At 25, Mathilde Olstad's life was on track: a new relationship, a finance degree nearly finished, a career about to launch. Then pain during sex appeared out of nowhere, Then pain during sex appeared out of nowhere, and it didn't go away. What followed was years of dismissal, dead ends, expensive alternative treatments, and being refused by seven gynecologists before she could access specialized care. Instead of staying silent, she turned her experience into The World's Tightest Community, a podcast reaching thousands of women living with vulvovaginal pain.

In this episode, Dr. Sameena Rahman sits down with Mathilde Olstad, creator and host of The World's Tightest Community, a podcast dedicated to vulvovaginal health, chronic pelvic pain, and breaking the silence around conditions like vulvodynia, vestibulodynia, and vaginismus.

Mathilde shares her story from the beginning: the sudden onset of burning vestibular pain at 25, a GP who told her everything looked fine, a year and a half of waiting, and the excruciating speculum exam where the shock on her providers' faces told her everything about how unprepared the system was for patients like her. She describes the desperate search that followed, from mainstream treatments to $1,500 herbal prescriptions, and the profound loneliness of never seeing anyone else who had walked this road.

The conversation goes global: why the latest research in vulvovaginal pain isn't crossing the Atlantic, what it took for Mathilde to access Norway's public vulvar clinic after seven gynecologists refused to take her on, and why so many complex pain patients become what clinicians call "heartsink patients." Dr. Rahman and Mathilde also dig into the visual language of these conditions, why "you are not alone" rings hollow when you can't see a single face, and how a Reddit community became the spark for a podcast that now reaches patients and clinicians around the world.

Mathilde shares her story from the beginning: the sudden onset of burning when having sex she went to her GP who told her everything looked fine, a year and a half of waiting, and the excruciating speculum exam where the shock on her providers' faces told her everything about how unprepared the system was for patients like her. She describes the desperate search that followed, from mainstream treatments to $1,500 herbal prescriptions, and the profound loneliness of never seeing anyone else who had walked this road.

Our conversation goes global: why the latest research in vulvovaginal pain isn't crossing the Atlantic, what it took for Mathilde to access Norway's public vulvar clinic, and why so many complex pain patients become what clinicians call "heartsink patients." We also dig into the visual language of these conditions, why "you are not alone" rings hollow when you can't see a single face, and how a Reddit community became the spark for a podcast that now reaches patients and clinicians around the world.

It takes courage to keep telling a story like this one. Every time a woman does, it reaches someone who thought she was the only one. If you know someone dealing with this, please share it!

I also want the clinicians listening to hear this with an open mind, not shame. So many of us were never taught about these conditions. But not having the answer is never a reason to make a patient feel like she's the problem. What she needs from us is empathy, curiosity, and honesty about what we don't know.

Highlights:

• Vulvovaginal pain conditions like vulvodynia, vestibulodynia, and vaginismus are common, with estimates ranging from 8 to 28 percent of women experiencing them in their lifetime, yet they remain under-researched and widely dismissed.
• Sudden-onset pain with sex is not "just anxiety" and should prompt a real diagnostic workup, including a vulvar exam, vestibular assessment, and pelvic floor evaluation.
• A diagnosis label like vulvodynia is only a starting point; without a differential assessment of drivers (hormonal, inflammatory, neuroproliferative, muscular), patients are left with trial and error.
• Pelvic floor involvement is nearly universal in vestibular pain, because anticipating pain leads to clenching and hypertonicity that outlasts the original trigger.
• The knowledge gap between North America and Europe in sexual medicine is real: patients abroad often can't access treatments, and some specialists are unfamiliar with current concepts in the field.
• Recovery is rarely one breakthrough; for Mathilde it was cumulative, including pelvic floor physical therapy, osteopathic work on diaphragm tension, and most recently pelvic floor Botox.
• Social media has forced real change in women's health, from IUD pain management to mainstream conversations about menopause, but vulvovaginal pain still lags behind.
• By the time a woman with these conditions reaches a new clinician, she has almost always been dismissed before; believing the pain is the first intervention.

Resources-

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okay. Hey y'all, it's me, Dr. Samina Ramon, Gyno Girl. Welcome back to another episode of Gyno Girl Presents Sex, Drugs, and Hormones. I'm Dr. Samina Ramon, sex med gynecologist and menopause specialist in downtown Chicago. today I have an amazing guest. We've been trying to get together for many months at this point, but she's truly created something special. she's taken one of the most isolating experiences that women can face.

No worries.

Mm-hmm.

living with vulvo vaginal pain pain and really turned it into a global movement of community education, support, and and hope, honestly. She's the creator and the host of the world's Titus Community, a podcast dedicated to vulvo vaginal health, chronic pelvic pain, and breaking the silence around conditions like vulvadinia and vaginismus. Is is it am I frozen on you? Can you see me frozen or am I still moving?

Yeah, you are frozen on my end.

Okay, now now it's better, right? Yeah, because you're f you're you're fine. Okay, anyway, Carrie will fix it out. Okay. I'm gonna start that again. Matilda Alstead is the creator and the host of the World's Titus Community, a podcast dedicated to vulvo vaginal pain, chronic pelvic pain, and breaking the silence around conditions like vul vulvo dynia, vestibulodinia, and vaginismus.

