#8 Understanding Endometriosis

Endometriosis affects 1 in 10 people with a uterus—yet it can take years to be diagnosed. Why?

In this episode of The Vulvalution, we’re joined by Dr. Paul Yong, a leading expert in pelvic pain and endometriosis, to break down what endometriosis actually is, why diagnosis is often delayed, and what treatment options look like today. We cover symptoms, sexual pain, fertility, the overlap with IBS, and bust common myths.

🎧 If you’ve ever wondered whether your pain is “normal,” this episode is for you

📚 Episode resources:
    •    Period Pain Questionnaire: https://periodpain.ca
    •    Pelvic Pain & Endometriosis: https://pelvicpainendo.ca
    •    Society of Obstetricians and Gynaecologists of Canada: https://yourperiod.ca
    •    Canadian Society for the Advancement of Gynecologic Excellence (CanSAGE): https://cansage.org
    •    The Endometriosis Network Canada: https://endometriosisnetwork.com
    •    World Endometriosis Society (WES): https://endosociety.org
Follow Paul Young’s Lab
    •    Website: https://pelvicpainendo.ca
    •    Instagram: @pelvicpainendo
Endometriosis Film Festival - Join the Endometriosis Film Festival on Saturday, October 10, 2026, at 2:00 PM PST at UBC Robson Square, Vancouver, BC. Tickets: $20
    •  Register: https://site.pheedloop.com/event/endometriosisfilmfestival/register#category
    •    Learn more: https://pelvicpainendo.ca/endometriosis-film-festival-2026/

Timestamps:
00:00 Intro 
02:48 Paul Introduction
03:38 What Is Endometriosis? 
05:02 Causes 
06:46 Risk Factors 
07:39 How Common Is It?
07:57 Symptoms
10:51 How Is It Diagnosed?
14:56 Pelvic Pain Explained
16:25 Treatment Options
23:00 Why Lesions Cause Pain
26:01 How to Manage  Pain
27:37 Sexual Pain
30:00 Managing Painful Sex (Dyspareunia)
32:00 Fertility 
34:55 Pregnancy Outcomes 
37:00 Infant Outcomes
37:40 IBS, Painful Bladder Syndrome & Endo
40:12 True or False: Endo Myths 
42:16 Your Questions
44:58 Resources & Support
46:56 Conclusion

Transcript

[00:00:00] This disease presents in so many different ways. Probably the most common symptom is painful periods. The deep subtype can en invade the bowel, can invade the bladder in, in extreme cases, so that will cause painful bowel movements. Painful voiding. Currently it's, it's about five years to get a diagnosis.

Why is it that it takes so long to get that diagnosis? What would be the first line of treatment? How common is endometriosis? Why does endometriosis often cause pain during or after sex? How does endometriosis affect fertility?

Welcome back to the Vulvalution, [00:01:00] Vulva Squad. Good to see you again, or I'm not seeing you, but like I know you're here and that feels really right. Yay. Hello people. We love you guys. We're so excited for you to hear us. Today's episode all about endometriosis, one of the most misunderstood diseases, I think ever.

Yeah. At least in women's health. And we asked a lot of questions, so you are going to like this one? Yeah. And just a little disclaimer, it starts by, we're talking about the definition of it and then it's a little scary at the beginning, but we talk about treatments and options after, so it gets better.

Yeah. And overall, I think the message is it's getting better and I think. People with endometriosis certainly know that it has been bleak historically, but it looks like people, like our guests are working really hard to change that. Yeah. All right, so let's start this episode. Yes, let's get into it.

Welcome back to another episode of the Vulvalution. Today we're diving into endometriosis, which [00:02:00] is something that we don't know much about, and we're very excited. And today we're joined with Dr. Paul Young. Dr. Paul Young is an associate professor in the Department of Obstetrics and Gynecology at the University of British Columbia.

He's also a researcher with the Woman's Health Research Institute and the principal investigator of the UBC Endometriosis and Pelvic Pain Laboratory. His clinical work focuses on caring for people with pelvic pain, with particular expertise in endometriosis, painful periods, sexual pain and pain related to bladder, bowel, and musculoskeletal conditions.

His research aims to better understand the causes of pelvic pain and ultimately improve care for people living with these conditions. So welcome to the ball evolution, Dr. Paul Young. Thanks for having me. So to start off, we wanna ask you a little bit of what drew you into this specific area of pelvic pain and endometriosis.

Yeah, so it was during residency. So at UBC there's [00:03:00] a, uh, a required rotation in endometriosis and minimally invasive surgery that everyone does, which is pretty unique in North America, I think. And so I didn't know too much about, about endometriosis until I did this rotation, and I saw it was, it was quite interesting and probably the, the most important factor were, uh, my two mentors during that rotation.

So they, they sort of took me aside and said, you should really consider. Going into this area. And then I was their first full-time fellow. And then after graduating from Fellowship, then I joined their practice. Okay. Very interesting. Well, we're glad you've been able to take the time to talk to us about a very important topic today, endometriosis.

