PGAD - persistent genital arousal disorder

[Positivepoppy]

Thanks for posting blog will be my bedtime listening x

[shanny63]

hi everyone, been in hospital for 7 days as i told my dr i had frequent urination and retention....so he thought i had ms...so after a mri, liver ultrasound,chest X-ray,more bloods than i can count, a evoked potentials test, emg, nerve conduction studies, ct and lumbar puncture guess what i don't have ms...i have pgad with potential pudendal nerve entrapment..im having pudendal nerve latency test on the 30th....on 100mg lyrica twice a day 20mg endep at night and valium when it all gets too much..some days i have hardly any pgad at all...but then i get 2 or 3 days where it is constant....this condition is driving me insane....some days i feel like its all too much..i have seen 12 drs now...i dont know what they believe...some have never heard of pgad and others go straight down the ms line....im so frustrated and over it...hugs everyone shannon

[Laurina]

Hi Shannon,
Navigating the healthcare system can be so exhausting. I'm delighted that everyone agrees that you do not have MS.
I'm also taking Lyrica, and sometimes it just takes time for it to help calm irritated nerves; I don't know where I would be without it. I went off it for 4 months, and I was in pre-PGAD mode, my nervous system was all revved up. My doctor suggested I try it again, and I was able to bring it to a therapeutic dose, which really made a difference.
If you had a chance to listen to Dr. Echenberg on Pelvic Messenger, you will see how he describes problems of the bladder being related to other pelvic pain issues.
Also, when I meet a new doctor, I am sure to bring a recent article on the disorder to educate them.
Hope things improve soon.
Hugs
Laurina

[shanny63]

hi laurina, thank you for your reply...can i ask please what dosage of lyrica are you on? i am on 100mg twice a day..some days are good some are terrible..it all depends on how often i am in the car or sitting...im always worse after i have been in the car for a long time..do u have that too...anyway hope to talk to u soon...best wishes shannon

[shanny63]

im so sick of this..i have been suffering since march this year..its almost the middle of the year now...i don't want to live like this..this is not a life..i told my husband that he should divorce me...he shouldn't have to be married to someone like me...i would almost rather have cancer then at least they could treat the pain and there would be answers...i can keep living like this...i will finish my life soon if i get no help...

[adelaidedeb]

Shannon I know how you feel. Im soooo over everyday for 15 yrs being like this. lately its that bad im stuck on my recliner if I sit on my anus part it calms it down a tiny bit I don't go insane with it. I had a dr do neural therapy and had 25 needles and felt no different. Even if I could have a couple of hours break would be good. Lately im not going out at all and stuck at home 24/7. There is must be an answer otherwise ill find someone that will rip this dam urethra and g spot out!!

[Violet M]

Shannon and Deb, I hope you ladies can find some treatments that help.

There was a time, Shannon, when I didn't want to live either but I'm doing great now. So please hang in there a bit longer until you can find the right treatments. It might mean traveling to specialists for treatment. If someone had told me that I would someday travel from the US to France for surgery I would have thought they were crazy. But it happened and it gave me back a life. So, I don't know what the right treatments are for you but you do have options available for you so it only makes sense to at least try those options.

Violet

[shanny63]

deb i know how you feel...i feel like ripping my insides out just to stop this horrible feeling...when i do have good days its awesome and then it comes back....i hate pgad....i don't know why i am being made to suffer....violet i am looking into travelling interstate to see a specialist on this condition..i will go anywhere and see anyone if i can get help to stop this....thank you for you replies...i am struggling at the moment...it is very hard to see a light at the end of this tunnel...but i will keep fighting there has to be an answer....hugs to u all shannon..x

[adelaidedeb]

Shannon were do you live? Im in south Australia. I had a mri that didn't show any problem with my pudenal nerve but been told it doesn't show up on mris. I haven't found anyone that has the exact symptoms. I feel like I either have to pee or orgasm. Its like a high pitched nerval extremely inflamed urethra that gives off a shocking orgasmic pressure arousal. I keep my pee in all day otherwise the more I pee the nerve there makes it worse and im climbing the walls or have to orgasm over and over. I know 100% mine started when I first orgasmed embarrassing but took 15 yrs of marriage before one night I orgasmed over and over it was pretty scarey and was like electric shocks and so strong. A week later this started and hasn't stopped. Drs don't listen. When I do get a uti its UNBEARABLE and im bed bound for days. I have to keep really really still. I hear a lot of girls peeing all day but for me I cant I pee in the morning which starts it off that urinary nerve doesn't stop and at night I pee. Also If I put my finger in my belly button its horrible and hits down in the urethra/clitoris yucko. I cant believe I have dealt all these years with this non stop. The only few years it wasn't too bad was when I was breastfeeding for 3 1/2 years and when I stopped it came back bad again. Im nearly 50 yrs old and been told im in menopause now and I wonder if the last 2 yrs its been that bad because of menopause. Some people say when they orgasm it makes it worse or tiny relief. When im bad I orgasm and it takes the pressure right down and the acidity feeling as well. BUT it does built up again. I keep drinking water that is the only thing that helps unless im really flared up and nothing helps. I cant work and terrified flying anywhere as I just want to be home on my recliner:-(

[adelaidedeb]

Violet what symptoms did you have? And why did you go to france for nerve surgery?