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Lenna

photo of lennaWhat are your endometriosis symptoms like? For me, endometriosis can feel as minimal as a dull ache, or as biting as a million knives shooting through my body. I had persistent pain that wrapped around my midsection like a ring, and would shoot down my legs, making it difficult to walk. I often limped. I learned to grow aware of how each of my organs was feeling and functioning; I could tell when they were inflamed, and the more inflamed they were, the more it felt like stabbing knives.

What was your journey to diagnosis like? My first awareness of endo was when I was 8 years old, because my mom was diagnosed and had a large cyst removed. When I started menstruating, and I had terrible cramps and pain, I asked my family doctor if I might have the same thing, and could they find out? He told me that “I was too young” for it, and that my issues were likely GI-related, and to keep a food journal. I spent my teenage years on prescription painkillers and obsessively tracking my food intake. In between then and when I was formally diagnosed at age 28, I experienced multiple trips to the ER from pain; I was shamed for my pain, I was told that I was faking it, I was called a liar when I said I was still a virgin (in front of my mother) because I must be having an ectopic pregnancy. I was dismissed and ridiculed over and over again. I found my support through the nurses who would take me in for ultrasounds or other tests, who would tell me that I might have a cyst that won’t show up in a test, or that I might have mittelschmerz (pain during ovulation). I passed out in the hallway at high school from pain a few times. In university, blood work showed I was pregnant while I was on hormonal birth control, but I was not (or might have had a blighted ovum, no one really knows for sure). I kept a counter-height stool at my part-time retail jobs because I couldn’t stand for a whole shift, but wanted to look like I was standing behind the counter. Between the ages of 21-28 I was placed on 3 different hormonal birth control drugs to try and manage my pain, but it would always return. I experienced repeated urinary tract infections and inflamed lymph nodes in my pelvis. My weight would fluctuate wildly, +/- 100lbs. I often wore maternity clothing to hide my swollen “endo belly” that made me look 3-5 months pregnant. When I was 27, I found the family doctor I still have today. In my first appointment, I had reached a point where I was in pain for 3 weeks of every month. Upon hearing about my 13-year struggle and family history (my maternal grandmother had uterine cancer), he said it was most likely I did have endometriosis, and referred me to an OB/GYN to confirm the diagnosis. At 28 years old, a laparoscopic procedure confirmed my endometriosis diagnosis. They told me it was a “mild” case (Stage 2), and performed a minor excision surgery with cauterization.