So our first question is very broad, but I think a lot of our listener, they wanna know and we also wanna know. So what is the definition of endometriosis? Or what is it exactly? Yep. So the tissue inside the uterus or the womb called the endometrium. So cells that resemble the endometrium or we say they're endometrial, like are [00:04:00] growing, uh, basically outside of the uterus or the womb.

So it could be elsewhere on the pelvis. It could be in the upper abdomen to the appendix, the diaphragm, and even in some cases, uh, in other parts of the body. Okay. Sounds a little scary, but I'm happy we have this discussion today to talk about it. Yeah. And are there different variations of endometriosis or is it like a general one size fits all?

Yeah, so people have proposed several ways to try to classify it. So, um, there's a surgical staging like there is in cancer. So stage one to four, but turns out the staging is, doesn't do a great job of explaining the symptoms or prognosis or response to treatment as part of the staging, there's also an anatomic classification.

So one is called superficial, uh, one is called deep, which is locally invasive, and then one is called end traumas, which are cysts of the ovary. But kind of the biology of why endometriosis leads to those three quite different anatomic subtypes is [00:05:00] still unclear. Okay. So it's unclear how it starts.

Basically, the endometriosis, well, there's lots of theories, and basically they can be divided into. I think uterine theories and and non uterine theories. So some of the theories say those endometrial like cells ultimately come from the uterus. So either during menstruation, they go backwards through the fallopian tube into the pelvic cavity.

Or they travel via blood or lymphatic vessels from the uterus to other parts of the body. So that's one theory. The other set of theories, uh, say the cells do not come from the uterus. So for example, cells in the pelvic cavity undergo a process called metaplasia, and then they become endometrial, like, so they start to resemble the endometrium and it, I think it could be also that.

A given person? Both could be active, both theories, maybe just one that don't, don't really know. Hmm. And is there currently thought to be a link between family history and risk for [00:06:00] endometriosis? Yes. So there is a relationship with family history and large genome-wide association studies. She was, studies have identified about several dozen, uh, loci in the genome that are associated with inherited risk of endometriosis.

But still studying to determine which genes exactly these might be linked to. And also their functional importance, like how they might increase risk. And also those several dozen locations in the genome actually only explain a, only a small proportion of the, a total variation in endometriosis. So it's still only, uh, initial snapshot of the genetics of a disease.

Okay. So it's like other diseases in that there could be a hereditary component, but it's likely not the entire risk profile. Okay. And are there any other important risk factors for endometriosis that we know about? Yeah, so there are, uh, several other risk factors. So some of them are menstrual cycle related.

So it's thought to be the earlier that, uh, period start might be a risk factor. [00:07:00] Other risk factors, to me it's not as clear 'cause are they a risk factor or are they a consequence? So for example, having never been pregnant is. Called a risk factor, but actually endometriosis is associated with infertility.

So is it a, is it kind of a cause effect kind of thing? So some of these risk factors, I would say are actually more statistical associations, maybe more than necessarily being purely a risk factor. Okay. Is there a risk factor associated with lifestyle or his physical activity? I, I think, I don't think those ones are as strong.

And same thing with, with diet, there's a lot of research into diet, but I think it's still controversial. And how common is endometriosis? So, uh, approximately 10% of women and girls and new data also for gender diverse people is probably roughly around the same. So about about one in 10. Okay. So not uncommon.

Correct. Yep. Okay. So now that we explain a little bit what endometriosis [00:08:00] is and some of the risk factors, what are the symptoms or like the most common symptoms that people experience? Yeah, so this disease presents in so many different ways, which one of the reasons it's so interesting and also can be challenging.

So probably the most common symptom is painful periods, which can start right from the first period, or it can start to become more painful later. Other pain symptoms include painful bowel movements, painful voiding, painful sexual activity, and also chronic pain. There is an association with infertility and also recognized now that there are other symptoms as well affecting kind of the whole body system.

And so, for example, fatigue is now recognized as a cardinal symptom of endometriosis, although mechanisms not, uh, not completely clear. Hmm. And is having an irregular cycle also with symptoms or maybe not for endometriosis. So with endometriosis, it seems to be associated with changes in the menstrual cycle.

So things, for [00:09:00] example, probably the most common is probably spotting around the time of the period, but actually the etiology, the cause of that actually is not, uh, to my knowledge, not super well understood. Interesting. And we often hear that it takes a long time for people to get a diagnosis of endometriosis.

Do you know on average how long it takes? Yep. So there's a, a large Canadian survey that was done. Currently it's, it's about five years to get a diagnosis. Oh my God. And the most recent survey. And, and why is it that it takes so long to get that diagnosis? So probably lots of different causes. So one is needing more awareness in general society.

Then because of that, sometimes patients say, I didn't realize these symptoms were outside the normal when we see them after it's been like five, 10 years. And also the need for more awareness is also for clinicians as well. So needs clinicians to be aware of the disease and then when somebody presents with [00:10:00] painful periods to, uh, validate it and then to make a diagnosis like any other symptom, and then offer treatment.

And then another factor is historically endometriosis was diagnosed surgically. So you do surgery, you do a biopsy and get a pathology That confirms endometriosis. But the trend now is not to rely on that alone because it inadvertently probably results in more delay. So somebody has to see healthcare provider primary care to get a referral to gynecologists, and it might take a while to of asking before one gets a referral.

