On this episode of the GOSH Podcast, we are joined by Jessica Sutherland, a member of the Patient Research Advisory Board for the Endometriosis and Pelvic Pain Lab at UBC. She was diagnosed with endometriosis 8 years ago since joining the Advisory Board in 2017, has collaborated on 7 research projects including the development of the newly launched Sex, Pain, and Endometriosis website. During this episode, Jessica and Stephanie talk about the normalization surrounding painful periods and why treating conversations about gynecological health as taboo can be harmful to those who have periods.
Sex, Pain, & Endometriosis recently launched their website, endopain.endometriosis.org, with a goal to raise awareness of endometriosis-associated painful sex and improving care by sharing evidence-based information. You can also find them on social media @sexpainendo.
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Thanks for listening to the GOSH podcast. Gosh stands for the gynecological oncology Sharing Hub, an open space for real and evidence based discussions on gynecological cancers. We'll share the stories of guided cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers.
Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish and Sweet Tooth nations.
It is produced by the Gynecological Cancer Initiative, a province wide initiative in British Columbia, with the mission to accelerate transformative research and translational practice on the prevention detection, treatment and survivorship of gynecological cancers.
Hi I'm Nicole K. And I'm Stephanie Lam. You're listening to the gosh podcast.
Welcome back to the Gosh podcast and we're very excited today to have a very interesting episode.
Today, we're doing an episode on Endometriosis so endometriosis to give folks a bit of a background on what it is a condition that affects approximately one in 10 people. It occurs when tissue's, similar to the tissue that grows on the inside of the uterus, called the endometrium, grows on other parts of the body.
Often it grows on the lining of the abdomen, but it can also be present on the uterus, ovaries, bladder, or colon. It's a very painful condition characterized by painful periods, painful bowel movement, painful sex and chronic pelvic pain.
So recently researchers have been very curious about whether or not there is a link between endometriosis and ovarian cancer. So Doctor Paul young doctor Michael Ann Glacio and Doctor David Huntsman partnership through the GCI has found that endometriosis and ovarian cancer actually share very similar gene mutations even though endometriosis is non-cancerous.
So this could actually l to a lot of future opportunities for new targeted treatments of endometriosis and for a better understanding of certain types of ovarian cancers.
So as we know, paying attention to symptoms and seeking the support of a healthcare provider is essential since endometriosis is actually quite common, but many may not know the symptoms or how to advocate for appropriate care.
For example, more than 50% of people with endometriosis experience pain during or after sex. However, many people don't know that painful sex can be a symptom of endometriosis. So from September 4th to November 7th, 2021, the UBC Endometriosis pelvic pain laboratory in collaboration with the Endometriosis Network Canada and endometriosis.org are launching a campaign to raise awareness of the connection between painful sex and endometriosis.
And as well as introduce the new sex pain and endometriosis website dedicated to providing evidence based information on this condition so, you know, we're very lucky today to have someone who lives with endometriosis join us on the podcast.
We're joined by Jessica Sutherland who is a member of the Patient research advisory Board for the Endometriosis and Pelvic Pain Lab at UBC. She was diagnosed with endometriosis 8 years ago via laparoscopic surgery and since joining the Advisory Board in 2017 has collaborated on 7 research projects including the development of the newly launched sex Pain and Endometriosis website, so we're excited to chat about you know Jessica’s story and also learn more about the website and to see how patients can use it as a tool for their care. So thanks so much for joining us Jessica.
Well, thanks so much for having me today.
So you know, before we jump into it, we thought we would like to do a bit of an icebreaker so you know these are just three kind of rapid fire questions you know, just answer the first thing that comes to mind.
So you know the first one that we have for you is what is your caffeinated beverage of choice?
I actually funny enough, I can't drink caffeine. It makes me feel like my heart starts to palpitate. I get really emotionally worked up up and I start to cry and it's not a good scene. I used to wake up really really early for work and I would drink coffee to get me through it and I would just spend the 1st hour of my shift crying so it wasn't a good situation, I do not do caffeine.
Well, that's good to know. Do you have a beverage of choice that's not caffeinated?
I'm really into sparkling waters at their moments.
I want to get one of those systems where you make your own at home so I don't have to keep buying those cans, but they're so great for on the go and just really refreshing.
Yeah yeah, yeah. I used to drink a lot of those. Because they were a little bit like they're a little bit like sodas, so you doesn't feel like water. So I totally feel you.
OK, the second question. What is the best book you've ever read?
Do you have any recommendations?
