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dancing1 (@dancing1)

Pelvic pain - Persistent genital arousal disorder (PGAD)?

Chronic Pain | Last Active: Jan 15 8:50pm | Replies (13)

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Below is a link to an Instagram page where you can find out more about personal experiences with this disorder and interviews with medical professionals working with this disorder (included additional link to Dr. Robert Echenberg interview at the end). Although the Pudendal nerves may be triggered, Dr. Echenberg views this as a pain dysfunction/processing disorder and is clear that it is not a sexual dysfunction disorder. (personally, I think the name “Pgad” is misleading and needs to be changed) On the Instagram page, you will read that “lack of healthcare provider knowledge” about this disorder was sited as one of the greatest barriers for getting help/treatment. In communicating with our community, the general feedback I received regarding their experience with medical professionals supported the fact that many (not all) medical professionals lacked knowledge about the topic, were uncomfortable discussing the issue, and appeared not interested in dealing with it. This includes medical professionals at the Mayo Clinic (have not yet heard from our community of any positive experiences at the Mayo Clinic regarding this issue —yet this is where many doctors tell their patients to go) Hopefully these negative experiences will change as more of us step forward to share our stories with the world and medical professionals.

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Replies to "Below is a link to an Instagram page where you can find out more about personal..."

I am a 75 year old woman with peas. I have lichen sclerosis which is regarded as N auto immune disease. As a result of flare ups I have Pgad since the lichen sclerosis injures and damages the tissue of the vulva including the clitoris. To control the LS and Pgad I use Clobetasol ointment applied topically and pregabalin (Lyrica) and amitriptyline to control the flare ups and Pgad. These medications do a fairly good job of controlling the pain, inflammation, and Pgad. I sympathize with Pgad patients. I know what it’s like and it’s no pleasure that is for sure. It took me years to get a proper diagnosis.