What are your endometriosis symptoms like?
My main symptoms before surgery were very painful intercourse, periods lasting 1-2 months, pain with bowel movements, pain with tampons, bloating to the point I looked pregnant, low back pain, and obviously chronic pelvic pain/discomfort. I would get intense pelvic pain, kind of like how it felt before having diarrhea like another member mentioned, except ten times worse. It’s a combination of burning, cramping, and a “pulling down” feeling. The pelvic pain would get so bad I would lose my breath and almost pass out and one time I actually did. My parents found me passed out on the bathroom floor in the middle of the night after I was crying out for them. This was in my early teens before I knew endometriosis existed, I just thought I really had to go to the bathroom. On top of all this, you have other symptoms like constipation, bladder urgency/frequency, and fatigue.
What was your journey to diagnosis like?
Where do I even begin with this. It took around 8 years for me to get a proper diagnosis. I was dismissed so many times by so many different doctors, many of which didn’t have a clue about the disease or how to help me. The symptoms began in my early teens so my family doctor referred me to a gynecologist. When I explained my story, I remember being told periods lasting over a month at a time were completely normal. I knew this was false as most of my friends had periods lasting 4-7 days so I never went back to this specialist because I didn’t trust them. I was then referred to another gynecologist who was so caring and took my symptoms seriously. She prescribed me many different birth controls with no success for pain so it was then assumed I had endometriosis and that’s what I was going to be treated for. At my follow-up appointments, she would literally write out ALL the treatment options on a piece of paper, explain them, and tell me to pick one. This was overwhelming to hear that I needed to take pills that can cause artificial menopause and/or osteoporosis, cause hair loss, and lower your sex drive. After a few years of hormonal medications and endless office visits with only some improvement and no confirmed diagnosis, I started to push for testing. My first ultrasound showed suspected adenomyosis so finally, after all the years that passed, my feelings were validated and I was heard. My MRI that followed, was negative for endo. I should also point out that there were multiple emergency room visits for the pain, bloating, and abdominal issues and I was also prescribed antidepressants to cope.
What has your experience with treatment for endometriosis been?
On top of hormonal medications, I have seen dietitians, naturopaths, pelvic floor physiotherapists, psychologists, the list goes on. Changing my diet and going to pelvic floor therapy did not help me at all in the beginning. Eventually, my original gynecologist offered to do surgery on me however I moved to a different province so I was transferred to a new gynecologist who did not want to perform surgery on me since I was “too young”. After years of waiting and just suppressing symptoms with pills, only recently did I convince this doctor that it was time and man do I wish she would have done it in the beginning. She biopsied different areas in my pelvis which confirmed endometriosis as well as cauterized and excised as much of the disease as possible. We do not have any excision specialists in Nova Scotia but she is the most qualified in our province so I trusted being in her hands. The surgery was life-changing for me in so many ways and my quality of life has drastically improved. Now that some of the disease has been removed, dietary changes make a big difference as well as pelvic floor physio.
How does endometriosis affect your day-to-day life?
I am one of those people who do not show emotion. Even when I was in a lot of pain, I would show up to work/school and “suck it up”. I didn’t want to put myself in a situation where I would have to explain why I was missing out on things. One thing the pain majorly impacted was my ability to get fit. Every time I started to workout, I would get the deep, intense pelvic pain causing the faint feeling. I would have to stop and go to the locker room and sit for 15-20 minutes until the wave of pain passed. Sometimes I wouldn’t be able to continue and I often skipped days because I was so uncomfortable and looked pregnant from the bloating. This went on for years.
How does endometriosis affect your emotional well-being?
Endometriosis involves a rollercoaster of emotions. It really tests your limits both mentally and physically. Some days you will wake up being like I got this, I am not letting this condition control my life and other days you are completely defeated in every way possible. I personally suffered from so much anxiety over this and I still do at times, especially when I have follow up appointments or tests. I often think of how different, and better, my life would have been if I wasn’t 1 of the 10 people suffering from the condition. It just makes you feel so alone and isolated and the lack of awareness and education surrounding the subject doesn’t help. I personally have a hard time talking about endometriosis to even my closest family and friends after what I have been through. I lol’ed at the intimate relationships part of this question because endometriosis ruined many of these moments for me. It truly blows my mind people can have intercourse pain free.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Living with endometriosis limited me in so many ways. I am a very goal-oriented and driven person so it was very hard for me to accept that this condition was the priority rather than my goals and dreams. It’s not like you can just ignore it and go live your best life, it drains you mentally and physically. I unfortunately don’t get excited about starting a family because I consider many things. What if I can’t get pregnant? What if I passed down the endometriosis to my child and they had to go through everything I did? How will I care for children feeling the way I do? In regards to relationships, it took me a long time to finally settle down and be open about this condition to a partner. I was embarrassed so I was very closed off for a long time which clearly doesn’t help progress a relationship. Thankfully I found someone who is understanding, caring, and willing to help where he can.
How have you found hope and support in your endometriosis journey?
Unfortunately these experiences were few and far between for the longest time however in the past year I joined support groups on Facebook where people share their stories and advice on endometriosis. I also have one best friend who I can always rely on when I’m down or need to talk. My pelvic floor physiotherapist is also amazing and goes above and beyond to try and help me. Lastly, I found hope in the surgery I had one year ago where endo was cauterized and excised. I seen major changes since then and got my quality of life back.
What do you think healthcare for endometriosis in Canada should look like?
Well for one, doctors need to actually listen to their patients rather than dismissing them and play a more active role in finding them a diagnosis. I was sent home with no answers I don’t know how many times. I’ve been told I have constipation, IBS, possible appendicitis, possible UTI’s, and fibromyalgia when all along I had endometriosis spreading through my pelvis. We also need MORE specialists. We just reached 1 million people in our province recently and NO EXCISION SPECIALIST exists here. That is mind-blowing to me when we are dealing with a condition that affects 1 in 10 people. We need active pelvic floor physio clinics that are covered by the government. I luckily get coverage through work however if I want to go once or twice per month, I can only do that for half the year then have to pay $100 per session out of pocket. This is not realistic. We need people to be educated on this topic. My bestfriend just graduated from pharmacy and she said they don’t even learn about this condition. I had a GI specialist say to me once “endometriosis has something to do with your period right?” I had a nurse tell me to get pregnant and it’ll go away. My family doctor told me I needed antidepressants because she thought I was crazy. There is so much misinformation and lack of education around this condition, it’s truly sad. Patients should never have to explain their condition to a licensed health care professional.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
People need to know what endometriosis is and understand the impact it can have on a person’s quality of life! They need to know it is very different from a “painful period” and that it can spread throughout the body causing an array of symptoms. This is something people may not experience themselves however their loved ones may experience it and trust me when they do, they will want to understand/help because they see the level of pain and suffering that loved one goes through.