Passenger,
I don't know what the typical PGAD patient experience is so I can't say for sure if that website is correct. It certainly doesn't match my experience. I can only tell you from my own experience and the numerous women I have talked to that everyone is different, so I don't think you need to resign yourself to living with this indefinitely. Seeking out the right providers who tell you things that make sense to your particular case and who offer you treatment options that give you hope are important. A good place to start is with a physical therapist who is trained in treating chronic pelvic pain and pudendal neuralgia so they can assess whether your pelvic floor muscles are tense and whether you have pain along the course of the pudendal nerve when they press on it.
The burning you describe and the constant urge to pee are consistent with neuropathic pain and similar to what I experienced.
Violet
PGAD - persistent genital arousal disorder
Re: PGAD - persistent genital arousal disorder
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.
Re: PGAD - persistent genital arousal disorder
Hi, I just found this forum and I didn't want to post anything at first. If i did, it would be like admitting that i have this condition. But I decided to post anyways as i think it would be better to get some opinions.Some background info, I am female 21,virgin and I am not on any medications and I am generally in good health. So, it all started after my exams. It was three hours long and the seats are cushion. After the exam, my vagina was so sore that I almost could not get up. But it went away soon so i didn't think much of this. After a couple of days, my labia started to feel strange and it was so sensitive that I kept pulling at my underwear. After about a month,it subsided fortunately and my labia feels quite normal now. However, I still get tingling or something is crawling on my vagina at times and it happens mostly on the right side. Then, I started to get this arousal feeling in my urethra/clitoris? Honestly I am not very sure. It is only there though and I am generally able to ignore it. This has been going on for about 2 months now. Although the symptoms seems to be slowly getting better, I am still quite worried. After much research, I think it is probably nerve damage due to prolonged sitting without any movement. I have yet to seen a doctor and I have not told anyone yet. I just hoped that it will go away soon,and for good.
Re: PGAD - persistent genital arousal disorder
Hi Candice,
It's definitely something to get checked out just to make sure there isn't some obvious pathology that's causing it. Often docs will order an MRI to rule out anything serious. If you can find a good physical therapist who is trained in treating patients with pudendal neuralgia that might also give you some valuable information. You can check out the list of PT's on the website at pudendalhope.org.
Violet
It's definitely something to get checked out just to make sure there isn't some obvious pathology that's causing it. Often docs will order an MRI to rule out anything serious. If you can find a good physical therapist who is trained in treating patients with pudendal neuralgia that might also give you some valuable information. You can check out the list of PT's on the website at pudendalhope.org.
Violet
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.
Re: PGAD - persistent genital arousal disorder
Hi Violet,
Thank you so much for your input. I will consider your opinion but first, I would have to work up the courage to tell someone about this. I know that my body will heal itself even if it takes a while. I know this might sound overly optimistic, but to all the people who have this, have faith that your body will heal itself. I know mine is getting better day by day. I will probably update again,this time hopefully with good news. Till then!
P.S Has anyone tried subliminals or affirmations? From my research, they seems to be a powerful tool in aiding our body to heal itself. Maybe not a all cure, but it can help perhaps to a certain extent
Thank you so much for your input. I will consider your opinion but first, I would have to work up the courage to tell someone about this. I know that my body will heal itself even if it takes a while. I know this might sound overly optimistic, but to all the people who have this, have faith that your body will heal itself. I know mine is getting better day by day. I will probably update again,this time hopefully with good news. Till then!
P.S Has anyone tried subliminals or affirmations? From my research, they seems to be a powerful tool in aiding our body to heal itself. Maybe not a all cure, but it can help perhaps to a certain extent
Re: PGAD - persistent genital arousal disorder
Hi candice, I am also 21 & suffering from pgad - I have also been diagnosed with a chronic UTI meaning that my bladder wall is infected & most likely causing my pgad. At first I was unable to cope, then with help of pregabalin 600mg & amitrip 50mg I still had hypersensitivity but barely any thing. I cut down my meds but symptoms came flooding back, so now taking 750 pregabalin & 50 amitrip & tbh my symptoms are hypersensitivity no throbbing etc - but I genuinely think it takes the meds along time to kick in - it did for me. I am managing to work & life a normal ish life. I am from the uk & if you ever want to talk please inbox me - I have also decided to blog my experience. It is awful, it is scary but it has made me so strong & you will see a light at the end of the tunnel xx
Re: PGAD - persistent genital arousal disorder
Candice, I agree with you about the power of positive thinking. It definitely helps. When I first had PGAD I went on the old PSAS forum and all I heard was that you never get cured of it. Well, I am proof that you can get your life back and get well. It may take some research and trial and error before you find what works for you but other women I know have also gotten well or at least gotten their symptoms under control so keep staying positive and trying treatments that make sense to you. In the meantime, I agree with Cos69x that medications can be very helpful in getting you through the rough times.
Violet
Violet
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.
Re: PGAD - persistent genital arousal disorder
Hi coz69x, thank you for your encouragement. Although I still have not seen a doctor, I managed to tell my mother about it and I feel better after sharing it with someone. Not really an update but I think it is still getting better. The frequency of the crawling tingling feeling I had has lessened. Car rides are getting more tolerable generally. Also, does anyone have a itch there too(forgot to mentioned it earlier)? I sometimes have it on the upper part of my genitals, especially after I wash that part.
Re: PGAD - persistent genital arousal disorder
I used to have terrible itching. Since recovering from PNE surgery it is mostly gone.
Violet
Violet
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.
Re: PGAD - persistent genital arousal disorder
Hi everyone, I'm having the flare from hell at the moment, actually the last 5 days, bladder spasms, urinary retention and of course pgad and mini spontaneous orgasms..i am on amytriptilline but I'm considering taking slow release tramadol..has anyone had any success with tramadol? Or should i stay on the amytripltilline I'm only on 25mg and its not really doing anything to help me... 
Re: PGAD - persistent genital arousal disorder
Hi Shanny,
I think tramadol has helped me. I don't have pgad---my pain is only in the perineal branch---but I think these meds may work similarly for pn and pgad. A couple of months ago, I started on four different meds that are working together really well. Before dinner, I take 50 mg nortriptyline (which is similar to amitriptyline), 10 mg of vesicare , and in the morning I take 600 mg of gralise and 50 mg of tramadol. I've never heard of a slow release version, but I'm going ask about it. It's a good idea. I take it in the morning, because it actually gives me a touch of insomnia if I take it at night. In any event, I think it is helpful.
April
I think tramadol has helped me. I don't have pgad---my pain is only in the perineal branch---but I think these meds may work similarly for pn and pgad. A couple of months ago, I started on four different meds that are working together really well. Before dinner, I take 50 mg nortriptyline (which is similar to amitriptyline), 10 mg of vesicare , and in the morning I take 600 mg of gralise and 50 mg of tramadol. I've never heard of a slow release version, but I'm going ask about it. It's a good idea. I take it in the morning, because it actually gives me a touch of insomnia if I take it at night. In any event, I think it is helpful.
April