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 helenlegs 11 » Sun Sep 18, 2011 4:41 pm

Mandymand,that is a long time to wait for medication that then may take some time to be up to a useful dose! and then may not work at all so something else could be tried.. . .all adding to your pain time scale, which is not ideal. Could you write to Dr.B asking for a letter to be copied in to your doctor with regard to medication? Otherwise I think it would be necessary for your GP to contact him or at least be more hands on in your drug regime.
There are NHS guide lines for treating neuropathic pain. http://www.nice.org.uk/nicemedia/live/1 ... /47949.pdf
The way I understand it is that the combination of an antidepressant like duluxotine (cymbalta) and an ant-epileptic (gabapentin or pregabalin) can help.
I take cymbalta and have just started pregabalin too |I suppliment these with tramadol when necessary. I am not pain free by any means but it helps. Now that I take pregabalin I have noticed that I am not DESPERATE to get into the bath at about 6pm onwards every day, so it must be having a positive effect. Not that I have stopped bathing by the way :)
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Sun Sep 18, 2011 5:13 pm

Just a word of advice All my drs. have said NEVER squeeze to get it out=it makes it MUCH worse! 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 5:15 pm

thanks for ur quick reply,i'm all new to this, as i only just found out about p.n in may this year even though the pain started in 2008 and got told for the last 3 years i was imagining it all :( ,so i guess i just got used to the pain and suffering going on forever,that fact i have at last got an appointment to help treat this instead of just suffering with no help has made made a huge difference to me and given me a bit of hope at long last,so i guess i don't see the next few months as waiting for an appointment as a long time in comparison to what i have waited, i got used to just talking pain killers to take the edge off of things,although i couldn't really understand why she couldn't ring him and ask him.
but he did write in his referral note(i was sent a copy of it) that i could try duloxetine so i'm sure the g.p would be fine with giving me a try with that at least, she said she's not sure how to treat the pgad side of things as she has never come across anyone with it b4!! she was nice about it i think she just didn't want to go against his wishes with the lidoncaine,but i guess i could write to him as ask if it's ok to try it.it couldn't hurt so thanks for that advice ;)
what dose of Duloxetine are you on? i only ask as i see you take tramadol too,are you allowed to mix the both then? i take my a.d's mainly to sleep as they have a sedative in them and when the pain is bad these pills do help me get some sleep,but i wouldn't mind swapping them to duloxetine as long as they help knock me out too.
i do understand that none of us will prob be pain free and just need to come up wiv ways of making it a bit less so we can live. thanks for all the great advice you have given me,i've seen you name come up a few times,you so helpful to people, esp us newbies that don't fully understand it all yet,b4 all this happened i hardly ever went to the dr's for anything, so i have no idea how everything works with g.p's or what to say and ask them, so i'm very grateful for all your help, mandy x
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Re: PGAD - persistent genital arousal disorder

Postby mandymand » Sun Sep 18, 2011 5:20 pm

Krisssy wrote:Just a word of advice All my drs. have said NEVER squeeze to get it out=it makes it MUCH worse! Krisssy

really???? i've been doing it for the last couple of years :oops: i end up going about 20 times a day if i don't do it that way...i will try not to do it now you have told me thanks x
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Re: PGAD - persistent genital arousal disorder

Postby carolynm » Sun Sep 25, 2011 9:11 pm

It is sickening to have this condition. I literally feel sickened. It is demoralizing. I was sitting on the plane back from NYC and I was afraid I was going to have an orgasm because of the turbulence. I was crying and hoping I wouldn't have one.

I"ve tried the Ultram (didn't help) and the lidocaine cream (really doesn't help, either).

I don't know how I"ll survive until I can get surgery.

I feel devastated right now.

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Re: PGAD - persistent genital arousal disorder

Postby calluna » Sun Sep 25, 2011 10:12 pm

Hi Cari - please don't give up.

Yes, it is crazy-making. I hated this symptom worse than the pain.

Things that have been documented as helping with this symptom - tramadol, lidocaine, clonazepam, and some SSRIs - specifically citalopram, and escitalopram. You might find it useful to discuss this with your pain doctor.

I did find that tramadol took the symptoms down for me - I had to keep it running, though, rather than just taking it prn. The slow release stuff turned out to be much the best for me, in this respect - that way I could minimise the dose I had to take. I started off with quite a high dose and took the dose down until the symptoms reappeared - then upped it a bit from that level, and all was fine. But I did have to keep it going, with no gaps.

The problem with the lidocaine cream is that it is designed to be held against the skin with a dressing, so that it can be properly effective. And that of course won't work for us in this situation. So perhaps another medium is worth a try instead? I found the patches to be effective to a degree, although not exactly fast acting, and rather inconvenient to use. The cream worked ok, but I needed quite a lot to make a thick layer, and again it took a while to work and of course it is messy. People have had good results with instillagel, which would certainly be much more comfortable.

Other than all these things - ice. Don't forget this one, it is our best help in many ways, for pain relief as well as for this. I have one of those gel packs, failing this then a pack of frozen peas wrapped in an old teatowel will work just as well. Please try this - it helps, I promise.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Mon Sep 26, 2011 4:58 am

carolynm wrote:I don't know how I"ll survive until I can get surgery


Cari, an SSRI antidepressant might help although it may take a few weeks for it to be effective. Lexapro is what got me through until after surgery. I understand what you are going through and my heart aches for you. I used to cry until I didn't think I could cry anymore but I want to assure you there is life after PNE so stay strong and keep fighting. ;)
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 carolynm » Mon Sep 26, 2011 6:50 pm

Calluna--I have tried all of those rememdies to no avail. Ice does help when I am able to lie down and place it on the affected area. The tramadol & lidocaine don't help me at all.
Thank you for posting your ideas for me.

Violet-Thank you for giving me a glimmer of hope. I can't see much beyond today and am having trouble getting up in the mornings, knowing that I will be facing pain throughout the day. Also, when I'm taking all my pain meds, I am groggy and my husband says I slur my words. Not a good state to be in when taking care of young children. Grrr this disease is most certainly the hardest thing anyone can imagine enduring.

Thank you friends
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Re: PGAD - persistent genital arousal disorder

Postby calluna » Mon Sep 26, 2011 7:54 pm

carolynm - you've tried all of them and none of them helped - oh dear. I wish I had more suggestions other than that list, but we haven't encountered anyone who has found anything else helpful - except there was one person who found gabapentin/Neurontin to be helpful, but nobody else had that experience, and you are taking it already.

I shall just list them out again - lidocaine - tramadol (slow release) - clonazepam - escitalopram/Lexapro - or citalopram which is the older version.

Please do go back to your doctor with this, it isn't the easiest thing to discuss but your doctor will be wanting to help you, and this is such a miserable thing to deal with. Maybe she will have some new ideas.
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Tue Sep 27, 2011 1:49 am


After 4 months of nerve blocks every other week and physical therapy with Amy Stein in NYC, I am finally starting to feel better. It is a very slow process, but please don't give up. My relief started by consulting with a pelvic pain specialist in Pa. The pudental nerve is the cause of all the symptoms. 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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