PGAD - persistent genital arousal disorder

[Ruth212]

I don't know if this would help anyone, but I'm learning that my symptoms are linked with lupus. Flares seem to intensify spasms and pain. Also, increased anxiety seems to play a big part...and my darn period.

On a good note, the PT works. Yes! I was able to get symptom free, by doing release stretches 3-4 times a day, along with 30 minutes of cardio. Also, using marshmallow root supplements and following an IC diet, helped me. Meditation and diaphragmatic breathing ease the most severe symptoms. Strangely, Zofran helps??? I have no clue why the anti nausea med works, but it does.

Aloe Vera seemed to irritate my bladder. I haven't tried the herbal tea yet, but I plan too.

[Anisha_d87]

Thanks guys xxx

[whatislife]

Are there any natural remedies that can help you sleep through this? Lack of sleep has been such a big problem for me, usually I'm very tired it should take me naturally like 10 minute to go to sleep but with this i see myself checking the time every hour that passes. I went to sleep today at about 1 am, fell asleep roughly 2 to 3 hours after that. I also had to wake up at 8 am today...

[April]

whatislife,

Have you tried using ice at night? When my burning is bad, I go to sleep with a bag of ice cubes in my underwear. I think the extended use of ice carries some risks (here is a thread that discusses that: (http://www.pudendalhope.info/forum/view ... =22&t=6762), but I haven't had any real problems with it. So, you may want to try if you're not sleeping.

April

[whatislife]

April,

I thought of it before but i was worried what would happen if i actually did it over night, like how you asked here too. I'm going to try it tonight

[Violet M]

Ice was a lifesaver for me. I like the soft gel ice packs (ace brand) and I also used the frozen ice balloons inserted vaginally. I went to sleep many a time with them in. They melt pretty soon so I don't think it's a problem leaving them in. I probably overused ice, but now 11 years later I don't seem to have any permanent bad effects from it.

I also used clonazepam for sleep during the worst stages of PGAD/PNE.

You could also try extra-strength vagisil.

Violet

[clo236]

can someone please help me,

Tonight ive had only one hour sleep and the scary thing is that I had taken tramadol tonight.

Basically I feel like im on the verge of an orgasm its horrific. I can't sleep cause it wakes me up, im terrified id have a spontaneous one or something.

I feel like ringing the GP but I dont think they can do anything for me.

how do i dampen these feelings i have 5 percent lidocaine but i dont even want to touch down there, its actually my clitoris.

tomorrow i have to increase to 2400mg of gabapentin.

i dont even want to speak to anyone and i cant go to uni tomorrow cause i feel i might have one.

clo xxx

[Patty]

Can you take Benadryl? If so take 2 tablets but no driving. Also can you take a warm bath? The ice balloon is a good thought. I would see your primary doctor about this. I know they probably don't have a cure for pudendal issues but they should be able to offer something for sleep. Elavil may be a good choice to help with both issues. And you can take Elavil with neurontin. Hang in there.

[Violet M]

Clo,

My heart is aching for you because I spent many nights similar to what you are describing. There are some tricks that might help you deal with it. Some of these I mentioned before but there are some others I would add.

Try ice balloons internally and gel ice packs externally. I think that over-the-counter extra strength vagisil (20% benzocaine) is much more effective than 5% lidocaine. Or you could try salon pas patches. Another option is some kind of lidocaine spray so that you won't have to touch yourself. If you really want to go nuclear you could try something with capsaicin in it. I have used it in the past. It will burn like heck though, but you can dilute it. You could also try sitting in hot water and then ice cold water. I described my set up here: http://www.pudendalhope.info/forum/view ... =25&t=5267

There are several drugs that might help you sleep. You could try clonazepam, ambien, or soma. For me, clonazepam worked the best, especially in combination with a pain medication. Tramadol is good for minor pain but it is not a real strong opioid. I would let your doctor know it is not working for you.

I forgot where you live but I'm thinking it is the UK. Can you ask your GP for a referral to see a pelvic floor PT -- one of the people on our list of PT's? You really need a proper diagnosis as to whether there is neuropathy involved, in addition to treating symptoms. Also, can you ask for a referral to see one of the pudendal neuralgia specialist physicians?

Violet

[clo236]

Hi Violet,

We actually don't have extra strength Vagisil in the UK I have been given 5% lidocaine cream to put on but I hate putting it on when the arousal is really bad.

Tonight I felt like I was on the verge of an orgasm, so terrified I'll end up having a spontaneous one. I then put an ice pack between my legs and it sort of bumped in to my clitoris....is that going to make things worse like damage the nerve or make the arousal worse

I never should have switched to gabapentin. I think my tramadol might have semi worked tonight as I feel like its dampened slightly.

I'm going to make sure that i get a referral to a womens health physio when i'm at the pain consultant on the 9th of March, but in an ideal world I would love to go when the pain and arousal has slightly settled.

Would a Tens machine work, I actually bought one there to see if it would help distract me, could it make everything worse?

If this arousal doesn't go im going to have to take a semester out of university, which would be my worst nightmare

Thanks ,

Clo xxx