We are so excited to meet Kim, who comes to us from British Columbia. It’s amazing to get a handle on what patients from across Canada deal with when it comes to Endometriosis and how we come together as a community. More importantly, Kim was able to capture what pain from endometriosis feels like. Kim can you introduce yourself?
Hello, My name is Kim and I identify as she/her. I am a second generation Filipino-Canadian and I live, learn, work and play in Coquitlam, BC on the unceded traditional territories of the Coast Salish Peoples of the QayQayt and Kwikwetlem First Nations. I am a third year Nursing student and in my free time, I enjoy reading, cooking, gardening, and being outdoors. Destigmatizing mental health and bringing more awareness to women’s reproductive health issues are close to my heart. Thank-you for the opportunity to share my story and for acknowledging the diverse health care needs of Canadian women.
I was diagnosed with Stage 4 Endometriosis in 2019 via emergency laparoscopy. I experienced painful menstruation from a young age. I learned that painful periods were normal because my mom and others also experienced them. As I grew older, my pain and other symptoms affected my functionality and quality of life. I missed school and work because I was in too much pain to move. I was too tired from constantly being in pain; I wasn’t able to sleep properly. My periods got heavier and I was almost anemic. Despite being active and eating a healthy diet, I started to notice that my hair was falling out, my fingernails were thinning and peeling, I bruised very easily, I was often dizzy and light-headed from changing positions, I was moody and depressed and I developed cystic acne . My concerns grew, but when I would go to the doctor, I would be told that my pain was normal and to try to “relax” or take Tylenol and Advil. This caused me to internalize my pain and I developed a tolerance, as I’m sure many who suffer from chronic conditions can relate to. It got to a point where over-the-counter painkillers did nothing for me. I developed different symptoms, got different tests done, and was even referred to a urologist. After almost twenty years of chronic pain, my body was screaming for help. After writing my first nursing midterm exam, I picked up my bag, handed my paper to my instructor, left campus, and admitted myself to emergency. I begged the ER doctor not to send me home without further assessment. Armed with half a semester’s worth of nursing knowledge, I knew enough to advocate for myself and that the way my symptoms were judged over the years were costing me my health. A simple ultrasound was enough to rush me into surgery.
“Sometimes, I imagine my insides as a damp rag that is continuously being twisted and wrung. At other times, it feels like there’s an industrial meat grinder inside, pulverizing me into bits. ”
As this is pain awareness week, can you describe what your pain feels like?
With endometriosis, cells that behave like the ones in the endometrium or uterine lining, are found outside of the uterus. When we bleed during our period, our body is getting rid of endometrial tissue. However, with endometriosis, these cells also bleed, but because these cells are located outside of the uterus, there is nowhere for the blood to go. It stays in the pelvic cavity causing inflammation and over time, can lead to adhesions and the development of scar tissue, causing increased pain and other symptoms.
I’d like to preface my description of my pain with a reminder that pain is individualized and that people with chronic issues build a tolerance to it in order to remain functional. We learn to hide it well. “Chronic” also refers to persistence and recurrence; our healing and recovery are not linear processes.
My baseline pain is a 3 or less, using a 0-10 pain scale. It occurs daily and can be sporadic, ranging from pulsing to what my specialist refers to as “chandelier pain.” At its worst, my pain has stunned me like lightning. It’s like when you get a cramp and can’t move - my entire body freezes and I experience a deep, silencing, white pain. I have bowel endo as well; it’s deep and honestly feels like a broom handle was just jammed into me, impaling me.
My pelvic pain is another story. Sometimes, I imagine my insides as a damp rag that is continuously being twisted and wrung. At other times, it feels like there’s an industrial meat grinder inside, pulverizing me into bits. Every so often, the pain feels like I’m being carved like a pumpkin, but the carving is being done by a really strong man who is holding a metal spoon with a firm grip, scraping my guts raw.
This is only a description of my physical pain. My experiences were very distressing and I’m not sure I can describe the weight of how it’s affected me. Imagine how you would feel if you were told you might have cancer because there is a grapefruit-sized mass that’s been growing inside of you all this time. Or how it would feel to be told that a symptom of your disease is infertility, and that you have the most severe stage of the disease, for which there is no cure. It makes you feel very lonely and like you don’t matter.
Kim can you give us an idea how the progression of diagnosis went for you?
