PGAD - persistent genital arousal disorder

[dkess06]

This is my first post so may be lengthy. Two years starting in 2011 of numerous UTI's. 8-2012 first Urlogist appointment, started on antibiotics daily ! Vaaginal estrogen. October started to having feelings of arousal for no reason, feelings increased. Driving in a car , music, increased sensations. Went to Urogynocologist started PFT, had 4 sessions and stopped, made it worst. Heard of PGAD read up on it felt releif "that's me!",what a joke, it is now July and 5 Drs later,a hospital stay for possible TIA, 300 mgs of Lyrica a day, plus pain medication for the "edge" I am a wreck. My marriage is a mess, my job has suffered,my kids think I am nuts , I justwant help. The only person to really hear me is the pain managementDr who has taken what I have found from my research and followed up with it contacting Dr.Eichenburgs office. I pray we are on the road to help. I guess this is my confessional page. I just want to feel normal again. My hypersensitivity in the vaginal area is ruining my life. I have read about pain and could say I wasn't experiencing pain until this weekend, now that has started ,prior it was just the PGAD symptoms. I have RA and I can say this past 10 months has been more dibilitating, mind bending then a chronic illness. Will i have to live like this forever?

[Laurina]

Hi dkess,
Sorry that you have been through so much. Emotionally this is a very tough disorder to have - when it started, I didn't know who I could talk to, but luckily I had an understanding GP who looked for a specialist who had treated it before. It took her a year to find one, but her treatments did help and I am now symptom-free, but still have some pudendal neuralgia issues (minor)... In all of this, I learned that it was important that I desensitize my nervous system through a series of exercises. It's meant a lot of home exercises, but sticking through the recommended program has given results.
Hang in there, you are not alone.

[Violet M]

DKess,

Recently I posted a newsletter about PGAD on our homepage at pudendalhope.org that you might find helpful. You can access it from the homepage or go to this link:
http://www.pudendalhope.info/sites/defa ... ne2013.pdf

My primary reason for publishing the newsletter was because I used to have PGAD myself and I know how debilitating it can be so I want to help other women know that there is hope that you might be healed with the right treatments.

I did not find PT to be helpful either -- it made me worse. I don't know what type of PT you had though. Were you able to see someone who is trained in treating people with pudendal neuralgia?

Violet

[ChampagneDivine]

Hi everyone. I think I have this condition. It started as a suspected uti but all the time I felt the symptoms were mainly in my clitoras. I have told my doctor and my partner. He is being amazing but it's only been a week, he thinks it will go away and is just an infection. I'm SO SCARED of coping with this for the rest of my life. I live in New Zealand and am desperately looking for a support group or referral to a doctor or specialist here. If anyone can help, I am desperate. Can't believe this is happening to me. I can lay on the couch but that is all, how am I supposed to interact with people, leave the house ... Go to work. I can't believe it is real but the area is so stimulated all the time it must be this condition. Please help.

[Violet M]

Hi Champagne,

It could be temporary depending on what caused it. I don't know of any good healthcare providers in New Zealand but bindy15 or Kiakaha might. You could try sending them private messages and see if they respond. Another idea would be to contact Sherin Jarvis or Peter Dornan in Australia and see if they know any providers in New Zealand. You can access their contact info from the homepage at pudendalhope.org under PT's. In the meantime you can use ice and ask your GP for medication that might help. Did you see the article on the homepage?

There are lots of options for treating Pgad but you want to start with the most conservative first. You're not alone and you have lots of options.

Violet

[Melanie9999]

Hi everyone, still suffering with this PGAD, starts if I wear a seatbelt, wear any clothes that are not loose over the stomach, starts after sex, and it is relieved temporarily by urinating for a minute and then it comes back. It is so horrible. The only problem is that when I tried Citalopram it got rid of this arousal feeling but also numbed my entired genital area to the degree that I couldn't feel sex at all. Amitriptyline seems to be in the middle so I am still taking it but when the symtpoms start up I feel suicidal. It is not pain, it is worse than pain. It is hard to describe to someone. I am still waiting to see Dr Greenslade. I was referred in May and the PCT refused to fund it until yesterday. I hope he can help me. Does anyone have anything they took that helped them without causing complete lack of sexual function? It may sound ridiculous but the thought of either living with pain/horrible arousal feelings or living without sex for the rest of my life are both options that I cannot live with, no matter how hard I try I can't cope with thought as my partner will definitely leave me. I would be grateful for some feedback.

Pregaballin also caused complete sexual numbness and suicidal depression and massive weight gain so that is no good. I have never tried Topiramate/Topomax any feedback on that would be appreciated. I don't suppose it will be any better than Pregabalin. I am finding it hard to live with this but I do have back pain/buttock pain on top so that doesn't help. Sitting down is agony but I will lose my house if lose my job. thanks Melanie

[Violet M]

I don't know, Melanie -- it's kind of trial and error to find out what works for you without too many side effects since we all react slightly differently to medications. I know one gal who says that buprenorphine takes her PGAD away.

Violet

[sweetpea]

I took 4 courses of levaquin and prednisone that blew my body apart. Along with severe pain I have severe PN over my entire body. It is like hornet stings.. Along with this I developed severe pain in the bladder, that will flare like after a knife like jab (nerve) also I often wake up with HORIFFIC orgasmic pressure, it feel like I am on Spanish fly whatever that feels like.. It often starts with severe pressure in the sacrum area and then will travel.. I cannot believe the damage this has done. This ONLY started after the levaquin. I cant get anywhere with the neuros because this comes and goes I don't think a nerve block is a good idea.. I can see why this leads to suicide as it is beyond words. I am 56 in horrific pain and the last thing on my mind is sex. This is nothing like a normal arousal it is about 100 times worse.. I cannot take any drugs. cannot take serration uptakes and cant get beyond 200 mg of gabapentin.. Where do I turn.. I cant do this.

[Asreicher]

I am three weeks into PGAD and after reading about PN, I am convinced its a cause. I was an avid crossfitter- lifting heavy weights for years. Not sure what triggered this now. I have been to see my GYN, and have a referral to see a specialist. This condition is beyond horrible, but I have obtained some significant relief with EMLA cream. Has anyone else tried this? I worry about rebound, but for now its a lifesaver. Thx

[Violet M]

Yes, other people have tried EMLA cream. I think it has lidocaine in it, right? Haven't heard of any problems with it other than some people say it burns.

Where do I turn.. I cant do this.

It sounds like you must have had something going on prior to levaquin and prednisone so I'm not sure what your entire history is. If your entire body is affected maybe you have some sort of central sensitization going on or some type of abnormal autonomic response. What type of docs have you seen so far?

Violet