Health Organization for Pudendal Education

I am also new to this site and am struggling to deal with what i think may be pgad. I have plucked up the courage to speak to a neurologist but was so embarassed i didnt explain much about what what was happening to me. He said he had come across this before and came to the conclusion that the woman involved wasnt having enough sex and needed to see a psychologist. I am definately not having any sexual thoughts when this happens to me and no amount of orgasms seem to stop it. He has organised an mri scan for me but said he doesnt expect to find anything. Im not sure what to do next but i dont think a psychologist is going to help. Does anybody have any advice?

AAAAAAAArgh!! Don't get me started!!! NOT GETTING ENOUGH SEX!! What on earth! I can not believe this. I'm sorry , I will calm down, BUT even if I wasn't having a rubbish day I would still be on my high horse.. . . . . . There, have taken a few A'As out already
I doubt the MRI will show too much either although still a worthwhile exercise just in case something does show like a labaral hip tear, tarlov cyst BUT I'm fairly sure you would have other symptoms apart from PGAD with those pathologies.
Sorry, Welcome Yorkshire
I'm so glad you have found this forum. Have a cup of coffee now so I will focus on what may help you. I would read through the home pages and see if there is any Dr. near you who is PN aware. There is also a list of physio's. If you have any pelvic muscles tightness that can sometimes affect the pudendal nerve, causing PGAD. Some targeted physio to those tight muscles could help.
There are some medications that can be of use too but I think that you may need to get a nerve issue diagnosis first. What does your Dr. say? I am presuming you are from Yorkshire. I'm not that far away if this is the case.
There is a fairly lengthy thread on here about PGAD http://www.pudendalhope.info/forum/view ... hilit=PGAD
That's because so many people here do suffer from it, so you are by no means alone with this.
Take care,
Helen

Thankyou for your speedy reply and advice helenlegs 11. I have been having bladder problems and abdominal pain for a while. I had cystoscopy, laparoscopy and hystoscopy all of which didnt show anything of significance. I have back problems and after the ops was struggling to use my legs they were heavy and shaky however as the swelling went down my legs got better though somedays they are still a bit heavy and shakey. I think this is why they are doing mri on back and brain. The symptoms that i think may be pagd started as the feeling came back to my bladder which then went into over drive. I dont know anything about pn but does anything ive written sound like it links with it?

Hello Yorkshire and welcome from me too

Lots of us have problems with PGAD. The reaction of your neurologist was unfortunate to say the least. I will refrain from saying what I think, there would probably be a lot of asterisks involved....

Have a read of the (v long) PGAD thread to which Helen has linked.

You asked about PN - main symptom of PN is pain in the distribution of the pudendal nerve, which typically gets worse when sitting, and worse during the day.

If you have been diagnosed with a pudendal nerve problem, then there are things that your GP can prescribe for PGAD which have helped lots of us. And maybe he can prescribe them anyway. Once I got up my nerve to talk to my GP - who was a bit surprised, but very supportive (I was very embarrassed) and he certainly took it seriously - it was all much easier. He did not know what to suggest initially but took it to his colleagues at their regular case meetings and came back with lots of suggestions, citalopram or escitalopram were top of his list, tramadol slow release was something that I found very helpful for this so we stayed with that.

In the meantime, ice. Packet of frozen peas, wrapped in an old teatowel. Numb is good, in this case.

Yes Yorkshire, there could be a connection between what you have noted as symptoms and the pudendal nerve. What kind of back issues do you have and what treatment(s) for that problem? I also wonder how your problems started ? do you have any defining incident or trauma at all?
Anyway I hope that you have found common ground with some problems here. there is so much info however and it can be a bit overwhelming especially if you have a few problems as it can get very complicated.
Thing is 'the experts' often don't have a clue so it is up to us to become clued up on as much as we possibly can.
I remember 'practising' saying words that I wouldn't normally use before going to see the Dr. as if I was a tourette's sufferer. It does get that bit easier the more you say vagina
Helen

helenlegs 11 wrote: It does get that bit easier the more you say vagina
Helen

Oh dear, now I have an image of you sitting there saying it over and over again....

