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Doctor and Patient

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Find a Provider/Organization

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How do I know if my provider is knowledgeable and skilled?

Most likely, you will be able to tell within the first five minutes of how they address, assess, screen, and physically evaluate you. Those that go the extra mile to understand your full history are keepers. Here are some resources that generally have the best listed in your area.

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For Vulvodynia, Vestibulodynia, Pelvic Floor Dysfunction, Bowel and Bladder Issues:

National Vulvodynia Association

Pelvic Guru

ISSM

International Society for the Study of Women's Sexual Health (ISSWSH)

IPPS 

San Diego Sexual Medicine

Dr. Rachel Rubin - Washington DC

The Centers for Vulvovaginal Disorders

Dr. Corey Babb - The Haven Center in Oklahoma

Vulvar Clinics listed by The National Vulvodynia Association

Google Doc of Providers Who Perform Vestibulectomy Surgery

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Pudendal Neuralgia:

Pudendal Hope

Pudendal Association

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Endometriosis:

When looking for a good endometriosis/adenomyosis specialist, search for someone who has minimally invasive surgery experience. Anyone who is still delivering babies or performing other surgeries does not have the skill to perform endometriosis surgery. They should have completed well over 1000 surgeries. If endometriosis is not removed properly, other issues can arise. I must say with caution that there is no such thing as a nook vetted surgeon. While many of the doctors may have competent training and skill, the Nancy's Nook admins create their "doctor list" based on positive experiences by patients, which is subject to selection bias. Negative reviews of surgeons are not allowed and patients who do not have a good experience with a doctor are censored.

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Extrapelvic Not Rare

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Hip Abnormalities:

Periacetabular Osteotomy Facebook (FB) Group has a list of surgeons on their FB page

International Hip Dysplasia Institute

Academic Network of Conversational Hip Research Outcomes

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Ehlers-Danlos Syndrome:

Ehlers-Danlos Society

Ehlers-Danlos Professionals Directory

Ehlers Danlos Syndromes

Prism Spine and Joint

Mayo Clinic in Florida

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Mast Cell Activation Syndrome

Mast Attack

Mast Cell Action

MCAS and Vulvodynia

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Many of the Facebook and Reddit groups have their own provider list as well. Type in the condition of interest in the search bar and join one of the groups. They should have some type of file.

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