PGAD - persistent genital arousal disorder

[Violet M]

Good idea to get a second opinion. I could be way off base, and I hope I am, but I am coming from the experience of having my gyn tell me not to have a pelvic floor repair because it could increase my PN pain if the pelvic floor was pulled too tightly. I'm not sure what the treatment would be but I'm wondering if pelvic floor PT would help to loosen up the pelvic floor if it was pulled too tightly. Or, maybe a TENS unit could help relax the muscles some. A TENS unit helped me get the muscles relaxed after PNE surgery. I also know someone who had pain post-hysterectomy who is helped significantly by neuromodulation. So, I think there is reason for hope and there are things you can do for pain relief. Heat and ice, including alternating hot and cold sitz baths, can be very helpful too.

Violet

[April]

Hi Holly,

I'm just now seeing your earlier question about whether or not I have ongoing pain. I do, but it is much less frequent and less extreme than before the surgery. I have flares periodically and can usually manage them with a heating pad on high. But, I did just start a medication for the first time in four years (Cymbalta) to see if it will help with the flares. I'll keep you posted.

Hi Sweet,
I always had burning pain throughout my pelvic floor, but the left side had sharp and stabbing pains periodically that felt like they were coming from a couple of inches above my pelvic floor. The ischial spine area on the left was also extremely tender, and I didn't have that on the right. So, it clearly felt like the pain was originating from the left but creating pain on both sides. Now (several years post surgery), I still have tenderness on the ischial spine area on the left, but I don't have the stabbing and sharp internal pains like before. But I do notice pain inside my vagina now in a way I didn't before (e.g., after a bowel movement). (But, I think my pain was so extreme and broad before that it was hard to pinpoint where it was coming from.) Is your pain one-sided?

April

[Sickofmelife]

Hi I’m new to this site and very new to this condition a few weeks ago I abruptly stopped taking duloxetine due to fears about the effect it was having on my bp since then have a couple of episodes that I felt I was about to orgasm I put it down to extreme anxiety however over the last few days I’ve felt this constant feeling of arousal around my vagina and upper legs like tingling and pressure I started looking into it and it’s brought me here I’m currently being treated for a uti which has bee confirmed by the lab I’ve had many UTI’s in the past but these feelings are new I’m really worried and anxious will this go away or am I stuck with it for ever have read a lot of alarming stories I’m scared to death any advice would be gratefully appreciated

[Violet M]

Hi, I answered your post here: viewtopic.php?t=11610

Violet

[nypain]

It’s been a few months and I wanted to check in. In March, I randomly experienced swelling in my right calf (same side my pudendal neuralgia/PGAD) occurs on, and had venous and arterial dopplers as well as an echocardiogram, which did not show any blood clots or causes of my leg swelling. I saw a vascular surgeon who sent me for an MRV based on my presentation (including pelvic issues), which revealed probable May-Thurner syndrome. I went for a repeat MR Neurogram recently after a 3rd round of pelvic floor PT (I thought it might help to go somewhere else - it didn’t), which showed “signal hyperintensity of the right pudendal nerve as it courses along the medial border of the obturator internus muscle, asymmetric to the contralateral side. The caliber is within normal limits. There is no intrinsic or extrinsic mass along the course of the right pudendal nerve.”

I am scheduled for a venogram in a few weeks and I’m very nervous about it, and afraid it won’t make a difference, and I’m afraid of being on blood thinners for months (and aspirin for the rest of my life), but once again I feel I HAVE to know if it will help. I had actually asked my pain management doctor if she thought a vascular doctor might help, TMI because it feels like the blood never completely drains from my clitoris, so either way I suppose I’ll find out. And continue looking for remote work in the interim - my commute is twice as long as it used to be because stairs are a huge trigger.

[Violet M]

That's really disappointing news. It sounds like it is treatable but still, it just complicates your PN situation too.

Good luck with the venogram. Hopefully you will get some valuable answers that will help you know what to do next.

Violet

[SadLemon999]

Hi I'm new, just found this forum.
Looking for advice and solidarity I'm sorry that everyone is going through this!