Yeah. Okay. Okay, good.

you know, as a sexual medicine gynecologist, I meet women with these conditions every day who have spent years searching for answers, have been told to just relax, to have a glass of wine, that this is just anxiety. But I think what's amazing is that Matilda's really worked to help thousands of thousands of women know that she's not a that they're not alone and there is help available, and really trying to help them find the resources that are are there for them.

Matilda, thank you so much for joining me today.

Thank you for having me. I've been really looking forward to this. Yeah. Thank you thank you for letting me come on.

I'm super I'm super excited to have you on and also to be on your podcast as well. I want to start I because I'm Gaiano Girl on Instagram, so I love a good backstory. but I really want to get and you know, when I first started this podcast, I actually started out just interviewing patients of my own who were wanting to tell their story. And so I love this is like almost a full circle moment from when I started, but I wanna hear about, you know.

Yeah.

Hmm.

your story, what you know, however much you want to talk about with vulvo vaginal disease, you know, all the things that you experienced. And then I want to talk about, you know, what inspired you to get to the point where you are today and really push education and advocacy forward.

Mm.

Yeah, yeah, thank you. So it all really started about six years ago now, at the age of twenty-five. So and I think like I'd never had any problems with pain up until that point and it came really out of the blue. I was at a really good point in my life. I just met the man who's now my husband. I was about to like graduate from my major in finance, start work and

All of a sudden, I just started experiencing pain during sex. it came completely out of the blue. It was this like burning, raw sensation, mainly at the vestibule, that first started after sex and then also during sex. And at first, I I kind of just waited a bit to see if it would pass. It didn't. So I went to my GP, they did some tests.

Where were you at the time? Where were you at the time?

I was in Denmark, I was doing my my graduate training there. And they did some tests, looked at the tissue, basically said, everything looks fine, this happens to a lot of women, it would go away. so I kind of took that as a as permission to just not push. I was thinking maybe I was overreacting, so I just waited for about a year and a half.

And I kept on having provoked pain during that period. So mainly pain during sex, but also increasingly pain using tampons and you know riding bikes and that type of thing. And the moment where I just couldn't choose to just wait anymore was during a routine appointment at my GP. we were doing like a gynecological examination using a speculum. And

I was just, they tried to insert the speculum and I was just in excruciating pain. It felt like I was being split open and it was just really a really dramatic thing. And what I actually it's quite interesting looking back at it, what I remember really viscerally is not only the pain, but more than the pain itself was the reaction and the shock on the faces of the GP and the nurse that was in the room.

I really like read their faces as like not concern but shock. Like my r response was the surprising thing, like I was making it difficult. and like looking back at that, knowing what I know now, that makes me really angry because it shows just how large the like systemic failure is in recognizing that this can be a problem for many people.

Yeah.

Yeah. Yeah, it

So that was really the moment where everything just came tumbling down and I could no longer ignore it.

So you were so you were in a situation where you had been previously able to use tampons, had pain free sex, everything was moving along well, and then something changed in your biology, and all of a sudden, you know, you couldn't do it anymore. And the reaction is not unlike that of what that I've heard from other patients, which is almost putting the blame on you, right? Like this is a you problem and why can't you tolerate this exam? Or is this something going on with in your head or you know that kind of thing? And and really like, you know.

know, almost dismissively telling patients that they need to get they need to fix this. Like not not engaging in this idea that this is something that we need to assess and you know try to figure out.

Exactly.

Yeah, exactly. And so at that point I I luckily got to see a really great gynecologist. I got a diagnosis of vulvadinia. I got a treatment plan I of going on neurotyptine and doing pelvic floor physiotherapy. and I did that. I showed up, I really tried, but nothing was really working in the way that it was supposed to.

Horrific.

Mm-hmm.

and I just slowly found myself going like deeper and deeper into this rabbit hole of trying everything and anything because what I was, you know, prescribed was just not doing anything. So I went down like trying the more mainstream treatments as well, but also more and more like alternative or fringe treatments because I was just desperate for anyone who would

Yeah.

Desperate. Yeah.

Yeah, who would who would help me? I remember at one point I had been referred to this, what was supposedly like the top traditional Chinese medicine practice in London. And the prescription that they gave me was like herbs worth like fifteen hundred dollars. And i it's just it really pains me looking back at how frantically I was like looking for things that could help. and

I just became like in the most exhausted way possible, just extremely proactive. And but throughout all of that, underneath everything I was trying, I was also just feeling increasingly hopeless and desperate and also profoundly lonely because I didn't see anyone around me who had been through this. I didn't see like any faces. I didn't have anyone I could point to and say, they've navigated this and and here's what like what they learned or what what helped them.

Sure. Yeah.

And so I was at the point of like genuinely considering giving up. It had really had a very profound impact on my sense of self and my relationship and my feeling of just being a whole woman.

Were you even able like were you trying to have sex anymore or was it just like a non issue at that point?

I I was trying, but I just completely stopped having penetrative sex because it just it was not possible. and I will say like it took a huge hit on my libido, and that was really challenging because I had always enjoyed sex and here there was just something that had come into my life and just like thrown a hand grenade and everything and just really messed everything up. so it was really destabilizing. Yeah.

Yeah.

