What are your endometriosis symptoms like? 

When I am at my greatest pain it feels like my insides are being slowly ripped. I have stabbing pains in my pelvis. It hurts to do everything – go to the bathroom, have sex, walk around, I curl up some nights in the fetal position crying for hours contemplating whether I want to go to the ED again only to likely have my symptoms brushed off… I disguise it well because I have to but I often want to curl up in a hole somewhere. People can’t see the pain. They think I’m fine because I look fine but I am in agony

What was your journey to diagnosis like? 

I began having chronic pelvic pain when I started my period. I went to my family doctor who told me it was normal and to take Advil. Later I had a cyst on my ovary which was so painful I collapsed in the middle of a furniture store. I went to the emergency department many times in the next years – was never sent for further testing even though my symptoms were incredibly severe. Healthcare providers told me I was dramatic and this is normal pain with periods. When my pain was taken seriously health care workers told me I had PCOS, crones, colitis, inflammatory bowel disease, irritable bowel syndrome but none of them sent me for further testing.

Ultrasounds we’re normal so I was sent home without pain management medications. Finally my family doctor sent me to a gynaecologist who suggested it might be endometriosis since I have a family history and have all the symptoms (this was 10 years after I first told my family doctor I had significant pelvic pain). He prescribed visanne and suggested a laparoscopy. I had a laparoscopy 3 months later which came back as “totally normal”. Upon follow up my gynaecologist told me I “definitely, definitely do not have endometriosis”. I do not believe him and am going for a second opinion. When asked if not endometriosis what he thought it could be and he didn’t know but it didn’t mean I didn’t have pain. Again, no strategies to manage the pain, no stronger pain medications, follow up MRI or referrals to more experienced endometriosis specialists to make sure I didn’t have it. I and others in my health care team am positive I have endometriosis and will be pursuing diagnosis with a different specialist who can recognize it.

What has your experience with treatment for endometriosis been? 

There is no information given when a suspected endometriosis diagnosis is given. I was sent for pelvic physiotherapy (which had been incredibly helpful) and prescribed visanne – a 2mg daily progesterone pill and the mirena IUD – which I have found to have made my symptoms much worse. I had no information about support groups, fertility specialists, pain management clinics or strategies, etc. Not even a pamphlet or explanation of what this chronic, progressive, lifelong disease is. I am thankful I have the ability and resources to do my own research or else I would be completely overwhelmed with pain and feeling hopeless and alone. I am a very emotionally strong person and I have found this to be an incredibly taxing experience. I have immense distrust in the healthcare system because of the way I have been brushed aside and not taken seriously or referred on. Care in Canada for those with Endometriosis is abysmal. I have relied on my peers with the disease, my pelvic physiotherapist and my own research for help because I feel that putting faith in the healthcare system has left me consistently let down.

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

I am off work on average 2 days a month because of my pain, however, I should be taking off significantly more. I am at work in pain constantly. Some days it is all I can think about so the quality of my work suffers. I can’t participate in my leisure or socializing because I am in pain. Also because I feel so isolated because people without endometriosis don’t understand what it’s like. They say “just get pregnant. That’ll help.” Or “you can always adopt” when I express concerns about not being able to conceive children. I used to do yoga, workout, I was a competitive tower and none of these I can do anymore because I am so worried about my pain. I have no quality of life. My mental health has taken such a beating that I don’t even want to do anything anymore. I feel like I’m barely keeping my head above water in terms of my mental health. I am constantly in survival mode and never actually enjoying my life. I am so concerned about my pain and disease that I’m focused on just getting through the next task. That is not a way to live.

How does endometriosis affect your emotional well-being? 

When I’m on or near my period, I don’t sleep. Almost at all. I curl up in a ball and wait for the stabbing to stop. Sometimes it’s so bad I wonder what’s the point in living at all? And when I think of going to the ED, the anxiety of someone telling me that it’s all in my head makes me feel so hopeless. The constant exhaustion makes me feel like I’m terrible at my job – something on a no pain day I am excellent at. I have no self esteem between feeling like I can’t do anything and am worthless, the constant bloating and the scars from the laparoscopy. Plus I am so scared to work out so I hate my body for that reason as well. I have never felt so incompetent in my life.

Luckily, my partner is supportive but he doesn’t understand fully. He wonders why my sex drive is so low and thinks I never want to be intimate with him. What he doesn’t realize is I’m so scared of the pain it might cause. The stabbing, shooting, blinding pain that it has caused in the past and made us have to stop. Or the bleeding it causes. I think it makes him feel unloved. I worry about if I can’t have kids and if he will resent me knowing he could potentially have his own children with someone else. My family and his family put pressure on us to just have kids immediately so we don’t have to worry down the road but I’m terrified that I will be in so much pain I will be a bad parent.

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

I am petrified about starting a family. I worry about not being able to have children constantly. My partner and I had no interest in rushing getting married or starting a family but are finding ourselves so worried that we can’t have kids that we need to speed up the timeline. It’s a lot of pressure from other family to have kids now when we feel we are not ready. I think about going back to school to complete my masters degree but fear I won’t be able to participate in classes because of pain.

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

I have found huge support from others with endometriosis on Facebook or other social media platforms. I meet people with endometriosis everyday who are so strong and resilient. They genuinely want to help each other and share their stories, hardships and triumphs. It is really beautiful.

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

When women complain about serious period pain they should be taken seriously. They should be referred to a pelvic pain clinic, physiotherapist, etc. to help manage pain non-pharmacologically while investigations occur. There should be a pelvic pain/endometriosis specific unit/clinic in at least every province. We need counsellor/psychologists/therapists that are specifically trained in healthcare mistrust, chronic pain and women’s specific issues. Either all gynecologists’ should extensive training in identification of endometriosis or there needs to be more endometriosis specific physicians and surgeons to which gynecologists’ can refer.

Endometriosis specialists should be able to see patients from anywhere in the province. It is not fair that because I live rurally in Nova Scotia I can’t see the best Canadian specialists. Perhaps specialists can see patients virtually until surgery is required? We need more endometriosis surgeons that have exceptional education to identify endometriosis. Physicians need to spend more time with patients explaining what the disease is and how to manage a chronic pain disease. Or else they need to refer to a clinic or interdisciplinary team (nutritionist, physiotherapist, psychologist, recreation therapist (who can provide leisure support/group support groups and help with the mental health side), gynecologist specialized in endometriosis care. We need better pre-op education. When I had my laparoscopy, I was not told how many incisions there would be, that they would have to go inside my vagina, that I would be bleeding through my vagina afterwards, that they would fill my abdomen with CO2. I was told nothing and when I asked if my questions could be answered ahead of time, no one got back to me. It is terrifying that I let someone cut into me and put something in my vagina without knowing what was going to happen. As well, I didn’t know what qualifications my surgeon had for endometriosis identification.

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

You have to be your own advocate and researcher. Develop your own strategies and find a good support group. Make your own interdisciplinary team and don’t simply trust your specialist without doing your own research. The best patient is an educated one. Don’t be afraid to ask your specialist questions and you do not have to let someone cut into you if you are not confident in their abilities.