Health Organization for Pudendal Education

Hi. My name's Nicole. I'm really freaking out. I finally was led to this site after spending four grueling months with a psychiatrist trying every medication known to man and getting a brain mri, visiting the gyno..that doctor , this doctor... you name it.... all to no avail. Right now my symptoms are the tingling arousal feelings down there that are so intrusive.. and its SCREAMING out that it needs to be relieved but if i do try and relieve its a viscious cycle because it comes right back after I orgasm... and the odd thing is climaxing used to be so easy before... but its harder now to get there... which is weird you would think it would be easier being that it is so stimulated down there! . Anyways.. i'm in AGONY . I can barely concentrate on anything... I notice it gets worse as the day ends and I really am praying for answers and suggestions to help find relief ... I can't take this stimulation thing... it's too much. Can anyone recommend certain medications that have taken away this feeling? ANYTHING? I am open to ANYTHING at ALL. I've been praying for answers and was led to this site. I read somewhere on the thread that some women had surgeries done down there and it took it away? does that mean that they won't be able to climax ever again? I know it can be annoying/taxing to write back but honest to God you would be helping me out so so much with any answers at all to helping get in the right direction in knowing where to go.. what to do with this debilitating thing...
Thank you so much--
N x

Hi Nicole, welcome,
One of the longest threads on HOPE is about persistent genital arousal disorder so you are definitely NOT alone. There are many people here who will totally understand your problems.
http://tinyurl.com/d2kbjzg

I remember Calluna saying that slow release tramadol did help her with this issue. Of course everyone is different so it's an individual experiment with medication. Tramadol can be very constipating so movicol or senna type tablets may be a necessary addition if tried.
If your problem is neroligical a combination of anti depressant and anti seizure drugs is often effective; again experimentation with different brands and close monitoring is necessary to really monitor any beneficial effects (and side effects)
Most doctors would prescribe both together but I would always try one first (my choice would be an anti depressant) so that you can properly establish weather it is working or not. Then phase in the other medication and to the same.
Just because something works doesn't always mean that if you take more it will work better btw. It is often the case that lower doses especially with antidepressants are as effective as higher ones. There is more info on this on the home page.
In the mean time try ICE. We all love ice here.
Try not sitting too (very important)
Trying these meds and some lifestyle changes will help hopefully and of course it will also point to the fact that the problem IS a nerve issue and not psychological.
On the surgery front, don't even think about it at the moment. There are many therapies that may help before that stage. However any surgery would decompress the pudendal nerve and not sever it so function would remain in tact.
So very glad you are here.
Take care
Helen

Helen,
Thank you.
Omg. Just getting this response back... you have no idea how much this just calmed my nerves down a bit tonight .
It's nice to not feel alone.
x

Hi Nicole,

Take your time & read thru the PGAD thread. It's all a question of trial & error what will work for you. I tried Lyrica first, but hated the weight gain/confusion. I went into a deep depression and was put on Cymbalta this past July. It's helped a great deal. I was experiencing pain cycles and they've all but disappeared. The arousal is still there, but nothing I can't handle for now. Cymbalta is known for curbing 'sexual desire' (as tho anyone wants to be aroused for months/years at a time!), so it may dampen the arousal to a level more manageable..

Wishing you good luck & good results with whatever you're able to try. And if you do get pain cycles, the slushy water bottles/condoms do help a lot! (An inch of alcohol & fill with water & freeze).. You're definitely not alone here!

Thank you I'll run Cymbalta by the shrink ... I just had him write up Tramadol for me. Right now we're doing Topomax and seroquel at night. If it wasn't for the seroquel at night i wouldn't be sleeping that's for sure !

I read on another thread that Doxepin worked for the arousal thing for someone ... I get it quite bad.. to the point I cant drive sometimes ... its such a bad throbbing stimulating thing that if the tramadol or if we don't do cymbalta we might go that route maybe? All these drugs! I wish it were more simple! If only some needles could do the trick! I'm scheduled for my first acupuncture session on monday

By the way.... why do you think this happens ? This came out of nowhere... I'm only 32. I was fine ... and then in may it happened and It lasted for about 2 horrible weeks and then went away through being prescribed seroquel. I was fine for four months ... totally back to normal and then bam.. hit me again and its been six months and nothing has worked... I'm so afraid this is something I'll have to live with for the rest of my life... the worst part... I used to be able to climax in a couple minutes... now its a double edged sword because although I'm so stimulated... its as if there's a hidden clitoris and it takes four times the effort to get there and when I finally do... it comes right back ( the urge ).. I'm afraid my sex life will be completely destroyed with my partner. Does anyone else identify with this ? ( the trouble with achieving climax despite being so aroused ? ... Sorry ladies for being so graphic... hope no one is offended. Just hoping my honesty will get me closer to some answers and provide some sense of comfort throughout this period.

Because the problem has disappeared before, I would have every hope that it will do the same again Nicole.
Why the damned thing does happen at all can be difficult to determine.
With some people there is a particular incident, mine a fall on bum; I am talking about PN in general, rather than PGAD alone, although I'm not sure that will really make any difference when the problem is the same nerve being effected.
Some clinicians say it is a build up and something then acts as a 'tipping point' that brings the symptoms on. Often people will never find out the actual cause.
The main thing is that you can find something to help the problem now. Good luck with the medication, let us know how you get on.
Helen

There are differing theories on what causes PGAD -- there may be several different causes. In the literature on pudendal neuralgia, some of the docs list PGAD as one of the possible symptoms of pudendal nerve entrapment. I am 99.9% certain that was the cause in my case since PNE surgery has essentially cured me of PGAD.

Sometimes pudendal nerve entrapment occurs with no known precipitating factor. I'm not sure what could have caused PGAD for you. Were you sitting a lot or exercising? I know one woman who had throbbing as you describe and her MRN imaging showed the pudendal blood vessels were compressed between the sacrospinous and sacrotuberous ligaments causing a back-up of blood in the vessels. Her pudendal nerve was also entrapped in the ligaments. PNE decompression surgery relieved the PGAD/throbbing.

Violet

Hi Nicole,

Yes, I totally identify with this.. My username is DoubleEdgedSword for just this reason.. Arousal that drives me to distraction, invading every part of my life, but a real difficulty in achieving orgasm. When I do, the arousal comes right back. I've had it 3 times total. First time was 3 months, then fine for 5 months and got it again for 2 1/2 months.. Then fine again til June of 2011 when I had dental surgery, and I've had it ever since..

I'm totally convinced mine's closely tied with stress. Look into your life and see if anything set it off those first couple of times.. Now look at what was happening just before this last time. If you can make any kind of connection to stressful events happening in your life, maybe like me you hold your tension in your PC muscles..

I have a lot of physical incidents that have happened over the years that can contribute to PGAD or PN, and I don't handle stress too well either, but nothing definitive can be found on my MRI.. I'm hoping mine's not a life sentence either. As far as ruining your sex life with a partner, as long as they know it's NOTHING to do with what they're doing (or not doing), then hopefully they can accept that and not put themselves to blame for not being able to 'satisfy' you. I'm blessed with a hubby that has come to understand that. He knows that the nerve is misfiring and can't shut off for now.

I hope you can find support with your partner, your doctors and get some meds that'll work for you. If something doesn't work, keep looking for something that does (and that won't give you horrible side effects)..