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

You had a baby, and months later something still hurts. Sex, sitting, the scar. And you've been told this is just what happens now. If that's you, this conversation is for you. I'm joined by Dr. Alexandra Dubinskaya, a urogynecologist and sexual medicine specialist in Beverly Hills. She chairs the communication committee at the International Society for Sexual Medicine and wrote the vulvodynia chapter in Taking Care of You. Much of her work is with women who come to her months or years after giving birth, still in pain, told there was nothing wrong. Her view is that women don't need protecting from information, they need it to make their own decisions. We talk about why sex can hurt after birth, starting with genitourinary syndrome of lactation, the hormonal drop that happens while breastfeeding. We get into tearing and episiotomies, granulation tissue that won't heal, and how the pudendal nerve gets stretched during pushing. She explains why that can cause numbness rather than pain. We also cover what to plan for if you already live with pelvic pain, and when a planned C-section is reasonable. If you're pregnant and want to know what to ask for, or already living with pelvic pain and weighing up a birth, this one is about having enough information to choose. Sponsors: - The Pelvic People, makers of the Ohnut and the Kiwi. 15% off with code TWTC15 at thepelvicpeople.com/twtc - Origin, in-network pelvic floor PT. Get your first month of On Track free with code TWTC at theoriginway.com/twtc Connect with Dr. Alexandra Dubinskaya: - Instagram, TikTok, YouTube: @DrUrogyn Connect with Mathilde: IG: @theworldstightestcommunity Web: theworldstightestcommunity.com Newsletter: https://tinyurl.com/4h4snzzd Support: https://tinyurl.com/mtxnzhsd Chapters: 00:00:00 Introduction: Pelvic Pain After Birth 00:01:34 Dr. Alexandra Dubinskaya 00:02:09 Urogynecology, Birth as Risk Factor 00:03:51 Informed Choice, What Women Are Not Told 00:05:39 Painful Sex, Syndrome of Lactation 00:06:28 Tearing, Episiotomy, Granulation Tissue 00:07:00 Tool: Vaginal Testosterone, DHEA 00:07:38 Silver Nitrate, Surgical Excision 00:08:41 Conditions of Repair, Suture Sensitivity 00:09:54 Scar Pain, Adhesions, Altered Anatomy 00:10:25 Tool: Optimise Tissue Before Pelvic PT 00:11:04 Pelvic Floor Trauma, Nerve Stretch 00:11:47 Numbness, Paresthesia, Loose Vagina Myth 00:12:44 Pudendal Neuralgia, Sitting, Positions 00:13:15 Episiotomy Angle, Pudendal Nerve Injury 00:14:08 Muscle Spasm, Nerve Compression 00:15:22 Tool: Physical Therapy, Vibration, Heat 00:15:58 Existing Pelvic Pain, C-Section Risks 00:16:51 Tool: Epidural, Checks, Safe Words 00:17:38 Choosing a Planned C-Section 00:18:26 Information for Both Options 00:19:12 You Are Not Alone, Finding a Provider 00:20:17 Where to Find Dr. Dubinskaya

