PGAD - persistent genital arousal disorder

[nypain]

It has been awhile. I was planning to see De. Tzvi Small in September, but ended up cancelling because I couldn’t have my GI workup completed, because one of the stents I had for May-Thurner syndrome was blocked. I had treatment for that plus a new stent a few months ago, and just now would be able to hold my new blood thinner for a procedure if needed.

I had a colonoscopy done and have Grade I hemorrhoids. I am sure my constant sitting on a donut is not helping that!

I was found to have a limb length discrepancy (left leg about half an inch shorter than my right), and while wearing lifts helped a bit at first, I am still quite flared.

I’m not sure what my next steps are right now. An emotional support animal died last year, and my spouse is not ready to get another one, which I can empathize with, but having a pet kept a certain amount of dark thoughts away. I never thought I’d still be suffering at 5.5 years in like this. I can’t believe it’s been that long and I’ve only found things that moderately at best help (donut, not wearing pants/underwear, dilating twice a day, pregabalin and Valium suppositories), and almost every thing I have found that I thought might finally be it was not.

[29Mari]

NYPain,
Have you tried the OTC supplement for vein health, Diosmin & Hesperidin? I began taking it earlier this year after learning I have vaginal and vulvar varicosities. It helps a lot for my PGAD. I'd say the supplement has reduced the frequency and severity of my flares by about 50%! My daily baseline symptoms are lower now, too.

I decided not to pursue treatment of the varicosities because sadly I can't find any patient stories, here or anywhere, to convince me that that embolization or sclerotherapy of the pudendal veins relieves PGAD symptoms. I consulted with several interventional radiologists and none were optimistic that treating the veins would help, and could possibly make my symptoms worse. I'm glad they were up front with me about that. I'm sorry to hear that the stent for MTS did not help you.

Also, earlier this year, I tried tirzepatide aka Zepbound (Violet linked the study a few posts back) but I lost too much weight even at a low dose so I stopped taking it after just a month or so. Maybe a higher dose would've helped more for my PGAD symptoms?...hard to say, because I was already getting help from the Diosmin & Hesperidin supplement.

I'm sorry about your beloved pet. Two of my three are getting up there. It's hard to watch.

[nypain]

Thanks for the recommendation, I will look into it more, although it may conflict with my existing anti-coagulants.

[29Mari]

Ahhh that's right. I've read the supplement may have mild blood thinning properties (I think especially the ones that contain horse chestnut? not all of them do), so definitely discuss with your doctor or pharmacist. I've had success both with versions both with and without horse chestnut.

[April]

Hi Nypain,

I'm so sorry to hear about your updates. It sounds like it has been a difficult 5.5 years. You are going to see Dr. Small about the possibility of having surgery? So that is now just postponed? Are you still thinking about the stimulator too?

April

[Violet M]

Hi NYPain,

I was reading back through your posts and saw that you had a nerve block in 2021 that gave you 7 hours of relief.

I had an X ray guided nerve block last week. The numbing agent worked for about 7 hours and I was able to sit and wear jeans comfortably. I believe the steroid kicked in about 3 days later, notable decrease in PGAD but still with the other symptoms and unable to wear normal underwear still.

8 days later and the spasms are notably worse and the PGAD is returning. Is there ANY chance that I’ll experience improvement from this block or no?

Was that a pudendal nerve block? If so, were you ever able to see one of the PN surgeons for evaluation? It's unfortunate that you had to cancel your appointment with Dr. Small. I hope you will be able to get another appointment with one of the PN specialists before too long.

Violet