The World's Tightest Community - A Podcast About Vulvodynia, Vaginismus & Women's Pelvic Pain

Mathilde Olstad
  • 0.0 (0)
  • Sexuality
  • Updated Semiweekly

Chronic pelvic pain doesn't have great PR. Vulvodynia, vaginismus, painful sex, pelvic floor dysfunction - conditions that affect 1 in 4 women and still get treated like a secret. This podcast is trying to change that. The World's Tightest Community is a weekly podcast hosted by Mathilde - a patient-turned-advocate who built this space out of her own experience with vulvodynia and vaginismus. Each episode goes deep into the conditions that millions of women live with but few feel safe naming: vulvodynia, vaginismus, vestibulodynia, pudendal neuralgia, and the wider landscape of chronic pelvic pain and painful sex. Mathilde speaks with gynecologists, pelvic floor physiotherapists, sex therapists, psychologists, and researchers working at the front edge of women's sexual health - translating clinical knowledge into something actually usable, alongside honest conversations about diagnostic delays, medical gaslighting, and what it really costs to navigate these conditions. You'll leave each episode with more language for your experience, clearer questions to bring to your next appointment, and the specific relief of knowing someone has thought carefully about this. New episodes every week. Follow wherever you listen, and find the community on Instagram. You are not alone in this. Not even close.

  1. Mast Cells and Vestibulodynia: The Inflammation Root Cause and A New Treatment Trial I Dr Jill Krapf

    6d ago

    Mast Cells and Vestibulodynia: The Inflammation Root Cause and A New Treatment Trial I Dr Jill Krapf

    For years, the hormonal and muscular causes of vulvar pain have become easier to understand and treat. Inflammation is the part we still understand the least - and it may be one of the biggest missing pieces in provoked vestibulodynia. Dr Jill Krapf returns to the podcast for one of the most cutting-edge conversations we've had on vulvodynia. She's a gynaecologist specialising in vulvovaginal disorders, the co-author of When Sex Hurts, and the principal investigator on a brand new clinical trial testing a topical treatment for provoked vestibulodynia. In this episode: What a mast cell is and why Dr Krapf calls them the body's alarmsThe difference between inflammatory, hormonal, muscular and neuroproliferative vestibulodyniaWhy "everything looks normal" is the hardest case to treatHow yeast infections, their treatments, and everyday irritants can trigger mast cellsThe link between mast cell activation, Ehlers-Danlos, hypermobility, POTS and IBSWhy vulvar pain can be a sign of a whole-body processWhy surgery has been the only proven option for neuroproliferative pain, and its downsidesH1 and H2 antihistamines, mast cell stabilisers, and other current optionsThe new topical ketotifen trial and how to take part About the study: Dr Krapf and the CVVD are running a randomised, double-blind, placebo-controlled trial of a topical ketotifen cream. Ketotifen is a well-established mast cell stabiliser that has never been studied as a topical treatment for vestibulodynia - and was the number one therapeutic identified at the 2024 Vulvodynia Research Summit. The trial runs over roughly 15 weeks with a screening visit plus four study visits, supported by a grant from the National Vulvodynia Association. The study is enrolling adults aged 18 and over with secondary provoked vestibulodynia: people who were once able to insert a tampon, dilator or have intercourse without pain, and now experience pain with insertion. You do not need an existing diagnosis to take part. Primary or congenital cases do not qualify Three locations - you need to be local or able to travel for four to five visits: New York City - Dr Andrew GoldsteinWashington DC - Dr Chailee MossTampa, Florida - Dr Jill Krapf To find out if you're eligible, email researchjkmd@gmail.com or research.cvvd@gmail.com. Connect with Dr Jill Krapf: Book: When Sex Hurts@jillkrapfmdWebsite Connect with Mathilde: @theworldstightestcommunity theworldstightestcommunity.com • Support the podcast This episode is sponsored by Pelva. Use TWTC10 at checkout to receive 10% off your first order.