What was your experience with treatment for endometriosis been? Treatment between my first excision surgery and my final hysterectomy surgery included 4 medications (with terrible side effects), 4 different gynecologists, a GI specialist, my family practitioner, and multiple alternative therapies for pain management. Conspicuously absent during my treatment was any consultation with an endocrinologist, considering how many hormone drugs I was being prescribed, and repeated requests to be referred to one were met with resistance. After my diagnostic/first excision surgery in January 2013, I felt great! I was advised to go back on the birth control that I was on that supposedly was designed to help with endo symptoms (Alesse). For 18 months, I was pain-free for the first time since I was 14 years old. My weight was stable and I felt comfortable in my body. It was glorious. I began tracking my weight daily and any other symptoms in a period tracker. For my 30th birthday, I went shopping, and upon trying on a new skirt for work, discovered a whole bunch of extra bloat around my midsection I wasn’t aware of. Over the next 3 weeks, I gained 25lbs without any shift in diet or exercise — this was my only clue that something was off, at the time I did not have any pain. I returned to my family doctor for a renewed referral back to the gynecologist. I began bleeding ongoing, and bled for 3 months straight in the fall of 2014. Upon a physical examination, the gynecologist confirmed I had pain in the same locations he had performed my excision 2 years earlier, and that the endo had likely returned. I requested a hysterectomy and was told that I was too young, but if my husband agreed, it would be considered. Even after my husband confirmed our family plan was adoption (should kids be something we wanted), a hysterectomy was denied. I was prescribed Visanne as treatment (a progestin drug that was designed for endometriosis treatment, and was fairly new at the time), and scheduled for a follow-up laparoscopic surgery where he would perform an excision with laser treatment. The relief I received from the laser excision did not last long — about 6 months. The side effects I experienced from the Visanne were severe, despite the fact that it stopped my period. I have always had low blood pressure, but it was dropping further, and I was fainting often. I had significant GI issues that I believed were due to the medication, but my gynecologist said they were unrelated to the drugs, that I was likely experiencing distress due to being obese (I was 165lbs and a size 10, hardly obese), and that I should consult a GI specialist and diet and exercise. The only thing that multiple GI-related tests were able to tell me was that I had a ‘kink’ in my intestines from excision-related scar tissue. I was advised to continue taking the Visanne because I was afraid of having my period (and thus my endo) return, but I began to add supplements to improve my bowel function. In the fall of 2016, a supply chain issue delayed my Visanne refill, and within 1 week I felt immensely better… I returned to my family doctor and demanded a referral to a new gynecologist to review my case. Upon seeing the new gynecologist, I again requested a hysterectomy. She advised that as a general rule, doctors prefer to not perform that on someone as young as me (I was 32 at this point). She prescribed Lolo (Lo Loestrin Fe — another progestin drug), which was milder than Visanne that she hoped would ease my side effects. The Lolo suppressed my period and helped my pain reduce to a dull ache with pain only occurring during urination, defecation, or sexual activity, and in all 3 cases, only in certain positions. After about 4 months, my GI symptoms returned, but not as severe as when I was on Visanne. It wasn’t great, but it was manageable. This worked for about 14 months before my period returned, and I began vomiting when ovulation occurred. During this time, I consulted with a variety of alternative medicine options to help with side effects — naturopathy, osteopathy, massage therapy to help ease my persistent lower back pain, acupuncture. I avoided taking additional medication for pain, choosing to manage my pain through caster oil with heat compress, or herbal remedies such as organic raspberry leaf tea to reduce inflammation. I learned how to live with my chronic condition. Trying to get back in to see the doctor who prescribed my Lolo was difficult as she had a long wait list, but I was growing desperate for a new solution. My family doctor referred me to 3 different gynecologists to see who could get me in first. I saw a new doctor, who was young with a new practice. She immediately agreed that I sounded like a good candidate for hysterectomy, and I cried with relief. She asked me if I had ever been referred to any of the endometriosis specialists and I had never heard that such a thing even existed. She transferred me to the care of a endometriosis specialist. She placed me on her OR waitlist immediately, and I was overjoyed. Upon suspicion that I might have been reacting negatively to the progestins, I was placed on a drug called Orilissa, which was an estrogen receptor blocker rather than synthetic hormones. I felt decent on the Orilissa, which also suppressed my period. My pain subsided to a dull ache and I was mostly functional. After 8 months, my period — and my pain — returned. My turn for surgery hadn’t come up yet, so my specialist prescribed Lupron injections to further confirm that a hysterectomy would take away my pain. This came with some add-back therapy, which seemed to be causing me similar side effects to the Visanne and Lolo. I stopped taking them on my own, and my specialist supported this while being mindful of not keeping me on Lupron alone for too long. The Lupron did not affect me the way I have heard it’s affected others — I did not experience menopause symptoms, but this may be because I had already had my In February 2021, at 36 years old, my specialist performed my hysterectomy. It was an emotional moment for me, I had waited for so long, and the team was fantastic. She found that my left ovary was attached to my bowels. There was a lot of endo growth, which surprised me based on all of the medications I had been prescribed since my last excision surgery. There was also endo along my bladder, which would explain why I had been feeling needles in my bladder since late 2015. I did not require painkillers post-surgery, which confused the nurses — I joked that I was in more pain the previous weekend than I was post-op. I was walking and felt fine after 4 days. As I write this, I am 12 days post-op and I keep forgetting that I am supposed to be taking it easy for 5 more weeks because I feel the best I have ever felt in my entire adult life. I will be forever grateful to my specialist and her team for helping me finally be able to live my life. 💕

How does endometriosis affect your day-to-day life? My quality of life has greatly suffered throughout the last 25 years. All I was ever told was that the goal in my treatment was to create “improved quality of life” for me, but to be honest, I’m not sure who the “quality of life” was for. I repeated asked to have my uterus removed, but was told that I must keep it in case my husband wanted children or I changed my mind — despite my husband agreeing, and my insistence that I have a phobia of pregnancy (I am tokophobic). I don’t know what part of my hair falling out was better quality of life. Having my blood pressure drop at random intervals so I fell down stairs, shattered glass on myself, had my driver’s license taken away? Not being able to keep my food down, especially when it came as a surprise? Not being able to sit on a toilet to poop properly because of damage to my intestines? I had to drop down to part-time work while the bread winner for my family but did not qualify for disability, and was continuously told that I was making my side effects up. I’ve lost multiple jobs due to my illness, I’m sure. The first time you are told there is a restructure and you are no longer needed while having a great performance review seems plausible the first time, but after the fourth time around, it starts to become suspiciously familiar. I lost my medical benefits, but then was turned down from private insurance because my medications were too expensive. Government-funded drug coverage helped with my prescription medications, but did not help financially with any of the alternative treatments I relied on to manage my side effects, and neither I nor my family practitioner believed in prescribing medication to treat the side effects of my medication. I often cancelled plans with others. I required work that allowed me to work from home when I needed to. Every time I got into a good exercise regimen, I would have to scale back and start at ground zero again due to pain. My endo and its treatment has affected every single aspect of my life.

