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Explore every episode of the podcast The World's Tightest Community - A Podcast About Vulvodynia, Vaginismus & Women's Pelvic Pain

Dive into the complete episode list for The World's Tightest Community - A Podcast About Vulvodynia, Vaginismus & Women's Pelvic Pain. Each episode is cataloged with detailed descriptions, making it easy to find and explore specific topics. Keep track of all episodes from your favorite podcast and never miss a moment of insightful content.

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TitlePub. DateDuration
Vulvodynia, Desire, and the Diagnostic Odyssey: One Writer's Journey from Shamans to Sex Toys04 May 202600:50:46

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 wrong
  • The hormonal component: going off birth control and what shifted
  • The diagnostic odyssey — from Reddit threads to pelvic floor PT to a shaman in New Mexico
  • What desire and arousal actually feel like when you live with vulvodynia
  • The dissociation that happens during painful sex — and what helped Sara stay present
  • Why her gynecologist visits kept glossing over her libido
  • The "boiling pot" framework her PT gave her for understanding flares
  • What sex therapy added that physical treatment couldn't
  • Writing Shamelessly: Sara's creative writing consultancy


Connect with Sara Sturek:

Connect with Mathilde:

• Email: mathilde@theworldstightestcommunity.com 

Vulvodynia, Vaginismus, and Pelvic Pain: Start Here If You're New27 Apr 202600:12:38

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!

In this episode:

  • The 1 in 4 statistic and why it matters
  • The most common chronic vulvovaginal and pelvic pain conditions explained
  • Why pain down there is not a black box - and the real root causes behind it
  • Why most doctors aren't trained in vulvovaginal pain (and what that means for you)
  • How to start advocating for yourself in medical appointments
  • Why "the world's tightest community" - and what this space is really about
  • How 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

ISSWSH 2026 Recap: The Vulvodynia and Pelvic Pain Research You Need to Know About19 Feb 202600:36:11

I just got back from the ISSWSH (International Society for the Study of Women's Sexual Health) annual meeting in Long Beach, California - and I couldn't wait to bring everything I heard straight to you. This solo episode is part conference recap, part deep dive into the research I think matters most for anyone living with vulvovaginal pain, pelvic pain, or sexual pain of any kind.

In this episode I cover:

  • What sexual medicine actually is - and why a whole field exists around it
  • Vulvodynia subtypes and treatment matching - new data showing that hormonally-driven vulvodynia has a 70% response rate to estrogen/testosterone therapy, and why getting the wrong treatment for the wrong subtype may be why nothing has worked for you
  • Endometriosis and neuroproliferative dyspareunia - a newly validated subtype of deep endo pain that is nerve-driven and needs an entirely different treatment approach
  • Pelvic venous disorder (PEVD) - essentially varicose veins inside the pelvis, and why almost no one is being checked for it despite its links to chronic pelvic pain and conditions like POTS, MCAS and hypermobility
  • The vaginal estrogen update - why the removal of the black box warning on low-dose vaginal estrogen is such a big deal, and why these symptoms aren't just a menopause issue
  • Why women's pain is still being dismissed - a powerful presentation on the clinical gaze, pain measurement, gendered bias in medicine, and the feedback loop between underfunding and misdiagnosis. Plus: the dismissal of women's pain is not evenly distributed, and we need to talk about that.
  • Access and equity - new data showing Manhattan has 60x more pelvic floor physios per capita than the Bronx, with only 21% of practices accepting Medicaid

I also share something personal about privilege, what it means to be in a room like this, and who I'm really doing this for.

Resources & links mentioned:

If anything in this episode resonated, please reach out - I read every message. And if you're finding this podcast helpful, sharing it with someone who needs it is the biggest thing you can do.

From Black Box to Breakthrough: Dr. A. Goldstein on the Golden Era of Vulvodynia Research09 Feb 202600:51:49

For decades, vulvodynia was considered a mystery condition with few answers and limited treatment options. That's no longer the case.

In this episode, Dr. Andrew Goldstein - Clinical Professor at George Washington University and one of the world's leading experts on vulvar and pelvic pain - explains how 25 years of dedicated research has transformed our understanding of vulvodynia from a "black box" into a condition with identifiable causes and effective treatments.

In this episode, you'll learn:

  • Why vulvodynia wasn't part of standard medical training (and what's changing)
  • The real causes behind vulvar pain - from mast cell inflammation to hormonal triggers
  • How birth control pills can cause vulvodynia in some women (and the genetic reasons why)
  • Why the majority of pelvic pain patients have been gaslit - and the JAMA study that proves it
  • The truth about vestibulectomy surgery: who needs it (only 7% of patients) and the 97% success rate
  • Exciting new treatments on the horizon, including ketotifen for mast cell stabilization

Dr. Goldstein, past president of the International Society for the Study of Women's Sexual Health, has published over 170 peer-reviewed articles and co-authored 8 books on female sexual pain. He shares the revolutionary research from the 2023 Vulvodynia Therapeutics Summit and explains why vulvodynia is no longer a mystery condition - it's a solvable problem with tailored treatments.

🎧 Topics covered: vulvodynia causes, hormonally mediated vulvodynia, provoked vestibulodynia, vestibulectomy surgery, pelvic floor dysfunction, mast cell activation, birth control and vulvar pain, gaslighting in healthcare, new vulvodynia treatments

🔬 WANT TO HELP ADVANCE VULVODYNIA RESEARCH?

