PGAD - persistent genital arousal disorder

[some-velvet-morning]

I'm perfectly happy to travel to see Goldstein. He's far and away the most knowledgeable person I've spoken to about PGAD and they're still trying to isolate where this is coming from. If they discover it's from the pudendal nerve, at that point I imagine I'll find a PN specialist. I don't live in the US so don't have insurance anyway so that's immaterial. Being in the US also means I can be supported by family members at appts.

In my right labia minora it's pinching, irritation, burning, electric shocks, itching, sensitivity. That doesn't feel like arousal to me. It's not constant--it will be constant some days of my cycle but then other days I'll just get intermittent pinching and some days nothing. Anal burning also doesn't feel like arousal--it's just burning or the sensation of something being in my anus. I only get arousal from my clitoris and that's fairly low level and doesn't last more than a few hours. And then about half the month I'm very nearly normal, with basically none of these symptoms except occasional labia pain.

Interesting what you said about estrogen. Goldstein gave me topical estrogen to rub into my thigh as we determined my symptoms are worst when estrogen is low (right before and during menstruation, with a small dip around ovulation). I've been too afraid to use it though!

I have read some about PNBs, here and elsewhere. I'm very wary. I just don't understand how else a pudendal nerve problem can be diagnosed except through a block.

I guess I could try patches. Are they safe for use on labia minora? Don't want to get some kind of irritation or vaginal infection.

[sadie]

SVM
Foriegn body syndrome is prob what you are experiencing when n if u feel things in your anus prodding etc. I use to feel horrifying feelings there.

Do not go by my word about estrogen. If dr G gave it to u he must have thought u would benefit. I just report from my world.

No one i know has benefited from pnb w steroids to help pn and some have gotten worse...but if u are doing it i would not start w pnb w steroids, just lidocane ...n will send u a published link on pnb w/ steroids when i find it. I suggested above having 3tesla mri of the pelvic area to the tip of the tail bone to check for an Tarlov cyst or abnormalities. Dr potter in ny specializes in these imagings. I can email u her protocol for you to share w any imaging place that specializes in doing 3tmri imaging . Did dr G bring this up since u are leery of pudendal nerve blocks? Have u had any other injections in pelvic area? I will look for the link now .
As for using pnb as a diagnostic tool w lidocaine there are a lot of papers if you Google it .
Glad you have the means to travel back n forth so glad u have options. ❣

[sadie]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5215631/

Screenshot_20201001-200741_Chrome.jpg (300.65 KiB) Viewed 2900 times

I attached a screen shot of the conclusion

[sadie]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5215631/

Screenshot_20201001-200741_Chrome.jpg

I attached a screen shot of the conclusion

As for salon pas on labia i think its an individual thing..and do not think it will help w burn n itching just arousal...

but the compounded 10% lidocaine helped a ton with itching n burning n saved my life.

Its hard to formulate it , and my pharmacist said it was a proprietary formula he came up with... and when he sold his Pharmacy he sold the formula to the new owner who is now making it for me. Its very expensive in the usa but may be cheaper in the UK. if your compounding pharmacist does not know how to formulate 10% lidocaine into a cream, then I will be glad to give you the number to my pharmacist and the two pharmacist can talk to each other. BESIDES ICE N MEDS IT IS THE BEST TOOL IN THE TRUNK. i am almost sure it will help u as the 2% lidocaine gel nor the 5% lidocaine ointment , helped at all and they were prescriptions covered by Insurance

whereas the compounded lidocaine is also a prescription but not covered by Medicare .

Let me know if u had luck with estrogen. it seems my pgad is much more constant and so it may have affected me more negatively. Have a good evening n i pray u get sleep. Sadie

[some-velvet-morning]

I will make sure it's just lidocaine in the block. Do people ever get worse from just those? I will also ask Goldstein about the risk of blocks (he said he's done thousands) and ask about the 3tesla MRI. I thought MRIs were not very conclusive in diagnosing a pudendal problem though?

I've had a lumbar and sacral MRI. No Tarlov cysts but an annular tear at L5/S1, which corresponds with where I hit my back five years ago. They're still not sure that's not causative as I wasn't symptomatic enough on the day I had the epidural block done. Just wanted to give it a shot before I flew home.

The only other injection I've had was lidocaine (I think) directly into the labia, right where I get the weird electric itch. Didn't touch the itch and I nearly fainted.

