound, X-ray and did referrals to a GI specialist and my previous Gynecologist. My colonoscopy was clean. My Gynecologist did an updated ultrasound, prescribed Naproxen and did a referral to a fertility clinic. At the clinic, our fertility specialist dismissed my pelvic pain concerns several times, stating that it just meant I was ovulating. After 4 failed treatments, I asked to be referred back to my Gynecologist (I know, that was a mistake but I still trusted her since she followed me for something else) and I expressed concern about having Endo. I was referred to an Endo clinic 30 minutes from my home at a university hospital. I was seen within 2 months (I think my Gynecologist pulled some strings) and I’m currently on a waitlist for surgery (now age 37). My surgeon has been dismissive about the pinching on my ribs, but I will bring it up at the next follow up appointment. She adamantly told me I should remove either of my ovaries no matter how bad they are. Who gets to decide?

What has your experience with treatment for endometriosis been? 

I had lots of luck with birth control because I was mostly symptom free until going off of it. I took a combined pill (Marvelon) for more 10 years. I’m lucky to have been pain free for most of my life.

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

In the last 2 years, Endo has robbed me of my fertility, my mental health, my physical health, and friendships. I had to take a medical leave off work following a painful and traumatic flare. The trauma has impacted the progression of the disease in my opinion. I returned to work part time with modified duties and this is still a struggle. I suffer from insomnia, depression, anxiety, fatigue and brain fog. I barely make enough money to cover my basic personal expenses. I’m now financially dependent on my husband. Endo has stolen my life from me.

How does endometriosis affect your emotional well-being? 

Endo has robbed me of my mental health. Following a painful and traumatic flare, my mental health really started to decline. I developed extremely high anxiety, insomnia and suicidal ideation and had to take a leave from work. I still suffer from insomnia, depression, anxiety, and brain fog. I have separation anxiety and have trouble being on my own. The light inside of me has died. I grieve my old life. I’m too sick to work and have a normal life, but I’m not sick enough to die. The in-between is pure hell. My husband has been my primary support person through this. He didn’t sign up for this when he married me. He’s young and successful and deserves to be happy. Not constantly take care of his declining wife. I used to be so high functioning, active, driven, loved traveling.. now I can barely leave the house.

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

Endo robbed me of my fertility. Seeing my friends and family around me fall pregnant and have babies has been extremely devastating. After a painful flare I had to take a medical leave from work and have returned only part time with modified duties. This arrangement is still super tough for me because of extreme brain fog and fatigue and I constantly worry ill lose my job. I don’t think my work can accommodate me forever. What am I without children and work?

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

My friends and family have been my sounding board. My GP has been supportive in making referrals. I find it hard to keep hope. My family still believes in me though. I hang on to that.

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

There should be specialized, multidisciplinary teams for treating endometriosis. This should include Gynecologist surgeons, mental health professionals, GI specialists, Urologists, pain specialists, nutritionists, and naturopaths. Women and girls with pelvic pain should be seen, heard, validated and given the treatment they deserve. More funding needs to be allocated to Endo research and treatment. 1/10 is a startling statistic. One of the most painful conditions.

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

This is a whole body disease that affects 1/10 women. This disease destroys organs and destroys lives.