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 mandymand » Wed Jun 29, 2011 5:27 pm

i have had this pgad thing for the last 5 months and it was this last symptoms that lead me to this site(at long last :D ), i've had all the other pn pain symptoms for almost 3 years so i'm greatful i haven't had the arousal thing the last 3 years too, as it drives me more nuts than what the pain does,it's so bad some weeks that i can hardly think straight.
i've tried gabapentin but only for a couple of days as they make my head so fuzzy and dizzy i felt like i was on another planet,did anyone else find this?
and if so, will the side effect wear off after a while?
i've also read that (sr) tramadol can get rid of this feeling on quite a few threads now, but i am on amitriptyline for the pain and another antidepressant (as i got really low a couple of years ago from all this constant pain)and don't think i can mix them with tramadol, but am going to ask if i can or not.
it's good to hear from people who have tried things that have worked for them and this is a great thread to have to share that info,this symptom needs to be spoke about more as the more we talk about it the more we can find answers.
i guess different things work for different people, but i'll be sure to tell everyone on here if anything worked for me, i may give gabapentin another go once college is over in a few weeks time,and try to put up wiv the brian fog sideeffect for a bit longer to see if it does help wiv the pgad.
good luck everyone x
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Re: PGAD - persistent genital arousal disorder

Postby calluna » Wed Jun 29, 2011 8:05 pm

Hi Mandy - we have had only one person who reports help from gabapentin.

With regard to the brain fog, in my case I stuck with it for a good long while and it was just the same as you describe, and it wasn't giving me any significant pain relief either. So I decided I would rather have my brain back thankyou. Having said that, there are people who take it quite happily, and it seems impossible to predict who is going to be problem-free and who isn't. So as to whether it will wear off or not - I think you will have to wait and see.

The list of things that help PGAD, things that are well supported by research and are not just anecdotal - as far as I can see, comprises tramadol (not necessarily SR - but this is out for you anyway as you are on amitriptyline - and I think it is me that you've been reading about with tramadol, I keep going on about it helping); lidocaine; clonazepam; and some SSRI's (antidepressants) - which are also out for you, because of the amitriptyline. If you read through this thread, there are lots of other things mentioned too.

So that leaves lidocaine and clonazepam if we are just looking at the mainstream remedies. Used as and when needed - although we did find one report of a daily dose of clonazepam. :?

I am coming off the tramadol SR by the way. I am going to try lidocaine cream, used when I need it (prn in other words) and I will have ordinary tramadol 50mg prn, available if I need it. I would much rather not be taking a systemic med if something topical will do the job. And I know that lidocaine plasters work, but they are very inconvenient to put where they are needed. :roll:

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!

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...?!
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Re: PGAD - persistent genital arousal disorder

Postby Charlie » Wed Jun 29, 2011 10:46 pm

This disorder was mentioned in a presentation by Beco at the International Urogynecology Association 2010 conferance held in Toronto.

If you go to 12 minute 12 seconds into the presentation he talks about it. Of 4 patients that were operated on for this disorder he claims to have cured all 4.

http://webcasts.prous.com/webcast_viewe ... fL/uJQ27I=
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Thu Jun 30, 2011 3:48 am



PGAD was my very first symptom when this whole nightmare began three years ago. Then I would alternate between PGAD, cliteral pain and frequency and urgency of urination. In the past three years I have been checked out by loads of urologists and gynocologists and urogynecologists all finding no explanation for my symptoms. At this point the PGAD is not as bad and the cliteral pain has gotten worse and at times goes to the vagina and lower buttocks. I have felt knives in my cliteras, and i have felt a throbbing so bad like the worst toothache. It is just recently that I came across a thread on PN, went to a pelvic pain specialist and got diagnosed with pudental neuralgia. Going for Potter MRI in Aug. For three years, I have thought this was a sexual problem. Not one Dr. mentioned PN. If it weren't for sites like this, I would still think this was a sexual disorder. Why don't the regular gyns and urlogists know about this? For goodness sakes, I have suffered for 3 yrs. and had to diagnose myself! 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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Location: New York

Re: PGAD - persistent genital arousal disorder

Postby calluna » Thu Jun 30, 2011 9:26 am

Hi Krisssy, I am so sorry to hear that you have had so much pain and difficulty. I completely agree with you, this whole issue is not much known, even among consultants.