Dr. Goldstein emphasizes that clinical trials are crucial for developing new treatments. If you're interested in participating in vulvodynia research studies, including trials for ketotifen (mast cell stabilizer), resiniferatoxin (nerve desensitization),and Xeomin (for vulvodynia due to secondary hypertonic pelvic floor muscle dysfunction), reach out to research.cvvd@gmail.com

Your participation could help create the breakthrough treatments of tomorrow.

RESOURCES & LINKS:

Dr. Andrew Goldstein:

Organizations mentioned:

Dr. Goldstein's Books:

  • When Sex Hurts (2nd edition, 2022)
  • Female Sexual Pain Disorders: Evaluation & Management (2nd edition, 2020)

• Reclaiming Desire (2nd edition, 2009)

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Red Light Therapy for Pelvic Pain: Can It Help with Vaginismus and Vulvodynia?02 Feb 202600:41:08

If you're dealing with vaginismus or vulvodynia, you know how limited treatment options can feel - and how rarely we see real innovation in this space. That's why I was so intrigued when I discovered light therapy as a potential tool for pelvic pain relief.

In this episode, I sit down with Liz Frey, a pelvic health physiotherapist and Women's Health Medical Director at Fringe, to explore how light therapy is being used to treat vaginismus, vulvodynia, and pelvic floor hypertonicity.

Liz breaks down the science of photobiomodulation and explains how different wavelengths of light - red, near-infrared, and blue - work at the cellular level to promote tissue healing, reduce inflammation, and support pelvic floor recovery.

In this episode, we discuss:

  • What light therapy actually is and how it differs from sunlight exposure
  • The science behind red light and near-infrared therapy for tissue healing
  • How light therapy can help with vaginismus, vulvodynia, and pelvic floor hypertonicity
  • Blue light therapy for vaginal microbiome health and bacterial vaginosis
  • The Fringe Pelvic Wand: combining light therapy with gentle vibration
  • Use cases for postpartum recovery, menopause, and pelvic atrophy
  • Contraindications and safety considerations
  • How to integrate light therapy into your pelvic pain treatment plan

Resources mentioned:

  • Fringe website: FringeHeals.com
  • Instagram: @FringeHeals
  • Use discount code BAUBO10 for exclusive savings

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vaginismus Recovery: The Arousal-First Dilating Routine That Finally Worked After 15 Years19 Jan 202600:37:18

After experiencing vaginismus for over 15 years, Lauren found a treatment approach that finally worked - and it looked very different from the clinical, physical therapy-style dilation she'd tried before.

In this conversation, Lauren opens up about her journey from her first painful gynecologist visit at age 12 through years of inadequate medical advice ("just relax" and "have a glass of wine"), to discovering what actually helped: an arousal-first approach to dilating that prioritized pleasure over protocol.

Lauren shares the practical details of her routine - how she started so slowly she didn't even use dilators at first, why she incorporated audio porn and a magic wand into every session, and how she worked with her husband to build arousal skills before ever attempting penetrative sex together. She also discusses the role that going off birth control played in reconnecting with her libido and menstrual cycle, and how understanding her body's natural rhythms helped her succeed.

This episode offers concrete, actionable insights for anyone struggling with vaginismus, while also exploring the emotional and relational impact of living with pain. Lauren's story is a reminder that healing doesn't have to follow a rigid formula - and that sometimes the key is making the process feel less like physical therapy and more like something you actually want to do.

Connect with Lauren on instagram @tcsbooks

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vaginismus & Self-Worth: Why You Don't Have to Wait Until You're "Fixed" to Live Fully12 Jan 202600:39:08

This episode isn't just about dating and relationships - though we definitely talk about that. It's about how vaginismus can impact every corner of your life: your confidence at work, whether you feel like an imposter in your career, how you express yourself creatively through movement or dance, your ability to assert yourself in everyday situations, and the mental space it occupies in your mind.

Are you postponing not just dating, but living fully until your vaginismus is "fixed"? Do you feel broken, unworthy, or like you're somehow less than because of sexual pain?

This episode is your permission slip to stop waiting and start reclaiming your worth NOW.

I'm joined by Dr. Janelle Frederick (@vaginarehabdoctor), pelvic floor physical therapist and vaginismus specialist, for what might be the most important conversation you hear this year about self-worth, living fully with vaginismus, and why the narrative of being "broken" needs to end.

This isn't just another clinical discussion about pelvic floor dysfunction - this is a raw, honest pep talk about why you're worthy of love RIGHT NOW, how to show up confidently in all areas of your life despite vaginismus, and how healing goes far beyond just being able to have pain-free sex.

Dr. Janelle brings her signature bold, refreshing approach - she's unfiltered, empowering, and refuses to let you stay stuck in shame. She shares powerful client transformations, including a dancer who couldn't access her sensual expression because of vaginismus, and medical professionals who felt like imposters despite their expertise.

About Dr. Janelle Howell: Dr. Janelle Howell is a Doctor of Physical Therapy who specializes in helping women overcome vaginismus, vulvodynia, and chronic sexual pain through her virtual practice. She combines physical therapy expertise with mindset work, addressing both the body and beliefs that keep women stuck.