    53 min
  2. The gap in OBGYN training: what doctors never learn about vulvovaginal pain I Tightlipped

    May 25

    The gap in OBGYN training: what doctors never learn about vulvovaginal pain I Tightlipped

    Why do so many people with vulvovaginal pain leave their OBGYN's office feeling dismissed - or worse, like the problem is in their head? The answer might have less to do with individual doctors and more to do with what they were never taught. In this episode, I speak with Noa Fleischacker, co-founder and executive director of TightLipped, a grassroots patient advocacy organization working to change how people with vulvovaginal pain access care. Noa comes to this work from her own experience as a patient - including going under general anesthesia just to get a pelvic exam - and has since built one of the most compelling patient-led advocacy models in this space. We talk about why vulvovaginal pain conditions like vulvodynia, vaginismus, and pudendal neuralgia are almost entirely absent from OBGYN residency training, and what TightLipped is doing to change that - both at individual teaching hospitals and at the national standards level. Noa shares what hundreds of patient stories have in common, why the burden of being a "perfect patient advocate" is an unfair and unrealistic expectation, and what it actually looks like to knock on the doors of hospitals and demand change. We also get into the barriers that keep the most underserved patients from ever finding community or care, and what it would take to reach them. Whether you're someone who has felt dismissed by a doctor, is trying to understand why care is so hard to access, or wants to get involved in changing that - this episode will give you a lot to sit with. In this episode: Why vulvovaginal pain is almost entirely absent from OBGYN residency training in the USWhat TightLipped's campaign to change medical education actually looks like in practiceThe most common patterns across hundreds of patient stories - and what they reveal about systemic failureWhy becoming a highly informed self-advocate is not the solution - and what isThe specific barriers that prevent undiagnosed patients from ever finding care or communityHow TightLipped approaches hospital departments - and what messaging actually landsThe case for separating obstetrics and gynecology as specialtiesWhat international expansion of this model could look like Connect with Noa and TightLipped: Website: tightlipped.orgInstagram: @tightlippedorg Connect with Mathilde: Instagram: @theworldstightestcommunity Website: theworldstightestcommunity.com Support the podcast

    49 min
  3. Vulvodynia and Healthcare Access: Refused by 7 Clinics Despite a Diagnosis

    May 20

    Vulvodynia and Healthcare Access: Refused by 7 Clinics Despite a Diagnosis

    I recently hit a wall that I, of all people, should not have hit. And it reminded me exactly why this podcast exists. But this episode is also about something else. I've been self-funding this podcast for about a year, and I'm now at the point where I need to figure out how to keep it going. That means sponsorships, and possibly other things too - and I want you involved in that conversation. If there's a brand you love, a company you think really gets this community, or a product you actually swear by - please tell me. DM me, comment, send a voice note.  I'm also opening up the option for people to contribute directly if they feel called to - no pressure at all, but sharing the link here if that's something you want to be part of.  And if you know of any grants or women's health funds that might be a fit for something like this, send those my way too. I'll follow up on everything. In this episode: A story that made me angry - and why I think it will resonate with a lot of youWhy I started this podcast, and what I'm trying to buildHow I'm thinking about funding it going forwardWhat I'll never do (and why)How you can help - right now, in whatever way works for you How to help Know a brand that should sponsor this podcast? Tell me: mathilde@theworldstightestcommunity.com or DM me @theworldstightestcommunity Want to contribute directly?  Know of a grant or fund? Send it here:  mathilde@theworldstightestcommunity.com or DM me @theworldstightestcommunityOr just share this episode with someone who needs it :)  Connect with Mathilde Instagram: @theworldstightestcommunity • Website: theworldstightestcommunity.com

    18 min
  4. Vaginismus and Pregnancy: TTC Options, Birth Planning, and What Happens to Your Pelvic Floor

    May 11

    Vaginismus and Pregnancy: TTC Options, Birth Planning, and What Happens to Your Pelvic Floor