How does endometriosis affect your emotional well-being? The greatest impact on my mental health was from being gaslit by the medical industry since I was 14 years old. I have been told things such as: “You’re too young to be having symptoms of the endometriosis that runs in your family; and no, we won’t test you to find out.” “Keep a food journal.” “You are lying about being a virgin and must be having an ectopic pregnancy” (in front of my mom at the ER when I was in high school). “Your side effects are all in your head.” “Your side effects have nothing to do with the hormone drugs, go see another doctor.” “You are OBESE and just need to exercise more.” “Your husband needs to come and talk about your family planning before we can talk about a hysterectomy” (and when my husband did come in to say if we would have kids, we would adopt, we still could not talk about a hysterectomy). As such, I have spent a considerable amount of my time in therapy talking about my uterus and the ways that it impacts my sense of self. I lost my emotional capacity to handle anything related to managing my endo, and created rituals to manage my pain, and kept my own meticulous data records so that if a doctor questioned my experience, I could feel confident in my knowledge. I took photos when my body would bloat and deflate. As someone who identifies as genderqueer, being subjected to treatment to keep my uterus to have babies I knew I would never, ever have really messed up my sense of self. I had trouble identifying with endo support and treatment. When I was in pain, it began to make me angry. It affected my mental health in a way that made me hate everyone for no reason. The pain took away my libido, it made me adverse to touch. I wanted to be social, but ultimately deciding to hide in my bed was the opposite. It became the only part of my body that I hated, my organs, the pain. It’s the only part of me that I could not accept the way it was, because I knew it could be fixed. There was a solution, and like magic I knew it could all go away. Any glimmer of hope that I might have my uterus removed, and thus an end to the never-ending drama my endo inflicted on my life, would overwhelm me to tears. And once my hysterectomy was scheduled, any hint that it would get delayed or cancelled caused panic attacks. Getting a hysterectomy during COVID time was especially stressful. Once I had a date, I meticulously planned my care to ensure that I would not miss the date. It is somatic therapy that has provided me the most relief and release of emotion related to all of this.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I have had to make all of my major life decisions based around knowing that my health and energy were inconsistent. Since 2013 (when I had my first excision surgery), I thought about adoption, but I knew I would never pass the medical portion of adoption readiness. I chose jobs based on which ones would allow me to work from home, and even when I was allowed to work from home or had unlimited sick days, I was still told that I had to come to the office. My health made it difficult to support my husband, who had a major mental illness diagnosis. We eventually separated, and while I originally did not think that my endo had much to do with that, two years later I can now recognize two things: that he suffered more when I was in pain, and that the way the hormonal drug treatments affected my moods and sense of self likely contributed to some of our struggles. It is only in the last few months that I’ve come to recognize how my hormonal state affected my emotional coping mechanisms and emotional decision making abilities. Almost all of those medications came with a warning about depression and suicidal ideation, and while I didn’t have that, I became aware that my sense of self detached with any synthetic estrogen or add-back therapies. Having never, ever been sent to an endocrinologist, no one knows what my hormonal baseline actually is, but empirically, I believe that my body is in its top form both physically and mentally with minimal-to-no estrogen inside of it. This year, I have finally taken the steps to be accepted to the foster parent training program; however, I was advised that I would not qualify for placement until I was post-surgery, since at any moment, I could become incapacitated. Luckily I am in a place where I can now receive a clean bill of health. I have also applied to return to school in the trades, which could never, ever have been a possibility while I was treating endo.

How have you found hope and support in your endometriosis journey? My employers who allowed me a flexible in-office / work-from-home accommodation were always so appreciated. I only had 2 employers who were truly accommodating and supportive. My current family doctor has also been so supportive, always referring me out as much as he was able to, supporting my exploration of alternative/natural treatment for side effects, and providing as much information as he could as a general practitioner. The team at Sunnybrook has also been the best thing to ever happen to me. I wish that my family doctor was aware of this, or other endometriosis support networks, so I could have been referred directly sooner.

What do you think healthcare for endometriosis in Canada should look like? I believe that all general practitioners, psychologists, and clinics should be equipped with a basic level of information to understand that if a uterus-having person is experiencing pain, that is not normal. There is so much of our culture that confirms that period pain is normal and it is not. There seems to be a huge knowledge gap. Having access to the Endometriosis Network sooner would have helped find the right doctors or support groups. Being tested by an endocrinologist prior to the prescription of hormonal drugs should be required, where hormones regulate so much of our systems. Access to hysterectomy and doctors who are specialized in endo excision is also important. These barriers do not seem to exist for other genders looking for hormone treatment or vasectomy, which is unacceptable and inequitable.

What do you think it is important for people to know about the experience of having endometriosis in Canada? Travelling to another country might be a fast-track to pain relief, but that is a band-aid solution. Be persistent. Take action. Help our system get better so that everyone can receive the care that they need and deserve!