PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Re: PGAD - persistent genital arousal disorder

Postby calluna » Fri Jul 01, 2011 7:09 pm

Karyn wrote:
calluna wrote:I am getting some Emla cream from Amazon, just to try. I hope it works, it would be a lovely simple solution if it does!

What are you using this for, Calluna? Isn't this a facial moisturizer?


Um, no, not a moisturiser! - not over here, at least! Emla cream is a local anaesthetic cream, it has lidocaine in it. Medics use it when people are needle phobic, and I gather that it is also sometimes used when people are having painful tattoos done as well. I am hoping that used appropriately, it will damp down the sensations of PGAD. Either it works or it doesn't, I can at least try it ....
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Re: PGAD - persistent genital arousal disorder

Postby Karyn » Sat Jul 02, 2011 1:25 pm

calluna wrote:Um, no, not a moisturiser! - not over here, at least! Emla cream is a local anaesthetic cream, it has lidocaine in it. Medics use it when people are needle phobic, and I gather that it is also sometimes used when people are having painful tattoos done as well. I am hoping that used appropriately, it will damp down the sensations of PGAD. Either it works or it doesn't, I can at least try it ....

Thanks for the clarification, Calluna. I looked it up on Amazon and I got facial moisturizer! :lol:

Krisssy wrote:Karyn,
I am contemplating having Dr. conway do surgery on me. Could you tell me how you are feeling now? Thanks. Krisssy

Hi Krissy! I really should post a detailed update. I'll do that very soon. But to answer your question: I'm doing much better! I've achieved many, many improvements and don't regret surgery with Dr. Conway for a New York minute! I wish you the very best with choosing a surgeon and hope you get some much needed relief.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Mon Jul 04, 2011 12:59 am

For anyone with PGAD, please consider carefully what surgery you choose. There is a published case of failed clitoral neurectomies for PGAD.
Last edited by Violet M on Thu Jul 14, 2011 6:34 pm, edited 1 time in total.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby calluna » Mon Jul 04, 2011 9:05 am

Eeek. :shock: Violet, that's just appalling.
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Re: PGAD - persistent genital arousal disorder

Postby shljk » Wed Aug 10, 2011 3:01 am

I've had PGAD on and off for the past year and just had left-sided PNE surgery last week. For those of you whose PGAD was cured by surgery, how long did it take for the arousal to disappear - immediately or over the course of days/weeks/months? I ask because I'm still having arousal symptoms - not horribly bad only because I've been very careful not to put pressure on or to touch the clitorial area.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sat Aug 13, 2011 5:13 am

Sorry to say ...... it took months to disappear. I probably even continued to see improvements over the course of several years but most of it was gone after the first year.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby shljk » Tue Aug 16, 2011 1:27 am

Violet M wrote:Sorry to say ...... it took months to disappear. I probably even continued to see improvements over the course of several years but most of it was gone after the first year.


No, that's good news to me! I was scared that if it wasn't gone already, it never would be. Thanks, Violet M.
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Re: PGAD - persistent genital arousal disorder

Postby mandymand » Sun Sep 18, 2011 3:53 pm

calluna wrote:
Something does occur to me - how long have you been on the antidepressant? And which one is it? Because if you haven't had PGAD for 3 years now, maybe the antidepressant is also dealing with the PGAD for you...?!


hi sorry i took so long getting back to you,i've been busy and i've only been on here now and then for a quick glance,i think you may have read my last post wrong (or i didn't explain myself very well...lol) but i've had p.n symptoms for the last 3 years but the p.g.a.d only started this year in feb (so it's now coming up to 8 months since this nasty symptom started),the antidepressant i take are mirtazine,i've been on them 5 years now (the same 15 mg dose the whole time),when i saw dr b in london in june he upped them to 30mg as he said they r good for pain,but i haven't noticed much difference to be honest but he did mention about swapping to duloxetine if i'm still really badwhen i next see him.
i went to my g.p and asked about lidocaine and the other pills you mentioned ,but she said now i'm under the specialist she doesn't want to give me anything without his say so which is fair enough, so i'm really hoping the appointment comes through soon so i can ask him how he treats this,but i know i've prob got a few months yet :( (i did ask him about the tramadol when he diagnosed me, but he said it was prob the serotonin in the tramadol that suppressed it and that upping my antidepressants will do the same thing....but sadly this isn't the case :( ) ,
anyway i've done what you have done now and had a look on amazon and ebay at numbing creams that contains lidocaine and will give it a try,not sure if you r meant to put the cream there and i'll have to be a bit careful but anything is worth a shot.
does anyone else have weeks where the p.g.a.d is really mild and weeks where it's unbearable? i do find swimming makes it go away,and sitting is the worst thing u can do.
i also find that the p.g.a.d is always at it's worst when the pain and bladder problems are also at their worst too,they all seem to go hand in hand with each other.anyway i'm giving the gabapentin another good go,i'm up to 900 mg at the mo,but not doing anything much yet.
and i really do hope we all get sorted out and put out of our misery very very soon :D
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Sun Sep 18, 2011 4:11 pm

Like you, when the clitoral pain and bladder frequency are bad, the arousal gets bad. For me it is all about the pudental nerve. After three years of constant pain, I am now down to attacks or flairs instead of pain 24/7. I have been going to a pelvic pain specialist named Dr. Robert Echenberg in Bethlehem, Pa. who has been giving me bladder installations and nerve blocks every two weeks. I also have been going to a great pelvic physical therapist in NYC named Amy Stein. She gives me external and internal PT without stimulating me. My MRI with Dr. Potter in NYC showed scar tissue around the pudental nerve especially around the part of the nerve going to the clitoris. Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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Re: PGAD - persistent genital arousal disorder

Postby mandymand » Sun Sep 18, 2011 4:31 pm

wow has any of that treatment worked for you? is this why it's now just flairs instead of the whole time? great news if it is helping you, i have weeks where i can't wee i have to push really hard and lean completely forward to squeeze my bladder to gets the flow started and consistent, total nightmare and the arousal is alway pretty bad at these times, i'm down to have physio as well as he thinks my muscles are irritating and putting pressure on the pudendal nerve and stopping the bladder from opening the way it should, also i'm having piriforimis injections as well as p.n blocks,and having cbt so hopefully that lot will help :)
it's just a matter of waiting for the appointments to come through as it's a very busy hospital xx hope you carry on to have success in your treatment xx
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