Tag Archive for: chronic pain

Beyond the Focal Points of Endometriosis and Chronic Pelvic Pain

Author: Danielle Perro, BMSc, PhD | Editors: Romina Garcia de leon, Shayda Swann (Blog Coordinators) 

Published: September 15th, 2023

*This article represents Danielle Perro’s views and not necessarily those of her employer.

Endometriosis is a chronic inflammatory condition characterized by the growth of tissue similar to the lining of the uterus found elsewhere within the body. Though typically such tissue is found within the pelvis, it has been found in many extra-pelvic sites. It is known to impact as many as one in ten women worldwide, and though data on the experience of endometriosis in transgender men, gender diverse and non-binary folks are more limited, they too experience the condition—this represents a hugely important area of ongoing/future research. 

Similar to endometriosis, chronic pelvic pain (CPP) is highly prevalent in women, affecting as many as one in four women of reproductive age. Furthermore, females living with either endometriosis or CPP experience similarly significant physical and mental health symptoms which impact their ability to go about their day-day life. According to the Royal College of Obstetricians and Gynaecologists, CPP is defined as ‘intermittent or constant pain in the lower abdomen or pelvis of a woman of at least 6 months in duration, not occurring exclusively with menstruation or intercourse, and not associated with pregnancy’. Endometriosis and CPP share many similarities, not only in their burden and commonality, but also in how they are managed. Unfortunately, in both cases, the treatments which are targeted at the pelvis or primary disease site are often ineffective or require a lot of trial and error to arrive at a suitable option. Examining years of work into endometriosis, CPP and other localised pain conditions (like migraine and low back pain), it’s important to shift the way we think about endometriosis and CPP by looking a step beyond the pelvis at whole body pain symptoms and their implications. Similar to the MaPP research group’s work on CPP, women with CPP and endometriosis have been shown to commonly experience pain outside of the pelvis, and with an increased number of regions affected by pain, there is a strong association with worse mental health and quality of life.  

Shifting the dial away from the pelvis

Endometriosis has long been described as a gynaecological condition, given that many do experience symptoms related to the pelvis and reproduction. In addition to CPP, people with endometriosis experience pain associated with their periods and/or pain during or after sex, as well as infertility. However, a recent genetic study has demonstrated that endometriosis-related symptoms are far more complex than being just a pelvic-condition. This study showed that endometriosis is genetically linked to inflammatory conditions like asthma, as well as body-wide pain symptoms, like migraine, back pain, and multi-site chronic pain (pain all over the body). Endometriosis is associated with systemic symptoms, so why do we still ascribe a gynaecological label, rather than calling it a systemic condition? Leaders in the field have put forward a strong case for considering endometriosis as a systemic disease. More work remains to be done to understand what the public health implications, and impact on individual care, of doing so would be. 

Reconsidering our current understanding of endometriosis

Earlier this year, I attended and contributed to the Reframing Endometriosis: Power, Politics and Potential Futures conference in Birmingham, UK. This conference was the first to truly bridge the biomedical and social science research divides, whilst creating a platform for people with lived experience of endometriosis and pain to equally contribute to the panels their own experiences with the condition. Similar questions to the ones above were raised, about why we still consider endometriosis to be a ‘gynaecological condition’, when so many experience system-wide symptoms. Everyone in attendance, myself included, was confronted with moments of discomfort, as our current understandings of endometriosis were challenged. It’s become clear that in order to move the endometriosis field forward and evolve both our definition of the condition and effective treatments, we need to continue breaking down barriers between stakeholder siloes. When I envision the future of endometriosis research, I envision one which strives for personalised medicine. To achieve this, we need to consider the entire person with endometriosis and CPP, as with these conditions there is often more than meets the eye.

To learn more about this work, follow Danielle Perro on Twitter. 

Behind the Science: Racializied Women’s Physical Pain Dismissal


Interviewee: Negin Nia, B.A., M.J., University of British Columbia, Author/Editor: Romina Garcia de leon (Blog Co-coordinator).

Published: June 17th, 2022

In this week’s Behind the Science, we highlight work done by our current Blog Co-Coordinator at the Women’s Health Research Cluster (WHRC), Negin Nia. She is a recent Master’s graduate from the UBC School of Journalism who specialized in public health. Negin’s final research project in the program sought to examine the intersection between women’s physical pain, race, and treatment in North America’s hospitals and beyond.

Negin did not only complete a literature review but also released an audio documentary covering the lived experiences of racialized women. Her podcast was recently awarded the 2022 Radio Television Digital News Foundation JJ Richards Award. Read more about her project and the lived experience that drove this work. 

Can you please tell me about the work you have done during your Master of Journalism degree? 

For the last year in my program, I decided to focus my journalism specialization on health reporting. This work was driven by my lived experience but also because I believe health impacts every aspect of our lives. 

I did my final research project, which was a combination of a literature review, and an audio documentary on women’s physical pain, race and treatment. There is a lot of research that shows that women, especially racialized women, experience a heightened degree of discrimination, stigma and dismissal of their physical pain because of stereotypes and biases. This is particularly striking as women already experience more chronic pain than men. 

So, the audio documentary explores the lived experiences of many women, including my own story surrounding physical pain, race and accessing treatment across North America’s health care systems. And then the final literature review was more of a deep dive into why this is happening. It included the research in the statistics, whereas the audio documentary was more testimony with facts — they complement each other well.

What led you to pursue this work in the field of health? 

Back in 2020, I had to undergo open-heart surgery for a benign heart condition that I have had my whole life. The situation caught me by surprise because I was an outwardly healthy, 22-year-old. But I had been having a lot of heart palpitations during that year and the doctors kept telling me it was just my anxiety. 

Finally, I got referred to a cardiologist who took such great care of me and took my pain seriously. He scheduled me for an MRI, which is an uncommon test to run for my condition. Usually, it’s an echo scan. The MRI showed more than the echo scan did, that my heart condition had all of a sudden become severe with no explanation. I underwent surgery as soon as possible. 

That experience was super scary and shocking, but I have come out of it a lot stronger — it taught me so much. And just being in the hospital that week, and talking to other people who have been dealing with chronic health issues, really opened up my eyes to the disproportionate dismissal that women, people of color, and non-binary folk face in the healthcare system. 

Do you incorporate the knowledge you gained from your undergraduate degree into what you do now? 

I did my undergraduate degree at UBC in political science and law, and it taught me how to develop my writing skills. I also focused a lot on health policy during my degree. I originally wanted to become a lawyer, but after I started writing for the school newspaper, I realized that I love writing and journalism. 

That degree equipped me for a lot of what I’m doing now in my work at the WHRC, and it also gave me the skills to pursue my master’s degree and the work that has come from it. 

What are your next steps, and long-term goals? 

I’m very interested in pursuing work that’s meaningful, similar to what I did in my podcast. I enjoyed the aspect of sharing stories and highlighting the voices of marginalized and racialized groups — which is my passion. I think that it’s really important to do something you’re passionate about because it shines through your work. 

I’m also currently working at the Women’s Health Research cluster as a Blog Co-Coordinator, which has been amazing because it’s so enriching. Every week when we post blogs, there’s a new topic and I’m constantly learning about women’s health issues and people doing amazing work in the health field. 

How can people reach you and know more about your work?

My Twitter handle is @_neginnia. My podcast is titled “Let’s Talk About: Women’s Physical Pain, Race & Treatment,” and you can find it on Spotify.