    What happens to your body - and your pelvic floor - when you want to get pregnant, and you have a history of vaginismus or pelvic pain? In this episode, I speak with Dr. Saige Evans, an occupational therapist with a clinical doctorate in occupational therapy and the clinical director at Bloom Pelvic Therapy in Tampa Bay, Florida. She leads a team of pelvic health OTs and PTs across three clinics and also sees clients herself, specializing in sexual health and pelvic pain. She also has her own history of vaginismus - which she brings openly to this conversation, including her experience of trying to conceive and giving birth. We start before the logistics - with the feeling. The specific weight that lands when you want to have a baby and you're not sure your body will cooperate. From there we get into the full picture: conception options when PIV isn't possible (including at-home insemination kits and what the fertility clinic pathway actually looks like with pelvic pain), how to think about ovulation tracking when anxiety makes everything harder, and what's really happening to your pelvic floor across pregnancy - including what relaxin actually does and doesn't do. We talk about birth planning in detail: positions that help a hypertonic pelvic floor let go, the difference between pushing and getting out of the way, and how to think about C-section versus vaginal birth. Saige also shares things she wasn't prepared for - including catheters, cervical checks, and what she wishes she'd had support around in the hospital. And she ends with something I think a lot of people need to hear: why you shouldn't wait. Whether you're in the early stages of thinking about this or you're already navigating pregnancy with a pelvic pain history - this one covers a lot of ground that's hard to find anywhere else. In this episode: The emotional weight of wanting a baby when you have pelvic pain - and where those questions startConception options when PIV isn't the path: at-home insemination kits, IUI, and moreOvulation tracking - when it helps and when it makes things harderWhat actually happens to your pelvic floor across pregnancy, including what relaxin does and doesn't doBirth positions and breathing strategies for a hypertonic pelvic floorC-section vs. vaginal birth - how to think through it when you have pelvic painCervical checks, catheters, and what nobody tells you beforehandHow to advocate for yourself with your care team - and what to brief your partner onWhy you shouldn't wait to seek support, even if everything's about to change Connect with Saige Evans: Saige's InstagramBloom Pelvic TherapyBased in Tampa Bay, Florida (three locations: Tampa, St. Petersburg, and Lutz) Connect with Mathilde: InstagramWebsite

    59 min
  5. Vulvodynia, Desire, and the Diagnostic Odyssey: One Writer's Journey from Shamans to Sex Toys

    May 4

    Vulvodynia, Desire, and the Diagnostic Odyssey: One Writer's Journey from Shamans to Sex Toys

    What happens to desire when your body becomes unpredictable? Sara Sturek is a writer and founder of Writing Shamelessly, whose essay "From Shamans to Sex Toys" is published in Women's Health magazine. She has lived with hormonally-mediated vulvodynia since she was 21, and she writes about desire, sexuality, and the diagnostic odyssey with an honesty and literary precision that's rare in this space. In this episode, Sara walks me through her full journey — from the first gynecologist appointment that sent her home with Advil and a bath suggestion, through months of worsening pain she kept trying to push through, to the pelvic floor PT who finally identified a hormonal component. We also cover the long search for answers beyond the physical: the Valium suppositories, the CBD lube, the Reiki, the shaman in New Mexico who told her she was abused in a past life. And we spend real time on what this journey did to her relationship with desire — the fear that slips in before sex, the dissociation during it, the moment she realized she was the only person in the gynecologist's office who cared about her pleasure. A sex therapist helped her find a new framework: starting over, lowering the heat, and extending herself a lot more grace. Whether you're still in the thick of your own odyssey or have been looking for someone to put words to what this does to your sexuality — I think this one will stay with you. In this episode: How Sara's vulvodynia started — and why it took months to realize something was seriously wrongThe hormonal component: going off birth control and what shiftedThe diagnostic odyssey — from Reddit threads to pelvic floor PT to a shaman in New MexicoWhat desire and arousal actually feel like when you live with vulvodyniaThe dissociation that happens during painful sex — and what helped Sara stay presentWhy her gynecologist visits kept glossing over her libidoThe "boiling pot" framework her PT gave her for understanding flaresWhat sex therapy added that physical treatment couldn'tWriting Shamelessly: Sara's creative writing consultancy Connect with Sara Sturek: Instagram: @sassyy_assEssay: "From Shamans to Sex Toys" — Women's Health: https://www.womenshealthmag.com/sex-and-love/a70848271/vulvodynia-sexual-dysfunction-personal-essay/ Website: writingshamelessly.com Connect with Mathilde: Instagram: @theworldstightestcommunity Website: theworldstightestcommunity.com• Email: mathilde@theworldstightestcommunity.com