Stephanie Berman has lived with vulvar pain since 2011. She spent eleven years being dismissed, misdiagnosed and told to be patient, and the referral that finally moved her forward came from an Instagram DM she sent to Dr. Corey Babb. She is also the founder of the Aziza Project, a nonprofit that pays for women in pelvic pain to physically get to the care they need. We cover her full story, and then something I have never covered on this show: what it actually takes to advocate for yourself in a clinical room when you are neurodivergent, and what clinicians could be doing differently. For anyone who has been told their tests look fine, and for the clinicians who want to do better. Thank you to our sponsors: The Pelvic People - makers of the Ohnut and the Kiwi. Get 15% off with code TWTC15 at thepelvicpeople.com/twtc Origin - in-network pelvic floor PT. Get your first month of OnTrack free with code TWTC at theoriginway.com/TWTC Connect with Stephanie Berman: Instagram: @azizaproject Website: azizaproject.org Facebook: The Aziza Project Connect with Mathilde: IG: @theworldstightestcommunity Web: theworldstightestcommunity.com Newsletter: https://tinyurl.com/4h4snzzd Support: https://tinyurl.com/mtxnzhsd Timestamps: 00:00:00 Introduction: Stephanie Berman 00:02:34 The Aziza Project, Her Story 00:03:28 Symptoms Begin 2011, Itching 00:04:26 Family Doctor, OBGYN, Negative Tests 00:05:01 Pelvic Floor PT, Couldn't Tolerate It 00:06:07 Vulvar Pain Clinic, Chiropractor 00:07:06 Painful Periods, Endometriosis 00:08:10 Excision Surgery, Hysterectomy 00:08:47 Layers of Pain, Lichen Sclerosus 00:09:52 Dermatologist Visit, No Biopsy 00:11:02 Step Therapy, Topical Steroids 00:11:40 Biologic for Atopic Dermatitis 00:12:12 "You Failed Those Meds" 00:13:00 Leaving the Dermatologist, Instagram 00:13:58 Instagram DM to Dr. Babb 00:15:05 "How Did I Get So Lucky", Aziza Idea 00:15:53 Pudendal Nerve Block, Botox 00:17:41 Botox Under Conscious Sedation 00:19:04 Five Rounds of Botox; Moving Abroad 00:19:54 Telling a New PT What She Needs 00:21:10 Vulvar Biopsy, Atopic Dermatitis 00:22:34 Self-Advocacy After a Diagnosis 00:23:37 Why Botox Wears Off, Muscle Memory 00:25:24 Sponsor: The Pelvic People 00:28:05 Sponsor: Origin 00:29:41 Neurodivergence in the Clinical Room 00:30:16 Describing Pain, Interoception 00:31:38 Neurodivergence and Gynecologic Pain 00:32:18 Trauma-Informed Care, Being Believed 00:32:59 Tool: Finding a Provider Who Digs 00:36:02 MRI, Pelvic Congestion Syndrome 00:36:48 Masking in the Clinical Room 00:37:22 Scheduled Drugs, Doctor's Letter 00:38:47 Accommodating a Neurodivergent Brain 00:41:57 ISSWSH, Menopause Society Directories 00:43:37 Neurodivergence and Chronic Pain Rates 00:44:58 The Aziza Project, How It Works 00:47:08 Angel Flight, Free Flights to Tulsa 00:48:28 Medical Debt, Care Credit 00:50:02 27 Donors at $28 a Month 00:50:43 Looking for Social Media Help 00:52:05 Where to Find the Aziza Project 00:52:36 Outro, Ratings and Instagram

Vulvodynia just means pain in the vulva. It is not a diagnosis - and Dr. Maria Uloko argues that is why treatment so often fails. Maria is a urologist trained in comprehensive sexual health, one of seven in the world doing this work. We go type by type: what causes each one, what treats it, who it will not help. SPONSORS Pelva: the HydroSlix liner, a cushioning insert for more comfort during insertion. pelva.com , code TWTC10 for 10% off your first order. Origin: the largest in-network pelvic floor PT provider in the US, most patients pay under $36 a visit. theoriginway.com/TWTC , code TWTC for your first month of OnTrack free. Connect with Dr Uloko: instagram.com/mariaulokomd instagram.com/vulvai.co Connect with Mathilde: IG: @theworldstightestcommunity Web: theworldstightestcommunity.com Newsletter: https://tinyurl.com/4h4snzzd Support: https://tinyurl.com/mtxnzhsd 00:00:00 Introduction, Dr. Maria Uloko 00:02:24 Medication, Trial and Error 00:03:35 Sexual Health Training 00:04:25 Curable Conditions, No Diagnosis 00:05:24 Chest Pain Analogy 00:08:22 Symptoms vs Diagnoses 00:09:20 Success Rates, 13-67% 00:10:14 Root Cause, Burnout, VULVAi 00:11:17 Mathilde's Diagnosis, Dismissal 00:12:45 Crisis in Plain Sight 00:13:37 Anatomy Study, 75% Gap 00:14:37 Pelvic vs Vulvar Exam 00:16:28 Cost of Misdiagnosis 00:18:47 Sponsor: Origin 00:21:12 Sponsor: Pelva 00:22:44 Topicals, Systemics; a 101 00:23:24 Vulvodynia, Parts of the Vulva 00:24:48 Vestibule, 90% of Pain 00:26:34 Hormonally Mediated Vestibulodynia 00:27:44 Recurrent BV, Yeast; Q-Tip Test 00:28:35 Birth Control, Acne, Hair Loss 00:29:28 Tool: Estrogen, Testosterone 00:30:06 Premenopausal Triggers, 99% 00:30:44 IUDs, Rings, Implants 00:31:24 Oral Pill, Testosterone, SHBG 00:33:03 Staying on Birth Control 00:34:50 Tool: Check Hormone Labs 00:35:57 Recovery Timelines 00:37:39 Neuroproliferative Vestibulodynia 00:38:20 Congenital vs Acquired 00:39:26 Gabapentin, Lyrica; Pudendal Nerve 00:40:41 Wrong Drug, Wrong Diagnosis 00:41:17 Vestibulectomy, 96% Success 00:42:30 Partial vs Complete Surgery 00:45:29 Europe vs US Practice 00:46:54 When Surgery Is Indicated 00:48:28 Nerve Medication Success Rates 00:49:44 Hormonal and Nerve Pain 00:50:36 Anesthesia Test, Nerve Blocks 00:52:18 Living at a Four; Side Effects 00:53:43 Pelvic Floor Dysfunction 00:55:13 Primary vs Secondary Tension 00:59:26 Pelvic Floor Physical Therapy 01:00:00 Kegels, Why to Stop 01:00:47 Tool: TENS, Acupuncture, Breath 01:01:20 Muscle Relaxants, Suppositories 01:01:52 Botox, Resetting the Muscles 01:03:22 Clitorodynia, Clitoral Adhesions 01:04:37 Clitoral Nerve Pain 01:06:47 Lidocaine 01:08:50 Compounded Topicals, ABG Cream 01:10:44 Systemic vs Topical, Duration 01:11:56 Emerging Treatments 01:13:43 Endometriosis, Fibroids 01:14:44 Mast Cells, Antihistamines 01:16:11 VULVAi, Pre-Seed Round 01:16:54 Instagram, Reviews, Support