Oh my gosh, I was not ready for that. You know what?
Uhm, I can't remember what it's called.
It's a Robert Munsch book and it's that one that says I love you for always. I love you forever. As long as I'm living my baby you'll be and that one.
I think it's I love you forever.
My mother used to read it to me and she used to cry every time she were a crying family apparently, but she'd cry every time she'd read it to me and I never understood until I became an adult who cries at everything too.
But it's such just sweet book. I would definitely recommend it, yeah?
Oh, I love that. I guess I’ll have to check it out?
Uhm, OK, and the last question is, are you a cat person or a dog person?
Or are you neither?
So I'm definitely a cat person and my mother in law knows that if she gets me a gift with a cat or a cat related, she's golden.
But my cat, actually may come in during the podcast, so don't be alarmed if you hear meowing in the background.
Oh it's OK. Animals are welcomed on this podcast.
Oh, I love that.
Uhm, OK, so that's the end of our kind of like icebreaker session so you know, let's get into a bit about your story and a bit about the work that you've done with the pelvic endometriosis and pelvic pain lab at UBC.
So you know I kind of shared that introduced you and you were diagnosed with endometriosis several years ago, so you know, would you be able to share a little bit more about your story with endometriosis and how that process has been?
For you, yeah for sure.
So my story is a bit of a long one and it's still ongoing and it started the summer just before my 13th birthday, so I was outside. I was skipping rope and I was wearing my favorite bathing suit. It was tie dye and it's purple. It was really cute and I remember just looking down and seeing this dark liquid on the concrete, and I thought that was strange.
Maybe it was oil from a car, so I kept skipping and then I realized it was running down my leg and it was blood and it was coming from me and I didn't know what to do because my immediate thought was I’m going to die I'm dying. I'm going to die.
And I mean, though, we didn't really talk about it. I kind of knew that most of my friends were already menstruating. There was an assembly with this amazing, amazing educator, Meg hickling. I don't know if you've probably heard of her. She's big in the BC education community.
And I I knew what a period was, but I didn't really connect it to what was happening with me.And eventually I learned that this gnawing feeling inside me.
I wasn't dying, but it wasn't really a great start and it seemed like for years every single period I had it was worse, was heavier. It was more painful. And really, everyone says that periods hurt, so I thought that that's completely normal. What was happening there but what wasn't normal?
I thought was that there was pain outside of my period, so I wasn't menstrual. And I would get what is commonly known as the endo belly in the community. So basically you look like you're in a full term pregnancy but you're not pregnant. You're just really and it's painful and it's just a massive amount of bloating. And I thought it was gastrointestinal doctors, though it was gastrointestinal and even with painkillers it was really hard to get through the school day and I regularly felt like passing out.
I then spent the next 15 years or so in and out of doctors offices. In the emergency room as well, they did blood tests. MRI's ultrasound. I saw so many specialists and different complementary practitioners. And no one really knew what was wrong with me, although it was quite clear that something was, uh, appendicitis and IBS were really the most common diagnosis, and I. I mean, if someone now said you have appendicitis, I would probably laugh at them because of how many times I was told I likely had appendicitis.
And I really hadn't even heard of endometriosis until I went to a walk in clinic and I sort of said to the doctor, Oh yeah, my period is really bad today and she asked me more questions about it. We talked about it for a few moments and she asked, have you ever thought if you might have any endometriosis?
I said what's that? So, she went through the classic hallmark symptoms that you talked about earlier, and I pretty much had every single one. And so she during that visit she referred me to the Center for pelvic pain and endometriosis at BC Women's Hospital.
And within a few months I saw a specialist. And within the year I went from basically feeling hopeless and not knowing what was causing all my pain to having surgery, a diagnosis and we worked together to make a treatment plan and I felt for the first time ever some relief.
So that was how I sort of got into the endo world. And then I didn't really do anything as far as advocacy or getting the research community.
I just was like, OK, I feel a little better. I'm I'm kind of done and then I didn't feel better anymore.
And so in 2017 it just so happened that the World Congress on endometriosis was in Vancouver. They did have a session called empowering patients and the role of allied health care. And it was free, so they were giving information about endometriosis, complimentary care, mindfulness, advocacy and I attended, and it was a great session, and afterwards they had this one of those meet and greets where you go around and you talk to different people.
And I ended up at one of those standing awkward. You know, the you know. The ones you're sending these tables and they don't have chairs and you have your little plate with food. And I was standing with two other people and they happen to also be endometriosis patients and I never met another person in my life who also had endometriosis.