    51 min
  6. Vulvodynia, Vaginismus, and Pelvic Pain: Start Here If You're New

    Apr 27

    Vulvodynia, Vaginismus, and Pelvic Pain: Start Here If You're New

    If you're new to this podcast - hi! I'm so glad you're here. This is the episode I want you to start with. Whether you've just been diagnosed, you've been searching for answers for years, or you typed something into Google at 2am that you've never said out loud to anyone - you're in the right place. In this solo episode, I walk you through the basics of chronic vulvovaginal and pelvic pain - what it is, the conditions that fall under this umbrella (vulvodynia, vaginismus, vestibulodynia, pudendal neuralgia, interstitial cystitis, lichen sclerosus, endometriosis +++), why so many of us go undiagnosed for years, and the one statistic that changed how I see all of this: 1 in 4 people with vulvas will experience pelvic or vulvovaginal pain at some point in their lives. I also share why I started The World's Tightest Community in the first place, what this podcast can be for you as a resource, and the most important thing I can tell you if you're in the thick of it right now: pain down there is not a black box. There are root causes. There are treatments. There are people on the other side of this. And you are nowhere near as alone as you feel. If you're scared, exhausted, or just looking for somewhere to start - this one is for you. Connect with me! Instagram: @theworldstightestcommunityWebsite: theworldstightestcommunity.comEmail: mathilde@theworldstightestcommunity.com In this episode: The 1 in 4 statistic and why it mattersThe most common chronic vulvovaginal and pelvic pain conditions explainedWhy pain down there is not a black box - and the real root causes behind itWhy most doctors aren't trained in vulvovaginal pain (and what that means for you)How to start advocating for yourself in medical appointmentsWhy "the world's tightest community" - and what this space is really aboutHow to use the podcast as a resource and where to go next• A reminder that people do get better, and what that actually looks like

    13 min
  7. CBD for Pelvic Pain: Do Suppositories Actually Work for Vulvodynia and Vaginismus?

    Apr 21

    CBD for Pelvic Pain: Do Suppositories Actually Work for Vulvodynia and Vaginismus?

    Can CBD help with pelvic pain - and if so, how does it actually work? In this episode, I speak with Tamar Hill, co-founder of Medroots, a company making CBD and low-dose THC suppositories for pelvic pain, vulvodynia, vaginismus, dyspareunia, and sexual health. Tamar is a former biology teacher turned entrepreneur, and she brings both the science and hard-won knowledge of navigating the CBD regulatory landscape. We cover the endocannabinoid system and why our bodies have cannabinoid receptors concentrated in reproductive tissue - and what that means for people managing chronic pelvic pain conditions including vulvodynia, vaginismus, endometriosis, interstitial cystitis, and dyspareunia. We talk through how CBD suppositories work, why delivery method matters for pelvic pain specifically, how low-dose THC differs from high-dose, how magnesium supports muscle relaxation alongside CBD, and the research barriers that make formal clinical studies on CBD cost-prohibitive. Tamar also walks through exactly how to evaluate a CBD product - including the one test that separates a quality product from a marketing play. I also share my own experience using Medroots' suppositories for penetrative pain, and what I noticed. Whether you've been curious about CBD suppositories for pelvic pain, tried CBD without much guidance, or want to understand the science before you decide - this one is worth your time. Want to try the Medroots CBD suppositories? Head to this link and use code TWTC20 for 20% off at checkout. In this episode: CBD for pelvic pain - what the evidence actually saysThe endocannabinoid system explained - and why it matters for vulvodynia and vaginismusWhy CBD suppositories may work better for pelvic pain than oils, gummies, or tincturesLow-dose THC for pain and pleasure - why dosage is everythingCBD and vaginismus - how muscle relaxation and anticipatory pain connectMagnesium in CBD suppositories - what it does for hypertonic pelvic floorCBD for endometriosis, interstitial cystitis, dyspareunia, and IBSHow to read a CBD product label - full panel third-party testing explainedFull spectrum vs broad spectrum vs CBD isolate - what the difference means for youThe legal status of CBD and hemp in the US - and what's changingMathilde's personal experience using CBD suppositories for penetrative pain Connect with Tamar Hill / Medroots: Website: medroots.comEmail: info@medroots.comInstagram: @medrootscbd  Connect with Mathilde: Instagram: @theworldstightestcommunityWebsite: theworldstightestcommunity.com