This episode started with an email from a listener: a man in his twenties whose girlfriend has lived with vaginismus and pelvic pain for years. He wanted to know how to be a good partner to someone going through this. So this one is for the partners. I talk about what this can feel like from the inside, why she might pull away when you touch her and why that is not a verdict on you, and how the two of you can become a team around this instead of letting it come between you. I go through Natalie Rosen's research on the three ways partners respond, including the surprising finding about which kind of support is linked to more pain rather than less. And I talk about you, because you are in this too and you are allowed to be struggling. One in four women and people with vulvas experience this. There are real mechanisms behind it, there are treatments, and people do get better. SPONSORS Pelva: the HydroSlix liner, a cushioning insert for more comfort during insertion. pelva.com , code TWTC10 for 10% off your first order. Origin: the largest in-network pelvic floor PT provider in the US, most patients pay under $36 a visit. theoriginway.com/TWTC , code TWTC for your first month of OnTrack free. Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter: https://tinyurl.com/4h4snzzd Support the podcast: https://tinyurl.com/mtxnzhsd CHAPTERS 00:00:00 Introduction 00:00:36 The Email That Started This Episode 00:01:09 The Partner as the Only Witness 00:01:51 Couples and Vulvodynia, Earlier Episode 00:03:33 One in Four, an Overlooked Reality 00:04:06 Real Mechanisms, Real Treatments 00:05:02 Four Parts; a Note Before We Start 00:07:00 The Sexual Script Both of You Inherit 00:07:49 Sex as Penetration, Foreplay as Warm-Up 00:08:33 Losing Him, Not Being Enough 00:09:50 Why She Hears Something Different 00:10:33 Pain and Desire, the Body's Protection 00:11:54 Rejection, and Fear of Any Touch 00:12:31 The Cycle You Both Get Caught In 00:13:12 Sponsor: Pelva 00:15:04 Sponsor: Origin 00:16:39 Naming It Out Loud 00:18:30 Us Against This, Not Each Other 00:19:43 Holding the Hope on Her Behalf 00:20:19 Being Told Nobody Knows Why 00:21:43 What We Actually Do Know 00:22:35 Seven Rejections, Finding the Eighth 00:24:12 Tool: Penetration off the Pedestal 00:25:43 Intimacy With No Required Destination 00:27:02 Natalie Rosen, Three Partner Responses 00:27:56 Solicitous Support and More Pain 00:28:42 Facilitative Support and Lower Pain 00:29:40 Tool: What to Actually Ask Each Other 00:31:04 Tool: Letting Her Initiate 00:31:40 You Are Allowed to Be Struggling 00:32:58 Your Feelings Are Not Hers to Fix 00:33:30 Facing It Together 00:34:16 Closing Thoughts