Yeah. and so

At what point did you cause I mean I you know I have actually a number of people that reach out to me like either DMs or or through like my YouTube channel or whatever from like different countries in Europe, I feel like that they're not able to have or access the kind of care that they want. I mean we have a problem here as well, but I think with Ishwish it's a little more of a North America you know, it's little bit more centered in North America. And so I think that we have, you know, more of a following here. I mean

And when did you eventually get the help that you needed and and how did you find it?

Yeah, I feel like I'm still on the journey of like being fully cured if you if you if you will. I'm a lot better than where I was. I have no longer have any of the like vestibular pain and tree pain that I had before, but I still am struggling with like vaginismus type symptoms. So penetration is still difficult.

Okay.

Mm-hmm.

This automatic contraction of the pellet floor 'cause you anticipate the pain after being in it for something. Yeah.

Yeah. Yeah. So that's been a very difficult thing to kind of unlearn. And I actually recently had pelvic four Botox. I'm hoping that will work. But the the the point is I'm a lot better than what I was. And I think I people ask me this all the time, like what was the one thing that helped? But I think for me it was more like a a cumulative process of finding slowly like pieces of the puzzle that seemed to be contributing to the pain. So

Okay.

For instance, for me, I got a lot of relief from seeing a really skilled osteopath who worked a lot with releasing tension in my diaphragm, which I think was con contributing to to tension in my pelvic floor. But unfortunately, it's been a very long and windy road to where I am today. And I guess that was what I wanted to like part of why I wanted to create the podcast and interview,

Mm-hmm.

experts on different topics that are it's it is quite in depth is quite niche and it's it it wouldn't be it would be difficult to understand for someone who's knows nothing about vulva vaginal pain conditions and I'm very aware of that. But I think like my story has not been linear in like whatsoever. So I think it's really important to have that nuance there because cases like myself and a lot of women I talk to are in the same position, they end up

And

Mm.

knowing so much about these conditions because they just have to, because you have to keep on going and and finding something that that will help eventually.

No sure. Do you think I mean, and I don't know if you have the answer to this because I don't I don't know to what extent you've seen, you know, anyone that could, you know, isolate one is usually multifactorial for most people, but if there is, you know, this thought that too many nerve endings or inflammation have occurred at the vestibule, you know, that's sort of a different treatment than someone that

But it will always include pelvic like I think, you know, whether or not we think there's like a hormonal association to your vestibular pain, like if you told me you'd been on birth control pills or something like that, then I would say, like, okay, maybe that was something that came about, whether or not you had developed like multiple yeast infections, or maybe even someone that was, you know, s suffering from something like an endometriosis, like pelvic pain or chronic

sort of pain with your cycle that maybe you've developed nerve endings in the area of the vestibule that's contributed. And then of course once you start clenching and and building that anxiety that's going to happen, your pelvic floor muscles are always involved. So I feel like the pelvic floor muscles and the treatment is a staple for whatever type of vestibular pain you have. But I don't know if like, you know, they had a if there was any type of identification of

D was it thought that this was a nerve ending, nerve or inflammation related? Was it thought that this was all pelvic floor? You know, is it a combination? More than likely, but

Yeah. Yeah, I so th so here's the thing, like it's it's something I've given given a lot of thought because on my podcast I've had, you know, great guests who and we go again really granularly in different subtypes of vulvar pain, vestibular pain, for instance, and different drivers. And the the interesting things is I'd never been able to see a practitioner who's able actually been able to like hypothesize the what was driving my pain. I I had like I suspect that it was part

Yeah.

Yeah.

partially hormonal and partially also like muscle muscular cause, but I I I can't really know that for sure. And I think like my story, like so many others, just shows how difficult it is to find a practitioner, get access to a practitioner who actually does like a differential diagnostic assessment. because in my case, I was just given the label Vulvodinia, which was good in some ways because then I I at least had some indication what was going on. I

Right.

Yeah.

I could, you know, do research on it and and start understanding what was happening, but it was still I was still very much subject to this like trial and error approach of trying treatments from my perspective. so yeah, I think that's a that's a unfortunately a huge like systemic failure that women don't.

Yeah.

And I mean, I think it's the case across the board globally. I think that when I go to international conferences and and like the Sexual Medicine Societies, ISSM and the World Sexual Medicine meetings, I do find that

most sexual pain related to w like I said usually sexual dysfunction for male and females. And so what I find is most pain related to sex in for women in countries around the world that when I interact with other doctors, you know, vaginismus is still the primary label in vulvadinia. And so I think, you know, our understanding of these things have evolved tremendously probably in the last you know 10 to 15 years. But if if if the

Mm. Mm.

the case is if if your practitioner's not been exposed to this and have an understanding of what it's like to be sort of what we call the sex detective that's trying to figure out what are the factors that are contributing to your pain, you know, then you get to a blanket term where you're just trying to, you know, kind of throw everything at it. And and if you find something that works, I'm sure enough treatment of the pelvic floor will help any of these causes. And so

Hm.

Mm.

I think, you know, we run into this problem, but I see it a lot in the international community because I think that we haven't been able to disseminate some of these algorithms as much and and there's just not as many people treating women's sexual pain.

