PGAD - persistent genital arousal disorder

[marg]

Hello people,
I went for a follow-up appointment after my nerve block and reported that I wasn't getting any relief though I thought it might be too soon to tell because the 'flare' always takes a while to settle. She gave me Lignocaine gel with the words "try it, it certainly won't have any side effects like the meds and it just might help the flare settle" From the first time I used it I had an improvement of about 50% (applied to the clitoris and upper surrounding area to stop arousal sensation) now I can't be sure if it was the block or the gel that caused this but I'm not going to stop using the gel while I'm feeling a little closer to normal. Would you???
I thought I'd mention this because I see there are a lot of women who use ice and I think this could be a another option, and I'm only using the 2% strength, I think it goes to 10%
One final thing, I chose my avatar because it is a long path that sometimes leads to a sunny day and sometimes it's cloudy and that is how I have comes to terms with PGAD, it has been a long path and I'm not there yet but I see the 'possibility' and I have to continue because the only other option is not acceptable to me any more.
Marg

[carolynm]

Marg,
I love your explanation of your avatar!

the lidocaine 5% doesn't do a thing for me. I had high hopes for it but it just doesn't feel any different after I put it on. I'm so happy it works for you.

best wishes,
cari

[marg]

Hi Cari,
Thanks for the comments on my avatar, I think all of us with PGAD can relate to that !!!
I am going to stop the Lignocaine for a couple of days soon just to check whether it's the gel or the block that is giving me some relief but I just want to continue for a few days to let everything settle a bit. We get so excited about any small improvement, I feel like a kid at Xmas time !! and let me tell you that was a helluva long time ago
Marg

[mandymand]

hi marg,
i would just like to add that 5%lidocine works for me also,shame it only lasts a couple of hours but it does completely numb everything,like you i put it all over the places i feel the pgad the most,and after the gel kicks in which is about 10 mins i can honestly say i feel nothing down there, the arousal just vanishes, and yes it feels great.
now if i have to get a bus anywhere i make sure i put loads on (as anyone wiv this will know vibrating buses are torturer) and it works like a treat,thank goodness something works as i have to travel by bus from time to time when i can't walk when the pain is too bad and i have almost cried on the bus as the arousal was so unbearable.
i'm using gabapentin also, which i think also helps a little but i still feel it most of the time just not as strong when i take these.
please please do keep us posted on what ur hospital has tried and let us know where this hospital is,as i think we all want to know of ways of getting rid of this for good and maybe if we r all really lucky there may actually be a cure for this,and that one day normal g.p's will have heard of this and will know right away what to do,instead of this "it's all in the mind" rubbish they keep telling us(who in there right mind would imagine feeling aroused all day everyday
also i forgot to ask b4 does anyone else get a hot feeling sometime,not a burning feeling but what feels like heat in that area,i'm guessing it's the nerve playing up i just wondered if anyone else feels it too
thankyou to everyone who has posted info about this for all us suffers,as it's so hard talking about it to non suffers, as it's really hard for them to even think about how it is to have this embarrassing symptom all the time,i've only had it for 10 months and it already feels like a lifetime,so i'm very grateful to receive advice from other suffers.

[Violet M]

I found that 5% lidocaine never helped much but over-the-counter 20% benzocaine worked better (in extra-strength vagisil). Although, I have to say before surgery none of these worked -- they only helped after surgery.

[marg]

Hello friends,
Mandymand ... Buses, most cars and TRAINS !!!! Interesting though that my partner has a Subaru and I have no problem with that at all. My physiotherapist said quite a while ago that the Subaru seats have a shape that takes the pressure off the pudendal so I have adjusted my car seat to be exactly the same and now I find I don't dread driving as much any more. I tried Gabapentin (lowest dose) but got such bad buzzing in my head and dizziness that I had to stop, Endep 50mg takes away most of the prickling and pubic-hair pulling sensations for me.
I don't go back to my clinic until January, it's at the Womens Hospital in Melbourne, so I am spending the next weeks loving the Lignocaine and still hoping that the block I've had done will be helpful, the next plan is a block using a CT scan to be more precise in targeting the clitoral stem of the nerve. But I know that the team are still looking and listening on my behalf. I too went through some terrible situations with doctors, gynos, urologists who all gave me the "you've gotta be kidding" treatment and I know that eventually they will hear about PGAD and just might send me an apology in their minds.
I get surges of heat sometimes, not a burning feeling, more like the feeling when your face blushes, this can last from 10 mins to 5 hours at a time and I think it's just another sympton of this condition. Whether you have had this 'thing' for 10 days, 10 months or ten years it makes no difference, because nobody else knows what it feels like. love and good wishes
Violet ... it's interesting that benzocaine only helped after surgery, I have had creams before and a local anaesthetic directly into my clitoris once that had zero effect, but since the block was done I'm definately feeling better, I'm still going to give the gel a break to see the difference but I' going to pick a quiet week. I forgot to tell you with my first post that is was my main doctor/surgeon (Angela Chia) who found this site and told me about it, I walked into her office and she said, with a big grin, "are you a member here??" more proof to me that she researches a lot !! My best wishes to you and thanks, thanks, thanks

[DoubleEdgedSword]

Hi ladies! Lots of useful information here and I'm going back to read and take notes when I have a bit of time. Some of you met me on the Welcome Centre forum.

I have PGAD and have had my hormone levels tested (normal), internal and external ultrasound, had the Genital Tactile Mapping Test done (that alone caused a flare-up), the pelvic MRI (I still need to talk to my doc about the 'nothing of consequence was found') and have found no relief yet.

I was stopping by to ask if any of you ladies have also had a colonoscopy while your PGAD has been active, and if so did it cause a flare-up or any sort of reaction? Reason I'm asking is that I have to have a scope on Tuesday, my PGAD is active and I'm also still going to be on my period, so I'm concerned with 'all that going on' that the pressure or activity will make it worse..

If anyone can advise or comment, that'd be great!

I also heard of the E-S Vagisil from one of the ladies here, and I've heard of using E-S Orajel too, but haven't tried either yet. Has anyone here? Thanks so much!

[helenlegs 11]

Sorry DESm can't help you with the colonoscopy question, I just wanted to say that I LOVE YOUR DOCTOR Marg

[marg]

Hi there DES,
I have had my PGAD for 6 years 9 months during that time I have had 3 colonoscopys and they never made my symptons any worse (or better, of course) these were done just as a usual bi-annual check as there had been a history in my family of bowel cancer (mine have always been clear) and thanks for the info about the other gels, good luck and enjoy the peaceful sleep of the anaesthetic
Violet ..... I LOVE my doctor too, hmmm, wonder if she is single ?? (just joking)
Love to you all
Marg

[Violet M]

Hang in there ladies. Just spoke with another gal today who is several months out from TG approach surgery and PGAD is starting to settle down. That's the 3rd TG surgery patient I know of who is getting rid of this monster -- also, Dr. Beco's you-tube video says he's cured 4 people with PGAD. Just wanted to give you ladies some hope.

Never had a colonoscopy during my PGAD years. Sorry, I can't answer that question.