They need to see a specialist and that specialist has to be willing to operate. So the first one may not be willing, or the, someone may see the patient, it might take, uh, several months before deciding to operate. And then there's the wait list for surgery. And then, yeah, and then that's where the diagnosis be made.

So now in the new Canadian guidelines for endometriosis for diagnosis, which came out in 2024, we advocate for, uh, imaging diagnosis and clinical [00:11:00] diagnosis. So imaging, there's been a lot of advance in ultrasound and MRI to diagnose at least some types of endometriosis. And in individuals with the right knowledge and skillset who've been trained, um, they can recognize endometriosis that perhaps in the past, uh, we didn't realize that, that you could actually see it on ultrasound and MRI.

And then the other thing is clinical diagnosis or may trying to make a diagnosis based on the history. An examination and that one, depending on how the patient presents, it might vary in terms of ultimately how accurate it is, but there are some things on examination actually very accurate, quite sensitive and specific, and you can actually make a diagnosis on the history and examination with a fair amount of confidence and say you likely have endometriosis without the need to go to surgery.

The last thing I would add is there's been a lot of interest in the biomarker diagnosis of endometriosis, so there's been a lot of progress in that. So in Europe, there's a saliva test involving micro RNA. [00:12:00] That's, I think now they've had a validation study. Now I think it's starting to percolate. And in Canada, we're part of a Canadian national study of a blood test for endometriosis.

It's from McMaster. It was developed by a company called Afinia, which I was, uh, offshoots from McMaster University and it's being led by Dr. Matthew Ardi. Dr. Lauren Foster. So we're one of the recruit recruitment sites. So that might end up being a made in Canada, uh, blood test, right. Endometriosis. And that obviously is gonna really radically change how the disease is carried for.

Okay. I'm just, I have a lot of follow up questions after that, so I know a lot of people are gonna have very. Painful period, and then they go to their doctor and they talk about it. I just wonder what type of, 'cause people might be scared to have maybe the doctor touching them or asking specific questions on their period or on their pain.

So what is the diagnosis clinically? How do you do it? So the, [00:13:00] the first thing is history. So the symptoms, and I think. You just have to try to approach it on a case by case basis. So like someone's, like an adolescent, probably approach it in a different way. Although at our clinic we don't, we don't see adolescents.

There's a separate adolescent public pain clinic here led by Dr. Nato Todd. But yeah, the adolescent probably be different, someone in their twenties or thirties. So I just sort of engage just how the conversation is going, or ask open-ended questions, you know? Is there a particular concern you have? Or let's say somebody mentioned I have pelvic pain and then say, you know, sometimes pelvic pain is associated with a period.

You know, is that, is that uh, or it might say, you know, if it's okay to talk about sexual health and if they say yes and you say, sometimes pain can occur with sexual activity or with bowel movements. So I think just try to approach it carefully. 'cause everybody has a different kind of comfort. Then also try to de-stigmatize as just these [00:14:00] are, you know, these are questions we ask in other way to say it's just these are questions we ask everyone, and that helps de-stigmatize as well.

And then the other part of it is the physical exam, and that includes the pelvic examination, so that that has to be really on a case by case basis. And can't do that in everyone obviously. But it can be quite informative. And our approach at the clinic is just to make sure a patient is informed and we have a consent.

So how we always emphasize the rationale, what we're doing, what steps are involved, that they're in control. They can stop the exam at any time. Just emphasize that they have autonomy over their health. And then take it on a case by case basis. So sometimes someone feels ready to do the full pelvic exam.

Sometimes we just talk first and maybe attempt in the future. So it's all a case by case basis and also trying to do it in a trauma informed way as much as possible. Interesting. And you mentioned pelvic pain. Can you just explain a little bit for our audience what it is? Sure. Yeah. So pelvic pain would be like [00:15:00] lower abdominal pain.

Below the belly button. Above the pubic bone. Okay. And it could be on the left, right, or center. Okay. And how do we know it's not normal? So for pelvic pain with periods, which is called dysmenorrhea, the thought is that if the pain is affecting function, quality of life. So it's like non-responsive to things like over the counter pain medications and then is resulting in time off school, affecting career social activities, sports.

It's probably outside our normal. We had a recent initiative, social media campaign for a website called peer pain.ca, and it was to raise awareness of painful periods amongst adolescents. And there's actually a validated questionnaire on the website that you answer a few questions and then if your score is above a certain level, then it says like, you know, suggest follow up with a healthcare provider.

'cause May, this may not be. In the normal range. Great. Is this still available on the website? Okay, cool. Cool. Cur [00:16:00] pain.ca, we'll link it. Yeah. Okay. And it sounds like overall for the diagnosis of endometriosis, things are headed in the right direction. So you know, historically it was only surgically and now we're moving to maybe more of a clinical diagnosis as well as potentially other biomarkers.

So would you say that it's looking more hopeful? Yes, I think like much more hopeful. Good. Okay. So moving on from the diagnosis, what does the treatment of endometriosis look like? So one medication or drug base is targeted to reducing estrogen levels. So endometriosis is an estrogen dependent disease. So, um, the lesions of endometriosis themselves produce estrogen.