Yeah, that's definitely my my view of it as well or my experience of it. And I mean we we met at Istwish and I was so inspired to see just how collaborative that community is and how how much those leading experts challenge each other and and in that way push the field forward. And but what I will say is from my vantage point, it seems like like the Atlantic Ocean is really divisive. Like that a lot of that information, a lot of that

latest research, latest clinical knowledge is not crossing to Europe where I'm from. And one example of this is I was speaking to a listener of mine recently and they had been to one of the top vulgar pain specialists in the UK and she had raised the point of neuroproliferation and the specialists didn't know what that was. And that to me was just

incredibly frightening to to to discover that because it just shows how di different these conditions are viewed and how little like dissemination of information there is, as you say.

Yeah. And I think that, you know, as someone that's on the board of directors with Ishwish, you that's one of the things we're always trying to figure out. When you know, our previous past president was from Italy and her big you know, Linda Vignosa, she Vignosi, she really wanted to really disseminate get this information, get more of the, you know, ESSM crowd into this. But I do think it's still predominantly like

you know, the male sexual like like I said, every time I go to these conferences, it's all penises that I see you know, and I'm like, hi, I'm the gynecologist treating vulgar stuff and vaginal stuff. You know, and it's like it's it's very it's very minimal and I don't know if it's still, you know

Hmm.

You know, h you know you know in the United States we think that, you know, Europe is very much ahead of us in terms of like sexual freedom and this and that. But from what I've seen, at least from the medical perspective, there's still this big disconnect and there's still maybe even like a, you know, h hierarchy that exists where like, you know, I'm the doctor, you're the patient, and this is you do what I say kind of thing. Whereas, you know, we're much more like, you know, we listen to our, you know, at least, you know, the ones that try to do this the best way that we can, try to listen to our patients and make it a a journey.

Yeah. Yeah.

Yeah, and I think the this the thing that frustrates me a little bit as well is on my podcast I invite experts from you know, global experts, right? But the pr like the majority of my guests are American. And that is due to two things. First, I think it's difficult to find experts who are vocal and who research these conditions in Europe and in other places of the world. And if I do find them, they are v they are often.

Don't want to come on my podcast. And of course, it's it's completely fine if they if they don't want to do that. But my but my sense is that there's a big difference in the way that or what they think their role is in terms of you know sharing their expertise, sharing their knowledge. And I think it's it's problematic that we don't have more voices from the research community or clinicians in Europe, for instance, who want to be vocal and wanna.

Even like challenge some of the new research coming out of the US or you know, because I think that's important. If we if we ultimately and at the end of the day really wanna push the the needle and move the field forward, then we need people to challenge each other, right? And so so that is something I think about a lot. Because if you look at like the the n the new research coming out of the US, it is it is very clustered as well, right? So I yeah.

Right. Yeah.

Hundred percent. Hundred percent.

That that frustrates me sometimes to see just how reluctant Europeans, other continents are in getting on things like my podcast.

I agree.

Yeah. Yeah.

I mean, even when I think about some of the patients that I've had that came to me from Europe, like, you know, sometimes it's because they want treatment for their low desire and they've done they've seen sexologists in in the European community and they are not getting to a point. And I've had a number of couples that came in from, you know, Denmark, from you know, the these areas of the UK, and you know, some of them just want to try like, you know, Addy and and Flavanth, you know, and and Violesi, 'cause it those medications are not available. And so we try to get them if

Know they're coming, I try to get them the meds so that they could at least try it while they're there. But I think that it's interesting. you know, even the fact that like it's hard to get some of the pharmaceutical regimens out there, even though I think you know there's global testosterone is not even available in the US, it's available in other countries. and so I I would love to figure out, you know, especially someone that's you know on the board of issues, like how can we bridge this gap? And and it's hard because I like I said, we have

present from president from Europe and that was one of her big agendas and it still was incredibly difficult to get other clinicians from other countries to to not only come I mean even even this year we're gonna have it in in Canada our Ishwish conference we're having it in Vancouver so we're hoping to if if we get it to into a more international community that we can get more people globally to because that's how we help women globally right is that you know we get more knowledgeable people that are

understanding the the latest w literature that's out there.

Yeah, exactly.

and so for you at this point, where are you in terms of of so you feel like you've gotten to a point where you're almost pain free or you're largely pain free? Okay.

Yeah, exactly. So I'm still dealing with a little bit of that hypertonicity in the pelvic floor, which is making like yeah, penetration still difficult. So that's what I'm working through and

But when have you gotten like a q-tip test and they've been able to look at your vestibule and say there's no tenderness on on the assessment?

Yeah, that is largely gone now, luckily. yeah. So that's that's really significant. but yeah, it's been it's been a long journey. almost six years. And that's nothing compared to a lot of people I talk to, right? So I've been very lucky relative to a lot of women I talk to.

yeah.

Yeah. How many years now?

yeah, yeah.

Yeah. Yeah.

sure. I think some people are over a decade and some of them, you know. And I think there's some, you know, within each within communities globally, like some pain with sex is just normalized to a point where it's not even like, okay, this isn't even something that we should treat, right? It's not even worth worth treating and and that kind of thing. Are most of the pe are do you find that most of the places that you've been to are 'cause i in you said you're in Norway right now, right?

Exactly. Yeah. Yeah.

Yes.

Do you guys have sort of global health like free health care for your for yourselves?