Resources mentioned:

  • Vaginismus to Vagilicious Challenge (yearly January challenge)
  • Dr. Janelle's Podcast: “The Vagina Rehab Doctor Podcast”
  • Follow Dr. Janelle on IG: @vaginarehabdoctor

• MELT Challenge for softening your pelvic floor

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Year-End Update: Progress, Gratitude, and What's Coming in 202622 Dec 202500:07:52

As the year closes, I wanted to take a moment to say thank you - to everyone who's listened, shared, and reached out.

In this episode, I reflect on the journey so far, share a personal update on my own journey, and talk about about why fact-checking and accountability matter so much when it comes to information about women's bodies.

Your feedback shapes this podcast. If you ever want to talk, suggest a topic, or question something you've heard here - I'm listening!

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Sex Therapy for Vaginismus: What It Actually Involves and Why Dilators Alone Often Aren't Enough08 Dec 202501:01:27

What happens in sex therapy for vaginismus and vulvodynia? In this conversation with certified holistic sexuality educator and embodied intimacy coach Lauren Elise Rogers, we explore how sex and relationship coaching addresses the root causes of sexual pain - beyond just the physical symptoms.

Lauren shares her journey from purity culture to becoming a specialist in treating vaginismus, vulvodynia, and painful sex. We discuss:

  • The "garden metaphor" – three levels of sexual beliefs living in your body (explicit, latent, and body-based)
  • Why your body's "no" to sex might be wisdom, not dysfunction
  • How arousal actually dampens pain perception (and why this isn't talked about more)
  • The three-minute game for rebuilding trust and creating new neural pathways
  • Why dilators alone aren't enough without addressing trauma, arousal, and context
  • Practical timeline exercises you can try at home to uncover hidden sexual beliefs

If you've been told to "just push through" the pain, or feel broken because treatment isn't working, this episode offers a different perspective: your body isn't broken - it's communicating. Lauren explains how sex therapy works alongside pelvic floor physio and medical care to treat the psychological, emotional, and educational gaps that often underlie conditions like vaginismus and vulvodynia.

Resources mentioned:

  • The three-minute touch game
  • Sexual timeline exercise (ages 7, 14, 21)
  • Fill-in-the-blank prompts: "Sex is___", "My body belongs to___", "It's a girl's job to__”, "It's a boy’s job to__”, “To stay safe, I___"

Connect with Lauren: 

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

This is not medical advice. Always work with qualified healthcare providers for diagnosis and treatment of sexual pain conditions.

Pelvic Floor and Daily Habits: The Small Things Worsening Your Vulvodynia or Vaginismus24 Oct 202500:52:17

In this conversation, pelvic floor physical therapist Dr. Julie Sarton shares the small, surprising ways our daily routines - like how we sit, breathe, carry stress, or even pee - can quietly create or maintain pelvic floor tension.

We unpack why “just doing Kegels” often backfires, how breath-holding and sucking in your stomach keep your pelvic floor on high alert, and what it really means to release rather than strengthen.

Dr. Sarton brings nearly 30 years of experience treating pelvic pain to explain how posture, clothing, exercise cues, and even nervous system regulation all play a role in recovery from vaginismus and vulvodynia.

You’ll walk away with simple, practical changes you can make today to support a calmer, healthier pelvic floor. About Dr. Julie Sarton: Founder of Sarton Pelvic Healing in California, Dr. Sarton is a pioneer in pelvic floor physical therapy and international educator on chronic pelvic pain.

💬 Have a question you’d like covered in a future episode?

Reach out at mathilde@theworldstightestcommunity.com or send a DM to @theworldstightestcommunity on Instagram. This episode is not medical advice.

Lubricants, Condoms, and Vaginismus: The Intimate Products That Could Be Making Pain Worse18 Mar 202500:42:35

Join us with Sam Evans, intimate health expert and co-owner of Jo Divine, a UK pleasure shop specializing in skin-safe products. Sam shares her personal experience with vaginismus and how intimate products directly contributed to her condition.

In this episode, we discuss:

* How common ingredients in lubricants, condoms and other intimate health products can trigger vaginal pain

* Why "doctor recommended" products might still contain harmful ingredients

* How incorporating toys and focusing on pleasure can be beneficial for those experiencing vulvodynia and vaginismus

Request a topic we should address on the podcast via @theworldstightestcommunity.

10% discount code for Jo Divine: BAUBO10 (£5 minimum spend on full priced products excluding P&P) ends 30/04/25

Recommended products:

* Yes Organic Water Based Lubricant https://www.jodivine.com/products/yes-organic-lubricant-water-based

* Yes Organic Oil Based Lubricant https://www.jodivine.com/products/yes-organic-lubricant-oil-based

* Yes Coco Oil Based Lube Applicators x 6 https://www.jodivine.com/products/yes-coco-oil-based-lube-applicators-x-6

* SUTIL Luxe https://www.jodivine.com/products/sutil-luxe

* SUTIL Rich https://www.jodivine.com/products/sutil-rich

* Immy Vibrator https://www.jodivine.com/products/jo-divine-immy

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Pelvic Floor PT on Vaginismus and Vulvodynia: What You Actually Need to Know21 Jan 202501:03:13

In part one of our two-part series, pelvic health physiotherapist Jo Gipson explains the basics of pelvic floor anatomy and the relevance for vulvodynia and vaginismus. She challenges common myths about Kegel exercises, explains why both muscle relaxation and strength matter, and shares practical treatment approaches from breath work to dilator use.