They have their own estrogen production, and also they utilize estrogen that come from the ovaries. These medications basically act on both those areas, the lesions and the ovaries in general to reduce estrogen levels. So that's one approach. And then the other approach is surgical. So to basically excise or [00:17:00] treat the, the lesions, usually laparoscopy.

Okay. So you mentioned estrogen. So for someone that has endometriosis, they would have higher estrogen levels. It is, it's not so much systemic estrogen levels. A lot of it is local. So at the level of the lesion, there's a, a higher level of estrogen production. And then even if the systemic estrogen levels are normal, the lesions would use those normal levels.

And what would be the problem by having higher estrogen levels at these specific areas. So, uh, the estrogen metabolism is linked to inflammatory mechanisms in the lesion. Then those together feed into lesion survival and growth and spread. Okay. So the idea is to kind of cut off the source of like power or energy for these lesions, so they stop growing?

Yes. Yeah. Okay. Very interesting. And then you talked about the surgery a little bit. Can you explain what the surgery looks like? Is there a lot of side effects or is it dangerous? [00:18:00] So it's not dangerous, so, uh, it involves a laparoscopy. Then some things that have been great is that the technology for laparoscopy is progressed over time, so it offers a very magnified view of endometriosis, so you can see it a lot better.

So there's kind of several key steps. So one is make sure you look everywhere if you're in there, and then secondly, recognize that endometriosis as different appearances. So it has a classic appearance, and then there's also a non-class. So you have to recognize both in order to make the diagnosis. And then ideally, if you're gonna be doing surgery, then you would excise the lesions and be able to excise all the visible diseases as much as you can.

And then that's good for treatment. But also then you get a pathology report from each of those excise specimens, and then the pathologist will say, yes, there's endometrial like cells present or, or not. And how effective is the surgery at reducing people's pain? Uh, so surgery and mitosis surgery is [00:19:00] really interesting.

It's a area where there have been a few actual placebo controlled randomized trials. So they actually randomize patients to do laparoscopy. You diagnose endometriosis and you take the scope out and you don't treat it. And then the other participants are randomized. A laparoscopy, put the scope in, you see the disease, and then you treat it, and then the patient is blinded and then the assessor is blinded.

Those studies actually show that on average there's a reduction in pain with the treatment over the placebo laparoscopy, so it can be effective. One of the major things though is that there's a lot of variability. So on average there's an improvement, but there can be a big improvement, can be a small one, sometimes not a lot of change, less commonly, but it does happen, can potentially even get worse ultimately.

So people have been trying to work on how can we predict that ahead of time. At our center here, Dwayne Tucker just completed PhD co supervised by Dr. Eileen Tahu. So we use machine learning to be able to predict ahead of time before surgery who's more [00:20:00] likely to have a better or less of a response to surgery.

So it's called Endometriosis pain index. So that was just published and so now we can say you're more likely to have, you know, a certain probability where the outcome may not be as good. So let's come up with an alternative plan or let's, let's treat, no, let's say there's other factors involved. Let's treat them first before doing surgery.

So yeah, I'd say it's highly individual. And then there's two sides of the coin. So on one side, you know, people have felt that. Access to surgery With experienced gynecologists, there's been issues with access. On the flip side, we're also trying to avoid too many surgeries in the same person as it can. It studies show it increases the risk of chronic pain.

So there's kind of that, uh, fine balance where we surgery should be accessible to somebody who needs it in a timely fashion and with the right clinician. But also not an overdependence on surgery too, because endometriosis associated with pain and pain is a complex [00:21:00] biopsychosocial phenomenon. Research shows it's not just the endometriosis lesions, so the, the number of lesions, the amount doesn't correlate well with the amount of pain.

So it's, it's actually what's happening around the lesions. From like a microenvironment level, like around very closely around the cells, all the way to the whole body and the central nervous system. That's why it's more than just the lesions and it can be quite variable. So we want to treat the other ways that endometriosis leads to pain, not just, uh, lesion specific and not just surgery specific.

Okay. Interesting. And let's say someone that has very bad period cramps, goes into the clinic and then gets diagnosed with endometriosis, what would be the first line of treatment? Presuming it's not gonna be surgery right away, or it depends maybe on the person, but Yeah, so we have new national guidelines for management that will be coming out and we have to wait until it's published for the details.

But the, the general philosophy, [00:22:00] similar to the diagnosis guideline is a patient centered approach. Everybody's individual, everyone's different. So, you know, the 17-year-old that wants to graduate and play varsity sports is gonna have a different treatment plan than. A 30 5-year-old who's been trying to get pregnant for a year.

And then there's also a lifecycle approach. So we recognize that someone in their whole life, the way of diagnosis and the way of treatment, is gonna vary from, from time to time, depending on their life goals. So it's not so much saying it has to be like a stepwise, you do one, then number two, then number three, it's you go through all the options and then you try to match it so that where they are in their life.

So that's sort of the general philosophy. We just had a conversation in our last episode that was on contraceptive decision making, and I think that was the real gist behind that as well, is it's not just a, this one, then this one, then this one. It's a, what do you need at this stage? And I think that's really.

