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/twtcConnect with Dr. Alexandra Dubinskaya:- Instagram, TikTok, YouTube: @DrUrogynConnect with Mathilde:IG: @theworldstightestcommunityWeb: theworldstightestcommunity.comNewsletter: https://tinyurl.com/4h4snzzdSupport: https://tinyurl.com/mtxnzhsdChapters:00:00:00 Introduction: Pelvic Pain After Birth00:01:34 Dr. Alexandra Dubinskaya00:02:09 Urogynecology, Birth as Risk Factor00:03:51 Informed Choice, What Women Are Not Told00:05:39 Painful Sex, Syndrome of Lactation00:06:28 Tearing, Episiotomy, Granulation Tissue00:07:00 Tool: Vaginal Testosterone, DHEA00:07:38 Silver Nitrate, Surgical Excision00:08:41 Conditions of Repair, Suture Sensitivity00:09:54 Scar Pain, Adhesions, Altered Anatomy00:10:25 Tool: Optimise Tissue Before Pelvic PT00:11:04 Pelvic Floor Trauma, Nerve Stretch00:11:47 Numbness, Paresthesia, Loose Vagina Myth00:12:44 Pudendal Neuralgia, Sitting, Positions00:13:15 Episiotomy Angle, Pudendal Nerve Injury00:14:08 Muscle Spasm, Nerve Compression00:15:22 Tool: Physical Therapy, Vibration, Heat00:15:58 Existing Pelvic Pain, C-Section Risks00:16:51 Tool: Epidural, Checks, Safe Words00:17:38 Choosing a Planned C-Section00:18:26 Information for Both Options00:19:12 You Are Not Alone, Finding a Provider00:20:17 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: @azizaprojectWebsite: azizaproject.orgFacebook: The Aziza ProjectConnect with Mathilde:IG: @theworldstightestcommunityWeb: theworldstightestcommunity.comNewsletter: https://tinyurl.com/4h4snzzdSupport: https://tinyurl.com/mtxnzhsdTimestamps:00:00:00 Introduction: Stephanie Berman00:02:34 The Aziza Project, Her Story00:03:28 Symptoms Begin 2011, Itching00:04:26 Family Doctor, OBGYN, Negative Tests00:05:01 Pelvic Floor PT, Couldn't Tolerate It00:06:07 Vulvar Pain Clinic, Chiropractor00:07:06 Painful Periods, Endometriosis00:08:10 Excision Surgery, Hysterectomy00:08:47 Layers of Pain, Lichen Sclerosus00:09:52 Dermatologist Visit, No Biopsy00:11:02 Step Therapy, Topical Steroids00:11:40 Biologic for Atopic Dermatitis00:12:12 "You Failed Those Meds"00:13:00 Leaving the Dermatologist, Instagram00:13:58 Instagram DM to Dr. Babb00:15:05 "How Did I Get So Lucky", Aziza Idea00:15:53 Pudendal Nerve Block, Botox00:17:41 Botox Under Conscious Sedation00:19:04 Five Rounds of Botox; Moving Abroad00:19:54 Telling a New PT What She Needs00:21:10 Vulvar Biopsy, Atopic Dermatitis00:22:34 Self-Advocacy After a Diagnosis00:23:37 Why Botox Wears Off, Muscle Memory00:25:24 Sponsor: The Pelvic People00:28:05 Sponsor: Origin00:29:41 Neurodivergence in the Clinical Room00:30:16 Describing Pain, Interoception00:31:38 Neurodivergence and Gynecologic Pain00:32:18 Trauma-Informed Care, Being Believed00:32:59 Tool: Finding a Provider Who Digs00:36:02 MRI, Pelvic Congestion Syndrome00:36:48 Masking in the Clinical Room00:37:22 Scheduled Drugs, Doctor's Letter00:38:47 Accommodating a Neurodivergent Brain00:41:57 ISSWSH, Menopause Society Directories00:43:37 Neurodivergence and Chronic Pain Rates00:44:58 The Aziza Project, How It Works00:47:08 