So we started to chatting and we we all kind of realized that there was very little we could all eat because most of the food was very inflammatory.
So it's kind kind of ironic that you have this thing for patients and no one can. None of the patients can eat the food. But up walks is the research manager for the UBC endometriosis and pelvic Pain lab, and she says, hey, we're doing this. we're starting this new thing. It's a patient Advisory Board. We don't really know where it's going to go, but would you all be interested? And of course we all said yes.
And then a few months later, we had our first meeting. And I didn't really know what to expect at all, and I'm not sure they did either. But Doctor Paul Young was there and he had a summary of the study. Actually, we're talking about earlier about endometriosis in relation to genetic mutations and ovarian cancer, and he presented to us with an article from the Vancouver Sun that been published about it as well, and we read through it all kind of in silence and he asked one simple question is this research that you would be interested in seeing more of and we of course we all said yes.
And then he asked if the summary was really easy to understand. We all said no. So a lot has definitely changed in the four years since then, but I'm here today and I can definitely say that becoming involved in endometriosis research.
I've also become much more open to talking about my experience, and that's been really freeing.
Yeah, wow, that's so amazing. Thank you so much for sharing.
And I definitely resonate when you say you know. Is this somewhat easy to read?
Most of her things are not easy to read on the 1st go. So it's definitely a challenge for researchers.
But thank you so much for sharing your story and I think that there are, you know so many things that come up for me, even as I'm listening to you, sharing, you know? The nuances of being a woman and you know you know the concept that, oh, like all periods are painful or like you know, you're just supposed to deal with a bit of pain every once in a while every month, really and and I see that often so much you know on this podcast, we talked to a lot of gynecological cancer patients. And we talk a lot about patient advocacy and how you know, as women or as females. Uhm, you know we're. We know our bodies very well. We can understand what's going on, but the. There is such A need to be able to advocate and to be able to, you know, go through all of those processes to see a health care provider to understand what is going on, and I think that's just unfortunately this the system the healthcare system has just been built on that. And so it's really amazing that you've been able to find a health care provider who was able to point you in the right direction and to help you get that diagnosis. And to develop the treatment plan.
So yeah, I think there's definitely so many parallels here and you know, we talk a lot about guiding cancers and you know everything that happens in that downstairs region.
You know, it's like a little taboo. It's a little bit difficult to talk about and and you know there that that is in both the case of endometriosis, I'm sure, but also in gynae cancers, so you know.
What are your thoughts on you know why it's so difficult for you know people to talk about things that are happening in that downstairs region?
Oh my gosh, this is such a complex and important subject.
It's a really great question.
I know that like historical silence surrounding gynecological health, sexual health. And it's really taboo isn't it, right? And there's so much stigma against talking about it.
I know I've definitely experienced from certain quarters, some a little bit of social backlash people feeling uncomfortable if I bring it up. And with any topic that's branded taboo.
It I feel like it really relates to power dynamics. So who speaks and who's silent? Who's talking about this on a surface level like people don't talk about gynecological issues or sexual health because it makes them feel uncomfortable. It's like this big secret and we feel so shameful. Or embarrassed, like we don't even know what our downstairs looks like necessarily.
We're not taught to do that, but the question is why?
And it's really. It feels like this. It's like this intersection between the sexualization of the woman body or just of all bodies specifically the genitals, the reproductive system, and then how we're socialized to have this moralistic interpretation of sex and sexuality.
So, like you look at different cultures, different historical periods and there's so many traditions related to menses. It's unclean it dangerous. I mean not to talk about my period all the time, but when I first got my period even though I thought I was facing like an imminent demise, I was going to die right away. I didn't tell my mother for almost 24 hours. I just felt so ashamed and looking at it now, it's like OK, why didn't I tell her because of where the blood was coming from?
If I cut my finger or I scraped my knee. I would go immediately to her and say mom put a band aid on this. You can't the band aid on your vagina, which is kind of OK.
The word vagina I was I was looking at vaginas the other day. Yeah word vagina in relation to power, do you know the where the word came from?
So originally vagina comes from a Latin word, tanid sheep or scabbard. So somewhere where you put a sword. So inherent within the word vagina is this penetration metaphor.
And it's interesting because for years I normalized my own pain during sex during penetration and I hadn't brought it up during a doctor's appointment, yeah. Or even really thought it was abnormal.
So I feel like that can result in so many barriers to seeking care to receiving care. Maybe if I'd brought it up maybe I would have been diagnosed or had care a lot earlier.