Connect with Jo Gipson:

Instagram: @jogipsonphysio

Website: www.jogipsonphysiotherapy.com

For UK-based pelvic health support, visit the Pelvic Pain Network: @pelvicpainnetwork

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

CBD for Pelvic Pain: Do Suppositories Actually Work for Vulvodynia and Vaginismus?21 Apr 202600:42:32

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 says
  • The endocannabinoid system explained - and why it matters for vulvodynia and vaginismus
  • Why CBD suppositories may work better for pelvic pain than oils, gummies, or tinctures
  • Low-dose THC for pain and pleasure - why dosage is everything
  • CBD and vaginismus - how muscle relaxation and anticipatory pain connect
  • Magnesium in CBD suppositories - what it does for hypertonic pelvic floor
  • CBD for endometriosis, interstitial cystitis, dyspareunia, and IBS
  • How to read a CBD product label - full panel third-party testing explained
  • Full spectrum vs broad spectrum vs CBD isolate - what the difference means for you
  • The legal status of CBD and hemp in the US - and what's changing
  • Mathilde's personal experience using CBD suppositories for penetrative pain

Connect with Tamar Hill / Medroots:

Connect with Mathilde:

Pelvic Pain Neuroscience: Why Anticipating Pain Makes Vaginismus and Vulvodynia Worse08 Feb 202500:54:41

In part two of our two-part series, we explore the fascinating neuroscience behind pelvic pain with pelvic health physiotherapist Jo Gipson. We cover why pain isn't just physical but a complex response to perceived threat, and how our beliefs and past experiences shape our body's reactions. Jo breaks down how pain cycles can emerge, explains why anticipating pain can make it worse, and reveals why even trusted partners can unknowingly trigger protective responses.

Connect with Jo Gipson:

Instagram: @jogipsonphysio

Website: www.jogipsonphysiotherapy.com

For UK-based pelvic health support, visit the Pelvic Pain Network: @pelvicpainnetwork

The Oh nut: https://thepelvicpeople.com/products/ohnut-depth-limiting-rings

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vaginismus and Fear: How Your Nervous System Creates the Pain Cycle - and How to Break It12 Sep 202500:54:46

Fear is one of our most powerful instincts - and it often plays a central role in vaginismus. In this episode, psychologist Dr. Seth Senecal explains how fear overrides logic, shapes our nervous system, and keeps our pelvic floor muscles from relaxing.

Whether it’s a tiger chasing us or worrying that someone we love might leave, the body responds as if survival is on the line - and that signal can often be hard to mute.

Together with host Mathilde, he unpacks why safety is as crucial as arousal, why using dilators alone without addressing emotional factors often fall short, and how shame and anger can be transformed into tools for healing.

Listeners will learn how the sympathetic and parasympathetic systems work during sex, why anxiety is a “mood killer,” and what it means to approach vaginismus with curiosity and softness instead of force. Dr. Seth Senecal is a U.S.-based clinical psychologist who works with trauma, anxiety, and chronic pain.

For speaking engagements or to connect with Dr. Seth Senecal, reach out at docsenecal@gmail.com

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vulvodynia Research: How Psychology, Relationships, and Stigma Shape Your Pain Outcomes01 Oct 202500:35:10

What really shapes how we live with vulvodynia, vaginismus and other pelvic pain conditions - biology alone, or also our emotions, thoughts, partner interactions and place in society?

In this episode, I sit down with Dr. Claudia Chisari, one of the most cited scientists in vulvodynia research and founder of Bloume Health.

Claudia shares her own journey through years of pain and medical dismissal, and how that experience led her to research vulvodynia using the ACT framework and later establish a pelvic pain platform, Bloume Health.

We talk about why stigma, mental health, and relationships can influence pain outcomes, what her research reveals about acceptance and injustice, and how she’s now turning these insights into practical tools through her work at Bloume Health. It’s a conversation that blends lived wisdom with groundbreaking science - and it just might shift how you think about pelvic pain care. This episode is not medical advice.

I’d love to hear your questions for future episodes - Connect with me on

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Thrush and Vulvodynia: The Link That Gets Missed and Why It Matters for Chronic Vulvar Pain06 Nov 202500:44:20

Thrush (aka yeast/candida infections) is common - 75% of women will experience it at some point - but for some women, it can trigger long-term vulvar pain (vulvodynia). In this powerful episode, Mathilde speaks with Philly Baines, a UK-based women’s health advocate, about her journey from repeated thrush infections to developing vulvodynia, and how years of medical dismissal led her to campaign for change.

Together they unpack what we do know about the link between thrush and nerve pain, why so many women are dismissed or misdiagnosed, and what warning signs to look out for.

Philly also shares how she turned her own experience into Thrush-Support.com , a free evidence-based resource helping women advocate for better care. Listeners will learn how to recognize persistent thrush, understand why it sometimes leads to chronic pain, and what to ask for in medical appointments.

This episode is not medical advice.