Great that that is part of the guidelines as well. Yeah. You [00:23:00] mentioned before that pain and the experience of pain is very different for everyone and there's multiple factors. Can you shed any light onto how endometrial lesions cause pain? So, at the lesion level, probably local invasiveness is one factor.

The deep subtype can invade the bowel, can invade the bladder in, in extreme cases, so that. That will cause painful bowel movements, painful voiding, so local invasion, and then local inflammation. So inflammation around the lesion probably plays a role that's also related to the degree of nerve growth, peripheral nerve endings around the lesion.

So if you have more growth, the peripheral endings, probably that's another factor. And then how sensitive those peripheral nerves are in terms of whether they're more likely to fire and send a signal to the central nervous system. Then also occurrences in the central nervous system. So it's thought to be things like reflexes or crossover between [00:24:00] say, the nervous system supply of the uterus and of the bladder or of the uterus in the bowel, or involving the musculoskeletal system.

And then also different signaling in the brain and spinal. So studies have shown those with endometriosis and pain. They have different, um, if you do MRI of the brain, you see slightly different structure of different brain regions. And then there's one part of the brain that's called the periaqueductal grades involved in regulating pain signals coming from the periphery.

You can see individuals, endometriosis will have different levels of like the structure and amount of the periaqueductal gray. So it's everything from what the lesions are doing, microscopically all the way to what the central nervous system and brain are doing. And the more that you get more involvement of other body systems, the patients start to get symptoms of loving the whole body, like more bowel symptoms, more bladder symptoms, more musculoskeletal symptoms, more things like fatigue, for example.

Then the final level of it is like the [00:25:00] social situation. So the psychosocial situation. So things like depression and anxiety change the emotional aspect of pain. 'cause pain is a sensory and emotional experience, so that's important. And then things happening socially in one's life, there's a lot of stressors.

That also plays a role in pain. In fact, there's, there's animal studies that show a link between stress and endometriosis, lesion growth actually. So yeah, it's, it's quite a lot of different ways can lead to pain. Because I was gonna ask, if you have maybe more of a stressful life and you're more anxious, could that increase your lesion or like your endometriosis stage?

I don't, I don't think we can say for sure in humans. Then also there's always a very fine line you walk. 'cause you don't want people to feel like the self-blame that, no, I did X, Y, or Zs. So you don't wanna do that. But you also wanna recognize that pain involves the whole body and life circumstances. And then, yeah.

So you just, depending on who you're talking to at that [00:26:00] particular moment, you just try to navigate that. Are there any notable strategies that clinicians recommend to help manage pain among people with endometriosis that aren't necessarily like surgery or, or. Drug treatments. Yep. So, uh, at our clinic we propose an interdisciplinary approach.

So it's similar to what's being done for chronic pain care in general. So includes things like physical therapy and then psychological based treatments like mindfulness, cognitive behavioral therapy, acceptance therapy. So trying to address the pain in a holistic way. So we think that's ultimately the best way of doing it.

An endometriosis. How we try to divide the pain is what elements are nociceptive. So meaning arising from like the lesions themselves and what's neuroplastic, so what is that happening elsewhere in the body? And then there is another category that's less common called neuropathic, that's the endometriosis affecting a specific nerve anyway.

So you try to gauge how much of the pain is nociceptive or no [00:27:00] aplastic 'cause you wanna match the treatment to which pathways are most active. So we wanna avoid. Similar to what we discussed earlier, we wanna avoid over-treating and undertreating. So if someone's pain is nociceptive is due to the lesion, they might need access to surgery in a timely fashion.

Patients no aplastic, maybe the endometriosis lesions are no longer as active anymore. It's everything else that's happening that we don't wanna subject that person to surgery after surgery. And then we're gonna look at other ways of pain management. Oh, I really like this approach. Okay, so we mentioned that endometriosis can affect.

Various systems. So we wanted to talk about a few systems. So the first one would be related to sexual pain. So there's a lot of people that experience that. Why does endometriosis often cause pain during or after sex? So the direct cause endometriosis is when the lesions tend to grow in a particular location in the pelvis called the cul-de-sac, and then that corresponds to the [00:28:00] apex or the top of the vagina, which is underneath the cervix.

Then that gets hit with deep insertion and that leads to what's called deep dys hernia, which is particular type of sexual pain, which is pain with deep belt internally. So that's due to the endometriosis lesions directly. But endometriosis can indirectly also cause sexual pain. So through the different body mechanisms, you can get more pelvic floor muscle, uh, spasm and sensitivity, and that will contribute to DYS pruning as well.

We have a published study at our center where a lot of patients with endometriosis, I think about a third, also had a sensitivity at the opening of the vagina called Provoked vestibular, Nia or Nia, which tends to cause pain with initial entry. That's through an indirect mechanism. So I'd say the classic symptom is the deep dysuria.

But if you really ask patients in detailed questions, actually many are also experiencing pain with initial entry called superficial dysuria. And [00:29:00] that's through these, these indirect mechanisms. Okay, so can having deep penetration aggravate the endometriosis and Yeah, probably doesn't make the lesions grow more.