I'm 34, I've had this before and it went on months then, this was 2019 I'm not sure what made it stop in the end but it did. June this year I got a UTI, had anti biotics but kept forgetting to take them/ taking them later and then it felt like the uti wasn't gone for a while. After a few weeks I started noticing this pgad intermittently, increasing to the point where now I'm in tears, wondering how I can live with this. I'm in the UK, there's no way I can go to a gp. I've just ordered a TENS machine as I read an article saying it helped two women, could this work?
I've also come off venlafaxine this year, which I've read may also be a trigger.

[Violet M]

Hello SadLemon,

We are in solidarity with you as you go through this. I completely understand the tears because it is a horrendous feeling. You said you can't see your gp but is there any way you could see a PN (pudendal neuralgia) specialist?

I don't know if the TENS machine will work for you -- it will depend on the underlying cause, but if you know of others who were helped by it, it's worth a try. When I tried it before my PNE decompression surgery, it flared up the nerve and made the PGAD worse, but if you don't have PN irritation and the symptoms are due to going off the medication, maybe the machine will help relax the muscles. A TENS unit helped me a lot after surgery.

Was the UTI diagnosed based just on symptoms or did they actually do a urine sample and test for infection? If so, maybe it would be good to be re-tested to make sure you don't still have the UTI.

Violet

[SadLemon999]

Hi Violet

Thank you for replying.
I've tried the TENS machine, it seems to have either made no difference or made it worse to be honest, you're probably right
I'm not sure whether to try again tomorrow or not. It was a couple of medical journals I found saying it had worked for women.
The uti was confirmed by a gp, also I used a dipstick to test before I went in. I tested my urine with another dipstick a few days ago and it showed nothing but I suppose I could ask them to send the sample to a lab to be sure. How do I see a pudendal specialist?
I feel like I'll have to go back on anti depressants if that's the only other option.
Are you still suffering with it now?

[Violet M]

Hi SadLemon,

Sorry to hear the TENS isn't helping.

Pudendal nerve decompression surgery 20 years ago pretty much cured PGAD for me, but it hasn't been an easy journey. I had never taken an antidepressant when PGAD hit, so I knew it wasn't from that. But I did go on lexapro, an antidepressent, during the worst of PGAD, and it helped the symptoms somewhat. It took months for the symptoms to subside after surgery, but about a year after surgery I started weaning off lexapro very slowly -- by 1/8 tablet a week, which took about a year. If PGAD ever came back, I would go back on an antidepressant in a heartbeat if it helped. I had a lot of urinary symptoms as well, but it wasn't a UTI - it just felt like a UTI with a lot of burning. The lexapro helped those symptoms as well.

Right now in the UK, I don't know of very many PN specialists, unfortunately. You could try seeing Dr. Bharati Vyawahare
about getting a pudendal nerve block for diagnostic purposes, just to find out if what you are dealing with is likely due to the pudendal nerve. You can find her contact info at the following link:
https://www.pudendalhope.info/european-physicians/#UK
There are other UK docs listed there but I think some of the listings are outdated. You could also try seeing a physical therapist who specializes in pudendal neuralgia and get their opinion. They might also be able to direct you to a physician who could help you. https://www.pudendalhope.info/european- ... nd-ireland
There are some European surgeons who do telehealth consultations so you might want to consider that if you have a nerve block that points to PN. You can go to the list of doctors on our website and find which of them have emails listed and email them to see if they do a telehealth consultation. I know Dr. Bautrant does, but if you could get a nerve block done in the UK before a telehealth consultation, it would give the doctor more info to go on.

If you are having trouble sleeping, maybe you can get a doctor to prescribe something like clonazepam to help you sleep.

Some women find pregabalin to be helpful with PGAD. That is another drug you would have to wean off of slowly though.

In the meantime, several things that might help you survive are either hot or cold sitz baths, (or alternating hot/cold), a heating pad, or using an ice gel pad between two pairs of underwear. You can also try ice balloons inserted vaginally which is pretty intense but it helps shut down the nerve for a bit. The 7 inch round ones filled with water work well -- they aren't that big when they are filled with water instead of air. You can slide them in and out a few times until you adjust to the temperature.

You can also try topical creams like extra strength vagisil or lidocaine patches that you put on your perineum. I know one woman who uses icy hot patches.

Hopefully some of these suggestions will help you. Saying prayers for you and sending you hugs,

Violet