If you are googling vestibulectomy recovery at 2am, this one is for you. Bonnie Gross has had the surgery twice, ten years apart, and she is unusually good at describing it - she wrote and executive produced Lady Parts, the award-winning comedy based on the first one. We recorded this four weeks after her second. Most of this conversation is the practical side she could not fit in the film: the pre-surgery shopping list, the recovery timeline week by week, the insurance denial, the graft taken from inside her cheek, and what dilator work is really like afterwards. Sponsors: Pelva - pelva.com , code TWTC10 for 10% off Origin - theoriginway.com/TWTC , code TWTC for a free month of OnTrack Connect with Bonnie: IG: @ladyparts_film Website: ladypartsfilm.com Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter: https://tinyurl.com/4h4snzzd Support the podcast: https://tinyurl.com/mtxnzhsd Chapters: 00:00:00 Cold Open: Lady Parts Trailer 00:01:29 Welcome, Episode Overview 00:02:58 Bonnie Gross, Four Weeks Post Op 00:04:06 Lady Parts, Comedy Drama, True Story 00:06:31 College, Penetration, Clothes, Sitting 00:07:17 Three Years Searching; Gaslighting at 19 00:10:43 Dr. Amy Stein, Referral to Dr. Goldstein 00:11:14 Cost, Q-Tip Test, Being Believed 00:12:05 Ruling Out Hormonal Vestibulodynia 00:13:33 Surgery on the Table; Capsaicin 00:17:06 Vestibule Clock, 12 O'Clock, Urethra 00:17:46 Nerve Endings Left, Buccal Graft 00:18:49 Endometriosis, Hypermobility Overlap 00:20:09 Denied as Cosmetic, $10,000, No Code 00:21:12 Eighty Percent Relief, Ten to Four 00:22:28 Sponsor: Pelva 00:23:54 Sponsor: Origin 00:25:29 Practical Prep; Sitz Baths 00:27:35 Peri Bottle, Pee Pads With Adhesive 00:28:38 Nightgowns, Robes, Going Commando 00:29:12 Ice Packs, Liquid Meds, Soft Foods 00:30:41 Outpatient Surgery, Going Home 00:32:14 Legs Together, No Sitting, No Shower 00:33:13 Six Weeks in Bed, Needing Full Care 00:34:14 Pain by Phase, 24 Hours to Two Weeks 00:36:47 Mouth Pain, Graft Site, Fast Healing 00:38:12 Walking by Day Two, Itchy Stitches 00:38:52 Tool: Take the Pain Meds 00:39:24 Stitches, Donut Pillow, Back to Work 00:41:41 Clitoral Adhesions, Hood Retraction 00:43:17 Physiotherapy, Scar Tissue, Dilators 00:46:54 Tool: A Chair at the Edge of the Bath 00:48:10 Time Off Work, Desk Jobs, Commuting 00:51:03 Mesh Undies, Ice Packs, Baby Food 00:53:52 Periods in Recovery, Free Bleeding 00:55:19 IUD, No Period Through Surgery 00:56:33 Making Lady Parts, Ten Years 01:00:53 Life Savings, Making the Film, On Set 01:02:01 Festivals, Distribution, Screenings 01:04:57 Where to Watch: Prime, Tubi, Kinema 01:06:12 GoFundMe, Where to Find Bonnie 01:07:20 Outro, Reviews, Supporting the Show

What does it actually mean to have a strong pelvic floor - and is strong even the right thing to chase? Kimberlee Sullivan is a board-certified women's health physical therapist and Head of Clinics at Origin, where she leads nationwide clinical strategy. She has spent over twenty years in pelvic floor PT and founded her own Austin clinic, Sullivan Physical Therapy, in 2005. We cover the difference between strong and healthy, what the 0 to 5 strength score does and does not measure, why tight is not the same as strong, and how a constantly contracted pelvic floor gets weaker over time. Kimberlee also walks through relaxation versus lengthening, reverse kegels and straining, breath work, at-home tools, and why she does not have a five out of five herself. If you are dealing with hypertonicity, postpartum, or have only ever been told to do your kegels - start here. Kimberlee demonstrates much of this on camera, so watch on YouTube or Apple if you can. Sponsors: Pelva: pelva.com , code TWTC10 for 10% off Origin: theoriginway.com/TWTC , code TWTC for a free first month of On-Track Connect with Origin: Origin: theoriginway.com Instagram: @theoriginway Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter: https://tinyurl.com/4h4snzzd Support the podcast: https://tinyurl.com/mtxnzhsd Chapters: 00:00:00 Intro 00:01:58 Kimberlee Sullivan, Origin 00:03:30 Strong vs Healthy 00:05:08 Muscle Tone, Bicep Analogy 00:06:38 Sucking in Your Stomach, Bracing 00:07:52 Relaxation vs Lengthening 00:09:14 The Contraction Spectrum 00:10:10 Postpartum Score, 0 to 5 Scale 00:10:52 Manual Muscle Testing, Grades 00:11:37 Healthy at Three, Dysfunction at Five 00:14:10 Tight vs Strong, Constant Kegels 00:15:51 Tight for Whom, Societal Pressure 00:16:44 Does Tight Mean Weak 00:17:45 Losing Strength Over Time 00:18:45 Internal Exam, Thigh vs Neck 00:19:53 False Positives, Testing Both Sides 00:21:20 Hypertonicity, Learning to Lengthen 00:21:56 Basket and Balloon 00:22:34 Tool: The Soft Spot Check 00:23:49 Reverse Kegels, Down and Out 00:24:32 Straining, Micro Tears 00:27:04 One Long Kegel, Rest as Pushing 00:27:52 Hotel Lobby, Elevator, Garage 00:29:09 Not Knowing Your Baseline 00:29:49 Sponsor: Pelva 00:31:39 Sponsor: Origin 00:33:30 Breath, Diaphragm, Pelvic Floor 00:35:04 Fight or Flight, Chronic Pain 00:35:55 Chest vs Belly Breathing, 360 00:37:02 Reverse Kegel vs Breath 00:38:40 At-Home Devices 00:39:15 Tools, Getting Assessed First 00:40:02 The 100 Kegels a Day Myth 00:40:47 Tool: Finger Biofeedback 00:41:54 Partner Check, Dilators 00:42:40 Movement, Coordination 00:43:39 Perifit, Kegel Devices 00:44:41 Reinforcing a Contracted State 00:46:33 Chasing Healthy, Not Perfect 00:47:50 Incontinence as Transient 00:48:21 Stress, Illness, Life Stages 00:50:00 Being Your Own Advocate

