PGAD - persistent genital arousal disorder

[Violet M]

Hi Sonya,

This illness can be very isolating. I hope some ladies (or men) from the UK will be able to give you some more information than I can about where to go for help in the UK. There are people here who understand, so you are not completely alone. I know it's hard while you are waiting for treatments though.

Sending hugs your way,

Violet

[nypain]

I did want to provide an update. I had a stent placed to treat the May-Thurner syndrome, which did nothing for the PGAD. It is quite frustrating to have had 2 different pathologies that could have contributed to my symptoms only to find treating both did not help.

I am scheduled for a nerve radiofrequency ablation on Friday and am having second thoughts, but I am also so tired of living like this that I feel like I have to try. I was scheduled to have a temporary peripheral nerve stimulator implanted in October, which I was also a little unsure of, that had to be cancelled due to a last minute insurance denial.

How are my fellow PGAD sufferers in the northern hemisphere holding up in this approaching winter? This is by far the most challenging season to dress around my pelvis seeing as I can’t wear pants/underwear/leggings. I favor loose-ish wool skirts with harem leggings underneath. I am considering a pair of pettipants since they are somehow trendy, although I find I am prone to wedgies if I wear shorts that are TOO LOOSE.

[April]

Hi Nypain,

I am so sorry to hear about the insurance denial for the stimulator. I wonder if others on this site who have received insurance coverage for a stimulator have advice on how to deal with insurance denials (e.g., what to put in an appeal)? It is a well established treatment so I am surprised by the denial (more well established, I think, than radio frequency ablation).

Have you searched the site for others' experiences with radio frequency ablation? I don't remember what the general pattern is, but I do remember some who didn't improve with that. But, that is true with all pn treatments. Violet might have a better sense of the overall picture.

Take care,
April

[Violet M]

Unfortunately, as with every treatment, radiofrequency ablation has mixed reviews and you won't necessarily know if it's going to help until you try it. I don't think I have heard of it being used for PGAD as opposed to pain. I can completely understand why you are willing to try it. I was willing to try just about anything.

Regarding the insurance denial, do you know how they coded it? PGAD can be considered a pain syndrome. Do you know if they coded it as being for pain? It's hard to see how they would deny a neurostimulator for pain but things don't always make sense with this disease, or with the insurance companies. Might be worth trying an appeal.

Violet

[nypain]

I did want to provide an update: the nerve ablation did not help. I feel fortunate that it did not seem to make my pain worse long term, although I had a really painful few days of burning.

The nerve testing during the ablation was unexpectedly terribly painful, and of course since it was a bilateral procedure, I had to experience it twice. I did have another nerve block for the ablation itself, it has been a few years since my first and only nerve block, and I didn’t realize how much “noise” this causes in the back of my head until having the nerve block.

My provider did appeal the nerve stimulator, but the denial was upheld.

I am considering if I want to pursue a consult for the surgical pudendal nerve decompression. It seems there are no surgeons who can perform this in NYC, so I will have to consider traveling to see Dr. Mark Conway or perhaps someone closer like Dr. Chris Lakhiani?

I have found harem yoga pants on Amazon to wear under my long wool skirts in the winter to try to stay warm, which is a real challenge when you can’t wear any kind of pants.

I use a Valium suppository, which helps me be able to sleep but is probably not great for my brain and I am almost certainly dependent on it now.

[Violet M]

Wow, that is unfortunate that insurance denied the neurostimulator. I have never heard of that happening before. You said the provider appealed it. Are you allowed now to appeal it yourself? That's what I did when the insurance wouldn't pay for my PNE surgery, although unfortunately my appeal wasn't successful. Sadly, there probably isn't much peer reviewed literature on the use of neuromodulation for PGAD but there may be some on neuromodulation for pudendal neuralgia or pelvic pain. You could check in pubmed.

I'm sorry to hear the nerve ablation wasn't successful. Sounds like a real ordeal.

You may want to research what surgical approach Dr. Conway and Dr. Lakhiani are using for surgery currently, and which surgical approach makes the most sense for your case.

Violet

[nypain]

I did consider further appeals, but truthfully was somewhat not sold on it. I also considered switching to a far more expensive plan through my job, which would have required even more pelvic floor PT for this as well. I would definitely have to switch to the more expensive plan FOR surgery if I am a candidate.

I have gotten some helpful things out of PT through 2 different providers (dilating twice a day helps control my symptoms somewhat), but it largely did flare me up. The last physical therapist I saw kept saying it was probably a nerve issue. It’s also a vicious cycle because the exercises that might well correct real muscle imbalances in my ankle and abdomen also caused flares and I never improved enough from many many weeks of PT and diligent home exercises. I’m happy for the folks it has worked for, but I am unfortunately not one of them.

[nypain]

A slight update: after reading through everyone’s surgery recovery experiences here, I am thinking that if I switch to a more expensive insurance anyway, I may as well try the nerve stimulator first, since a few months out of work is a lot. I may even try an appeal with my plan now, on the grounds that trying is free.

[April]

Hi nypain,

Yes, your experiences with pt not working match mine. Let us know if you are able to get the stimulator covered with an appeal or with the better insurance.

April

[Violet M]

Someone shared this article with me about successful treatment if PGAD with medication. Just one case but it sounds promising.

https://pmc.ncbi.nlm.nih.gov/articles/P ... /?hl=en-US

Some people have gotten relief via pudendal nerve release surgery but not everyone does, so hopefully this new treatment will provide relief to many people.

Violet