    43 min
  8. Pudendal Nerve Entrapment Surgery: One Woman's 15-Year Road to the Right Diagnosis

    Apr 13

    Pudendal Nerve Entrapment Surgery: One Woman's 15-Year Road to the Right Diagnosis

    What does it mean to do everything right for fifteen years — and still not get to the bottom of your pain? In this episode, I speak with Carli Cutchin, a writer and disability advocate with a background as a comparative literature scholar. Carli has lived with pudendal neuralgia for fifteen years and writes about chronic pain and disability for publications including Ms. Magazine. She is one of the sharpest thinkers I've come across on this topic, and this conversation goes well beyond the personal story. We go into Carli's full fifteen-year journey — from the initial onset of pain, through years of PT, nerve blocks, and conservative treatments that provided only partial relief, to a devastating relapse in 2020 that left her mostly bedridden. We cover the eventual diagnosis of pudendal nerve entrapment, what that actually means and how it differs from pudendal neuralgia, and the decompression surgery with Dr. Hibner that she wishes she'd known about much earlier. We also dig into the ideas underneath all of it — how medicine frames chronic pain, the language it uses for these conditions, and what Carli sees as the specific cost of those frameworks for women. Her constructivist perspective on this is something I found myself thinking about long after we finished recording. Whether you're navigating pudendal neuralgia yourself, wondering whether entrapment might be relevant to your situation, or just someone who likes to think carefully about the bigger picture — I think you'll take a lot away from this one. In this episode: How Carli's pain started and why it took so long to get the right diagnosisThe difference between pudendal neuralgia and pudendal nerve entrapmentWhat decompression surgery involves and what recovery looks likeThe trauma and somatic work Carli did — and why she's clear it didn't cause her painHer critique of how medicine talks about chronic pain in womenWhat she wishes she'd been told in year one• The word "pudendal" — and what it means that it comes from the Latin for shame Connect with Carli Cutchin: Instagram: @carlicutchinWebsite: carlicutchin.com Connect with Mathilde: Instagram: @theworldstightestcommunity• Website: www.theworldstightestcommunity.com

    1h 9m
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About

Chronic pelvic pain doesn't have great PR. Vulvodynia, vaginismus, painful sex, pelvic floor dysfunction - conditions that affect 1 in 4 women and still get treated like a secret. This podcast is trying to change that. The World's Tightest Community is a weekly podcast hosted by Mathilde - a patient-turned-advocate who built this space out of her own experience with vulvodynia and vaginismus. Each episode goes deep into the conditions that millions of women live with but few feel safe naming: vulvodynia, vaginismus, vestibulodynia, pudendal neuralgia, and the wider landscape of chronic pelvic pain and painful sex. Mathilde speaks with gynecologists, pelvic floor physiotherapists, sex therapists, psychologists, and researchers working at the front edge of women's sexual health - translating clinical knowledge into something actually usable, alongside honest conversations about diagnostic delays, medical gaslighting, and what it really costs to navigate these conditions. You'll leave each episode with more language for your experience, clearer questions to bring to your next appointment, and the specific relief of knowing someone has thought carefully about this. New episodes every week. Follow wherever you listen, and find the community on Instagram. You are not alone in this. Not even close.

Information

  • Creator
    Mathilde Olstad
  • Years Active
    2025 - 2026
  • Episodes
    32
  • Rating
    Explicit
  • Copyright
    © 2025 Mathilde Olstad

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