Connect with Philly:

@painsdownthere

@thrushsupport

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vulvodynia Root Causes: Hormonal, Muscular, Nerve, and Inflammatory I Dr. Jill Krapf27 Aug 202500:47:27

In this episode, Dr. Jill Krapf joins Mathilde to unpack the four main drivers of vulvar pain - hormonal, muscular, inflammatory, and nerve-related - and why these factors often overlap. She shares why she believes the catch-all term “vulvodynia” will eventually disappear as research continues to uncover specific root causes.

We discuss how Dr. Krapf investigates these causes in her practice, from examining glands and muscles to considering hormones and nerve involvement.

She outlines practical treatment options - topical hormones, pelvic floor therapy, medications - and when surgery might be appropriate. Dr. Krapf also highlights exciting new research on neuroinflammatory pain.

Work with Dr. Jill Krapf:


https://jillkrapfmd.com/

appointments@jillkrapfmd.com 
 https://www.instagram.com/jillkrapfmd

Book: When Sex Hurts https://tinyurl.com/yb9z3vtv

The Centers for Vulvovaginal Disorders: https://vulvodynia.com/

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Timestamps:
04:24 – Dr Jill Krapf’s background 


06:08 – Why “vulvodynia” is a problematic term


09:53 – The four main root-cause categories (hormonal, muscular, inflammatory/infectious and nerve-related)


14:30 – Hormonal factors and diagnosis


19:30 – Hormonal treatment options


22:42 – Muscular causes and pain cycles


29:05 – Assessing and treating muscle-based pain


31:38 – Inflammatory and infectious causes


34:30 – Treatment approaches for inflammation


35:46 – Nerve-driven pain


38:20 – Treatment options for nerve pain


42:23 – Pudendal and pelvic nerve issues


44:25 – How to find and work with Dr. Jill Krapf

Acupuncture for Vulvodynia: What Traditional Chinese Medicine Actually Does for Pelvic Pain20 Nov 202500:43:10

Vulvodynia can feel mysterious, isolating, and overwhelming - especially when treatments seem to focus on symptoms instead of causes. In this conversation, acupuncturist and Traditional Chinese Medicine (TCM) practitioner Jennifer Dubowsky shares how she approaches vulvar pain through a whole-body lens built on 24 years of clinical experience.

Jennifer walks us through the most common TCM patterns she sees in women with vulvodynia and explains how acupuncture may help with pain, inflammation, and pelvic-floor tightness.

She also demystifies concepts like qi, damp heat, and mirror-imaging points in a way that feels practical and accessible.

Connect with Jennifer:

https://jenniferdubowsky.com/

Jennifer’s book: https://www.amazon.com/Adventures-In-Chinese-Medicine-Acupuncture/

https://www.instagram.com/vulvodyniaproject/

https://www.instagram.com/acupuncture007/

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Resources Mentioned:

National Vulvodynia Association: https://www.nva.org/ Research Studies:

* Lee Hollander Rubin's study https://pubmed.ncbi.nlm.nih.gov/31592976/

* Judith Schlaeger's studies: https://pubmed.ncbi.nlm.nih.gov/25639289/ and https://pmc.ncbi.nlm.nih.gov/articles/PMC9649367/#sec4

Topical Products:

Yin Care topical liquid - https://yincare.com/product/yin-care-original-100-ml/

Vulva balm by Medicine Mama https://www.amazon.com.mx/Medicine-Mamas-Apothecary-Vmagic-Intimate/dp/B0071Q5PL0?th=1 Therapeutic Intimacy Oil by Wellness and Nature https://www.wellnessxnature.com/intimacy-oil

Product Safety Tool:

Yuka app: https://yuka.io/en/

Safe Lubricants

Sliquid: https://sliquid.com/

Good Clean Love: https://goodcleanlove.com/products/almost-naked%C2%AE-organic-personal-lubricant-4-oz

Pre-Seed (fertility-friendly): https://www.amazon.com/Pre-Seed-Fertility-Friendly-Personal-Lubricant-Pack/dp/B00BYDC79O

Avoid: KY Jelly and Astroglide - these kill good bacteria and can increase vulnerability to infection

Vulvodynia and Vaginismus Diagnosis: Why These Conditions Get Dismissed and What to Do About It07 Jan 202500:35:22

In this first episode, we dive deep into the often misunderstood world of vulvodynia and vaginismus with Dr. Tania Adib, a leading London-based gynecologist specializing in vulvar health. Through host Mathilde's personal journey and Dr. Adib's clinical expertise, we explore why these conditions are frequently dismissed by healthcare providers despite affecting up to 1 in 5 women.

Dr. Adib breaks down the four key root causes - inflammatory, muscular, neurological, and hormonal. We discuss why vulvar pain remains a diagnostic challenge for medical professionals, the potential link between hormonal birth control and pain, and how symptoms can vary throughout the menstrual cycle.

Dr. Adib shares crucial guidance for women facing medical dismissal and explains why understanding the root cause is essential for effective treatment. Finally, Dr Adib shares her view on promising innovations in treatment.

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Fascia and Pelvic Pain: Why Jaw Tension Can Show Up in Your Pelvis with Vaginismus10 Oct 202500:45:22

For so many living with vaginismus or vulvodynia, pain feels like a puzzle with missing pieces. What if one of those pieces is fascia - the thin, stringy web that connects every part of your body, where tightness in your jaw could whisper tension into your pelvis?

