Help with persistent genital arousal disorder (PGAD).
October 11, 2024 9:22 AM Subscribe
The last several months, I've been dealing with what I believe is persistent genital arousal disorder. I desperately need help, but am finding it difficult to plot out next steps.
The problem is is that PGAD is a relatively new diagnosis and can require multidisciplinary assistance to diagnose and treat effectively, and you likely know how that can go.
I've talked to many specialists at my local healthcare system, and every single one of them is like, "I don't know what that is, and I can't help you with it."
I've had very positive experiences in the past with the Cleveland Clinic which is right down the road. They have a page dedicated to PGAD and so I would like to make an appointment to go see someone there.
But... I'm not sure how. That snippet on the Cleveland Clinic website says, "You should seek help from your healthcare provider if you’re experiencing symptoms that keep you from having a healthy sex life or that cause distress. Getting help is especially important with PGAD when the experience of genital arousal can disrupt your life and harm your mental health. It may take some time to locate treatments that work best for you once you’re diagnosed with PGAD. Your care may require a collaborative approach that involves your provider and a behavioral health specialist, like a counselor or therapist. The good news is that although this diagnosis is new, more and more people are receiving the care needed to manage symptoms. Don’t let embarrassment prevent you from getting the help you need to cope with PGAD."
Great! Except, like, it doesn't suggest a specific doctor, or department, and I can't find it listed under specialties... and I want to make sure if I get an appointment it's with the right person and that person has actually heard of this and can help me. Is it a pelvic specialist? A urologist? A spine specialist? A neurologist?
The only recourse that I can think of is to just call the general appointment number and ask, but I can't imagine the person manning the phones has the medical expertise to understand the situation and direct me specifically to a doctor that has this as a specialty.
I... don't know what to do, and I am so very tired.
The problem is is that PGAD is a relatively new diagnosis and can require multidisciplinary assistance to diagnose and treat effectively, and you likely know how that can go.
I've talked to many specialists at my local healthcare system, and every single one of them is like, "I don't know what that is, and I can't help you with it."
I've had very positive experiences in the past with the Cleveland Clinic which is right down the road. They have a page dedicated to PGAD and so I would like to make an appointment to go see someone there.
But... I'm not sure how. That snippet on the Cleveland Clinic website says, "You should seek help from your healthcare provider if you’re experiencing symptoms that keep you from having a healthy sex life or that cause distress. Getting help is especially important with PGAD when the experience of genital arousal can disrupt your life and harm your mental health. It may take some time to locate treatments that work best for you once you’re diagnosed with PGAD. Your care may require a collaborative approach that involves your provider and a behavioral health specialist, like a counselor or therapist. The good news is that although this diagnosis is new, more and more people are receiving the care needed to manage symptoms. Don’t let embarrassment prevent you from getting the help you need to cope with PGAD."
Great! Except, like, it doesn't suggest a specific doctor, or department, and I can't find it listed under specialties... and I want to make sure if I get an appointment it's with the right person and that person has actually heard of this and can help me. Is it a pelvic specialist? A urologist? A spine specialist? A neurologist?
The only recourse that I can think of is to just call the general appointment number and ask, but I can't imagine the person manning the phones has the medical expertise to understand the situation and direct me specifically to a doctor that has this as a specialty.
I... don't know what to do, and I am so very tired.
I would call the general number and just try. Maybe all they have to do is type the acronym into some database system, you know? If they identify a specific clinic/name, then you can make more calls and confirm it's the right option. If they don't, or if it isn't and nobody else can direct you either, I'd politely contact the Office of Patient Experience and explain the issue.
posted by teremala at 10:29 AM on October 11
posted by teremala at 10:29 AM on October 11
Now I also notice that the "appointments & locations" link at the bottom of that page you linked goes to their "Ob/Gyn & Women’s Health Institute" page, so actually I'd try them first regardless of whether that's a department you'd typically seek out treatment from.
posted by teremala at 10:47 AM on October 11 [1 favorite]
posted by teremala at 10:47 AM on October 11 [1 favorite]
Echoing: just call them and have a conversation with the human who answers the phone. They won't be embarrassed. They want to help people. They'll give you next steps.
posted by seanmpuckett at 11:02 AM on October 11 [1 favorite]
posted by seanmpuckett at 11:02 AM on October 11 [1 favorite]
Agree with those saying just call—I would probably start with either the Women's Health Institute or the urologists, depending on how you identify. Or since you say you've had success at the Cleveland Clinic before, you could contact another doctor you liked there and ask them who they'd recommend reaching out to.
But also, I wanted to lay out what I've done when dealing with lesser-know medical issues. I've had a lot of success going to Google Scholar (or an academic database if you have access), searching for recent papers on this specific medical issue, and looking up the authors of those papers. That will often lead me to a specialist who is knowledgable on my issue; it they're not in my area, I might be willing to travel for a one-time visit, or I might get in touch and ask if they can recommend anyone near me. So for instance, the first hit I got for PGAD is Persistent Genital Arousal Disorder (PGAD): A Clinical Review and Case Series in Support of Multidisciplinary Management, and it looks like the authors of that paper are in Minnesota, but you might find others closer to you.
It sucks to do all this research when all you want is competent medical care, but sometimes it's the only way.
posted by Mender at 11:51 AM on October 11 [5 favorites]
But also, I wanted to lay out what I've done when dealing with lesser-know medical issues. I've had a lot of success going to Google Scholar (or an academic database if you have access), searching for recent papers on this specific medical issue, and looking up the authors of those papers. That will often lead me to a specialist who is knowledgable on my issue; it they're not in my area, I might be willing to travel for a one-time visit, or I might get in touch and ask if they can recommend anyone near me. So for instance, the first hit I got for PGAD is Persistent Genital Arousal Disorder (PGAD): A Clinical Review and Case Series in Support of Multidisciplinary Management, and it looks like the authors of that paper are in Minnesota, but you might find others closer to you.
It sucks to do all this research when all you want is competent medical care, but sometimes it's the only way.
posted by Mender at 11:51 AM on October 11 [5 favorites]
You might also do a search for "sexual medicine doctors Cleveland Clinic" or look under their "find a doctor" and search for sexual health. Priapism is an old fashioned term that you could use in searching for docs.
posted by brookeb at 10:28 PM on October 11
posted by brookeb at 10:28 PM on October 11
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posted by michaelh at 9:28 AM on October 11