I'm certainly not wealthy but I have savings and feel like my life is on the line. I really want to have another partner and a kid someday and it feels impossible like this. I'm aware some people are much worse and I'm so grateful I don't get much arousal anymore but I still don't want to live feeling like half my labia is trapped in a binder clip. Flights are also cheap and very empty right now.

[some-velvet-morning]

What have you tried for PGAD, Sadie? I'm so sorry you've suffered with it. It's absolutely horrific.

I've used something called Instillagel but that's only 2% lidocaine. You can get a 5% lidocaine ointment here on prescription, which I might try when I'm getting the itching and burning symptoms again. Right now I'm just getting this deep vaginal aching, which seems to be my main symptom when menstruating, and some right labia aching too.

[sadie]

SVM
i have reached out to my dear friend who is a radiologist and 2 HOPE site vets to get input on 3tmri and other imaging options to ask dr G about... i will get back to u by saturday. As for what I have done in my journey, it's pretty much all in these last text to you and in my signature below. I will tell you how a pudendal nerve block with lidocaine ended up causing a paraesthesia and my right labia majora that lasted for almost a year and hurt like a vise grip, in my next post to you... but it's late now in USA and I need to grab some ice and detach God bless Sadie

Ps i would jump to compounded 10% lidocaine for itch n burn the 5% ointment is not strong enough. trust me i had hellish itching n burning before i got the pnb w depo medrol that gave me pgad . It will hopefully let u sleep too.

[sadie]

SVM
i have reached out to my dear friend who is a radiologist and 2 HOPE site vets to get input on 3tmri and other imaging options to ask dr G about... i will get back to u by saturday. As for what I have done in my journey, it's pretty much all in these last text to you and in my signature below. I will tell you how a pudendal nerve block with lidocaine ended up causing a paraesthesia and my right labia majora that lasted for almost a year and hurt like a vise grip, in my next post to you... but it's late now in USA and I need to grab some ice and detach God bless Sadie

[AmberK2016]

Hello all!
I figured I'd leave an update. I'm doing much better and I'd dare say that the PGAD I experienced has left the building!

There were a combination of things that helped me get to where I'm at, which is essentially PGAD-free. I visited doctors upon doctors, which really only racked up bills with very little contribution to figuring out what was going on. Eventually I ended up landing myself in my PT's office and she was the BIGGEST help with what I was going through and not only did the sessions make me feel better physically, but also mentally. I never felt judged and for the first time since the PGAD started, I actually had hope I'd make it through. I'm thoroughly convinced that without her, I wouldn't have gotten to where I am now. If there are any native Minnesotans on this thread, I encourage you to seek out Theresa Plansencia. I sought out a urogyn (one of the few in the state) and she told me that Theresa was the "Mother Theresa" of PT's, which I can definitely vouch for. Not only did she address my southern regions and assessed them, but she also took in my back condition as well. I could go on and on about her, but I think you guys get the picture!

The next thing that helped me heal was truly listening to my body and my emotions. At the time I had my first symptoms, I was under alot of stress as I was in college at the time and I also worked to provide for myself. This is not to say PGAD is only caused by mental illusion or that I intend on invalidating any one's experiences here, but for me personally, this was the most important aspect I tackled when it came to healing. I eventually came to realize that for most of my life, I have had health anxiety and I noticed how much of a pattern it was for me. It was a long journey of self-discovery I had to take and I'm sure my fear of being diagnosed with certain conditions spiraled into me feeling those uncomfortable sensations. I can't tell you exactly when the symptoms had stopped being so up-in-my-face and prominent, but I can tell you that I only get those symptoms perhaps, twice a year now if my pelvic floor is tight. As a matter of fact, I dang near forgot the name of this forum because of how infrequent my very short "epsiodes" are!

If you're reading through this forum at 3 am trying to find an answer, trust me, I'VE BEEN THERE. This forum was a lifesaver for me and there's so much great info here, so I hope you don't feel so alone. But more importantly, DON'T GIVE UP. There was a time I was going through all of this and I genuinely considered ending everything, but I'm so glad I didn't, because my life is so much better now than it was nearly 3 years ago. Just keep trying, and I know what you've felt or been feeling because I was there once too. I'm a big believer that just like nature, nothing is meant to remain the same forever: just get through your winter so you can enjoy the spring that will be coming your way!

[stephanies]

Thank you so much for sharing! Glad you are doing well.