Olivia lived with chronic pelvic pain for years - a constant dull, dragging ache on her left side that worsened when she sat or bent down - while doctors dismissed her fatigue and brain fog as just being a tired mother. What finally explained it wasn't the vascular surgeon who wanted to remove a vein in her leg. It was an interventional radiologist who suspected pelvic congestion syndrome, sent her for the right imaging, and found she also had May-Thurner syndrome. That diagnosis led her to dedicate her Instagram and a new symptom-checker platform to helping other women connect the dots. We go through her full story and what treating pelvic venous disorders actually involves. Thank you to our sponsors for making sure these conversations stay free for everyone: Pelva: https://lddy.no/1pmrf?afmc=TWTC10 Use code TWTC10 at checkout to receive 10% off your first order. Origin: http://theoriginway.com/twtc Use promo code TWTC to get your first month of Origin's On-Track membership free: Connect with Olivia: Instagram: https://www.instagram.com/kinuum_flow/ Symptom checker: https://kinuum.com/ Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter: https://tinyurl.com/4h4snzzd Support the podcast: https://tinyurl.com/mtxnzhsd 00:00:00 Intro 00:04:21 Pain Onset, Suspected Muscle Strain 00:05:26 Constant Pain, Sitting & Bending 00:06:23 Dull Dragging Ache, Left Pelvic Floor 00:07:00 Postpartum Fatigue, Brain Fog, Dismissal 00:08:12 Varicose & Spider Veins Explained 00:09:50 Non-Healing Wound, Circulation Clue 00:10:22 Diagnostic Delay, Grief 00:11:39 PCOS Misdiagnosis, MRI Denied 00:13:15 Interventional Radiologist vs Vascular Surgeon 00:14:00 Nearly Unnecessary Surgery, Second Opinion 00:14:50 Being Believed, MRI Referral 00:16:33 Duplex Ultrasound, MRI with Contrast 00:17:15 Venogram, Real-Time Blood Flow 00:18:56 Sponsor: Pelva 00:20:45 Sponsor: Origin 00:22:20 Pelvic Venous Disorders, Umbrella Term 00:23:38 Congested vs Compressed Veins 00:24:18 May-Thurner, Left Iliac Vein, Stents 00:25:55 Pregnancy, Vein Stretching; Men 00:27:16 Hypermobility, EDS Correlation 00:28:06 ISSWSH, Siloed Medicine, Comorbidities 00:29:38 Everything Is Connected 00:30:35 Procedure 1: Coil Embolization 00:31:05 Procedure 2: Laser Ablation, Recovery 00:32:20 Procedure 3: Sclerotherapy 00:33:21 Pain-Free, Stress-Related Flare-Ups 00:34:09 Life After Treatment, Brain Fog Gone 00:35:00 Grief for Lost Years, Validation 00:36:40 Why Closing a Vein Works 00:37:51 Realistic Expectations 00:38:33 Tools: Walking, Hydration, Inflammation 00:39:50 When to Seek Answers, Getting a Referral 00:41:14 Finding Trusted Specialists 00:43:14 Where to Find Olivia 00:44:28 Support the Podcast