Angel Flight, Free Flights to Tulsa00:48:28 Medical Debt, Care Credit00:50:02 27 Donors at $28 a Month00:50:43 Looking for Social Media Help00:52:05 Where to Find the Aziza Project00:52:36 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.SPONSORSPelva: 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/mariaulokomdinstagram.com/vulvai.coConnect with Mathilde:IG: @theworldstightestcommunityWeb: theworldstightestcommunity.comNewsletter: https://tinyurl.com/4h4snzzdSupport: https://tinyurl.com/mtxnzhsd00:00:00 Introduction, Dr. Maria Uloko00:02:24 Medication, Trial and Error00:03:35 Sexual Health Training00:04:25 Curable Conditions, No Diagnosis00:05:24 Chest Pain Analogy00:08:22 Symptoms vs Diagnoses00:09:20 Success Rates, 13-67%00:10:14 Root Cause, Burnout, VULVAi00:11:17 Mathilde's Diagnosis, Dismissal00:12:45 Crisis in Plain Sight00:13:37 Anatomy Study, 75% Gap00:14:37 Pelvic vs Vulvar Exam00:16:28 Cost of Misdiagnosis00:18:47 Sponsor: Origin00:21:12 Sponsor: Pelva00:22:44 Topicals, Systemics; a 10100:23:24 Vulvodynia, Parts of the Vulva00:24:48 Vestibule, 90% of Pain00:26:34 Hormonally Mediated Vestibulodynia00:27:44 Recurrent BV, Yeast; Q-Tip Test00:28:35 Birth Control, Acne, Hair Loss00:29:28 Tool: Estrogen, Testosterone00:30:06 Premenopausal Triggers, 99%00:30:44 IUDs, Rings, Implants00:31:24 Oral Pill, Testosterone, SHBG00:33:03 Staying on Birth Control00:34:50 Tool: Check Hormone Labs00:35:57 Recovery Timelines00:37:39 Neuroproliferative Vestibulodynia00:38:20 Congenital vs Acquired00:39:26 Gabapentin, Lyrica; Pudendal Nerve00:40:41 Wrong Drug, Wrong Diagnosis00:41:17 Vestibulectomy, 96% Success00:42:30 Partial vs Complete Surgery00:45:29 Europe vs US Practice00:46:54 When Surgery Is Indicated00:48:28 Nerve Medication Success Rates00:49:44 Hormonal and Nerve Pain00:50:36 Anesthesia Test, Nerve Blocks00:52:18 Living at a Four; Side Effects00:53:43 Pelvic Floor Dysfunction00:55:13 Primary vs Secondary Tension00:59:26 Pelvic Floor Physical Therapy01:00:00 Kegels, Why to Stop01:00:47 Tool: TENS, Acupuncture, Breath01:01:20 Muscle Relaxants, Suppositories01:01:52 Botox, Resetting the Muscles01:03:22 Clitorodynia, Clitoral Adhesions01:04:37 Clitoral Nerve Pain01:06:47 Lidocaine01:08:50 Compounded Topicals, ABG Cream01:10:44 Systemic vs Topical, Duration01:11:56 Emerging Treatments01:13:43 Endometriosis, Fibroids01:14:44 Mast Cells, Antihistamines01:16:11 VULVAi, Pre-Seed Round01:16:54 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.SPONSORSPelva: 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: @theworldstightestcommunityWebsite: theworldstightestcommunity.comSign up to the newsletter: https://tinyurl.com/4h4snzzdSupport the podcast: https://tinyurl.com/mtxnzhsdCHAPTERS00:00:00 Introduction00:00:36 The Email That Started This Episode00:01:09 The Partner as the Only Witness00:01:51 Couples and Vulvodynia, Earlier Episode00:03:33 One in Four, an Overlooked Reality00:04:06 Real Mechanisms, Real Treatments00:05:02 Four Parts; a Note Before We Start00:07:00 The Sexual Script Both of You Inherit00:07:49 Sex