Mm-hmm Oh my gosh, that's a really I don't even have a word for that. It's it's very shocking, I had no idea that that's kind of the origin of the word vagina, and you're absolutely right.
And I mean sharing a bit about my experience too. You know, even as a kid, you know. I mean, even now to be honest, like we when I'm you know when you have a period and you need to go to the washroom. You need to like change your your your pad or your tampon. It's still like a very uh let me secretly put this in my pocket so that no one can see you know what I'm about to do and stuff like that.
But it's true that. You know this is a a natural bodily function, and half of the world population goes through it, but it's still very, very taboo, so it's very interesting that you bring up all these power dynamics and power structures into it, and I think it absolutely brings the importance of something like the sex pain and endometriosis website. That you folks have created and are launching ver the next couple months, weeks and months so you know can you tell me a little bit more about that website?
You know how did it come about? What was that process like and you know, especially as a patient partner in all of this?
Oh, like absolutely so.
As I was talking about like that first meeting with Doctor Young and Heather Noga, the research manager was there as well as well as the patient partners. We've definitely grown as a group, so we started out as three patient partners. Now we're nine and it's really. It's really awesome how equal and respected we all I need not to necessarily speak for the other members, but when I've talked to them separately, they've all said the same words of we feel like equals when we're coming to the table with a group of doctors.
It feels like our opinions are valued and our lived experience is such an important thing that keeps this research going that really. We we can I feel like I can go into a meeting where a researcher is saying, hey, here's this idea. What do you think of it?
And I can say, hey, that's great, but what if we did it this way and be like, oh, that's a great idea.
But one of my favorite elements of patient oriented research is this big knowledge translation component, right? So you do this great research. You have all this information.
And now what?
With that summary, it was really hard to understand. There's a lot of jargon. And then getting that information out there. So the big thing of the website is. There is this info. It's evidence based and it could be useful to people talk when we were all having big discussions. All of us had a resounding yes. This is such a useful thing that should exist when doesn't already exist.
And then you. Go OK. We think there's a need. We need to get out there, but there's this big catch of how do we get it out?
There and it has to be accessible and it has to be approachable. And that's a large portion of what spurred the creation of the sex pain endometriosis. Yes, to raise awareness that painful sex associated with endometriosis is a thing that affects like 50% of people who have endometriosis.
So you'd say like 5% of the population then have painful sex related to endometriosis.
And that's so gig, but also to provide a trustworthy source for knowledge so you can improve care.
Because like, I mean, you know there's so much information out on the Internet? You Google endometriosis, painful sex and you're going to get so many different opinions. So many different articles. Yeah, things that are wrong, like advice that could be harmful and you really can't say OK, this is a good thing. You can just try them. What if everything was in one place and you didn't have to sift through it.
It's so important about accessibility of all the evidence based information and something that I think researchers are always striving to do and your your comment makes me think about another one of our patient partners who talks about how she went to Facebook groups to get her information.
Is there like similar Facebook groups or like similar communities for endometriosis patients?
Oh yeah, definitely. There is endometriosis BC. There is endometriosis network Canada. They're both great.
There are and then you can look abroad there is endometriosis, New Zealand and Australia. They're doing awesome work.
There is, oh, gosh, like. You pick a country. There's going to be a big association, but if you're looking at Facebook, there's tons of groups.
There's local ones. There's one further field.
Yeah yeah yeah, no that's amazing. I mean that that's like another one really important resource, right?
But you know to have something that's coming from a researchers perspective that is evidence based.
That is, providing all of the timely information to patients in one spot is definitely so important and very much needed, so I'm curious. You know what was the process of developing and launching the website like.
How did you folks think about what type of information was needed to go onto the website?
Oh gosh, so.
I'm assuming there was a long process.
I thought it would be just. A one meeting where people come in and they say OK, patient partners what should be put on here and we'd say something and be like OK and make out a website and then it be done.
And it took a lot longer than that. It was way more intensive than I ever thought it would be.
So the website itself was developed as part of a research project for the CIHR, so the Canadian Institutes of Health Research and his creation really was a collaborative effort between help, different health professionals and patients. And then we're also grateful to have the Endometriosis Network Canada and endometriosis.org on board as well.
And then you will see within the website there are nested a series of videos that we did and it was from funding from the UBC Public Scholars Initiative and then also to plug those after listening to this podcast, some may recognize the voice on the videos.
