Hello dear friends, family, and caring strangers!
My name is Kimberly and today I’m graciously asking for your love and support for my best friend Brittany.
Brittany's battle with Endometriosis and probable Adenomyosis has turned her life upside down. At 31 years old, she has lost her independence, her blossoming career, and finds herself emotionally, physically, and financially depleted. Brittany is truly a fighter and I admire her strength and resiliency even on the worst of days.
Thank you so much to those who are able to donate, to share Brittany’s story and to just be there for her during this difficult time, it all means the world!
I will now let Brittany tell you her journey thus far as it is one hell of a roller coaster and she is the only one who can truly bring it to life!
(Beautiful drawing by my best friend and biggest supporter, Kim)
Endometriosis is a chronic inflammatory disease in which cells similar to the lining of the uterus grow on the outside of the uterus. These cells can attach to the reproductive system, can cause adhesions, gluing the organs in the pelvis together, and can attach to other organs in the pelvic and thoracic cavity, damaging those organs and their functions. Endometriosis causes extreme and chronic pain (often compared to and described as more painful than cancer!), can cause infertility and, in some cases, organ failure. People with endometriosis are also more likely to suffer from autoimmune conditions, severe allergies, and other physical disorders. Endometriosis is a whole body disease, and none of our organs and systems are left unscathed: Womxn with endometriosis can experience gut and bowel issues similar to IBS, neuropathic pain, sensitized nervous systems, overactive and tight pelvic floor muscles – which extends out to the fascia of the entire body and alters the musculoskeletal system itself! Endometriosis has no known cure and affects 1/10 womxn – this is the same amount of persons with diabetes, and yet very few people have heard of endometriosis. Some of the symptoms of endometriosis include, but aren’t limited to: intense cramps, back pain, bloating, constipation, depression, diarrhea, dysmenorrhea, excessive bleeding, fatigue, headache, heavy menstruation, infertility, leg pain, nausea, painful periods, painful intercourse, painful/frequent urination, pelvic pain, and weight gain.
Adenomyosis is referred to as “endo’s evil cousin” – essentially, it is endometriosis that is found in the muscle layers of the uterus. Unlike endometriosis, adenomyosis is curable – but at a huge cost. During my post-op follow up, my surgeon stated that if I do have adenomyosis there is nothing that can be done other than a hysterectomy because the endo is sitting there causing the muscles to contract all day every day. In itself, this condition is extremely painful and causes severe bloating/distention of the belly, daily constant cramping, and severe low back pain amongst other symptoms.
For the amount of times I’ve had to reiterate my story to my many different care providers and others in my life, you’d think I would have just written it out by now. But I haven’t. Even coming to terms with being diagnosed with this disease is still something I am working on. While sharing these pieces of my journey are extremely vulnerable for me (e.g., talking about very personal symptoms and experiences), it is also super important – not only to appeal to you for your support, but to save any other womxn from going through what I did. If caught early enough, endometriosis does much less damage on the body, mind, and soul and becomes more easily manageable lifelong. If you know anyone who experiences similar issues, please share this information with them so that they may catch and treat the disease as early as possible!
It took me 17 years from the onset of symptoms that, unfortunately, were not flagged by any of my doctors throughout my life (mine included heavy periods as of age 14, passing of blood clots, severe cramping, chronic UTIs, intestinal issues, bowel issues, frequent urination, headaches, nervous system sensitization symptoms, what felt like “gall bladder attacks” – one of which hospitalized me, severe nausea, lack of appetite, pain during intercourse, weight gain, severe bloating/stomach distention, fatigue, and leg pain). Every time I had blood work taken, everything came back as “healthy and fine.” Scans, ultrasounds, and diagnostic tests all showed that everything was “healthy” and “looked normal.” I even paid for an out of pocket MRI in June 2020, that did not show the endometriosis. I started to think I was losing my mind, all while deeply knowing that something was very wrong. Unfortunately my story is not unique – and early detection and treatment (both done through a diagnostic laparoscopic surgery) can prevent much of the chronic pain, organ failure, and infertility that undiagnosed endometriosis can cause.
In hindsight, I have had several isolated “endo flares” that could have been caught by my medical providers. One intense incident occurred in 2013 and saw me taking a few days off of work and then working through the pain that lasted a few weeks before dying down again. The ultrasounds I had done at the time came back normal. I have also almost always felt “sick” after I eat, for as long as I can remember, and thought that this was normal. In about 2018, I also began to notice strange cramping in my intestines. I also had strange bowel movements for most of my adult life that I also thought was normal.
