Neurodivergence and Pelvic Pain: What ADHD and Autism Change in the Exam Room

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