In this episode, we unpack what fascia actually is, how it connects areas like the jaw and pelvis, and why this matters for anyone experiencing chronic pelvic pain. You’ll also learn simple, practical tools to support your fascial health through gentle movement, breath, and touch.

🎧 Follow and send your questions for future episodes on

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Connect with Violet Meyer at @battersea.massage

Pudendal Nerve Entrapment Surgery: One Woman's 15-Year Road to the Right Diagnosis13 Apr 202601:08:50

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 diagnosis
  • The difference between pudendal neuralgia and pudendal nerve entrapment
  • What decompression surgery involves and what recovery looks like
  • The trauma and somatic work Carli did — and why she's clear it didn't cause her pain
  • Her critique of how medicine talks about chronic pain in women
  • What 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:

Connect with Mathilde:

  • Instagram: @theworldstightestcommunity

• Website: www.theworldstightestcommunity.com

Vulvodynia Clinical Trial: The First Drug Being Developed Specifically for This Condition06 Apr 202600:44:35

There is no medication approved specifically for vulvodynia. Not a single one. John Connell and his team are trying to change that.

In this episode, I sit down with John Connell, Chief Scientific Officer at MAC Clinical Research — one of the UK's longest-established contract research organisations. John has spent over 35 years in clinical research, and has been working with Danish biotech Initiator Pharma for the past six or seven years to develop pudafensine: a first-of-its-kind drug being investigated specifically for vulvodynia.

Pudafensine works by increasing dopamine levels in the brain — a chemical messenger most people associate with pleasure and reward, but one that also plays a crucial role in pain modulation. Unlike the treatments many of us are already on (think amitriptyline or SNRIs), pudafensine is not repurposed from another condition. It is being specifically developed with this type of pain in mind. Preclinical studies showed early promise, and in a subsequent study on healthy volunteers using a capsaicin pain model, a single dose reduced allodynia more effectively than pregabalin — and with fewer side effects.

We get into the science of how the drug works, what the preclinical and early human data is showing, and what it actually looks like to take part in the trial. John also speaks to the bigger picture: why vulvodynia has been so chronically under-researched, why this study is pivotal for the future of drug development in this space, and what it would mean for the field if a positive signal is found.

If you're in the UK, aged 18–65, and have experienced vulvar pain for 12 months or more (with or without a formal diagnosis), you may be eligible to take part. Participants can receive up to £1,730 plus reasonable travel expenses. Clinics are in Manchester and Blackpool.

Find out more and sign up here: https://researchforyou.co.uk/vulvodynia-clinical-trial-mac212?utm_source=Mathilde_Influencer&utm_medium=Podcast&utm_campaign=MAC212_MathildePodcast_V1_001

In paid partnership with @mac_clinicalresearch

In this episode:

  • Why there is still no approved drug for vulvodynia — and why diagnosis can take years
  • What pudafensine is and how it targets the dopamine system to interrupt pain signalling
  • How it differs from amitriptyline, SNRIs, and other treatments many listeners are already on
  • The capsaicin pain model study: what it showed, and why the results were so significant
  • What the current clinical trial actually involves, from first contact to final visit
  • Who is eligible to take part and what would exclude someone
  • Why this particular study is a pivotal moment for vulvodynia drug development
  • What it would mean — for patients, for the industry — if this works
My Vulvodynia and Vaginismus Story: The Episode I've Been Afraid to Record31 Mar 202600:36:59

For a long time, I've been standing slightly to the side of my own experience on this podcast. Today, I step into the center of it.

In this solo episode, I share my full story with vulvodynia and vaginismus for the first time - from the first symptoms five years ago to the rock bottom moment that broke me open, and eventually, to the unexpected thing that gave me the strength to keep going.

I talk about what it was like to be dismissed by doctors, to spend years in a treatment rabbit hole trying everything from pelvic floor physiotherapy and nortriptyline to somatic therapy and psychedelic-assisted healing. I share something I've never spoken about publicly before - a trauma history that surfaced at almost exactly the same time as my pain, and how the two were more connected than I understood at the time.

I also talk about shame, about the grief of feeling like your body is working against you, about the isolating silence that so often surrounds these conditions - and about the Reddit thread that cracked something open in me and became the unexpected seed of this podcast.

And I share something significant: why this podcast now has a new name.

This episode doesn't have a clean ending. My story doesn't either - not yet. But if any part of what I've described sounds familiar, this one is for you.

In this episode:

  • My first symptoms and the dismissal that delayed everything
  • A diagnosis of vulvodynia - and what was missing from it
  • The trauma history I've never spoken about publicly
  • Years of treatment-hopping and why I couldn't stick to my dilator routine
  • The rock bottom moment that broke me
  • Finding community on Reddit and what shifted
  • Why I started this podcast - and its new name

    Connect with me: @theworldstightestcommunity or theworldstightestcommunity.com <3
Botox for Vaginismus and Vulvodynia: Success Rates, Who It's For, and What to Expect | Dr Corey Babb23 Mar 202600:49:55

Can Botox really help treat vaginismus and vulvodynia - and if so, how does it actually work?

In this episode, I sit down with Dr. Corey Babb, a board-certified gynecologist, ISSWSH fellow, and one of only four providers worldwide trained in the Pacik Multimodal Botox Protocol for vaginismus. Dr. Babb is the founder of Haven Center in Tulsa, Oklahoma, and co-authored the landmark research that established the five-point grading scale for vaginismus, now used internationally.