In September of 2019 I began to experience abnormal cramping and severe low back pain, I thought this was a one off – but it wasn’t. By October 2019 I thought I had a bad UTI (but I didn’t), and began to experience days of debilitating pain where I could barely get out of bed. For weeks at a time, I could hardly walk or stand up straight and often spent up to 4 hours a day in the bath to alleviate only some of the pain. I have heat burns on my belly from the frequency of using my heating pad – as heat is the main source of pain relief for the symptoms. I was put onto many different medications – some that worked, some that put me through hell and changed me psychologically before I stopped them, and most that only ever took “the edge off” of the pain. I quickly learned that going to the ER or urgent care would get me no where, and that no matter how much I talked to doctors and my surgeon about my pain, it would be impossible to fast track my surgery. The sad reality of our healthcare system which, while I am grateful it was “free” for me to receive the treatment I did, often entails horrendously long wait times and substandard care. Because of this, I had to wait over 1 year (which is actually a lot less than some womxn waiting for surgery) in debilitating, chronic pain that is still affecting my body, mind, and soul.
Heating pad burns (some of the only visible after-effect signs of the pain):
By January 10th 2020 I was forced to put myself on a medical leave, and lost over 6 years of building up my career and caseload in a matter of minutes. Because of my status as a subcontractor I was not eligible for EI, nor was I eligible for CERB when that came out. I applied for CPP-D (a grueling process if you’ve ever gone through it), and was denied. I appealed the decision, and was denied again. Essentially, like many who struggle with endo, I was told I was not disabled enough for those benefits (nor would I be a candidate for AISH). I remained in Calgary for 1 month until my money ran out and I was forced to move back to Lethbridge to live in my parent’s basement with my two cats. I am so grateful to even have had this opportunity, and I don’t know where I’d be without my parents unconditional love and support.
In March of 2020 I was forced into bankruptcy due to the entirety of my financial situation and my inability to pay my bills. I had to withdraw my RRSP savings in order to pay the remaining bills that I could, purchase medications, and attend continuing care – this money will run out in December of this year. By June of 2020 my car had been repossessed. It wasn’t until August 2020 that I was tipped off to apply for Alberta Works “Medical Income Support”. I was approved for this benefit (although no retroactive payments were provided despite my other attempts at receiving financial support), which is only $833/month (plus $52 a month for a special diet that I finally got approval for in November 2020). I am able to pay all of my bills for the month, contribute a small amount towards groceries, and pay for only some of my therapies out of this stipend. This “support income” doesn’t come without its difficulties, as I spend a lot of time continuing to prove that I am unfit for work (I was expected to return almost immediately after surgery). The irony in this is that having a condition listed as one of the top 20 most painful conditions in the world, likened to the pain of cancer – or worse, does not seem to afford one any leeway. For example, I have had conversations with others who state that they would be hard pressed to find anyone trying to force a cancer patient who just underwent treatment to go back to work right away. But, endometriosis is an understudied, underfunded, and vastly unknown condition despite it affecting 10% of womxn; this means that almost all doctors, health professionals, and policy makers have not heard of it either, which results in a lot more work on the patient’s part to advocate for herself day in and day out.
Here I am the morning of surgery:
Now that's an IV:
I was diagnosed with stage II endometriosis (there are 4 stages and none of the stages correlate with levels of pain the individual will experience) on September 21, 2020 when I received the gold standard treatment: Laparoscopic excision of all macroscopic indications of the disease. I also received a presacral neurectomy (cutting most of the nerves to the pelvis), in an attempt to give me some relief from the uterine pain I was having as well (update: this procedure didn’t work). My surgery was 3.5 hours long and filled with good news and bad news. The good news was that no macroscopic signs of the disease were found on my diaphragm, bowels, intestines, gall bladder, ovaries, fallopian tubes (which were also tested and function normally), or uterus. The bad news was that the entire left side of my pelvis was completely involved with endometriosis, and part of the right side of my pelvis also had endometriosis. I had adhesions on both of my ureters which had matted them down onto other organs and they had to be cut free. I also had an adhesion of the top of the rectosigmoid near the pelvic brim. The worst news for me was being diagnosed with a lifelong inflammatory disease with no known cure.
Four port sites used during surgery (one is in my belly button):
Port sites healing:
I do believe that I was lucky to have the endometriosis detected when I did because it had not yet invaded my organs. I was also lucky to have been referred to a top endometriosis expert in Calgary (Dr. Rajakumar) who was on the “approved” list of good surgeons on the websites and groups I had begun to research in. My surgeon has informed me that he’s done all he can for me, for now, and that there may still be microscopic expressions that he was unable to see and remove. In addition, we did not opt for a hysterectomy just yet as we want to wait and see how I fair post-surgery and with major lifestyle changes that will hopefully improve functioning long-term and allow me to preserve my fertility. I was told to resume continuous birth control to keep estrogen levels low in my body, and that this could afford me anywhere from 2-5 years before needing another surgery. Some womxn’s struggles with endo mean multiple surgeries in a handful of years and everyone’s endo grows back at different, unpredictable rates.