Sheren Gaulbert lived with severe vulvar pain for ten years — bedridden, on high doses of amitriptyline, and told by a leading specialist to consider giving up work. What changed things wasn't a new medication or a new specialist. It was a self-hypnosis script she recorded herself off the back of a book she picked up in a bookshop, something a friend had dismissed as just the latest fad. That breakthrough led her to train as a cognitive hypnotherapist, and she's now a Trustee of the UK's Vulval Pain Society. We go through her full story and what cognitive hypnotherapy actually involves. Thank you to our sponsors for making sure these conversations stay free for everyone: Pelva : https://lddy.no/1pmrf?afmc=TWTC10 Use code TWTC10 at checkout to receive 10% off your first order. Origin: http://theoriginway.com/twtc Use promo code TWTC to get your first month of Origin's On-Track membership free: Connect with Sheren: Website: the-ultimate-you.com Youtube: https://www.youtube.com/@VulvalPainSocietyUk Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter: https://tinyurl.com/4h4snzzd Support the podcast: https://tinyurl.com/mtxnzhsd Timestamps: (00:00:00) Cold open (00:00:15) Intro (00:01:07) Sheren's story begins — law school & early symptoms (00:03:27) Onset of pain in her early 20s (00:04:14) Starting amitriptyline & dropping out of law school (00:05:41) "You've already seen the best person" (00:06:34) Told to consider bed rest & quitting work (00:08:24) Amitriptyline climbing to 95mg over 10 years (00:09:01) The nocebo effect (00:10:03) Ten years of excruciating pain (00:11:30) Isolation & finding the Vulval Pain Society (00:12:57) Physio & trialing therapies methodically (00:14:08) Restrictive diets & early self-hypnosis that didn't work (00:16:09) A friend mentions "the latest fad" (00:17:32) Recording her own hypnosis script (00:18:34) The values-based turning point (00:20:54) Deciding to help others (00:22:11) Sponsor: Origin (00:23:54) Sponsor: Pelva (00:25:13) Man's Search for Meaning (00:26:17) Training to become a cognitive hypnotherapist (00:27:39) What is cognitive hypnotherapy? (00:29:02) Predictive processing & pain (00:33:39) The trance state, explained (00:36:32) Debunking stage hypnosis (00:37:32) Undoing old beliefs, EMDR & her recovery "trio" (00:43:20) Who she works with (00:46:18) The pain science debate (00:49:51) What makes her hopeful (00:52:01) "There is no shame" (00:52:48) Where to find Sheren (00:53:53) Outro & two-week break

What does it actually cost to get taken seriously when you're in pain? For the average woman with vulvovaginal or pelvic pain in the US, it's about $18,000 a year - paid entirely out of pocket. Today I'm speaking with Carmen Rising, a Brooklyn-based writer whose reporting on vulvovaginal pain has recently run in The New York Times and The Guardian. She came to this as a patient herself, and in this episode we get into the real economics of chronic pelvic pain, why the insurance system fails these conditions almost by design, and how an unregulated wellness industry has rushed in to fill the gap medicine left wide open. — Thank you to our sponsors for making sure these conversations stay free for everyone: Pelva: https://lddy.no/1pmrf?afmc=TWTC10 Use code TWTC10 at checkout to receive 10% off your first order. Origin: http://theoriginway.com/twtc Use promo code TWTC to get your first month of Origin's On-Track membership free. — *Links:* https://www.nytimes.com/2026/05/19/well/vaginal-health-wellness-products.html ? https://www.theguardian.com/wellness/2026/jun/12/pelvic-pain-costly-expense *Connect with Mathilde:* * IG: @theworldstightestcommunity * Website: theworldstightestcommunity.com * Newsletter: https://tinyurl.com/4h4snzzd * Support the podcast: https://tinyurl.com/mtxnzhsd — Timestamps: (00:01:22) How Carmen got into this world — her own decade-long diagnosis journey (00:03:15) Overview of her NYT and Guardian pieces (00:03:38) The Guardian piece: unpacking the $18,000-a-year figure (00:04:16) Where the $31–72 billion economic burden actually comes from (00:06:00) Diagnostic delay as the biggest cost driver (00:06:55) Paying cash — Stephanie Berman's $40,000 story (00:07:50) Diagnostic trial-and-error, and the burden beyond dollars (00:08:51) "A dumpster fire of brokenness" — how insurance fails these conditions (00:11:42) Hysterectomy reimbursement vs. a knee replacement (00:12:27) Mathilde's own insurance dispute in the UK (00:13:46) Grassroots efforts: Tightlipped and the Aziza Project (00:14:47) What it would take to close the gap (00:17:36) The US healthcare system and the policy-level problem (00:18:11) "A wealthy white woman's problem" (00:20:03) Why "pain during sex" undersells the whole picture (00:23:35) Sponsor: Origin, with founder Carine Carmy (00:31:18) Sponsor: Pelva (00:33:04) The Vaginal Wellness Boom (00:33:32) Noticing targeted ads (00:37:01) "OBGYN backed" and "evidence based" (00:37:51) The core critique: wellness fills the gap medicine leaves open (00:41:15) Wellness companies' profit motives vs. big pharma (00:42:23) The counterargument: could market demand drive real research? (00:45:11) Vaginal microbiome test kits (00:45:41) Unregulated microbiome testing and diagnostic claims (00:48:10) Yeast infections, vulvar pain, and at-home test sensitivity (00:48:59) PCR swabs, Microgen DX, and the repackaging critique (00:51:07) The real issue — interpreting results without guidance (00:53:16) Outro

