What are your endometriosis symptoms like? The symptoms evolved throughout time but have mainly remained similar. When I was a teenager, I had really bad cramps most first days of my period. They were so painful, I would be kicking and screaming crying for about 30 minutes until it faded slowly and I would slowly recuperate. I remember thinking to myself it was a good thing there weren’t any sharp objects around as I may have tried many things to stop or distract from the pain. In moments like those I wouldn’t have cared if I was naked in front of the classroom, the pain is so intense. There is a general steady pain like a pressure all around your insides. And then there is intense pain that is clearly like contractions in that they come and go slowly at first and then intensify and last longer and longer until it is constant and unbearable and then eventually they fade out the way they came. Today, as I monitor it better, I know that the intense pain for me lasts 1 to 2 hours. At 2 hours I am completely beat like I just survived a battle for my life. I always fall asleep after to recuperate. There is no possible way I could function at anything during these “attacks.” If this happens to me while I am driving, I need to pullover to the side of the road immediately. The more general pressure pain can last 1 to 3 days. It’s exhausting and makes me irritable. I have also always suffered from intense PMS which would have me emotionally enraged or break down emotionally a few days before my period started. This is hard on my interpersonal relationships. I eventually went on a contraceptive pill which may have helped attenuate the stronger pains most months but I still unpredictably had what I now call an “attack” once in a while. After changing pills once or twice and falling into a non-diagnosed depression at 21 which included loss of interest in everything, no motivation and a lethargic state of being which I emerged traumatized from, promising myself I would never take the pill again. My attacks slowly came more often and monthly symptoms became worse. Once, when I was still on the pill and was shopping for a University school project in a fabric store, the pains hit and I ended up lying on the shop floor in dirty slush from the snow, moaning and sending my friend to a drugstore to find some anti-inflammatory pills. I tried to keep quiet, as I didn’t want the sales person to panic and call an ambulance, I new the pain would end eventually. Public situations like this happened once in a while. Today things are worse. At 36 I learned to recognize my symptoms and plan my life around them. I get PMS that feels like the world is ending and I should give up on everything which lasts 1 to 3 days. Then I get a variation of a cocktail mix of strong headache, tender breasts, strong neck and back muscle pain, inflammation of the coccyx, the feeling of a rock in my stomach making walking uncomfortable, a bit of hypoglycemia and sometimes a strong pain in my shoulder and my left toe which I am convinced are all related to the inflammation of the endometrial tissue pulling on certain ligaments in my left leg which is why they intensify monthly. I also get tired and need to take naps around the beginning of my period. I also now have digestive issues half of the month. The neck and back tensions are constant but get worse premenstrually. As for the “attacks” today, they include diarrhea, nausea, vomiting, cold sweats, lying on the floor rolling from side to side moaning and crying for it to stop. I emerge with bruises, dehydrated and weak. During my last attack, I started shaking uncontrollably like some sort of panic attack. Luckily, I don’t get them every month as sometimes I seem to help avoid them by taking NSAIDs preventatively which definitely don’t help my digestion. I now suffer from heartburn. In the off months I have a lingering general pain for a few days which make life difficult but is much preferable to the attacks. Naproxen doesn’t always work though. These days, I can feel the endometrial tissues swell right after my ovulation. It feels mainly located on my left side and I feel a burning sensation from the top of my left leg to the middle of my back.