Yeah, it is the the the free health care or like the global access to healthcare is is really good in Norway, but for in terms of specialized care, there's I think two or three like Volvar clinics in Norway, one which is based in in Oslo. it is quite challenging to get in there. So I know a lot of people end up just going private. but I was

No.

So that's a gov that's a government approved facility, like a a facility run by the government.

the the public one? Yeah, exactly. Yeah. So it's a that's that's fully public. and I felt very fortunate that was where I recently got the pelvic four Botox and you know got that completely covered, which is amazing and a huge privilege compared to a lot of other countries. So so it's brilliant when it works, but it's I I had to I was refused by seven gynecologists before getting access to that.

Yeah.

What?

clinic because no one wanted to take on me knowing that I had this diagnosis of vulvadinia. So like the access to care, even for someone like me who is very capable of like advocating and pushing and saying that no, I actually need this and this, the the barriers are still really high. So yeah.

And so do you have to get referred to that clinic? good.

Exactly. Yeah. So the the I was I was in this awful catch of I'd been referred from my GP to a gynecologist because I need a referral from a gynecologist to get into the specialized boulevard clinic. But none of the gynecologists wanted to take me on. So my GP went directly to the Boulevard Clinic saying this is a situation we've gone like five, six months not getting her into any gynecologists. Can you take her directly? And they said no. So it's

Mathilde (24:23.786)

It's you really have to push and you need a GP who's willing to fight, which is not how it should be. But it's just I keep on being reminded why I do this because it is like the bar is literally in hell. Like you have to push so hard to get just basic care.

So basically like you like is it easy for you to get in with the G P

Yes, that's fortunately very easy.

Okay, and then then the OBGYN is considered a specialist and then the Volvart Clinic beyond that even.

Yeah. Exactly. Yeah. So it's like a you have to go through two two steps to get to the specialized Vulver Clinic.

Yeah.

Yeah. I mean there's a there's a term for, you know, what some like social scientists have referred to as patients who are complex like like bulbidinia and endometriosis and genopolyprin, they call it the heart sink patient, or like the

Hmm.

Clinicians who are in a bit you know, and and I I've been in a situation before I had my own practical practice where I would see like 20, 30 patients a day. And you know, to to get a good assessment for you, it's you know, you really do have to spend time with patients, right? You have to spend time do a thorough exam. It's not just you know a pelvic or a pap, you have to do a vulgar exam, you have to look at the clitoris, the pelvic muscles. These things are not usually taught or assessed. And so in busy clinics, you know, what we call the

that that's what they were called. They were called heart sink patients because the clinician's heart would sink, feeling that they couldn't help that patient, right? Like they couldn't help that patient. They didn't they didn't have either the knowledge or the skill or the time, right?

Yeah. There was a really brilliant paper or sorry, a a piece that came out in The Lancet recently from a I think she's based out of Oxford, a researcher who was talking about her twenty year journey of trying to get help for what turned out to be hypermobile Eller Stanglos syndrome. Did you read it? I think her name was Lucy Folkes or something. I I'm gonna send it to you afterwards and it's it's titled

Uh-huh,

when doctors don't care or what happens when doctors don't care or something like that. And she she writes so brilliantly about what happens in cases like her where you have this like cluster of really complex conditions and keep on f falling like between silos within medicine and no one really has, as you say, like the capacity or time to really understand what's going on and how you know unrewarding it is for a clinician to

take on a case like that because it's just inevitably more difficult to to solve, if you will. So but I thought that was really beautifully written from like the the patient's perspective.

No, that is very that's and and I think that's true. I feel like a lot of patients might get the impression that most clinicians don't care. I have to say, as someone who previously worked in an academic center, you know, decades ago when I was starting and everything,

I always felt, you know, that heart sink because of the system I was in, right? And the fact that I was not taught anything on this, right? Like I had to self-learn sexual medicine through Ishwish and through like really all the programs that are available. And like we're pushing the envelope. I'm trying to teach the residents and the students now. but the truth is a lot of what we know about vestibuline has been in the last, you know, ten to fifteen years. And that's, you know, after I would even train. So I think it it's

it the onus really become comes on the clin the physician to say like I need to go see what the latest data is or to see to understand because medicine evolves right and and I feel like when you don't when you're not in a system that allows that you know you do you can only you you silo the patient you are the body part right I used to joke that like I only did the pelvis and now I treat women's whole health because you know I have the time to do it right like I have the time to do it I have the time and I have the experience but I feel like you know most systems

Yeah, yeah, it is it is daunting, like br I I love what, you know, tight lipped are doing in terms of trying to bridge the gap in you know, training of OBDYNs in residency training in the US. But even like beyond that, right, as you say like continuous education as a clinician, like there seems to be it's it's really frustrating to look at it from the outside and see that, you know, there are amazing developments happening, but it's just not reaching the people that it needs to reach.

Well.

so yeah, it's a it's a complex, large problem. And I think we should all be outraged by it.