We go deep into how Botox works physiologically, how it relates to the pain-fear-spasm cycle, who is a good candidate for it, and what the treatment and recovery process actually looks like. Dr. Babb also shares the success rates he's seeing at his clinic (around 95% of patients achieving pain-free penetration within three months), how desire is impacted after years of painful sex, and how Botox can also be used for vulvodynia patients with hypertonic pelvic floor dysfunction. We also discuss trauma-informed care and the importance of patient agency when undergoing this type of procedure.

This is one of the most detailed and practical conversations on Botox as a treatment for vaginismus and vulvodynia that you'll find anywhere. Whether you're someone navigating one of these conditions, a partner trying to understand, or a clinician - I think you'll take a lot away from this one.

Connect with Dr. Corey Babb: 

Haven Center: https://havencenter.com 

Instagram: @dr.coreybabb 

Research paper: Pacik PT, Babb CR, et al. "Case Series: Redefining Severe Grade 5 Vaginismus." Sexual Medicine, 2019 - https://pmc.ncbi.nlm.nih.gov/articles/PMC6963107/

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Timestamps:

00:00 - Welcome & introduction

01:00 - Dr. Babb's origin story (from music theory to sexual medicine)

03:09 - The patient case that changed everything

04:08 - The 2019 research paper & the five-point vaginismus grading scale

07:49 - Walking through grades 1-5

10:27 - Measuring hypertonicity vs. psychological distress

13:11 - How widely adopted is the grading scale?

15:05 - The GPPPD debate and why vaginismus deserves its own classification

16:36 - What is Botox and what does it do in the body?

18:22 - How Botox works for vaginismus (muscles, dilution, injection technique)

20:49 - Breaking the pain-fear-spasm cycle

23:32 - Success rates and Botox as an "accelerator"

25:16 - The missing piece: desire after years of painful sex

27:18 - Traditional Botox injections vs. the Pacik protocol

34:36 - Trauma-informed care and patient agency during treatment

37:34 - The post-procedure protocol (dilators, timelines, what to expect)

39:56 - Long-term outcomes: why most patients don't relapse

41:51 - Botox for vulvodynia: who it's for and how it differs

46:38 - The future of vulvovaginal pain treatment & mast cell activation

Women's Health Censorship: Why "Vulvodynia" Gets Flagged and What We're Losing Because of It16 Mar 202600:25:46

Social media platforms are systematically censoring medically accurate women's health content. Words like vulva, vagina, and vulvodynia are being flagged, shadow banned, and suppressed - not because they're explicit, but because the systems designed to moderate content were never built to tell the difference. This is about accurate, life-saving health information being treated as obscene.

The problem with this is it is enforcing the deep-rooted societal stigma around topics like menstruation, menopause and sexual wellbeing - the very stigma that advocates, clinicians and educators are working to dismantle.

In this episode, I break down what's actually happening: the data behind the censorship, the companies and creators being penalized, the double standards baked into platform advertising policies, and why self-censorship might be the most damaging consequence of all. I also look at the historical context - how shame was literally built into the language of female anatomy centuries ago, and how that legacy is still shaping what we're allowed to say online today.

If you've ever wondered why health creators use asterisks in place of vowels or write "s*x" on Instagram, this episode is for you.

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Referenced in this episode:

  • Dr. Aziza Sessai - UK-based GP and women's health advocate, founder of the "They Are Not Bad Words" campaign
  • Dr. Philippa Kaye - GP and women's health advocate
  • Jackie Rotman - Founder of the Center for Intimacy Justice, whose investigation was published in the New York Times (2019) and later cited in US Senate hearings
  • CensHERship - Coalition focused on the censorship of women's health content, authors of the "Censorship Revealed" white paper and the Women's Health Visibility Alliance
  • Rachel E. Gross - Author of "Vagina Obscura"
  • Intimate Rose - Pelvic floor dilator company whose products were classified as adult content by Meta
  • Daye - Diagnostic tampon company for HPV screening whose ads were rejected under adult nudity policies
  • Hanx - Women's libido supplement available in Boots, repeatedly penalized by Meta advertising

• Hims, Xseed, Mojo - Men's health companies whose equivalent ads were approved without issue

Painful Sex and Vaginismus: The Femtech Device Designed to Change How Treatment Feels09 Mar 202600:39:20

What if the answer to painful sex wasn't another dilator - but something genuinely novel?

In this episode, Mathilde sits down with Kelley, co-founder of Pelva and a fellow woman with lived-experience  who went from primary vaginismus and provoked vestibulodynia to building one of the most innovative femtech products in the vulvovaginal pain space.

Kelley breaks down exactly how Pelva's hydrogel vaginal liner works - and why the science of nociception (how pain receptors respond to pressure, friction, and force) is at the heart of its design. Think of it like an insole for your vagina: a plant-based, water-hydrated cushioning barrier that reduces concentrated pressure on the hypersensitive vestibular tissue that so many of us know too well.