What was your journey to diagnosis like? For the longest time we suspected I had endometriosis. My mother is medical secretary and my uncle is a gynecologist in Europe. I knew about it but also knew there wasn’t much that could be done. My mom referred me to a general practitioner in the family medicine department of the hospital she worked at. I had a few appointments with her spaced out throughout a few years as a young adult until she retired. I remember her prescribing strong Naproxen and saying something like, if it works, you don’t have endometriosis. It did help a lot and somewhat worked so I went with that. Today, I question if she said something more along the lines of, we’ll try this first and if it works we’ll leave it at that which would make more sense but that’s not what my memory retained. Eventually, my good friend studied medicine and became a general practitioner. She reiterated that I definitely have endometriosis while she was studying. Once practicing, she suggested I try a hormonal treatment. By that time, I knew a bit more about the treatments but had always felt that if I managed my pain most days, it was best to avoid the various treatment options as I feared the side effects. Every option comes with risks I didn’t want to take unless absolutely necessary. At one point, I started seeing a chiropractor for coccyx inflammation pain which morphed into a shoulder pain after a few treatments. I switched to an osteopath who specialized in gynecologic osteopathy by chance. She noticed that my uterus was crooked (leaning to my left) and though she manipulated it back to the center of my body a few times, it would move back to the left between treatments. Thanks to the osteopathic treatments, I became more and more aware of my body’s wellbeing and discomforts and I started monitoring things more closely noticing the cycle of my various pains and their interconnectedness. This was in my early thirties. It has gotten quite a bit worse these past years and I recently got an appointment with a gynecologist through my friend. Half the appointment I spent convincing her I had endometriosis by describing my experiences and the other half was a discussion around having children before it’s too late. So basically I am at a point where I need to decide this ASAP as this determines if I should try the dreaded hormones. That being said, until I try to have children actively and fail, I will continue on as I have with little help for the worsening symptoms. I am assuming that after a year or so, I will get some “fertility help” and be encouraged start trying certain options. Unfortunately, fertility-wise I may not get a chance to conceive as my mother and maternal grandmother both started menopause in their late 30s. Endometriosis-wise, this is a silver lining. That is also why any drastic options may not be necessary. Meanwhile, I continue to suffer. I would also note that the thought of not having children and therefore not using my uterus after having suffered because of it my whole life is depressing. I have had about 275 periods in my life. By the time I hit menopause, I am assuming that I will have endured a full year of medium to extreme pain in my life. That is a year of my life of physical suffering (never mind the psychological suffering and trauma) and essentially time wasted.
What has your experience with treatment for endometriosis been? Personally, the only NSAID that seems to work for me is Naproxen and not the generic brand for some bizarre reason. I have to take it preventatively so a day or two before my period starts. It is useless to take it if the pain has started and I often vomit it if I take it too late. I also take a bit of CBD. It seems to help numb things a little bit or at least calm my nerves which helps manage pain and reduce stress which accentuates the pain. I use a tens unit which helps distract from the pain. It feels as though it changes how I feel or how my brain interprets the pain, which gives me a break in a way and helps me endure it. I try to eat lightly and a bit more anti-inflammatory foods before my period starts, avoid alcohol and remove my sources of stress from my thoughts. I have also tried a bit of yoga just before which may or may not help. Honestly, I just do what I can. So far, I have decided that trying to manage the pain once a month or once every couple of months is better than suffering mentally from side-effects of hormone treatments every day which could damage my relationships and my work. At this point though, I am not sure what is worse. I have also been seeing an osteopath who has been able to temporarily help with many discomforts. This person has been the one person that makes the biggest difference to me. I highly recommend one!