Yeah. And then I thought this

A hundred percent. And I think then there's a lack of humility in so many physicians, right? That, you know, they're like, well, this patient is trying to tell me something as if I don't know. Yeah, you don't know because you're not living with it. And so you have to actually go and try to figure, you know, that's exactly you know, when I started my own practice in twenty twelve, that was the reason I looked for ishwish and I looked for ISSM was because in the and and SMSNA, I wanted to help the a couple of the patients that I have seen for the first time. Like

I don't know. I would I didn't learn any of this. All I know is vaginismus and all I know is public floor PT. There has to be more that I can do, right? And so that's what inspired me to continue like my journey in this area and continue med but I

Yeah. Yeah, we're lucky to have practitioners like you. I'm curious, like as as someone who's been in this field for some for some time, how do you think because something I think a lot about is like general awareness of vulvavaginal pain conditions. And I'd love to share my perspective on it, but I'm curious to see like what your perspective is in terms of whether whether you see improvements in just general mainstream awareness on them.

Hundred percent. I think social media has made a

In terms of women's women's health and social media has been a game changer, right? Like I always say that we we were taught, like just as an example, we were taught in residency that cervix had no nerve endings and women didn't need pain control for you know these major procedures that are invasive and they hurt. And so, you know, obviously, like for someone like myself, when I started private practice, I saw the type of pain that patients continually settings because I had only to to do what was available.

Yeah.

Mm.

Yeah.

Available to me. But when I went private in my own, I said, I gotta give these patients some, you know, numbing medications, some injections, some pronox. You know, I have to offer them sedation. This is not okay, you know. And so it took actually like this TikTok trend of people showing themselves getting an IUD inserted for like the American College of OBGYN to come out with a statement saying maybe we need to do better for pain control, right? I mean, the system I always say that, and I've I've taught I tell this to people all the time when I'm teaching, is that

Yeah. Yeah.

the systems that have created women's health and OBGYN are based in like really

really sexism and racism, right? Like most of the surgeries that we learned are from, you know, on the backs of slaves that were, you know, unanesthetized and treated. Most of the procedures and and other things are based on assumptions about women and you know hysterectomy, like removal of hysteria, you know, all the things that we think about, everything being psychosocial or psychosomatic for them. And so, you know, and then no doubt people get depressed and anxious when they're suffering.

Mm.

Yeah. Yeah.

You know, and sometimes the suffering can lead to biologic issues, but it's not just one or the other. You have to treat it like a whole, right? And so

Mm.

Yeah, yeah, yeah. No, that's encouraging to hear. And I I mean, again, I was so encouraged to be at Issuish and and see just what is happening in that community. It's it's amazing and it's so it gives me a lot of hope. But again, I feel like the when when it comes to vulvo vaginal pain conditions, I feel like we're still lagging a lot in terms of like acknowledging it. And I get a lot of hope from looking at, you know, adjacent women's health concerns like

I mean

endometriosis or even like the whole you know surge in attention that's come to periomenopause and and menopause which is amazing and not a day too late right but and it's interesting there's you mentioned it at the beginning this phrase that I think gets repeated a lot in the space of like when we when we talk about vulvaginal pain is you are not alone and it's it's true right like the statistics tells you it's completely factually true it's very common.

Might.

Yeah. Yeah.

Mm-hmm.

But I will say, like when I was in the thick of this, like really at my worst, I did feel completely alone because I wasn't seeing anyone. I wasn't seeing faces crucially. And I something I find quite amusing but also quite tragic, is if you go and Google Volvadinia, what comes up is always the same stock photo.

repeated endlessly, which is some variation of a woman who's sitting at the edge of a bed, head in her hands, face completely hidden. And like that is the visual language that we've built around these conditions. And I think it tells you everything about how we think about them as like, yeah, it's like it's like something to be hidden, something also defined by its worst moment. And I think that image does not represent

They they're like least, yeah.

The women that I speak to, because the patients that I know have been through really like an odyssey. They have fought for their diagnosis often, done their own research, advocated for themselves in room after room, and they're not like collapsed at the edge of the bed. But what I think is really Yeah, exactly. So that's something I think about a lot is that if you look at like again, adjacent like women's health concerns, you have, you know.

They're warriors. They really are, you know.

People like Chrissy Teagan speaking about endometriosis and Courtney Cox talking about urinary leakage, like they they are standing for something that is very common and very real, but I think the silence that still lives at like the intersection of women's health and women's sexuality and pain during sex, that silence is still so loud. So it's it's something that I think about a lot.

I agree. Yeah. No, I see your point.

Yeah. No, you're right. Even when like Megan Trainer came out and discussed her battles with what was probably, you know, vestibulodynea, you know, hormonally associated of some type, but you know, Chicago vaginis, you know, all the comments were like, It's crazy, like, you know, like her partner was too big for her. You know, just the kind of things

You know, why would she talk about this, you know, in in in public and all the things and you're just like I mean, people have to, right? That's because it is very isolating. I mean, I also treat a condition called persistent genital arousal disorder. And because it has like this component of what feels like arousal, but it's just a form of genital pulvic pain, really, you know, it's like an abnormal pain sensation in the vulva. People are so dis so extra dismissive, like, you're aroused, big deal, enjoy.

