What are your endometriosis symptoms like?
My endo symptoms are debilitating at times (usually during my 5 to 7 day long period). The pain in my pelvic area is worse on the left side—sometimes I can pin-point the pain to an area the size of my fist, but usually the pain radiates through my whole pelvis, hips and lower back. I often feel agonizing pain (10/10) when passing blood clots (the size of my thumb)—feeling it slowly travel from my uterus to the outside of my vagina (with lots of blood!) Other symptoms include pain during sex. Every.single.time. I experience orgasm, the pleasure is immediately followed by cramping and pelvic pain which lasts anywhere from about 30 mins to 4 hours. I have also had to end sex because the penetration is unbearably painful. Having a bowel movement is very painful as well. I have also developed full body chronic pain/nervous-system sensitization (which may have started winding-up with my endo).
What was your journey to diagnosis like?
My family doctor dismissed my pain for 2-3 years saying everyone experiences cramping. I tried to tell him that there was “no way this is normal!”. As a teenager I started to need to visit the emergency department for pain management during menstruation. I was diagnosed by an Emergency Physician who sent me to a surgeon for my first surgery. Later I received wonderful care (and a second surgery) at the Centre for Pelvic Pain & Endometriosis.
What has your experience with treatment for endometriosis been?
The treatments that decreased my pain the most (though not nearly completely) were laproscopic and transvaginal surgeries. But having surgery takes a big toll on the body and recovery is rather painful. My symptoms decreased a bit more in my 30’s when I had an IUD inserted and started hormone (birth control) therapy. My greatest struggle with the treatment of endometriosis was around receiving pain management (often needing to visit the hospital emergency dept. during periods because my GP was hesitant to prescribe narcotics.) There needs to be more research around safe, cautious, and informed use of opioids in the long term care of endo. Perhaps if my nervous system didn’t have to endure such horrid pain every month I would not have developed a complex chronic pain syndrome (which now has stolen my career and effects me every moment of every day).
How does endometriosis affect your day-to-day life?
Growing up I felt incredibly isolated and misunderstood. I hated being so unreliable (often canceling events or not attending family, school, work functions if I started my period). Receiving a formal diagnosis of endo, after laproscopic surgery, was a relief more than anything else. I knew since my first period that what I was experiencing was abnormally severe pain and having a doctor finally validate that was a pivotal moment.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I was told in my early 20s to get pregnant as soon as possible because of the risk of infertility. By my early 30s I was being encouraged to have a hysterectomy– a drastic measure but one that would likely alleviate many of my symptoms. I have endured the monthly visit of extra pain for almost another decade in hopes that I will one day carry my own baby. It is, however, unlikely I will be able to conceive.
What do you think healthcare for endometriosis in Canada should look like?
Healthcare delivery to Canadians living with endometriosis requires infinite strengthening. From increased research to education of physicians, nurses, etc. In my experience we need to immediately address stigma within the Healthcare system. As an endo patient I have experienced judgmental and skeptical ‘interactions’ (certainly not “care”) with health care professionals countless times. I have had doctors completely dismiss my diagnosis and have been made to feel, by nurses and docs, that I was exaggerating the severity of my pain and symptoms. The system also needs to recognize the psychological effects that endometriosis can have on women.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis is a serious and life-altering medical condition. It is SO much more than ‘painful periods’ or ‘bad cramps’. Endo is not “just a Women’s issue”. The degree to which endometriosis effects those with a uterus is very significant! Endometriosis should be recognized as a global issue that impacts not only quality of life but also the sufferers’ participation in society– endo leads to missed days of work and school, social withdrawl, and hours and days spent curled up in bed. Everyone (and people of all gender identities) should consider funding for endo research and treatment (and hopefully one day, prevention) a national priority!
We must also fight for equality in endo care and treatment. Some women in ours and other countries cannot even afford pads and tampons. There’s no way they’re getting near adequate treatment or even diagnosis of endo. As a society, we need to de-stigmatize conversations about menstruation in general and especially talking about painful periods, pelvic pain, and pain during sex. We also need to support those who face reproductive struggles secondary to endometriosis. I would like to advocate that BC’s provincial government follow other Canadian Provinces and start funding treatments like IVF for those with endometriosis.
And that, federally, we work towards developing an “Endometriosis Strategy”. Finally, we need to make research findings more accessible. Knowledge translation and mobilization for the general public (particularly for young teenagers) is critical!! Social media should continue to be a space for spreading awareness but, globally, we need to recognize that now every person has computer access! Consideration of diversity is also critical. In a multi-cultural country such as Canada, we need to ensure evidence-based, culturally-sensitive strategies for connecting individuals of various ethnocultural groups, religious groups, communities ect. with education, support, resources, and treatment. It is important to be intentionally inclusive when, for example, recruiting research participants for qualitative studies to make sure findings include a wide array of perspectives.