But anytime there's a recurrent cause of pain, so it could be, say sexual activity, it's always painful time and time again multiplied. Um, also, periods are painful over and over every month and that's thought to then cause something called hyperalgesic priming. So primes essential nervous system to then start showing some of these changes that then leads to more chronic pain.

So that's how any sort of recurring pain. Phenomenon cannot ultimately worsen the pain experience. And how can someone tell what might be just normal or like occasional pain with penetration? Like let's say something's in the wrong position versus something that's more serious that they might need to see a clinician?

Yeah. Well, I think that you [00:30:00] would address things like lubrication, for example, and genital arousal are important. So if not present, then that can also predispose the pain. Uh, could be more positional changes, for example. But I think if you try those more self-management techniques, and it's still very painful, I think particularly if there's a cyclical component.

So if it's worse as the period's approaching, then I think that suggests it's something out outside the realm of normal. And what type of recommendations would you give to these patients? So the same treatments. So if a diagnosis of endometriosis is made, then you can do again, the hormonal or surgical treatments.

Pelvic physiotherapy is a really key for, for sexual pain, also for bowel and bladder symptoms as well. So pelvic physiotherapy in situations where it's affected other parts of the sexual cycle. So now if there's pain, then the sexual cycles affected, then that affects desire and arousal. And then the [00:31:00] lack of like things like genital lubrication then worsen the pain.

It becomes a positive feedback loop. Sometimes people will see a sex therapist to try to optimize the sexual response cycle from the effects of having this recurring pain. Could be things like involving the partner, so like couples space therapy. And then we also did a clinical trial recently on a device called the, so these are rubber rings that fit over the penis or the other, whether it's an object or a digit use for insertion.

And it limits the depth of penetration so that contact isn't made with say, the top of the vagina, which is where. Say there's endometriosis lesions there, and then in that pilot randomized trial, we found that, yeah, it reduced pain and on the whole was acceptable to patients and partners. Wow. I love that kind of innovative stuff in women's health.

Hell yeah. It's great to know that we're trying to find solutions and not just saying that it's normal or it's the way it is. Yeah. Okay. Let's talk a bit about fertility. How does [00:32:00] endometriosis affect fertility? So I wouldn't say it's fully understood. So part of it does seem to be the amount of endometriosis.

So it's particularly if it involves the ovaries and the tubes. So a lot in those locations probably affects fertility in part, but there's other potential mechanisms that are not clearly understood. So you can have somebody with stage four endometriosis that has completely normal fertility and someone with stage one that has difficulty conceiving.

So clearly it's more than just the. Amount of lesions, then we just try to emphasize that many patients with endometriosis will have no trouble conceiving. So it's kind of, again, that balance where, uh, it, it is a risk factor. So it needs to be addressed. And if somebody has endometriosis, for example, they might decide if they feel it's best for them to modify some of the reproductive decision making, or if they've been trying, you don't let someone with endometriosis try for years and years without intervening it.

That's known risk factor. So you wanna. [00:33:00] Address the fact it is an onerous factor, while you also don't want to cause fear in patients, that the idea that it's always associated with infertility. 'cause in many patients it's not. And actually we have one study that showed that in patients with endometriosis that have more of that initial entry pain during sexual activity, the superficial dysuria, it had more concerns about their future fertility.

So part of it is also trying to address fear and reduce anxiety. It's both parts. Yeah, I think it's interesting 'cause I know a few people that have been diagnosed with endometriosis and they got told that it might be hard to conceive and they're pretty young and not thinking about it now, but it's still like a stress factor for when they wanna get pregnant.

But it's interesting to know that it's very patient centered and it depends on everyone. And are there any available options to help people conceive who might be struggling with fertility directly related to endometriosis? So for some it can be just time. So some they're doing trying for six months, [00:34:00] let's say.

They may have a significant chance of getting pregnant over the next subsequent six months or next year. Also, surgery has been shown to be associated with I improvement infertility. So same thing. They did these really difficult studies. Actually the main one was done in Canada. They randomized patients of laparoscopy with treatment or laparoscopy without treatment.

So very difficult to do. They found a higher pregnancy rate in the arm that they were randomized to treatment. So it is associated with an increase in the spontaneous pregnancy rate, but surgery, it makes no difference in general for assisted reproduction. So that's interesting. It's only for the spontaneous pregnancy.

And then the other option would be to go go to a fertility center and then undergo fertility treatment. Okay. And for some people that, I don't know if there's any study on this, but people that get pregnant. Are there any risk associated with endometriosis during pregnancy, or even risk for infant outcomes?

So a really good question. So the first thing I'll address is the pregnancy [00:35:00] outcomes. So there is some data now showing an increased risk of things like miscarriage. We publish a meta-analysis on ectopic pregnancy, placenta previa, which is where the placenta grows in a not an ideal location in the uterus.

So these all seem to be risk factors, but they're not such substantial risk factors that, uh, as far as I understand, most places the obstetricians or maternity care providers don't alter prenatal care significantly. So it's not like there's a different monitoring plan. So although it is recognized, there's an increased risk.

The other thing is some types of endometriosis, like the more deep type or the ovarian type. Sometimes if one gets pregnant with those lesions present, in rare cases there can be complications. Um, but actually in most situations, the endometriosis lesions seem to improve during pregnancy. That's not necessarily the same as pain.