It like da da da, you know, and I mean these are like high rates of suicide, adult suicide addly with these patients, and and it's very, you know, so even when patients come to me and like the fact that I have it defined on my website, they'll sometimes say, just seeing that there's some term for this has been life life-changing for me because I've been living with this for so years, so many years, thinking that you know I'm crazy or something's wrong with me, and da-da-da. And so I I think we have a long

way to go with low vaginal pain and sexual discomfort and all the things because we're still probably less than one percent of the research right like it's just a sliver of research that we're getting and most of it's self-funded right is wish we put a lot of money into research you know the gov the NIH research is really going to cancers which is great but you know what about the other common things that women are experiencing so

Yeah.

Yeah. Yeah. It's a huge resource.

Tell me tell me Matilda what what so why did you start your podcast and and how how do you feel like it's changing sort of the landscape and globally?

I think so part of the reason why I started the podcast was I and I was mentioning my my story. I I think I broke off right at the point of, you know, where I was on the verge of giving up of just like accepting living with this pain and not trying anything new. And then I came across a like the subreddit for Volvadinia and Vaginismus. And up until that point I just dismissed r Reddit as something that was for like

Yeah.

young guys and gamers, but what I found was this like bustling, super supportive community of women and people who were going through similar experiences to mine. And what I find found really profound was that the like stories were very different in terms of onset of pain, like type of pain, you know, diagnosis, what treatment helped, what didn't, but the shared

Yeah.

experience the emotional experience of it all was so similar and just resonated so much with with my own. So I was really moved by that and really encouraged. And so I decided to like initiate a group call for people on that subreddit. And within 24 hours we had like 40 people who wanted to join. And that to me I think just showed just how

Yeah.

desperate people were for you know connecting and actually sharing their story, finding other people who were going through the same. And I also again found like these were people who were extremely resourceful and very proactive because they needed to be. And I just felt like the gap was really large in accessing information that could actually help you try to understand like, okay

I've tried this and that, and that's not getting getting me anywhere. Where do I go next? Because unfortunately the case is like a lot of women have to become really like adamant advocates to get the care that they need, right? So once I started understanding more and and finding some really good experts on this area, I really wanted to try to democratize access to that information basically. And the best vehicle I could find was a what was a podcast.

and so that's really how it emerged. And I'm I was really surprised. I I kind of made it for to be the resource that I needed when I was going through it all of like again, like quite in-depth information, understanding different drivers of pain, different treatments, like what are your options? But I was quite surprised to see that actually a lot of my audience are also like healthcare practitioners and clinicians.

Yeah. Yeah.

So that to me has been really encouraging as well to just see how open they are to again like learn new things, but also hear patient experiences because I also interview other people who are in the same situation as me. and I think that's really powerful to to have that lived experience portrayed on in a in a long form podcast way. So yeah.

So and had to come up with a title. I love it.

So originally it was actually called Baobo, who which I love the name because it represents this Greek goddess who's like depicted as a walking vulva. she's she's hilarious, she's like the goddess of laughter and light, and I really liked that audacious message that came with her, but no one was able to pronounce it and it it just didn't resonate. So I kept her in my

Yeah.

Yes.

I mean hopefully.

in my heart as like a as a mascot, but I as a tagline, I always liked the world's tightest community because it does really feel like this like slightly absurd collection of people who don't really have anything in common except the fact that, you know, the revolver or vagina hurts and they are, you know, want to find someone else who's who's in the same situation. So

it just always put a fi smile on my face. the world's tightest community. so yeah, there's w that's where that's from.

Well that's great. And and tell me like what what's your what's your plans like in terms of like building this community and and trying to get more global support? You know, how can we help? How can Ishwish help? Like what can I take back to the teams that I know?

Yeah, I'm glad that you asked that because I wanted to talk to you about it because I think I'm always looking for ways in which we can like continue trying to deliver on what I'm hoping that the podcast does, which is like bring the most up-to-date, most evidence-based information that we have on these con conditions, both to patients and clinicians. So what I'm working on very still very early days, but is a more structured

On-demand version of that, which is even more scientifically rigorous and which actually tries to. yes, we we I'll I'll share all the details with you, but kind of like on-demand courses on different modules within vulvo vaginal things that pertain to vulvo vaginal pain and spawn spanning across different areas of medicine, because that's what I'm seeing more and more as well, is that

Like almost a master class type of thing.

It does like for some of the most complex cases, it requires a very much a multidisciplinary team and multiple different areas of medicine and just really want to try to do something to more systematically help promote that like continuous medical education specifically on this. Yeah. So I will try to involve you in that. I I would love to have you involved in that.

Amazing.

Yeah, that's amazing. I love that. Yeah, a hundred percent I

to do that. do you think that the clinicians in like the global community or s like the ones that I see obviously at sexual medicine conferences, like they're there because you know of the same reason I go, right? but I don't know about the people that don't know about these conferences or don't have the time to attend or you know don't even know that what they don't know, right? So what what do you think? I mean is that because you know part of what happens in sexual medicine is that you

Yeah, yeah.

You're a product of of all the biases that you grow up with and all the understandings of you know culture and and gender and sex and all the things, and it's just so intertwined because it's so biopsychosocial that like if you come in as a clinician with so much bias, like these women, they're whiny, there's in their head, da-da-da, like you're you're gonna you know automatically feel like dismissal is the best route to go, which I'm very much opposed to, right? I think this is causes so much harm to our patients.

Do you think that the ones that don't come and don't know about these are are they have you found a spark of interest like your GP who so lovely advocated for you? Like tell me like what your thoughts are on on the clinicians out there.