What does a groundbreaking study on clitoral nerves, a Norwegian novel about a man who moves into the forest, and one question from Dr. Rachel Rubin have in common? This week's solo episode. This episode is kindly sponsored by Pelva . Use code TWTC10 at checkout to receive 10% off your first order. (I earn a commission if you purchase through my link.) In this episode, I cover four things that have been living in my head: a new piece of research out of Amsterdam that is rewriting what we thought we knew about clitoral anatomy, a book recommendation that hit unexpectedly close to home, a personal update on two new treatments I’m trying, and something I’ve been quietly building in the background - and that I have finally decided to say out loud. The Amsterdam study used 3D imaging technology to map the main sensory nerve of the clitoris down to a thousandth of a millimeter - and what they found contradicts what we thought we knew. I break down what the research actually shows, why it matters for pleasure, and why it has direct implications for surgery. Study referenced: Lee, J.Y., de Bakker, B.S., et al. (2026). Neuroanatomy of the clitoris. bioRxiv. https://doi.org/10.64898/2026.03.18.712572 I also talk about finally accessing pelvic floor Botox and topical estrogen after years of trying, what it felt like to be offered something that would physically do something rather than just be redirected to home exercises, and what a strange little Norwegian novel taught her about the particular exhaustion of always being the capable one. And then there's the thing I’ve been afraid to build - but that just makes sense. In this episode: The history of how the clitoris has been found, lost, denied and erased over 2000 years What the new Amsterdam study found and why the old nerve maps were wrong Why this matters for surgery, FGM reconstruction, and our basic understanding of pleasure The Norwegian concept of being flink - and why it resonated so deeply Pelvic floor Botox: what it is, why Mathilde tried it, and what the appointment was like Topical estrogen and the hormonal element of vulvovaginal pain The question Dr. Rachel Rubin asked that Mathilde hasn't been able to stop thinking about What Mathilde is building and how you can get involved at this early stage Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter • • Support the podcast

Why does desire so often disappear after sex has become painful - and is there actually anything you can do about it? In this episode, I sit down with Dr. Corey Babb, a board-certified gynecologist and one of my favorite voices in sexual medicine, whose Substack writing on desire and arousal is some of the clearest thinking on these topics out there. He returns to the podcast to set the record straight on two things we constantly confuse: desire and arousal. We get into why these are two completely separate processes, and why - using Dr. Babb's "waterfall" model - desire is almost always the last thing you treat, after pain, arousal, and orgasm. We talk about the neuroscience underneath all of it: how the brain learns to associate sex with discomfort, what neuroplasticity has to do with desire returning, and why it can take time even after the pain itself is resolved. Dr. Babb also explains the two FDA-approved drugs for low desire in women, Addyi and Vyleesi, where they fit in, and why it's striking that these are the only two we have - more than thirty years after Viagra. We close on the most validating idea in the whole conversation: if you've had pain for a sustained period, low desire isn't a personal failing. It's expected, it's explainable, and there are people who know how to treat it. Whether you're navigating pain and a desire that's changed, a partner trying to understand, or a clinician - I think you'll take a lot away from this one. This episode is kindly sponsored by Pelva . Use code TWTC10 at checkout to receive 10% off your first order. (I earn a commission if you purchase through my link.) In this episode: The difference between desire and arousal, and why it matters Dr. Babb's "waterfall" model: pain, arousal, orgasm, and why desire comes last Spontaneous vs reactive desire, and where the idea of "spontaneous" desire came from How the brain learns to associate sex with discomfort - and how it can relearn What neuroplasticity has to do with desire returning after pain The two FDA-approved drugs for low desire in women, and where they fit in Why low desire after sustained pain is expected, not a personal flaw Connect with Dr. Corey Babb: https://www.instagram.com/dr.coreybabb/?hl=en / https://www.tiktok.com/@dr.coreybabb https://www.facebook.com/DrCoreyBabb/?_rdr https://substack.com/@drcoreybabb Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Sign up to the newsletter • • Support the podcast