Ok, I will now behave.

Ive had pains inmy back and siatica for quite a few years but this has got worse over the last 3 years since we moved house. Ive been renovating and doing as much of the donkey work myself ie lifting floors filling many skips and transporting 12 tonnes of gravel. Ive ignored the back pain and done lighter work when its been too bad. I havnt had an accident at all but have lifted and moved things that have been far too heavy.

As far as as all the pains down below and in my abdomen i have no idea what started all that. I cant take antiinflamatories which doesnt help so take codiene and paracetamol but it doesnt really help much.

I like the thought of an ice pack I think that may help.Ive never had to say these words out loud before and i just couldnt get them out but practising beforehand is a great idea. I will makesure the children are out of the house first though

Sooo along with reading up on the link you gave me thats 3 things i can try. Its a good to know something might help and also to know this happens to other people too. I have felt like i have been losing my mind but will try to feel more positive.

Has anybody told a partner about this?I have been so sure i wouldnt tell my husband but he is beginning to notice im not my usual self amongst other things. So im thinking maybe if i tell him a little bit it might be easier

I have never been on any kind of forum before and wasnt expecting replies so quickly. Thankyou

Ooooh, I'm in Northumberland but not that far from Newcastle and fairly near the sea too

Funnily enough, I had the most awful back problems after moving house and the renovation of it. That was over 9 years ago now and it's still not finished!!
I had a microdiscectomy as there was a 'very large prolapse' at S1/L5 and that sorted me out with that one. Now it's me bum Trying to get anyone to regognise that fact has been, and tbh still is very difficult up here.
Violet has posted a new link to pelvic physio's tho' very recently and there is a girl at Newcastle's RVI now who may be able to help us. http://www.pudendalhope.info/forum/view ... sio#p26060 I also have heard about a pain clinic in Middlesbrough that may have pelvic pain insight but will need to check that one out
If you wanted to watch this http://www.abc.net.au/catalyst/stories/3474801.htm a program aired in Australia that has quite a wide audience. It may ring some bells with you. You are definitely not the only person with this problem.
I feel as if I am just giving you tons of homework . . . . will be asking questions later
My husband knows a fair bit, but not everything. . . . but then I have been like this for 4 years. Your man may be as happy as can be if you explained the PGAD to him, well we have to make light of things sometimes.
Seriously tho' I think talking it over could only be a good thing and prepare you for future Dr. appointments, especially as you have some more info on what could be causing it. Let him watch the video?? that might do it and then you won't have to say a word.
Take care
Helen

We are three years in and the house is nowhere near finished yet. It is in a much better state than it was though. Im halfway through painting the kitchen then that will be a whole room finised but i cant stop shaking so finding the cutting in around the edges tricky. It looks as if my hubby has been at it or the kids lol. Never mind it can wait

Today has been a bad day. I was hoping to get to tesco to get some frozen veg to try as you suggested but driving would be too dangerous so will try again soon. When its as bad as this i cant concentrate on shopping anyway and end up with an empty trolly and nothing for tea. It does make sense that it will help tho.

Im going away for the weekend tomorrow and dreading it. Not sure how i will deal with a 2hour car journey but cant get a refund so will give it a go. Its to celebrate our 25th wedding anniversary this year so dont feel like i can just drop it and i really wanted to go till this monster decided to up the anti again. I think this weekend might be time to broach the subject but maybe only in a small way to test the waters as it were.

Im struggling to concentate on reading today but have managed the link to the show you suggested. That sounds exactly like me. It would be nice if the spontaneous ones were only during the night though because i find that really disturbing.

Hope to finish my homework soon lol

Sorry to moan

Hey moan away. . . when there is no one else left to moan to, that's bit goes with PN territory. I do hope you enjoy the weekend, you deserve some good times. make the best of it.
ps I am watching my husband tile the shower. see how mundane this weekend could be
Take care,
Helen