How does endometriosis affect your day-to-day life? By some weird luck, I have mostly suffered at moments and in situations that allowed some comfort. When in school, it mostly happened on the weekends and also on my days off from work later on. A few times, I ended up on the floor in public areas which is quite stressful and awkward. When the pain “attack” is near, I have to ensure I have quick access to a bathroom as diarrhea and vomiting may happen. I have to make sure I am not driving as well. I am lucky enough to have an understanding partner of 16 years but he still worries every time. Sex has become a bit painful in certain positions and the pain or the PMS affect my mood a lot which is hard for me and the people around me. My libido is super low too. I avoid certain social activities near my period and really try to fit some sports in just before it as it seems to help. Unfortunately, sometimes physical activity is the last thing I want to do because of back or neck pain and stiffness and/or the sensation of a heavy rock in my stomach. My mental state during PMS is another thing that needs managing. I am sure I have lost a few friendships or employees because of it. Organizing certain business meetings and other activities need to be cancelled or moved last minute due to pain as well. I run a small business so everything depends on me. For obvious reasons, this is a big problem. Keeping my employees motivated when I feel like crap or taking a nap in front of them or suffering loudly in front of them is not great. My motivation and energy levels need to be in a good place and that is a constant struggle. I also need to represent my business in person at events and I pray every time that I won’t get an attack during an event. It has happened once so far and I managed to get someone to step in. This equals added stress in my life and stops me from planning certain things ahead of time. For the past 10 years my partner and I have been travelling for surf and though I do still get attacks during these trips, I still feel better during our travels than at home. Getting a dog helped my moods and has kept me a bit more active but it’s still not enough. I am considering moving to a warmer climate to be more active and healthier to better live with my endometriosis. I feel very lucky to be my own employer. I have no idea how I would manage endometriosis as an employee trying to build a career. On the other hand, if I can’t be productive, everything I built will be lost. I also wonder how living with endometriosis will make raising a child harder. Apparently, having children could improve my symptoms but I am still waiting to see those statistics.
How does endometriosis affect your emotional well-being? I have definitely become more and more anxious when that time of month comes near. Every new or worsening symptom has me losing hope. It’s very distressing. I feel like my body is slowly “breaking” with more and more malfunctions. I fear how bad things will be in the future. Every time I think about it I break down crying. I feel like there is no real solution for me. I most likely suffer from premenstrual dysphoric disorder so my emotional well-being feels fragile. I notice more and more the days that I feel good as they are not that common. I am functional but I am afraid to break. I am so tired of managing myself through this.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I believe endometriosis has made me feel more vulnerable in life. I need more comforts and worry more about things. I feel less free. These feelings have probably affected my choices unconsciously. What it has me most worried about is starting a family. I am pressured to make a decision that may be in vain. I have been unsure about wanting children for a long time as I have been waiting to “feel” the biological clock. Unfortunately, it hasn’t come. I don’t want to regret not having a child and I always thought I would some day. I don’t want to decide I want a child, start planning and visualizing everything just to be disappointed I can’t. This is one reason making a decision is so hard. I would have liked it to come naturally but now I think I will have an up-hill battle to have one if I decide to. In another way it does force me to slow down, be mindful and take care of myself at least once a month. Who knows how it has shaped me but it definitely has.
How have you found hope and support in your endometriosis journey? I feel lucky to have people in the medical field close to me. It doesn’t give me hope though. It is comforting and distressing at the same time reading about other people’s journeys. I am glad there is more awareness, I really hope some serious investments will be made into research on the subject. I am most grateful to have an understanding, long-term partner who has supported and endured me thus far. I also have an amazing osteopath that works on me and though she has not been able to heal me, she has been able to give me a lot of physical relief from aches, pains and digestive issues.
What do you think healthcare for endometriosis in Canada should look like? Currently, I am interested in statistics for treatments. I want to know what chance any one treatment has of helping me and/or causing unwanted side-effects so I can make informed decisions for myself. Second, I would love to have access to a specialist or at least while this health problem still requires substantial research, someone who monitors me for research so we get some answers eventually. I am hoping that one day hormonal treatments will be given in customized doses according to ones optimal hormonal balance so we don’t play trial and error with someone’s mental health. I hope that awareness will ensure that employers understand that it can incapacitate people and is taken seriously. I hope we find a way to stop it from being passed on hereditarily but since it seems to be, we can probably catch it early on as well and ensure young girls have a better future.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It can be torture which would take a toll on anyone. Our healthcare system has a lot of problems and one is that it isn’t prevention oriented enough. Had I known earlier how bad endometriosis could get and that I should have taken measures to prevent its growth, had I had someone following its growth, I may have been more proactive and saved myself a couple of years of violent suffering and other consequences. I saw no examples in front of me and no one warned me early on of my potential future. Most of the information I have, I found on my own. Thank god for the internet and people speaking up about their experiences. We need research on this subject and more professionals in the field as well as awareness.