Why does the body sometimes hold onto pain long after there's a clear physical reason for it? And what would it take to actually shift that? In this episode, I speak with Brooke Bralove, a Licensed Clinical Social Worker (LCSW-C), psychotherapist, AASECT Certified Sex Therapist, and Certified Master ART Practitioner with over 20 years in private practice. After accelerated resolution therapy (ART) resolved her own trauma in just two sessions, she trained in the modality and now specialises in brief trauma treatment, including for people with pelvic and sexual pain. We get into what ART actually is and how it differs from both traditional talk therapy and EMDR - using rapid bilateral eye movements to replicate REM sleep and change the way the brain stores distressing images and the sensations that come with them. Brooke explains why she often sees people who've done the Botox, the pelvic floor PT, and the talk therapy and still aren't functioning the way they want to. We talk about the science of why the eye movements seem to help, the difference between "big T" and "little t" trauma, and how ART can be used for things well beyond pelvic pain - from medical trauma to body image to decision-making. Whether you've exhausted your options and feel stuck, or you're simply curious about what trauma work can look like beyond years of talk therapy, I think you'll take a lot away from this one. This episode is kindly sponsored by Pelva . Use code TWTC10 at checkout to receive 10% off your first order. In this episode: What accelerated resolution therapy (ART) is and how it differs from talk therapy and EMDR How bilateral eye movements replicate REM sleep to reconsolidate memories "Keep the knowledge, lose the pain" - what ART changes and what it doesn't Why pelvic pain can trace back to something from years or decades ago The difference between "big T" and "little t" trauma How medical trauma and gaslighting can play into chronic pain What ART can be used for beyond trauma - body image, decisions, feeling stuck How Brooke holds hope for skeptical clients How ART works equally well virtually or in person Connect with Brooke Bralove: Website: brookebralove.com Instagram & Facebook: @BrookeBralovePsychotherapy ART therapist directory: acceleratedresolutiontherapy.com Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com • • Support the podcast

What happens to the person standing closest to your pain - the one who witnesses it but is almost never asked about? In this episode, I speak with Linn Myrtveit-Stensrud, a clinical psychologist and postdoctoral researcher at UiT The Arctic University of Norway. Linn has spent her career studying vulvodynia in heterosexual relationships - specifically, how partners respond to pain, and how those responses can shape the pain itself. She is one of the few researchers focusing on a piece of this puzzle that most of us have lived but rarely see studied. We start with the criticism her work attracted when it went viral - the accusation that centering the male partner was a distraction from the women in pain - and why she sees that reaction as telling us something important about the anger and grief running through these communities. From there, we get into what actually happens to a couple when they have no name for what's wrong, why the partner is so often the only witness to how challenging things can get, and how a partner's response - whether negative, solicitous, or facilitative- can measurably influence pain outcomes. Linn also explains why "psychological" so often becomes a dead end in women's pain research, and shares what makes her hopeful: new research funding, more vulvar clinics, and the rise of patient organizations changing the system from the ground up. Whether you're living with vulvodynia, you're the partner trying to understand it, or you think carefully about how medicine treats women's pain - I think you'll take a lot from this one. This episode is sponsored by Pelva . Use code TWTC10 at checkout to receive 10% off your first order. In this episode: Why centering the partner's experience drew criticism - and what that backlash reveals What happens to a couple when they have no name for the pain Why the partner is so often the only witness to how bad it really gets How a partner's response can measurably influence pain outcomes The problem with labeling women's chronic pain "psychological" Why master's students leave this field - and what that costs the research Whether vulvodynia affects fertility, pregnancy, and childbirth What makes Linn hopeful about where this field is heading Connect with Linn Myrtveit-Stensrud: https://www.instagram.com/kvinnehelsepsykologen_phd/ Connect with Mathilde: IG: @theworldstightestcommunity Website: theworldstightestcommunity.com Support the podcast

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: Book: When Sex Hurts @jillkrapfmd Website 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.

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: Website: tightlipped.org Instagram: @ tightlippedorg Connect with Mathilde: Instagram: @theworldstightestcommunity Website: theworldstightestcommunity.com Support the podcast

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 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 @theworldstightestcommunity Or just share this episode with someone who needs it :) Connect with Mathilde Instagram: @theworldstightestcommunity • Website: theworldstightestcommunity.com

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: Saige's Instagram Bloom Pelvic Therapy Based in Tampa Bay, Florida (three locations: Tampa, St. Petersburg, and Lutz) Connect with Mathilde: Instagram Website

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: Instagram: @sassyy_ass Essay: "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

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: @theworldstightestcommunity Website: theworldstightestcommunity.com Email: mathilde@theworldstightestcommunity.com 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

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: Website: medroots.com Email: info@medroots.com Instagram: @medrootscbd Connect with Mathilde: Instagram: @theworldstightestcommunity Website: theworldstightestcommunity.com