The vestibule: hidden source of pain

Pelvic pain, bladder symptoms, and sexual health concerns are incredibly common in people with Ehlers-Danlos Syndromes, yet they’re often misunderstood, dismissed, or treated in isolation.

In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Rachel Rubin, a board-certified urologist and nationally recognized leader in sexual medicine, to unpack why connective tissue disorders, mast cell activation, dysautonomia, and hormonal shifts so often collide in the pelvis. Together, they explore why bladder symptoms can occur without infection, why pelvic floor therapy alone may not be enough, and how hormones influence tissue health, inflammation, and pain.

The conversation dives into underrecognized drivers of symptoms, like vestibular pain, nerve involvement, mast cell activity, and hormonal suppression from birth control, while also addressing why many patients are left searching for answers for years. Dr. Rubin explains why sexual health is inseparable from overall health and how multidisciplinary, patient-centered care can dramatically improve quality of life.

For anyone living with a connective tissue disorder who has been told “everything looks normal” despite ongoing pelvic or bladder symptoms, this episode offers clarity, validation, and a new framework for understanding what may actually be happening.

Takeaways:

• Pelvic and bladder symptoms in EDS are rarely caused by just one issue, they often involve hormones, nerves, mast cells, and musculoskeletal factors together.

• Pain with tampons, sex, or sitting is not normal, even if exams and tests appear normal.

• Hormonal changes and suppression can significantly affect pelvic tissue health, contributing to pain and urinary symptoms.

• Pelvic floor therapy helps many patients, but not all, especially when underlying tissue or hormonal issues go unaddressed.

• Sexual health is a quality-of-life issue, not a luxury, and deserves serious medical attention in hypermobility care.

Find the episode transcript here.

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Want to learn more about the UVA EDS Center?

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UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

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