Hi Holly,
I'll chime in and say I have had the same experiences as Violet and Stephanies. I cannot tolerate any internal pt without a major flare (and my pn now is quite mild, so even for me it's intolerable). I hadn't done internal since years before my surgery but just last year had some internal work done to try to diagnose my ongoing pain, and it created a huge flare.
April
PGAD - persistent genital arousal disorder
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HollyWithHope
- Posts: 4
- Joined: Sat Feb 17, 2024 3:32 pm
Re: PGAD - persistent genital arousal disorder
Hey there,
thank's a lot for all your replies. I really appreciate that! Two days ago I carefully tried the pelvic wand for a few minutes, specially working on my right musculus obturatorius internus. Till today there is no flare up.
Because I'm fighting with these symthoms the third time in my life, I hope it's not permanent. Nevertheless the pain is stronger this time. Since I'm taking Pregabalin/Lyrica the shooting, needle like pain declined a little bit but the burning is still there.
@stefanies:
I did not know that it's also called cryoablation. Thank you for the information. Due to that I found a lot of older posts discussing this method. I hoped it would work like anesthesia and the pain is immediatly frozen away. Would be too good to be true. It's so sad to hear, that it's caused you a big flare up years ago.
@Violet:
Huge thank you for organizing the forum and giving your advice to us. I have read so many posts of you in the last few days. You are really a great person!
Maybe I try to get an appointment in a clinic specialized neurourology. I was reading a lot in the german forum and found a few doctors that are familiar with the pudendus nerve.
@april:
Thanks for sharing your experience. It's sad to hear, that you still have ongoing pain after surgery.
Wish you all the best!
Holly
thank's a lot for all your replies. I really appreciate that! Two days ago I carefully tried the pelvic wand for a few minutes, specially working on my right musculus obturatorius internus. Till today there is no flare up.
Because I'm fighting with these symthoms the third time in my life, I hope it's not permanent. Nevertheless the pain is stronger this time. Since I'm taking Pregabalin/Lyrica the shooting, needle like pain declined a little bit but the burning is still there.
@stefanies:
I did not know that it's also called cryoablation. Thank you for the information. Due to that I found a lot of older posts discussing this method. I hoped it would work like anesthesia and the pain is immediatly frozen away. Would be too good to be true. It's so sad to hear, that it's caused you a big flare up years ago.
@Violet:
Huge thank you for organizing the forum and giving your advice to us. I have read so many posts of you in the last few days. You are really a great person!
Maybe I try to get an appointment in a clinic specialized neurourology. I was reading a lot in the german forum and found a few doctors that are familiar with the pudendus nerve.
@april:
Thanks for sharing your experience. It's sad to hear, that you still have ongoing pain after surgery.
Wish you all the best!
Holly
Re: PGAD - persistent genital arousal disorder
My pgad only flares when i am fully at rest. That is when i am laying in bed at night. I dont know if i can even call it pgad but i think thats what it is. Its this light tingle that is not pleasurable but also not painful. i know i sound like a nutjob describing it this way but its very hard to put into words. ironically i dont have any libido and if anything have negative libido right now, meaning i am sort of appalled but any feeling of arousal. truly a hellish situation
i have to sleep in fetus position hugging a pillow to somewhat make it feel less intense. like i said it is light... but it is the persistency that is exhaustingly irritating
i have to sleep in fetus position hugging a pillow to somewhat make it feel less intense. like i said it is light... but it is the persistency that is exhaustingly irritating
Re: PGAD - persistent genital arousal disorder
Mine was worst at night too. I don't know if it was due to the position of lying down or if it was because there is nothing to distract you when you are trying to go to sleep. For several months when it first started I got almost no sleep at all. Eventually when I got on some drugs that helped, I was able to sleep better.
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
Violet M wrote: ↑Tue Feb 20, 2024 6:48 amMine was worst at night too. I don't know if it was due to the position of lying down or if it was because there is nothing to distract you when you are trying to go to sleep. For several months when it first started I got almost no sleep at all. Eventually when I got on some drugs that helped, I was able to sleep better.
Violet
I have a question, was you pain one sided or both sided? Before surgery?
Re: PGAD - persistent genital arousal disorder
Can I ask if your pain is on both sides or one sided?April wrote: ↑Mon Feb 19, 2024 8:00 am Hi Holly,
I'll chime in and say I have had the same experiences as Violet and Stephanies. I cannot tolerate any internal pt without a major flare (and my pn now is quite mild, so even for me it's intolerable). I hadn't done internal since years before my surgery but just last year had some internal work done to try to diagnose my ongoing pain, and it created a huge flare.
April
Re: PGAD - persistent genital arousal disorder
Worse on one side but over time it spread to the entire pelvis. Bautrant released entrapments on both sides.
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
SweetMama,
If you have formed scar tissue after a hysterectomy, it could potentially cause entrapments on both sides. I'm not saying that's for sure what has happened but theoretically, it is possible. Or if the pelvic floor was pulled tight on both sides it could theoretically cause a stretch of the nerve on both sides.
Violet
If you have formed scar tissue after a hysterectomy, it could potentially cause entrapments on both sides. I'm not saying that's for sure what has happened but theoretically, it is possible. Or if the pelvic floor was pulled tight on both sides it could theoretically cause a stretch of the nerve on both sides.
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
That is what I am afraid ofViolet M wrote: ↑Wed May 15, 2024 6:35 am SweetMama,
If you have formed scar tissue after a hysterectomy, it could potentially cause entrapments on both sides. I'm not saying that's for sure what has happened but theoretically, it is possible. Or if the pelvic floor was pulled tight on both sides it could theoretically cause a stretch of the nerve on both sides.
Violet
Going to talk with another surgeon and hear his opinion