Health Organization for Pudendal Education

I had this from puberty until after my surgery last year. I had to desensitize the nerves and stretch the nerves and mucles internally so they could be at rest. It was very painful and ice was the only relief I got and, let's face it, frozen genitals isn't really relief.
Over a year of PT working to retrain my pelvic muscles and nerves has fixed it, but without the surgery I would still have it.
I'm sorry for all who have it and for those who have not found cures for it yet.
You are not alone and my prayers go out to you

Loves

Kat

Hi everyone

I went to a Vuvul doctor today & she had not heard of PGAD (which i thought would be the case) But she was very understanding. She has given me a slow realease tramadol prescribtion. So il see how that goes. She also had me get blood tests for hormone levels etc. Not that she thinks thats whats causing it but just so we can elimanate it. She also said an MRI would be a good idea. I showed her all the info on PGAD as a disorder on its own & also the PN info as well. This will definetly be a long road of tests etc I can see.

I will also take all of the info I have to the PT

Ive been in touch with a lady in the US called Jeanie. She runs an online support group for PGAD suffers. She was the one that told me about the doctor (Dr. Barry K. from Rutgers)that is researching it. The trend he sees in the MRI's that he has is something called tarvo cysts--he thinks this could be one cause.

Kat, did you have pain & arousal together in the vagina?? Thats what I have but Endep has helped with the pain so Im left with just the arousal. What were you diagnosed with?

I also get muscel spasms in the legs and bum sometimes too.
I should have joined this forum a while ago, so good to be able to talk about it & not feel alone with all the weird & not so wonderful symptoms!

Thanks
Kate

Hi guys,

I had a wicked case of PGAD, prior to my surgery. Now, it is still there at times, but much more manageable. That was one thing that I could not get rid of. I tried the nerve blocks and one doctor wanted to inject lidocaine right into the clitoris, to help stop that feeling, but I declined to do it. But, may be another option. I don't know of anyone who has had the nerve block right into the clitoris, so I'd be curious to see if anyone was helped by that. But, the surgery pretty much took that feeling away for me.

Take care,
Wendy

Hi everybody, I have only just been introduced to this site after suffering PGAD for the last 6years and 6 months (yes, I'm counting) I have tried many, many different meds and had quite a few procedures, but still don't have relief. Today is one of my 'bad' days because I had to sit on a train for an hour to get get to my Dr. appointment. I will check out this site in detail later, sitting is not my friend tonight, but I am just so pleased to find somewhere that I can go and share and learn with OTHERS who have the same problem. For a long time I thought I was the only person in the world with this complaint and it is oddly comforting to know that I'm not alone.
I may be posting in the wrong place but I just had to say something to "put my hand up" and say Hi ...

carolynm wrote:Kate,

On the HOME page I see a pain doc in East Melbourne and one in Fitzroy Victoria....you do have some resources!!!!!!!!!!!!!!!! yay!!!!!!!!!!!

Hi Carolyn, I only found this site tonight and I may not be replying the right way but I hope you get this. I attend the Royal Womens Hospital and all my treatments (none successful yet) are done there. They have a team who completely understand this crappy disorder and are actually interested to learn more and solve the problem. Ihave been given meds, had a zillion tests, tried Botox and recently (one week ago) had a nerve block. I saw them again today and was told "even if this block doesn't work we will not give up, we will all continue until we find a solution" and this is like gold to me after being patted on the shoulder by other so-called professionals and told "good luck with that"
Marg

Hi Marg
Your clinic sounds fantastic. That must be such a comfort that they will not give up. For one thing they aren't doing the 'it's all in your head' routine and . . 'they won't give up' That sounds so like here I don't think hope may have their details and we should do for the home page. I know Violet will be on it like a bonnet .
Thanks for the info and hope something helps you soon. keep us updated
Take care
Helen

Marg,

Hello to you!!! I'm so glad you found us!! Have you been diagnosed with PN? Sitting causing increased symptoms is one of the hallmark signs. PGAD is so embarrassing and makes me feel so ashamed at times. It only starts up in the evenings after a long day's work with my kids. I have not found anything to help with it, although a hot bath sometimes decreases my symptoms.

We are here to support you and cheer you on as you travel on your journey to wellness.

cari

Hi Marg,

Yes, you are very welcome to post here -- it's the right place. Good luck with your treatments at Royal Women's Hospital. As Helen said, if you would like to post the names of the docs it might be helpful to others in the future.

Hey Wendy, glad to hear your PGAD symptoms are mostly gone.


Violet

Kate, I used to be a member of Jeanie's forum but at the time, she was fairly outspoken against PNE surgery so I left. Turns out PNE release surgery is what essentially cured me of PGAD so I'm glad I went ahead with it. But I think PNE is only one of the causes of PGAD.

Tarlov's cysts can have similar symptoms as PNE so it would not surprise me if cysts near the S2,3,and 4 nerve roots caused PGAD in some people. Surgery for tarlov's cysts is a bit risky so if you find out you have them, please get in touch with HerMajesty on this forum because she knows who the best tarlov cyst surgeons are.

Violet

Hi everyone, wow, so many responses !!
Helen and Violet ...I go to the 'chronic pelvic pain' unit at the Womens Hospital. I see Dr Angela Ghia (great lady) and physiotherapist Dr Anne-Florence Plante, they also have a counsellor, psychologist and access to any medico within the hospital system. I had my botox injection done by Dr. Thierry Vancaille with the whole team there taking notes for research, and whenever any one of these people travel overseas to various lectures or symposiums they always take my case papers to ask for more information. My botox didn't make any improvement for me but there was another lady who I met that day having the same procedure and when we caught up at our next appointment she had 80% improvement, though 3 months later she was back for another injection.
Violet ... I was one of Jeannies girls too but was finding it difficult to access my account and the activity seemed to dwindle after that.
Cari ..... my symptoms get worse when I sit or lay down to attempt sleep, at the worst times my body will decide to go into a 'mini-orgasm', it takes no notice that I may be at the supermarket at the time, or talking to someone. The best time that I occasionally get relief from the arousal is when the weather is warm, a holiday in Thailand was extreme but I had 12 days out of 27 felling nearly normal !!!
Wendy ... I had a nerve block 9 days ago and the intention of my doctor was to try and only get the one third of the nerve that goes to the clitoris. I won't say there is a huge improvement yet because the 'flare' takes time to settle but my doctor has said that if there is no relief she would like to try a block under CT scan next time to be more precise. I don't know if that's what you mean by 'direct into the clitoris' or not, I did have a local anaesthetic injected directly into my clitoris once but all that did was to make it numb for a couple of hours but still didn't take down the arousal or prickling.
Kate ... you never know, you just might be one of the lucky ones who finds their solution fast, but I believe we will ALL get this problem solved eventually because I refuse to believe there is any other option.
good wishes, good meds, good doctors, good luck to you all
Marg