PGAD - persistent genital arousal disorder

[Violet M]

Clo, I used ice a lot and don't seem to have suffered any permanent problems from it but I can't say for sure what is best for you. Does it help your symptoms at all?

I don't know if a TENS would help you. I couldn't use it before I had PNE surgery because it made my symptoms go through the roof but I used it a lot after surgery to calm down the muscles and it helped a lot. I think it depends on what is the cause of your symptoms. If you just have tight muscles it might be very helpful. Your physical therapist can tell you where to place the electrodes, depending on which muscles seem to be a problem.

Violet

[Nesssieee]

Hello all.

Just a quick update from me. I have found that exercise and the correct diet have helped me loads. Today is an off day. My symptoms come back for like half an hour at a time. It's strange but least not there all the time.

Had an ultrasound on my pelvis and they found that I had more blood vessels than usual around my uterus which can be a sign of pelvic congestion so I'll just have to wait and see what happens with that.

Hope everyone else is doing well.

Sending positive thoughts!!

[clo236]

Hi guys,

Yea I think ice helps me when I feel like i'm on the verge of an orgasm to calm it down abit, but obviously you can only use it when you're at home. I'm going to wait till I go to the pain clinic to ask about the TENS so they can tell me where to put it aswell.

I could really kick myself I was sitting on the toilet last night and I wasn't even doing a bowel movement, just thinking about life haha and I felt some kind of downwards movement of my muscles for about 2/3 seconds I'm just worried that I strained without even thinking. I know that straining is a big no no with PN. Would this have caused anymore damage?

I'm just so conscious now of every move like i'm even worrying about pulling this heavy chair towards me earlier on that i've maybe made things worse, I hate living in fear

I feel like I'm i quite abit of pain tonight but at least it isn't arousal, its hard to tell though if its a flare or what it is as ive been on gabapentin for only 3 weeks. I'm on 3000mg of gabapentin and I actually think I felt less pain on pregabalin

Thanks,

Chlo xxx

[Violet M]

Chlo, I think that a second of straining would not be an issue. It's chronic straining that typically causes a problem.

Pregbalin does work better for some people.

I know ice has its limitations since you can only use it at home but at least it helps you get to sleep and helps keep you from going insane sometimes. We have to use every available tool to help us, eh?

Violet

[whatislife]

What meds work? By work i mean lessens it or so, I have not been on any meds yet so im just wondering.

[Violet M]

Different meds work for different people. I had good results with lexapro and for sleeping I used clonazepam.

Violet

[clo236]

hi guys,

I feel like the pain is worse on gabapentin and i get those horrible arousal symptoms on gabapentin off and on plus im having to take tramadol. I'm reducing the dose of gabapentin and then I'm going back on to pregabalin, do you think im doing the right thing? I'm terrified if pregabalin didnt help me again. I don't know how I'd cope living with those arousal signals. I mean do people cope and get on with life, do you learn to ignore it.

I'm afraid my anxiety has gotten alot worse and associated depression with this. I might even have to take time out of university. What I find so sad is that I'm dreading the rest of my life ahead of me knowing i'm so young.

I also keep thinking that I've hurt and damaged the nerve again, such as today I got up off the sofa feeling tired and walked past the coffee table and because my left foot wobbled I'm scared that somehow I might have fallen between my legs on it. But surely I would know if I did. I think its just an anxious thought

The only positive thing is that I'm going to acupuncture and physio this week, I don't think the physios are very experienced on PN here though.

Thanks,

Chlo xxx

[clo236]

im coming off 3600mg of gaba in 6 days is that too fast

[Violet M]

I'm not sure how fast you can come off gabapentin but I know you have to be careful because it is an anti-seizure medication and if you come off too fast you can have seizures. Did your physician tell you to come off that fast? I would follow whatever he tells you or at least check with the pharmacist. Since gabapentin is not helping you, I don't think you are doing the wrong thing switching back to pregbalin. I expect it will still work for you. It's not the same as an SSRI which I've heard may not work for PGAD if you go off of it and then try to go back on.

I've known people who have learned to cope with PGAD although I can't say I was ever very good at it. Partly it's a matter of finding what medications and remedies help, and many people do seem to be able to find something that dampens the symptoms or even eliminates them. I can definitely understand your anxiety though. Good luck with PT.

Violet

[clo236]

Hi violet, you only need to be careful if you have seizures but as I don't then I'm ok coming off it quickly enough. I have a few anxious questions to ask unfortunately. Would there be any chance if I was to crouch down to say tie my shoe laces could I hit my genitals off the floor or would u literally need to be doing the splits. I just dosed off with my phone in my hands but hovering over my pubic home in scared I hit myself in the pubic bone or between the legs. Another thing is Is it just Sitting and the like that put pressure and cause damage to the PN as I spent the last 4 hours watching Tv and napping on my side on the sofa but come to think of it I think my back and bum were probably touching/leaning against the back of the sofa. Would this cause any damage to the PN? Xxx