What are your endometriosis symptoms like? 

My symptoms are severe cramping on the first day of my period, accompanied with a very heavy flow. I will usually have a severe urge to go to have a bowel movement and I will become sweaty/clammy all over. In some cases I’ve vomited, but that is rare for me. My symptoms of Endo are NOT every cycle – which is what I thought they had to be to have Endo. I would have some cycles where I could function through my life – still uncomfortable with cramps but wasn’t debilitation – a few extra strength Advil will get me through. But every few months I would have a period that left me bed ridden, in the bath tub, rocking myself to try and overcome the pain.

What was your journey to diagnosis like? 

At age 13, I started my periods and three years later the pain from my period was debilitating. Sometimes I vomited, but mostly I’d be writhing in unimaginable pain. No one believed me. I would break out into full-body sweats and was often completely incapacitated. I remember crawling on the floor of my high school trying to make it to the phone to call my Mom. The severity of my pain varied month to month. During a bad period (around 19 years old), a doctor diagnosed me with Primary Dysmenorrhea, which is defined as painful menstrual cramping with no recognized physical cause. They implied that this was normal. They gave me an injection of Gravol for nausea and sent me on my way. Then, in my twenties, I saw a reputable Gynecologist. They told me, “we haven’t confirmed what causes menstrual cramping pain for women. We think it’s caused by the thickening of the uterine lining… the thicker it is, the more painful it is.” They prescribed me birth control, which decreased my pain, and made my flow lighter and shorter. When I turned 29, my husband and I wanted to get pregnant, so I stopped my birth control. My pain slowly returned. At the time I was working 45+ hours every week in retail. I chose a different career in an office setting, in an effort to reduce my stress levels. I still couldn’t get pregnant. After two years, I was referred to a Reproductive Endocrinologist for a hysterosalpingogram, an x-ray test that looks at the inside of the uterus and fallopian tubes and the area around them. It showed no blocking in my tubes, or abnormality in my uterus to explain why we couldn’t conceive. They diagnosed me with “unexplained infertility” and recommended I start taking hormones. I was scared. We decided to hold off on the hormones and continue trying a little longer. Meanwhile, my periods were getting in the way of my new job. I had to start out as a casual worker, with no guaranteed hours. I had already called in sick a few times due to my period. I felt like I was going to be seen as lazy, like someone who couldn’t handle her period, or would use it as an excuse to miss work. After a few more years of trying everything we could, I was so mad that I had no answers. I saw a gynecologist while we waited for the second appointment with my fertility doctor. They told me my only choice was In vitro fertilization (IVF) or adoption. When I mentioned the possibility of it being endometriosis they said, “We would likely cut you open and burn a bunch of stuff in there, and that’s not going to do you any favours.” At my second appointment with the reproductive endocrinologist, they suggested Intrauterine Inseminations (IUI), the flushing of sperm directly into the uterus. I did one IUI in March, and it failed. From there, the COVID pandemic led to my clinic closing from April till June. When it reopened, I did three more, and they all failed. In September 2020, I had the worst period pain I’d ever experienced. When I told my best friend about it she said, “Jen, I swear you have endometriosis. You need a referral to BC Women’s Hospital.” I asked my GP for a referral. They discouraged me, warning me there would be too a long wait. I insisted, and they put in the referral. One month later, I did my fifth IUI which again, failed. In November 2020, I had my Zoom consultation with BC Women’s. The doctor validated all of my pain and all of my experiences. She was so angry on my behalf. She said I definitely have endometriosis, and that her research shows my symptoms made me three times more likely to have this disease than anyone else. I was crying openly to her. She said, “I wish I had seen you years ago. If not only for fertility purposes, a laparoscopic surgery could have decreased your pain by up to 50 percent.” Dr. Williams suggested that I should undergo IVF, given my age and my Anti-Müllerian Hormone levels, an egg count test. Surgery would be a six to eight month wait, plus recovery time. This would put me closer to age 37, decreasing my odds of trying to conceive naturally. I went back to my reproductive endocrinologist and told them what the doctor at BC Women’s said. I said, “we would like to go forward with IVF, and it will have to be a protocol suitable for someone with endometriosis.” They didn’t have a response. I have been made to feel my whole life like I couldn’t ‘handle’ my periods. Women in my life would say, “Oh yeah you just have your period,” and dismiss it like I was weak for not being able to manage it. All of my doctors, OBGYN’s, and my reproductive endocrinologist never once mentioned endometriosis. This is most likely why I haven’t been able to have a child, after trying for six years. I feel like I’ve had that time taken from me. I’ve had to demand treatment at every step of the way. So today, I’m sharing my story because I don’t want anyone else to have to go through this. Thank you to the BC Women’s Centre for Pelvic Pain & Endometriosis, for being such a successful force in changing the way our society views women’s health issues.

