Health Organization for Pudendal Education

I have been on Lyrica for 4 months and the intensity of the feelings is lessoned,still there but somewhat tolerable. I started o 100 mgs3. X..'sa day, but this was too much too fast,I was very lathargic, falling asleep and gained weight.I am now taking 100 mgs once a day and the fuzzy head is gone, I also take hydrocodone to take off the edge, if not Ifeel like jumping down someones throat. My poor husband gets the brunt of it. I am doing a PN nerver block in two weeks and hope to find a PT who is trained in some of this PT needed. Pelvic floor therapy was NOT for me, it only made my PGAD more"active"(this is the code word my husband came up with)

Good luck to everyone, stay strong and know that you are not alone. You will have to be your own advocate, be persistant and MAKE your DRs listen and give them everything you have found on this. I finally after 8 months and 5 Doctors found a pain managmebn Dr who listened, researched! Made calls and is getting me help. Pray and breath

It seems there are a lot of us suffering. I am very concerned however that none of my arousal comes from the clitoris or outer vaginal area. The pressure on the bladder area is causing some sort of deeper arousal sensation, it is vile and if I give in to that feeling then it intensifies for days. Dear Sweetpea, how are you feeling now? I am a bit worried about how much you are suffering too. Hope you are OK? thanks Melanie

Well said, Dkess. Pelvic floor PT made me worse too although by the time I tried it I had developed severe pain as well as PGAD.

Melanie, mine was primarily deep also, although it was referred to other areas as well. Have you tried inserting ice? Kept me from going insane sometimes.

Violet

I've been reading these posts about PGAD and I'm curious if my symptoms would qualify as that. I've been diagnosed with vulvadynia, which I've had for about 7 years. The most annoying symptom I have, besides the vaginal burning, is hypersensitivity of the clitoris. It's a cross between pain and arousal. It drives me nuts and can be very distracting. Orgasm reduces the extreme sensitivity temporarily. I have never had a spontaneous orgasm. Movement, like riding in a car, does not make the problem worse. Is this PGAD or just hypersensitivity? Thanks.

Greeneyes

It does sound as if there is a degree of PGAD from your symptoms. A spontaneous orgasm isn't necessary to have PGAD.
I would say that repeatedly 'unannounced,' completely 'unsolicited' arousal experienced, is probably PGAD especially when a pudendal nerve issue is suspected. I think sweetpea's phrase "when the last thing on my mind is sex" and then arousal is experienced, sums it up really.
Nerve issues manifest in so many weird ways. . . . unfortunately
I have some PGAD but it definitely isn't one of my main symptoms now, still there but not as "active", as it was initially.
Hope everyone is coping, sending well wishes to all.
Take care,
Helen

Hi Violet- I am interested in knowing how you proceeded with the assessment of your PGAD symptoms since there appear to be many possible etiologies to rule-out. My PGAD symptoms started about two months ago. I have been working with my GYN since this time. I actually brought in your article with suggested treatments as a guide! He prescribed valium/amitriptline suppositories at bedtime, Xanax prn, and lidocaine/ice. Initially I got some relief- I actually had "better days" where the PGAD sxs were more "background noise." Unfortunately,this relief has not been maintained, and I am really struggling. I struggle through the work day with Lidocaine/ice and take a Xanax when I get home in the evening.

I have had to encourage my GYN to look at reversible causes- not just treatments. He doesn't really have any experience in PGAD. He has scheduled an MRI/MRV and ultrasound to look at pelvic varices/congestion because of the significant genital swelling I experience on a daily basis... as a "first step."

Historically, I experienced hip pain over the summer (from Crossfit) that I precipitated the PGAD sxs. I have not exercised in the last two months (but working with a PT doing hip exercises) and my hip pain is pretty much gone (only achy now and again) but the PGAD rages on! I am afraid to exercise for fear of making the PGAD worse (although it is hard to imagine it being much worse!) I really miss Crossfit.

I went to see an Ortho physiatrist last week to look at the hip/PGAD connection who I felt was dismissive. He said that my hip exam now seems normal, but agreed (with some pushing) to order an MRI of the lower spine (to look for cysts, ect).

A few questions:
Have you heard of any PGAD suffers with pelvic varices?
I feel like a pudental nerve MRI (H Potter) should be next on the r/o list?

Any other suggestions?

Thanks for your help.

Hi Janet- Can you give me more specifics about the cream you mention? Thx

Yes, here are the details on the cream:
Vulvodynia Ointment -special compound two tubes (60gm and 15g for purse) prescribed by a gynecologist that worked with the compound specialist, Use 4 times a day (vaginally), Side effects some extra sleepiness at first:
Amytriptyline 2.5% , Baclofen 2.5%, Neurontin 2.5%, Lidocaine 5%, Estradiol 0.05%
Good Luck and I hope you find something to keep the symptoms down until hopefully you get a real fix.
I should add that I did not have PGAD but used this to help post TG PNE surgery to lower the pain until my acupuncturist found a treatment that got rid of the last constant pain and I tapered off the cream. I still have PN pain but it has lowered and probably my worst issue is SIJD and pain moving around the core area, again not constant but also not gone. I am still very lucky that I got some decent relief from the surgery.
Janet

Thanks Janet! Appreciate it!

Asreicher, I am so sorry you are going through this. I know it is incredibly miserable and I hope you can figure out the cause and appropriate treatment.

Asreicher wrote:Hi Violet- I am interested in knowing how you proceeded with the assessment of your PGAD symptoms since there appear to be many possible etiologies to rule-out.

It was my physical therapist who finally figured out it was the pudendal nerve. I also had pelvic instability and pelvic misalignment accompanying PN and PGAD. When I had surgery Dr. Bautrant said that my ligaments were hardened and sclerosed -- probably due to aging and just a musculoskeletal/genetic predisposition to this happening. Since you also had hip pain it seems you have already determined there is more going on than just PGAD. Back when I was assessed there weren't as many diagnoses to consider because there was so little known at the time. Now you have more options to consider because we've had so many people post about related problems such as inguinal hernia and acetabular labral tears (cause of hip pain). There are some threads by Donstore and Lernica on these topics that are very informative and explain what tests you would need to have done to rule these problems out. You can do a search (upper left) to read their most recent posts.

Have you been assessed by a pelvic floor PT for pelvic floor tension? What about pelvic misalignment? Any tenderness or flare-up in PGAD (immediately or several hours later) when someone presses along the course of the PN via the ischial spine or alcock's canal in the vagina?

I have read of women who had vascular anomalies causing PGAD but not varices. My gyn told me that many women have pelvic varices with no symptoms of PGAD. I'm not expert enough to say whether varices could cause PGAD -- I just haven't heard of it happening.

If you are going for an MRI you might as well go for the Potter MRI but make sure you have the lumbosacral area and lumbar area done as well as the pelvic area and have them check for things like tarlov cysts, nerve root impingements, labral tears in your hips if possible, and of course nerve entrapment. The MRI is not 100% diagnostic for nerve entrapment. Nothing is really. History, symptoms, and ruling out other possible causes are still some of the most important ways of diagnosis PNE.

Keep fighting -- you will eventually figure this out. It's just so frustrating when things move so slowly.

Violet