In this episode:

  • Kelley's personal journey from vaginismus to provoked vestibulodynia - and how her biomedical engineer husband helped build the solution
  • The nociceptor science behind Pelva and why cushioning is the key mechanism
  • Who the product works best for: PVD, vaginismus, GSM
  • How Pelva bridges the gap between dilator therapy and partnered sex
  • What beta testing revealed 
  • Securing an NIH grant for a sexual health device (yes, really)
  • The honest reality of fundraising in femtech as a female founder

Whether you're in active treatment for vulvodynia, vaginismus, or genitopelvic pain - or you're a pelvic health provider looking for new tools - I think you will love this episode.

Purchase liners at www.pelva.com

Special discount code: Baubo10 for 10% off 

Provider sample signup: here or on the clinician page on our website: https://pelva.com/pages/for-providers

Connect on instagram: @pelvahealth @kelleysatoski 

Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vulvar Pain Recovery: The Nocebo Effect, Medical Dismissal, and What Finally Worked02 Mar 202600:50:29

In this episode, I'm joined by Heather Coppard - nurse, hypnotherapist, and author. 

Heather spent years navigating the healthcare system as a patient with persistent vulval pain, experiencing firsthand the dismissal, gaslighting, and harmful messaging that so many of us know all too well. One particularly devastating appointment with a specialist became the turning point that drove her to write her book, set up a vulval pain support group, and dedicate her work to ensuring no other woman walks away from a consultation feeling the way she did that day.

In this episode we cover a lot of ground - from the nocebo effect and how the language healthcare providers use can directly worsen pain outcomes, to the biopsychosocial model of persistent pain and why a multidisciplinary approach was the key to Heather's own recovery jigsaw. We also talk openly about hypnotherapy - a modality Heather was initially skeptical of as a clinician - and how it became one of the most powerful tools in her healing process alongside pharmacological intervention, CBT, pelvic floor physiotherapy, and mindfulness-based stress reduction.

This is a hopeful episode. Heather recovered, and she has a lot of wisdom to share about what that journey looked like and what she wishes she had known at the start.

Show Notes:

🔗 Find Heather Coppard: Website: www.heathercoppard.com Instagram: @heather_coppard

📖 Heather's Book: Optimising Recovery for Vulval and Vaginal Pain — available globally on Amazon and to order from all major bookstores including Barnes & Noble (US) and Waterstones (UK)

🏥 Organisations & Resources Mentioned: The Vulval Pain Society — www.vulvalpainsociety.org The British Society for the Study of Vulval Disease (BSSVD) — www.bssvd.org NICE guidelines on hypnotherapy for IBS — www.nice.org.uk


Connect with Mathilde

IG: @theworldstightestcommunity or mathilde@theworldstightestcommunity.com

Vaginismus and Pregnancy: TTC Options, Birth Planning, and What Happens to Your Pelvic Floor11 May 202600:58:48

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 start
  • Conception options when PIV isn't the path: at-home insemination kits, IUI, and more
  • Ovulation tracking - when it helps and when it makes things harder
  • What actually happens to your pelvic floor across pregnancy, including what relaxin does and doesn't do
  • Birth positions and breathing strategies for a hypertonic pelvic floor
  • C-section vs. vaginal birth - how to think through it when you have pelvic pain
  • Cervical checks, catheters, and what nobody tells you beforehand
  • How to advocate for yourself with your care team - and what to brief your partner on
  • Why you shouldn't wait to seek support, even if everything's about to change

Connect with Saige Evans:

Connect with Mathilde:

The gap in OBGYN training: what doctors never learn about vulvovaginal pain I Tightlipped 25 May 202600:48:59

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 US
  • What TightLipped's campaign to change medical education actually looks like in practice
  • The most common patterns across hundreds of patient stories - and what they reveal about systemic failure
  • Why becoming a highly informed self-advocate is not the solution - and what is
  • The specific barriers that prevent undiagnosed patients from ever finding care or community
  • How TightLipped approaches hospital departments - and what messaging actually lands
  • The case for separating obstetrics and gynecology as specialties
  • What international expansion of this model could look like

Connect with Noa and TightLipped:

Connect with Mathilde:

Vulvodynia and Healthcare Access: Refused by 7 Clinics Despite a Diagnosis20 May 202600:18:12

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 you
  • Why I started this podcast, and what I'm trying to build
  • How I'm thinking about funding it going forward
  • What I'll never do (and why)
  • How you can help - right now, in whatever way works for you

How to help

Connect with Mathilde

• Website: theworldstightestcommunity.com 

Mast Cells and Vestibulodynia: The Inflammation Root Cause and A New Treatment Trial I Dr Jill Krapf01 Jun 202600:53:02

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 alarms
  • The difference between inflammatory, hormonal, muscular and neuroproliferative vestibulodynia
  • Why "everything looks normal" is the hardest case to treat
  • How yeast infections, their treatments, and everyday irritants can trigger mast cells
  • The link between mast cell activation, Ehlers-Danlos, hypermobility, POTS and IBS
  • Why vulvar pain can be a sign of a whole-body process
  • Why surgery has been the only proven option for neuroproliferative pain, and its downsides
  • H1 and H2 antihistamines, mast cell stabilisers, and other current options
  • The 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 Goldstein
  • Washington DC - Dr Chailee Moss
  • Tampa, 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:

Connect with Mathilde:

Support the podcast

This episode is sponsored by Pelva. Use TWTC10 at checkout to receive 10% off your first order.

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