So certainly there's some [00:36:00] patients with endometriosis or pain will be much better during pregnancy, but because pain is so multifactorial, there are some cases I think where pain could still be an issue. For example, if there's a lot of a musculoskeletal part of the pain during pregnancy, there's a lot of changes to body ligaments, stuff like that.

So that's possible that part of pain may get worse. So I guess it's just providing information. Um, sometimes patients have said, clinicians have said, well, you have, you have enemy choices, you should just get pregnant. So obviously we wanna avoid that, but still recognizing the, the data that, that some people, their pain is better during pregnancy.

Then postpartum. There is some data now showing that about 50% the symptoms will recur after delivery. So not considering it like it's a permanent cure for the disease, while still in some cases actually some people will notice an improvement. Hmm. Okay. Well that's encouraging at least, um, to know that there's options to get pregnant and also that during pregnancy it's not necessarily [00:37:00] gonna increase your pregnancy risks, so that's good.

For the infant outcomes. Is there any studies on that? Um, well I think secondary to like the slightly elevated risks of things like preterm birth, for example, but those type of outcomes still not totally sure. Is it due to endometriosis directly or is it due to the fact that patients with endometriosis might have other risk factors?

So I don't know if we can say it's completely due to endometriosis, but statistically if you compare individuals endometriosis laws without some of these studies have shown things like. The impact of preterm birth on, on the infant. Okay. But we're not sure if it's the endometriosis or other factors.

Yeah, that could cause it. Okay. I would like to move on to talking about irritable bowel syndrome. So what is the link between endometriosis and irritable bowel syndrome? So there is a close link to both irritable bowel syndrome and something called painful bladder syndrome. It's kind of a similar condition of the bladder.

So anytime somebody presents with bowel symptoms [00:38:00] or bladder symptoms with endometriosis, the first thing you wanna do is make sure it's not directly due to endometriosis. 'cause you can have endometriosis growing near or even into the bladder or into the bowel. So if that's the case, you need to manage that appropriately.

But some cases actually, patients will have bowel and bladder symptoms and the endo is not around those locations, or it's already been treated surgically. And then there, there is a high rate of coexistence of patients at least meeting clinical criteria for painful bladder syndrome and for irritable bowel syndrome.

So then there's a different management plan specific to those conditions. And again, it goes back to all, all the careful balance because some patients with end endometriosis. Felt they were misdiagnosed with IBS first and they actually had endometriosis. So you wanna avoid that. You also wanna avoid the patient with endometriosis who has endometriosis and then has bowel symptoms and totally they have IBS, but they have a deep endometriosis of the bowel.

Um, but you also wanna avoid the patient, whether you have a patient with endometriosis that has [00:39:00] IBS and then subject them to multiple surgeries or try multiple hormonal therapies over and over again without addressing, um, the IBS part of the picture. So you wanna cover yourself in kind of all those different presentations and is it common to have endometriosis and IBS?

Yeah, so at our center, which is a referral center, so it's, it's not a population based, but it's like 30 40% of the population has, of endometriosis, has IBS and painful bladder syndrome as well. And so I, I think it, it's a same thing with sexual pain. So if you have like. Hyperalgesic priming. So painful period or painful sexual activity.

So over and over, over and again, it will likely predispose that person to more pain, so to more IBS or more PBS symptoms. And usually what we see is that. The patient has painful periods. And then the next sort of sentinel sign is, say they start peeing more frequently or they start having more bowel movements, and that's a sign that they've had [00:40:00] pain for a significant amount of time.

And now with those nervous system pathways, potentially the bowel and the bladder are both getting irritated. So that's a very common sort of symptom progression. Okay, now we're gonna move on to a segment we often do on the volition that's called Belinda or Baloney. It's essentially true or false, but instead, we have this friend Belinda, who often hears statements, some of which are misinformation, some of which are true, and we'd like you to tell us if it's Belinda or baloney.

Okay. First statement. Painful periods are just part of being a woman. So false. Okay, so baloney. Baloney. Yep. Yep. Okay. Perfect. The second one is the severity of pain someone feels doesn't always match how much endometriosis is present. Correct, Belinda? Okay. Endometriosis only affects the reproductive organs, uh, bologna.

So yeah. Affects the size of the pelvis. Bowel, bladder, yeah. Other structures. Okay. A hysterectomy or the removal of the uterus [00:41:00] cures endometriosis. So that's bologna with a, with a caveat. So I would say if you just do a hysterectomy, it's not a cure for endometriosis, but our studies show that if you do surgery for endometriosis well, so you excise all the visible lesions you can see.

And let's say the patient has completed childbearing and this is their choice. They wanna do a hysterectomy as well. At least statistically speaking, we do see more pain relief and a lower risk of endometriosis returning and of a repeat operation. So we don't want to be just doing hysterectomy in everyone without thinking about it.

But if hysterectomy is done while also treating endo well, selecting the right individual and that the person feels it's the right decision, it can actually. Have quite a big impact as well. So it's again, this case by case basis and just trying to do this hysterectomy procedure in an appropriate way.

