PGAD - persistent genital arousal disorder

[Violet M]

I was trying to find studies that would support the use of neuromodulation for pudendal neuralgia or related problems but I'm not finding enough conclusive studies, unfortunately. I was also trying to think of other ways they could code your diagnosis that would have studies to support it but I'm not coming up with anything at the moment. Maybe your physician would have some ideas on how to code it differently so that studies would support neuromodulation. It's a tough situation you are in. Do you know if your insurance will cover surgery if you decide to go that route?

Violet

[nypain]

Thanks for trying! I may ask my pain management doctor, Dr. Kirpekar (who is lovely and has at least helped me explore a lot of options) to connect me with the neurostim rep - maybe the rep has ideas on how to appeal.

If I am offered and keep UHC next year, it might be covered. My other option is that I know of is Aetna, which definitely does not, unfortunately.

I may ask about amitryiptline in the interim, since some on this board report success, but I am afraid that if I gain significant weight from it, doctors will blame all of my problems on the weight.

[Violet M]

That's a good idea to ask the pain management doctor and the rep. Hopefully they will have some ideas for you.

I used lexapro (an SSRI antidepressant) for PGAD symptom relief because I couldn't tolerate the side effects of tricyclic antidepressants very well. It didn't take away the problem entirely but it dampened the symptoms. I titrated off of it slowly a little while after surgery. I don't like taking meds but sometimes they can help you get through a difficult time. It's kind of trial and error to find what works for each person. Hope you find something that helps.

Violet

[eraser]

For pain the Amitripyline dose is low (I take 30 mg at the moment) so you shouldn’t have too many problems with it. I find it helpful for sleeping but otherwise was useless for nerve pain. Takes a few weeks to get used to it as initially it made me feel a bit dumb but that quickly wears off. Hopefully soon I will be able to come off of it, as slowly making more and more progress following surgery.

Thanks for trying! I may ask my pain management doctor, Dr. Kirpekar (who is lovely and has at least helped me explore a lot of options) to connect me with the neurostim rep - maybe the rep has ideas on how to appeal.

If I am offered and keep UHC next year, it might be covered. My other option is that I know of is Aetna, which definitely does not, unfortunately.

I may ask about amitryiptline in the interim, since some on this board report success, but I am afraid that if I gain significant weight from it, doctors will blame all of my problems on the weight.

[April]

Hi Nypain,

I also took amitriptyline (and a similar drug, nortriptyline), and it never affected by weight. It did help me sleep, and it was especially helpful with getting back to sleep with my multiple wake ups (to get ice). I think it might have also helped with pain---at least that was what I thought when I took it at the beginning and wasn't on any other drugs. So, I think it's worth a try. I did sleep more than normal on it, and was groggy if I didn't get a full night, so it has side effects.

I also wanted to mention that someone posted an article with a case study showing that a GLP-1 reduced PGAD symptoms. I think a poster on the forum also reported success with it. So, maybe your insurance would cover that? If nothing else, it may be a good option while you are waiting for surgery.

Here's the thread on that:
https://www.pudendalhope.info/forum/vie ... 081#p71081

Take care,
April