What has your experience with treatment for endometriosis been? 

I will be undergoing a lap procedure at BC Women’s hospital if my upcoming transfer cycle isn’t successful. Because I have Endo, I’ve been on two months of Depot-Lupron to try and decrease the inflammation that has prevented the embryo to implant.

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

I have had to leave work on very busy days, on days I was in the middle of training. I have missed special occasions because I have been bed ridden. I have had to cancel appointments because I was unsure of whether my upcoming period was going to be really bad or not so I couldn’t chance it. I’ve been embarrassed having to run to a public washroom unexpectedly. I have had to pull over and run into a Save On to buy medication while covered in sweat. I thought the pharmacist thought I was on something. I have cancelled on personal trainers because of my period and on the days that weren’t AS bad, and I didn’t cancel something, my focus was completely elsewhere.

How does endometriosis affect your emotional well-being? 

Until I was diagnosed, I was always made to feel as though I was ‘delicate’ and I just couldn’t handle the burden of being a woman. Even other women made me feel that way. I would try and explain my periods and they would just agree and say yeah, my period was so bad last week too, as if it’s just a ‘thing.’ I would try and say, no, you don’t understand my level of pain. It’s unfortunate, but I’ve come to think that because you’re usually born with this, and the pain slowly increases the older you get, the higher your pain tolerance. So, to some people who think that you’re managing okay, the level that you’re at pain-wise is actually unacceptable. You start to actually doubt yourself, thinking that you’re overreacting and this is just how it is… so you do what I did – you put up with it. Endometriosis is likely why I haven’t gotten pregnant, and that has totally affected my entire life. My sex life, my marriage, and prevented us from experiencing the joys of achieving pregnancy. It’s become a terrible trauma we’re going through, and had I been diagnosed a lot sooner, the emotional, physical and mental impact wouldn’t have been so intense.

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

My journey with infertility that led me to Endometriosis has made me become an advocate for other women. I am joining these groups, I’m sharing my story like I did with BC Women’s Health Foundation. I spend time each day talking to so many women about infertility and endometriosis. My free time is spend researching and sharing. Right now, I am working with my MLA to hopefully get IVF Funded in BC as it is in Ontario. With that, will become more awareness of infertility and subsequently the things that cause it – like Endometriosis.

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

My best friend  was the one to tell me she thinks I have Endometriosis. She is a patient of BC Women’s Hospital and she told me to ask my GP for a referral to her. My GP actually seemed hesitant with me to even offer the referral, cautioning me that it was a long wait. Who cares how long you have to wait, when I’ve already waited so long? That kind of approach may lead some people to change their minds and see someone lesser qualified. I’m thankful I advocated for myself as I was able to speak with one of the doctors at BC Women’s via Zoom in November of 2020. She GOT me. She understood. She was angry for me, and it broke me down into a sobbing mess. I’ve seen numerous specialists, even an Reproductive Endocrinologist that allegedly specializes in Endo. Even though I explained my period pain, no one even mentioned Endo to me, not once. I even had my last Gynecologist tell me  » I could go in there (uterus) and burn a bunch of stuff but that isn’t going to do you any favours » … literally. And in her notes, she wrote she spoke to me about the Lap Procedure. She did not. I don’t understand why this surgery is avoided. It’s almost as though they don’t want to incur the cost of it so they don’t even bring it up in the off-chance that there’s a spike in surgeries. It’s really sad, and this experience has taught me to help other people.

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

During your pap, you should be asked about your period and abdominal health. It should be a mandatory screening. That way, even though us women can maybe share what we think is normal – maybe a GP would be able to point out if things are not. I’ve NEVER been asked about my period by my doctor until I was trying to conceive. In my twenties, I was just referred to a Gyne that put my on birth control. Also; in high school it should be a mandatory women’s class that you are taught about your period and reproduction. Women need to know at a young age what is ‘normal’ when to seek help and what to say so they know how to advocate for themselves. I have spoken to so many friends that have families and when I share all about my infertility journey, they had NO idea what it takes to actually get pregnant. You aren’t ever taught about it. There needs to be more areas of awareness.