PGAD - persistent genital arousal disorder

[Nesssieee]

Can't believe the improvement in my symptoms after trying the stretching exercises in that book. I've been almost symptom free for 2 days so I'm really hoping these stretches are making a difference. I've felt so good. Fingers crossed I've found my cure!!

[Nesssieee]

Hello everyone.

Just a quick update. I'm starting to have more good days than bad. I'm really hoping this is the start of the healing process for me. Feelings of arousal seem to be getting less and less and bowel movements are getting better so I think I've cracked my code!! Let's hope and pray for a recovery now.

Hope everyone is well.

[Susanjane]

Nessieee
It sounds like you have taken the right steps towards healing by being pro-active with the Amy Stein exercises, Yoga and a positive mood clearly showing in your last two posts. The fact of having plenty of good days will be enormously encouraging and it’s important not to lose heart if you slip back for a day or two.

Looking back at your posts I remember the feeling you describe of constantly pushing down. I used to describe it as constantly feeling like my insides were falling out! I also had the irritation around the anus which I learned is neuropathic itch. A tight pelvic floor will certainly set off a cascade of horrible symptoms but it can and does settle back into a relaxed state in time which will then restore a proper blood flow providing essential oxygen and nutrients to the tissues. Keep going and my very best to you. SJ

[Shaela]

Hello!

I'm currently 25 years old and I suffered from PGAD for five years. I was diagnosed this by a chronic pain doctor who told me this was associated with hyper-tonic chronic pelvic pain and linked me to PGAD. I'm posting here for hoping for some advice. I was in university at the time i developed this so I tried medications after medication until i found the right one. I would take 1200 mg of lyrica daily and it helped me cope with this. I'm currently finished with that and I really do not want to take anymore medications anymore. Everything leans me towards physical therapy, does it work?

[Laurina]

Hi Shaela,

Pelvic floor physical therapy was very useful to me, but it was done while I was on Lyrica. The PT got better results when I was on medication because my nervous system wasn't as revved up.
I still do about 1 hour of home physiotherapy exercises everyday to make sure I maintain my progress.

If you care to share in which country you live, maybe someone from this forum can suggest a good physical therapist?

[Shaela]

Hi Laurina,

Thank you for clarification. I already know of one pelvic floor therapist that knows about this I just wasn't completely sure it can help.

[Shaela]

Hello !


I just had my first physical therapy session and I'm so confused. My therapist was well aware of pgad and told me she had multiple people come to her for it. Though she was telling me to do a couple of very basic stretches that were not knew to me. She told me it should take atleast two months for me to notice traction (rip bank account). I go to the gym twice a week with my sister for many years, and these stretches i do them all the time but i haven't seen a single difference with my PGAD. I don't really know what pelvic floor physiotherapist do exactly, but is this what i should expect every visit?

[Violet M]

Hi Shaela,

I'm not sure what exercises you are doing. Each physical therapist is different so I can't say for sure if what you are doing is typical.

Stretching exercises are OK for some people but they did not help me. They made me worse, in fact, because I had a nerve entrapment. For someone who just has a tight pelvic floor without a nerve entrapment, I think stretching exercises should be fine but if you were already exercising heavily, including stretches, you may need to consider whether doing even more exercise is the right way to go. Did you let your PT know that you have already been doing those exercises and they don't help?

Some PT's focus more on myofascial release of the pelvic floor internally with trigger point release therapy. I can't say for sure what's right for you. I couldn't tolerate the internal work either. I guess what I'm trying to say is that it's worth it to try PT but it doesn't work for everyone. It made me worse but maybe I was not the typical PGAD patient?

Violet

[Shaela]

Hi Violet,

My session was just an assessment, and she was aware that these stretches were some that i did all the time. Though I havent talked to her enough to find out what else she is going to do to help me. If PT doesn't work for me, what do you recommend? My goal is just to stop taking medications.


I could easily cope with the constant arousal since im not really in school or something that requires my immediate focus. I just cant handle the spontaneous orgasms, i get these when i build up anxiety and depressents were the only thing that stopped me from having these. Before i had PGAD i never took a single depressant so I'm really not use to them, even now.

Sorry that i am asking too many questions, i just never talked with anyone else that has or had pgad.

[Violet M]

Though I havent talked to her enough to find out what else she is going to do to help me. If PT doesn't work for me, what do you recommend? My goal is just to stop taking medications.

I can't really make a recommendation since I'm not a doctor and I don't know that much about your case. You have a lot of options but it's going to take some research for you to determine what you think is right for you. It's probably worth it to try PT for a bit, but only from someone who is familiar with PN and is trained in treating people with possible pudendal neuropathy.

I went ahead and took the antidepressants until I had healed from surgery because they really helped dampen the symptoms of PGAD. Like you, I had never taken them before and I didn't like having to take them so I understand your not wanting to have to take them. I am completely off all medications for PN/PGAD now. Hopefully you will be able to heal and get off the meds eventually. The only thing I would caution against is going on and off, on and off the meds because some people have gone off and then decided they really needed them but when they went back on, the meds didn't work as well, or didn't work at all. I think it is less harmful to your body to just take a steady dose than to be going up and down, up and down on the meds. Once you decide to go off permanently, you need to wean off slowly. I took a full year to wean off the meds by cutting back by 1/8 pill per week.

Best,

Violet