Mm-hmm. Okay. So it doesn't cure it, but it could help. Yes. Yeah. Okay. [00:42:00] Endometriosis can cause chronic pelvic pain even when someone isn't on their period. True Belinda. Some people with endometriosis have very few symptoms while others have more severe pain. True Belinda. Okay, now we're gonna move on to our section, what women really wanna know.

So this is just questions that people ask on her Instagram or other social media. So the first question is, if you have endometriosis, can it resolve on its own? Yep. So it can, like other diseases, it can resolve on its own, it can stay the same and it can get better. And then this be noticed, some of these surgical studies that were done that are very difficult to do, but they scope, somebody documented it did nothing, and they actually, six months later or so, re-scope to the patient actually is a very hard study to do, and they can see with no intervention.

And a roughly one third's, not exactly a third, but roughly, uh, you'll, you'll see improvement. One third stays the same, one third or, or [00:43:00] so worsen. So it, it can change on its own. And do we know why it changes? Like how, is there any factors that could help? I don't. I don't think so. Oh, yeah. Not yet.

Understood. But that's why we have you. Yes. Okay. Another question. A listener shared that they had very severe cramps as a teenager and were started on the birth control pill, which helped a lot. Now they're nervous about stopping it. They're wondering could it be possible that I had endometriosis present all along, but the pill was helping to manage symptoms.

Yep. Then that, that is possible. Yeah. So if the birth control pill is working well for someone, they can just continue. I think the, the potential change to the pathway, I would say is not, now we're, I think we're trying to emphasize clinicians to discuss the diagnosis too. So to say, you know what, you, you could have endometriosis, and here's one of the treatments.

Patients often want to know the diagnosis in, in addition to the recommended treatment. I think that's, that's something would be done. But if the birth control pill works very well, then just continue with that. [00:44:00] And then if their fertility plans change, then that's really a key moment as well. Might be a good time to see a clinician at that time to see how the pain goes without it as they're trying to try for pregnancy.

And then if the pain recurs, then you have to manage that situation basically. And to clarify from what we discussed earlier, the pill, it could be helping to manage the estrogen. Levels to the lesion. Yeah, so the progestin part of the combined pill, which is probably the most important part of it, is suppressing the lesions, estrogen production.

Okay. And also estrogen from the ovary. There's actually endometriosis specific drugs that are progestin only. So, but progestin is synthetic progesterone, so without the estrogen part in the traditional birth control pill. And then there's other endometriosis drugs that don't have. Estrogen or progestin in them, but they basically act in a similar way.

Okay. Very interesting. So to sort of wrap up, for any listeners who [00:45:00] might be listening and experiencing some of the symptoms of endometriosis and would like support, are there any resources you would recommend or first steps that might consider taking? So there's web resources like our websites, period, pain.ca, and pelvic pain endo.ca.

There's also resources in Canada from the Society of Obstetricians and Gynecologists of Canada. soc.ca has a website called Your period.ca. Also the Canadian Association for Advancement of Gynecologic Excellence. So CAN Sage has resources, and there's also a national patient advocacy group. The Endometriosis Network in Canada, Tennessee has a very good website and a lot of resources and also from an international point of view.

There's the World Endometriosis Society has a website as well with uh okay. Resources. Great. We'll put all of this in the bio. And now there's an upcoming endometriosis film festival that you're part of it. Do you mind just telling us a little bit more what it's [00:46:00] about? Yep. So, uh, this was a study we did with Dr.

Fuchsia Howard in the school of Nursing, who was the principal investigator. It's a CI chair funded study of the use of digital storytelling, so an art space approach for patients to tell their stories of how they endometriosis through film. And so quite a few of these videos are made from individuals across the country and then we're gonna exhibit them at this film festival in the fall in Vancouver.

And I recommend people going. The films are quite, they're quite powerful, and what we hope is that, you know, it helps with people's healing. Maybe it helps with the audience too. So someone with endometriosis helps also with their healing and also if clinicians potentially view it, or family members or spouses or friends.

I can also help people with endometriosis as well. So that sounds great. And we'll link all the information in episode notes so that people can learn more. Yeah, we're gonna go, yeah, definitely. Yeah. Okay. And then our final questions that we ask all of our guests, we have two [00:47:00] here, so they're kind of big.

If you could bust one myth about woman's health forever, what would it be? I'll say that the normalization of symptoms. So just hearing people have such significant symptoms and having to have lived with it for so many years, really wanna avoid that. So, uh, yeah, I would, I would want that to go away. Yeah, that would be amazing.

Okay. The last question is, what's one change you hope to see in women's health in the next 10 years? I'd say like the incorporation of all these advances in genomics and artificial intelligence, stuff like that, and just being able to really diagnose it very accurately and non-invasively. And also, we're really interested in new drug approaches for endometriosis.

So the current drugs work well for a lot of people, but our studies show that some patients can't tolerate the current drugs available. They have side effects. So trying to think about some [00:48:00] different treatment paradigms. Um, they give women more options ultimately. Fantastic. Well, thank you so much for sitting down with us today, answering a lot of questions we had.

We understand now. More endometriosis for sure, for sure. And I'm sure our listeners will agree. So thank you so much. Thank you. Thank you.