Yeah, that's a good question. So I think like my my represent or like I I think I'm quite biased as well in terms of the people that I speak the most to are, you know, the ones who are who are very interested in this and very much like at the forefront. But I do like whenever I can I speak to people about this topic because I think we just we need to have more mainstream awareness of it. I will say like the the clinicians or like my GP for instance that I've

Yeah.

you know, received help from recently, I do think there's a there's a willingness to listen and there is a willingness to to learn. I think I I think it comes down a little bit again to this issue with just how difficult it is for women going through this to come forward and openly talk about it. So I think and I sometimes also am like

If you look at the prevalence of these conditions, like the the ranges are really wide, right? Which is a problem. It's like a data problem. But if you think it's something like, you know, eight to twenty-eight percent are like the ranges that I've seen of people who will experience it during their lifetime. sometimes I I I'm just baffled by how large the gap is between how common this is and how little focus there is on it. So I think part of that is probably from just

just how much secrecy and taboo there are around these topics. So I think a lot of clinicians just just don't have it in their you know, in in their mind that this is actually a problem worth taking seriously. but I do think

And they so they don't they don't ask then and a patient's less likely to tell you if if if they're not asking, you know, so

Yeah. Yeah. And I do think like I I feel very optimistic about you know, this community that that I have, like that is truly global and it's it's increasing in size and it has a lot of momentum, I feel like, and people are very keen on, you know, doing something about this huge problem. And I think there are some interesting ways in which those

Patient groups can actually push locally where they are to find like the heroes in their city, wherever that is, and in that way try to create more awareness and more pressure for like the wider you know clinicians in that area to actually take this seriously. That's at least how I see it. That there there can be, you know, force and momentum that comes from people daring to.

you know, acknowledge this is a problem that they're they're going through and dare to like continue pushing for the help that they need. I'm I'm conscious that, you know, a lot of the onus falls on the patient and it shouldn't be like that, but that's just where we are right now. And so yeah, that's kind of how I think of it.

We always say no one's coming to save you. So it's really you know up to us to advocate for ourselves, which unfortunately is the state of of medicine, I guess, or women's health in general. So what what final thing do you want the listeners to think about or remember what's your I call it the vagilante verdict, but what because my my husband jokes the vagilante verdict. My husband jokes that my listeners are all vagilantes.

Yeah.

Yeah, yeah.

See you there again, the

I love this.

So like what's your hot take? What's your hot take for the listeners to end this?

a hot take for listeners. I think for any like patients who are listening, I who are dealing with vulva vaginal pain, one of the key things that I always try to get across is unfortunately, so many people are told there's not really anything that you can do. we don't know why this happens. We there's really nothing you can do. We can try this and that, but we don't really know. That's just not true. And there are ways in which you can actively try to

you know, address what's actually happening. So that's that's the one thing that I'm very passionate about getting across. and then I guess for clinicians, what I'd probably want them to to leave with is that just awareness of by the time a woman gets to your room, she has almost certainly been through something. Like she's been dismissed, she's been minimized, she's been told it was in your head or or told there was nothing to be done.

and she's been questioned, and you know, that's not a blanket criticism. I know I've spoken to some amazing clinicians, but the system is just underprepared. And what I'd ask is like, believe the pain, investigate what's happening, take this seriously, because the person in front of you isn't a difficult patient. She's a patient who had to do your system's job for you.

Yeah. It takes so much and test I always say this every time 'cause I usually you're t so right, every time I see a new patient with these issues, seven I'm their seventh or eighth clinician, and I think it takes so much intestinal fortitude to come forward again and tell your story again. And sometimes they're really pissed off when I meet them, you know, and I get it.

And she deserves respect for it.

Yeah. Yeah.

And sometimes they're like sometimes they're rude to my staff because they just don't know if it's gonna help or you know, whatever. And I always tell my staff like we have to like understand where they're coming from. They're coming from a system that's been failing them and they're expecting to fail again. And we're gonna we're gonna succeed with them, but we have to like, you know, give them that grace too. So

Yeah, yeah. Yeah.

Amazing. Well thank you so much, Matilda. Tell everyone where they can find you. So that we'll put it all in the show notes button.

Well yes, so they can listen to the podcast wherever they listen to it. It's called the World's Tightest Community and I'm also on L or not LinkedIn. Well I am on LinkedIn, but Instagram and TikTok primarily at the World's Tightest Community as well.

Wonderful. Well, I love what you're doing. I can't wait to collaborate with you more and thank you so much for bringing your story forward once again. I know it's not easy to talk about these issues and so we really appreciate because you don't know who you're gonna touch when you tell your story or what clinician is gonna be like, man, I didn't think about that. So thank you so much.

Hmm. thank you. Thank you for having me on and thank you for the amazing the work that you do.

100%. thanks everyone for listening to Guy No Girl Presents Sex, Drugs and Hormones. I'm Dr. Samina Rahman. Remember, I'm here to educate so you could advocate for yourself. Please join me next week. Remember, I'm a practicing OBGYN and practice in Illinois and California. And I present a lot of data to you. I'm not your clinician though, so you should always you know get a medical your medical opinions and it and medical

treatments from the people taking care of you. Thank you so much.