While I haven’t mentioned it until now, the toll that this disease and experience has taken on my mental health cannot be understated. I struggle with depression and anxiety. I suffer from medical PTSD due to the difficult medical experiences I have had (e.g., convincing doctors there is something wrong with me, continuously advocating for gold star treatment, researching and trying different medications, and pushing to be heard and understood by different doctors). I am still grieving the loss of the life I built in Calgary living with my best childhood friend, the loss of my main support system and chosen family there, the loss of so many friendships, the loss of my partner, the loss of financial security, the loss of my career and all of the work I’d done in building it, the loss of my independence, the loss of my “able bodied functioning,” and the loss of my hopes and dreams as to where my life was headed before this happened. I still don’t know if I can or will be able to have children, which may be another loss on the horizon.
Endometriosis may continue to take more and more from me, but I will not give up. I view this as an intense breaking down and restructuring of all aspects of my life (i.e., health, mental health, money, friendships, relationships, family, dreams, and career directions). I have a long road of recovery ahead of me, but I am working hard to rebuild an entirely new life for myself. I have dubbed myself an “endo warrior” and, while I may not win all of the battles ahead, I vow to continue to fight each and every day.
WHERE YOU COME IN
The past 1.5 years of medical care and treatment has exhausted all of my savings, as well as burdened my father who is working to support both myself and my mother (who has her own health issues). While I am so relieved to finally have a name for the root cause of my problems, it’s been daunting to learn of how long and costly the road to a “normal” quality of life is; where I can take care of myself, make meals for myself, and even just have energy to do household chores (let alone getting back to working in the profession I love with a consistency that my clients will require). Basically, the surgery I had is only the first step to helping me live a normal, pain-free life for the first time in 1.5 years (not counting the other issues I experienced over the course of 17 years). I am still dealing with chronic pelvic pain and other symptoms that have, thus far, been unexplained.
Additionally, the pelvic floor physical therapy visits, acupuncture sessions, massage therapy sessions, functional medicine/nutrition sessions, and psychotherapy sessions I am attending to recover and restore my body, mind, and soul’s functioning cost at least $1300 a month (if I attend the amount needed without having to cut down due to lack of funding). Many of the medications and supplements I am using still have hefty out-of-pocket fees. For instance, I just spent $183 on a month’s worth of supplements we are trialing to reduce inflammation, ease muscle and body pain, process and eliminate estrogen effectively, and restore gut health and digestion. Since then, we have added additional supplements totaling over $85.
Because endometriosis and adenomyosis also create extra inflammation in my body, making it difficult for me to do household activities like preparing food and cleaning; my parents have often had to step up to prepare meals and clean my space for me. I am now on a strict anti-inflammatory, elimination, and autoimmune protocol diet prescribed by my functional medicine practitioner. Unfortunately, it takes a lot of time and planning to execute such a diet and the ingredients are more costly than our normal groceries (e.g., dairy free, gluten free, and lots of protein). Without my mom and dad helping me out, I wouldn’t even be able to feed myself on high pain days when I can’t get out of bed.
Your donations will be used to help me pay for continuing care with the team of various practitioners mentioned above, ongoing medical costs, costs of trips to Calgary to the Chronic Pain Center (I will be assessed mid-January and accepted into their program for 1 year), and grocery costs. Your donations will help me invest in a new future for myself (e.g., buying a car and saving up for a down payment for rent). Your donations will also alleviate financial stressors when I am unable to receive Medical Income Support in the coming months, and provide me with a buffer from the loss of income support to working both within my functional capacities and rebuilding a sustainable caseload in the career I am so passionate about (counselling). In the eventual reentrance into my career, I hope to be able to support clients who are also impacted by chronic pain, endometriosis/adenomyosis, and who are struggling with navigating our medical and social security systems.
I would like to use any proceeds in excess of my medical and living costs to donate to the Endometriosis Research Center and to help in spreading awareness about endometriosis so that no person has to go the average 8-12 years searching for a diagnosis or being told “it’s all in her head” while this disease ravages her body.
This journey has taught me that self-advocacy is essential to good health care, and to never take health for granted as mine has gotten in the way of the most basic tasks in life and has set me back immensely.
It is difficult for me to ask for help. I have been socialized by society and capitalism to forge my own way, and to take care of myself. I was lucky to be able to do so before I got sick. Now, I need your help to pay my associated medical costs, care, and costs of living. Anything you can give will be greatly appreciated and I will be forever grateful.
I am always open to questions, kind words of support, or just a little hello. If you want to learn more about endometriosis, check out the Center for Endometriosis Care at: https://centerforendo.com/ to start or contact me for more resources.
If you would like to follow my journey, you can check out my Instagram page @darknightoftheendo (I try to update it as frequently as I have the energy to).
If you or someone you know can help, I ask that you share this with them. And to whoever is reading this right now, thank you from the bottom of my heart. I am infinitely grateful for your time, your kindness, your love, and your support.
- Dwight & Tammy Lischka
- Barbara Dowie
- Tammy Seifert
- Ellenie Kibaris
- Kim Agyeman
Fundraising team: Endo Warrior Support Team (4)
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