What are your endometriosis symptoms like?
My endometriosis symptoms can be very unpredictable and are usually worse during my period, but can also be just as bad in the middle of my cycle. My pelvic pain is very severe – my abdomen, lower back, hips and leg pain is excruciating and no position can relieve it. The pain causes a lot of pressure and tension in my abdomen so my bladder & bowels are affected. If I’m unable to relieve the pain, it starts to make me incredible nauseous and usually causes me to vomit. I also get hot/cold flashes and migraines.
What was your journey to diagnosis like?
When I got my period at 13, I had no symptoms of endometriosis (didn’t need heat or pain killers on my period at all!). A few years later, I remember coming across a YouTube video called “My Doctor Didn’t Believe My Pain”. One of the people sharing their story, talked about her symptoms and endometriosis journey. Her story in the video stood out to me for some reason, and I thought how lucky I was not to have an experience like hers. I had no idea what was to come, though. My periods started to worsen at age 15-16, and I began to realize my symptoms weren’t normal. I could not survive a day of my period if I didn’t regularly take strong pain medications. I went to my family doctor at 15 and she reassured me that period pain is normal and prescribed me a very high strength birth control pill. It did take away my period and reduced my symptoms, but caused a blood clot so I immediately stopped the pill. My symptoms continued to worsen.
My friends and family thought I was just being dramatic or had a low pain threshold. Dealing with the pain at school was very hard for me, and I missed quite a bit of school because of it. I remember one instance where I was at school and had such severe pain that I curled up on the floor in class. The school called my Mum and she came to pick me up – my nausea was so bad by the time I arrived home that I was gagging as I stepped in the door and barely made it to the bathroom in time. I spent the rest of the day in bed and couldn’t eat or drink anything without gagging. After so many more instances like this, I decided I needed to push for an answer. I reflected on my symptoms and experience and remembered that video I saw – could I have endometriosis? In hindsight, if I didn’t see that video, I don’t think I would have sought out the help I needed.
I went to a different GP and told him my symptoms, adding “I think I could have endometriosis.” He replied “I don’t really think you have endometriosis, but let’s do some blood work and an ultrasound,” and noted ‘rule out endometriosis?’ on the ultrasound referral. The ultrasound results came back normal. I did my own research and came across an gynaecologist surgeon and endometriosis excision specialist in my city. I am so grateful to have found resources that pointed me in the direction of excision surgery. I asked my GP for a referral to the specialist and had to wait about 5 months before I saw him. I had my first laparoscopy (and cystoscopy to investigate related bladder pain) at 18, which I am beyond grateful for, because I know many people don’t get diagnosed until much later. From onset of symptoms, I only had to wait 3-4 years before my diagnosis. All of my endometriosis was excised. Although the treatment options are still fairly limited and many doctors have a limited knowledge of endo, the difference having a diagnosis makes has been shocking. I took myself to the ER a few months ago with probably the most severe pain I’ve ever had, and after showing the doctors my surgery letters they took me seriously and gave me the pain relief and referrals I needed.
What has your experience with treatment for endometriosis been?
A lot of the treatments I’ve had for endometriosis has been about symptom management. Thankfully I was diagnosed within 4 years of symptom onset, so I was able to get the gold standard treatment – excision surgery. Even after having the surgery I get severe pain, so I do have to take regular pain medication. A TENS machine has been a lot of help too – especially when it’s too hot to use a heating pad. I am reluctant to try birth control / hormone based drugs again after the blood clot I had, so unfortunately have to deal with my symptoms which can be unpredictable. I have recently started pelvic floor physiotherapy which has helped manage my pain (particularly in my hips) significantly, although I wish it wasn’t so expensive.
How does endometriosis affect your day-to-day life?
Endometriosis is something that I’m constantly having to plan around. I know that when I get my period I’ll be bedridden, so I have to decline social events because of it, or constantly try to reschedule things. If I can’t cancel or reschedule something, I make sure to take my pain relief with me, and set alarms on my phone to keep up with the doses. My symptoms are very difficult to deal with at school and work – I can’t take days off, so I have to push through the pain. Especially now that I’m at university, taking even two days off means I miss a lot of course content, so I have to do the best that I can. You learn to hide your pain in public, but there’s also a point that it gets so severe, you just can’t anymore.
How does endometriosis affect your emotional well-being?
Endometriosis has put strain on friendships, relationships and family for me, because so many people still don’t understand what the condition is, that it’s incurable, and extremely painful. A family member once implied I was “lazy” because I needed to rest for the day. Comments like these are incredibly hurtful because you start to question whether it really is all in your head, even with a diagnosis and surgical pictures to prove it! I always have so much anxiety when it comes to maintaining a social life with endometriosis. When I have to explain to someone for the first time why I’m in so much pain or unable to do something, I don’t want to be a burden to them.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
For people with endo, it becomes such a big part of their lives because it truly impacts every aspect of their lives. I have to regularly think about how I’ll manage with the condition as I finish my degree and begin my career.
How have you found hope and support in your endometriosis journey?
I have found so much support in a teen endometriosis support group chat through Instagram that I joined over a year ago. Being able to connect with people who are having similar experiences to you is so important in finding support. The diagnosis in itself gave me hope, because knowing there is an explanation for your symptoms, even if it’s incurable, is reassuring. My pelvic floor physiotherapist has also been a great support.
What do you think healthcare for endometriosis in Canada should look like?
Family doctors/GPs need a better knowledge of endometriosis. There are so many people still suffering with severe endo symptoms only to be told it’s in their head or that period pain is normal – and then pushed to go on the pill. I really believe that endometriosis and other related gynaecological conditions should be part of Sex Ed in schools – if young people learn about conditions that they or their peers may experience, at least they will know to reach out for help.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It is important for people to know that endometriosis is an incurable condition that looks different for everybody. Just a little bit of support from friends or family goes a long way to help someone struggling with symptoms or seeking a diagnosis – putting them down or not believing them is really damaging.