I was fed the narrative that period pain is normal. I was told to identify my stressors and cope with a healthy lifestyle. When this didn’t work, Tylenol and Advil were recommended. I was prescribed anti inflammatories and used heat packs but it didn’t bring much relief. My symptoms started to branch out; I was prescribed more medications to try, had different tests done, and was even seen by a urologist. But the reason why I was experiencing symptoms was never properly assessed. Heavy bleeding, abdominal pain and dizziness can be explored in so many directions, but as soon as I brought up my period, it seemed to be enough to close the book shut and call it a day. I was minimized and dismissed. It felt like my gender was my diagnosis: you have periods because you are a woman, and because you are a woman, you are expected to have pain and worse, be quiet about it. Women’s pain is normalized and our reaction to it is considered abnormal...we’re painted with a broad brush that labels us as difficult, dramatic, attention-seeking, or hysterical. I didn’t get an answer until I brought myself to emergency and ended up alone on the table.
Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.
There hasn’t been enough research or funding for me to answer that, although there seems to be a positive relationship between the likelihood of an endo diagnosis if family members also experienced these symptoms.
What are some of the more modern medicine techniques that have worked for you?
Surgery really improved my quality of life but I’d like to stress that it’s not a cure; endo is chronic and progressive and should be approached holistically. I was referred to tertiary care at the BC Women’s Centre for Pelvic Pain and Endometriosis. The interdisciplinary approach benefited me because I finally felt safe and validated. I trialed different medications to manage my symptoms post-op. Each attempt presented side effects. My current management plan, a combination of oral and hormonal medications, is no exception, but works for now.
Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
Cannabis has brought me temporary relief mentally and physically. Avoiding certain foods has also helped, and I am exploring an anti-inflammatory diet. Endo was very distressing to my mental health. My diagnosis was very traumatic and I still struggle with events surrounding it. Counselling, therapy, EMDR, guided imagery, mindfulness, grounding, deep breathing, yoga, journaling and writing have helped. I am also exploring the concepts of narrative medicine and graphic medicine. 2 years following my diagnosis, my focus has shifted on prioritizing my mental health and self-care. Leaning on a true support system, reaching out to other women, setting boundaries, being in nature, and spending less time on social media have been restorative and healing.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
I am! Pelvic floor physio was recommended to me. I did a session and it just didn’t feel right at the time. I’m open to trying it again, as well as other therapies, but as a student, these tend to be less accessible or limiting. I’m interested in sustainable, long-term therapies.
What would you tell our readers in order to help them consider alternative therapies?
Prioritize your well-being and do what’s truly best for you. If you are interested in therapy and are met with resistance, ask questions and do research.
And lastly, what would you tell your younger self about pain management?
Pain isn’t normal. Tylenol and Advil are not enough for this. It’s not going to go away.
Anything else you want to tell our readers?
It’s ok to ask for help and it’s ok to stand up for yourself. Avoid judgy people and focus on yourself and the people who really care about you. Trust your gut if you feel something isn’t right and ask for a second opinion if you disagree. Prioritize and protect your mental health. You are deserving of health and safety. You have to live in your own body and listen to your own thoughts. Your experiences are real and you are allowed to have feelings.
Women are deserving of support, especially from each other. My view is that we all fall somewhere on a spectrum in terms of reproductive health. I fall in with women hoping to conceive one day. I’ve spoken to women who have miscarried, experienced infant loss, successfully conceived and birthed, are postpartum, women who have had hysterectomies, and others who are menopausal. What I’ve observed is that women who successfully conceive, carry, and deliver receive a lot of acute support, as they should. It’s easy to show up for that and be present. But there’s a real gap postpartum and even before pregnancy. A lot of women go through a hard time and sometimes feel the whole “it takes a village” expression falls short. For the rest of us who aren’t carrying or holding newborns, it can feel like, “where is the village? I feel that my surgery was prioritized to preserve my ovary and reproductive function due to my age. I’m grateful for it, and it’s definitely a goal, but it left me wondering how my care would be guided if it wasn’t. Why were my needs only taken seriously when it had to do with having a baby? If a pregnant woman states she has pain and abnormal bleeding, we listen and we act, rightfully so. Where is the urgency for everyone else? Why does it take an average of 10 years for women with endometriosis to receive a diagnosis? Why is there a different excuse to dismiss women at different stages of her life? (You’re too young, you’re too old). I hope other women are curious too. Ask questions and please be kind. Empathy is huge, for yourself and others. Pain, invisible illness, and mental health are tough; it sometimes feels as though you have to prove that you are sick or suffering and you shouldn’t have to. These are individualized experiences; after over 20 years of chronic pain my 3/10 pain is not the same as yours. People with chronic pain learn to push through and show up because we can’t spend our lives in bed all day. Be compassionate to others and yourself