So that was a really fun project that we had these videos as well and we wanted to get them out there, but the development? It was really great. We worked with Tactica. They were really lovely. The developers we worked with had never heard of endometriosis, but they were super willing to learn. And they were really receptive to our feedback and we had multiple multiple meetings and beta testing and just checking to make sure and we're continually updating it, so that's the awesome thing about a website like this.
Is that you don't just put it out there and then don't touch it again if you're trying to provide accurate information to people that can be useful you have to update it with current information, so that's one of these things.
When you develop something you put out into the world, you can't just say OK bye it's well thing that you have to grow and as you learn more. Yeah, yeah yeah yeah no, that's so true.
I mean, website development is never. A straightforward process.
No, and one of the things we really, really wanted when we were developing the site is that it was visually accessible, so there's not a lot of color on color text in the body of the website, and then that it had inclusive imagery and wording often, traditionally, words used to describe endometriosis you use the term woman, but it's not including people who currently have uteruses? But that's not how they identify or they use to have resources.
So using the term people or I've seen online friendos really enjoy that one.
I love that.
So, it's definitely including people who might otherwise in say they go to a waiting room and it's all pink, yeah? And it's talking about pregnancy and things that you might not necessarily relate to? It’s really good to be inclusive of really as many people that are in this endo community as possible because it's not just cis white women.
Yeah yeah yeah, no, that's such an important point and and a very important point for researchers and clinical care providers moving forward is to make sure that you know all information is inclusive. As you know, sensitive to the different experiences of different patients. So yeah, that's you know amazing that the website has been able to really prioritize those concepts as key components of the website so you know, Jessica, I'm I'm curious.
What is your hope for the future of you know endometriosis awareness or like knowledge translation related to endometriosis. You know you folks have created this amazing website. You know, where do you hope that you know what to? You hope that the website would be able to help spark in the future, in terms of knowledge, translation of the amazing research that's happening in Doctor Paul Young's lab.
I think in a larger way, I would hope that people would feel more comfortable talking about endometriosis and sexual health and gynecological health.
And that we're conditioned to feel that these things are less important. This site is a resource that I wish I'd had when I first started having sex and I didn't know that there was a word for deep pain I experienced during penetration, which is dyspareunia. It's kind of tricky to pronounce, but And and even that, this is something that it could be changed.
I feel like if this had existed when I was a teenager. My care would have been improved. I would have been potentially able to say hey, this is me. I see myself in this and these are things I can talk to. Uh, medical professionals about. And I feel like even one person, their life is improved. By reading this website by interacting with the information with resources that are on it. Then we've done our job, but I believe it can help so many more people.
Mmm yeah, I love that.
Thank you so much for the amazing work that you've done over the last couple of years working with this group and putting out this website, it's definitely so important.
You know we always like to end our podcast episodes with a little bit of a.
You know we always like to ask our guests. You know what is one thing or one message that you would hope other endometriosis patients um would be aware of you know, one thing that you want to share to other endometriosis patients who might just be starting out their journey or who might not even really understand where they are in this journey, right?
That's a big question, I would say. You are not alone. You do not have to be silent.
And your pain is real, even if it feels like it's never ending and it can't be changed.
It's possible that it can.
Also, endometriosis doesn't just affect you, it has an impact on everyone who cares about you. So it is OK to ask for support.
Thank you, I love that makes me feel a little bit soft even when you say that. You know even as not an endometriosis patient or anyone who experiences anything like that you know, it makes me feel comforted.
Those words that you share so I think it'll also comfort a lot of other people who are going through very similar things.
Well, thank you.
I feel like it definitely applies to a lot of people like you were saying earlier.
Listen to your body.
Yeah yeah, yeah.
Even if someone saying there's nothing wrong and it's in your head.
Yeah, yeah, we we we're very intuned with our body we know what's going on and I, I think absolutely that that's such an important.
And powerful message to share.
So thank you so much, Jessica.
The very, very last question that I have for you.
Where can our listeners go to find more about this work?
Oh, of course I didn't even mention it.
So please visit endopain.endometriosis.org or you can also find us on Instagram, Facebook and Twitter at sex pain endo.
Awesome, so we'll definitely put all of those links into our show notes of this episode.
And thank you so much again for being on this podcast and sharing your story.
It's so important and so relevant to the gynecological cancer community and just the community of people who experience these types of gynecological health disorders so thank you so much and yeah.
Thanks again for having me.
Thanks for joining us on the Gosh podcast. To learn more about the Gynaecologic Cancer initiative and our podcast, make sure to check out our website at guiding cancer initiative.ca