as Penetration, Foreplay as Warm-Up00:08:33 Losing Him, Not Being Enough00:09:50 Why She Hears Something Different00:10:33 Pain and Desire, the Body's Protection00:11:54 Rejection, and Fear of Any Touch00:12:31 The Cycle You Both Get Caught In00:13:12 Sponsor: Pelva00:15:04 Sponsor: Origin00:16:39 Naming It Out Loud00:18:30 Us Against This, Not Each Other00:19:43 Holding the Hope on Her Behalf00:20:19 Being Told Nobody Knows Why00:21:43 What We Actually Do Know00:22:35 Seven Rejections, Finding the Eighth00:24:12 Tool: Penetration off the Pedestal00:25:43 Intimacy With No Required Destination00:27:02 Natalie Rosen, Three Partner Responses00:27:56 Solicitous Support and More Pain00:28:42 Facilitative Support and Lower Pain00:29:40 Tool: What to Actually Ask Each Other00:31:04 Tool: Letting Her Initiate00:31:40 You Are Allowed to Be Struggling00:32:58 Your Feelings Are Not Hers to Fix00:33:30 Facing It Together00:34:16 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% offOrigin - theoriginway.com/TWTC, code TWTC for a free month of OnTrackConnect with Bonnie:IG: @ladyparts_filmWebsite: ladypartsfilm.comConnect with Mathilde:IG: @theworldstightestcommunityWebsite: theworldstightestcommunity.comSign up to the newsletter: https://tinyurl.com/4h4snzzdSupport the podcast: https://tinyurl.com/mtxnzhsdChapters:00:00:00 Cold Open: Lady Parts Trailer00:01:29 Welcome, Episode Overview00:02:58 Bonnie Gross, Four Weeks Post Op00:04:06 Lady Parts, Comedy Drama, True Story00:06:31 College, Penetration, Clothes, Sitting00:07:17 Three Years Searching; Gaslighting at 1900:10:43 Dr. Amy Stein, Referral to Dr. Goldstein00:11:14 Cost, Q-Tip Test, Being Believed00:12:05 Ruling Out Hormonal Vestibulodynia00:13:33 Surgery on the Table; Capsaicin00:17:06 Vestibule Clock, 12 O'Clock, Urethra00:17:46 Nerve Endings Left, Buccal Graft00:18:49 Endometriosis, Hypermobility Overlap00:20:09 Denied as Cosmetic, $10,000, No Code00:21:12 Eighty Percent Relief, Ten to Four00:22:28 Sponsor: Pelva00:23:54 Sponsor: Origin00:25:29 Practical Prep; Sitz Baths00:27:35 Peri Bottle, Pee Pads With Adhesive00:28:38 Nightgowns, Robes, Going Commando00:29:12 Ice Packs, Liquid Meds, Soft Foods00:30:41 Outpatient Surgery, Going Home00:32:14 Legs Together, No Sitting, No Shower00:33:13 Six Weeks in Bed, Needing Full Care00:34:14 Pain by Phase, 24 Hours to Two Weeks00:36:47 Mouth Pain, Graft Site, Fast Healing00:38:12 Walking by Day Two, Itchy Stitches00:38:52 Tool: Take the Pain Meds00:39:24 Stitches, Donut Pillow, Back to Work00:41:41 Clitoral Adhesions, Hood Retraction00:43:17 Physiotherapy, Scar Tissue, Dilators00:46:54 Tool: A Chair at the Edge of the Bath00:48:10 Time Off Work, Desk Jobs, Commuting00:51:03 Mesh Undies, Ice Packs, Baby Food00:53:52 Periods in Recovery, Free Bleeding00:55:19 IUD, No Period Through Surgery00:56:33 Making Lady Parts, Ten Years01:00:53 Life Savings, Making the Film, On Set01:02:01 Festivals, Distribution, Screenings01:04:57 Where to Watch: Prime, Tubi, Kinema01:06:12 GoFundMe, Where to Find Bonnie01:07:20 Outro, Reviews, Supporting the Show