What are you taking for the pain, at the moment? And have you been prescribed anything to help with the PGAD?

I hope that today is a good day for you.
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Thu Jun 30, 2011 9:19 pm


Hi Calluna,
I have been taking Gabopenten, Atarax, Cymbalta, Abilify, Clonozepam, and Percoset for the pain and PGAD. Nothing really helps. I am suffering every day and miserable. I think I had damage done during three abdominal surgeries for a rectal proapse from 2004-2007. I just called to make an appt. with Dr. Hibner, and they gave me a date for JAN 18th????????????????, and that's just for an initial consultation. Who is going to do your surgery? What are CBT and NLP techniques? What is CES? Thank you for any help you can give me.
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
Krisssy
 
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Location: New York

Re: PGAD - persistent genital arousal disorder

Postby calluna » Thu Jun 30, 2011 10:56 pm

Hi Krisssy - I am so sorry to hear that you are suffering so much, and are so miserable.

And wow, what a list of meds! You've been taking all those? I've had to look them up, apart from gabapentin and clonozepam. I think some of the names are different over here in the UK.

If I've got it right - Atarax is an antihistamine; Cymbalta is duloxetine, an SNRI antidepressant used for neuropathic pain; Abilify is an atypical antipsychotic, also used as an add-on treatment for depression; Percocet is a combination of oxycodone and paracetamol. Gabapentin is an anticonvulsant also used for neuropathic pain, and clonazepam is a benzodiazepine. Please correct me if I've got it wrong.

I hope you won't think I am out of order - but could I suggest that you go through these with your doctor? and maybe think about coming off the ones that you know aren't helping? That's a heavy load of meds for your system to be dealing with. It is easy for doctors to just add on something else, without perhaps always thinking about everything that you are already on.

January - that really is a very long time to be waiting for an appointment, I am so sorry it is such a long wait. Maybe one way to think about it - as there isn't anything that can be done to change it - is to think of it as a chance to get all the other options worked out as best you can. Like the meds, for instance. And I think it is an excellent idea to get the scan from Hollis Potter.

I am in the UK, and I am waiting to see a Mr Dixon at Frenchay Hospital near Bristol. He is a pelvic floor specialist, and likes doing laparoscopic work. He also likes sorting out problems with mesh work done by other surgeons, so I really hope he can help me. However, if he can't, I will manage! :)

CBT is Cognitive Behavioural Therapy - I was referred by my GP to see a psychologist for help with pain management. She helped me a lot, in fact it was seeing her that made everything else click. She also recommended a book to me, and it has become something that I refer to regularly - Coping Successfully with Pain, by Neville Shone. I can recommend it unreservedly, maybe it will help you too.

NLP is Neuro Linguistic Programming, the technique that I have used the most is re-framing, for me it has been very helpful for dealing with pain spikes. CES is cranial electrical stimulation, again a technique for pain relief, I have used this regularly too. As you can tell, I have been looking into absolutely everything that might possibly help! At the moment, though, I am lucky as things are pretty much under control with Lyrica (pregabalin) and tramadol slow release. I am getting breakthrough pain, but I can cope with that.

If I could recommend just one thing to you, I'd suggest reading that book. I know I keep mentioning it, but I promise I'm not on commission - maybe I should be! :)

And I do hope that tomorrow is a better day for you. :)
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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Thu Jun 30, 2011 11:23 pm


Thank you for your interest and concern. You have got the meds right. The Abilify is used, in small doses, to augment the Cymbalta, and make it work better. I am going to speak to my pelvic pain dr. about perhaps eliminating some of the meds that don't seem to be working. I haven't been on them very long. I will also speak to my therapist about some of those pain control methods you describe, and I will order the book. Thanks again. 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
Krisssy
 
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Location: New York

Re: PGAD - persistent genital arousal disorder

Postby Karyn » Fri Jul 01, 2011 1:51 pm

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?
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 Krisssy » Fri Jul 01, 2011 4:23 pm


Karyn,
I am contemplating having Dr. conway do surgery on me. Could you tell me how you are feeling now? Thanks. 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
Krisssy
 
Posts: 50
Joined: Wed Jun 22, 2011 1:24 am
Location: New York

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