Health Organization for Pudendal Education

Hello Calluna and hello Jeaniec
Thank you both for your thoughts ideas etc.
I was taking Garbepentin but at the rise of an extra 100mg I was not coordinating properly this worried me so much ..eventually I was put on the sister pill pre gablin for which there was no real monitoring as everyone seemed to disappear. The gp would not talk about the pain and I had no idea how to contact pain management I still don't.
If the pain with a prolapse is similier to pudendal how does one know what is what? and am I right in thinking that all the imaging and scanning has been to no avail...can they really not pick up nerve or prolapse problems...I have spent so much money on people I thought could help ...Every day I wake to pain. Just recently I think I have suffered some side effects of the drugs I have been drenched in persperation..hair dripping like just from a swimming pool. It has been frightening because I can't move with the cold although
our house is not cold. I think there are lots of letters that gp has not seen there is one that took three months to arrive from a cystoscopy I had in 2009.
I have requested a copy of that letter today as the gynie said he had reccommended some other procedure but I was never informed by the gp
The colonoscopy I had under G.a last week says scattered diverticulam no acute pathology... I just want this pain to disapea I want to be able to stand for longer than ten mins without pain. I will take the advice of amends with reg gp as I think humble pie is a small price to pay if someone could just help. The mrn seems the best imaging machine and if there is a nerve damaged it could well be the problem but how does one repair damaged nerves.How can I feel the imense pain and heat from the vagina area but nobody can see or feel it? I don't expect any more answers because Calluna you have been wonderful in stripping the letter into sections and making things a lot clearer thank you for caring love from Little mo

Good morning mo

Contacting the pain management people isn't the easiest thing, I have found. How it works at the clinic where I go, if you need an appointment then you ring up and ask for one. There is usually a nurse consultant around who can call back if you need immediate advice, but she is usually run off her feet, they are so short staffed in there. So best thing, if your clinic is like mine, is to ring up and ask to make an appointment to see the doctor there. But for day to day management of prescriptions and dosages, your support should be your GP.

Pain with a prolapse is not usually similar to PN pain, no, it is usually more of a dragging ache which can sometimes get quite sharp - but! - you could well have PN problems as well as a prolapse. You do definitely have PN symptoms, the hyperarousal for sure, the burning vaginal pain. Your pain has been recognised as neuropathic, and it is the pudendal nerve which is involved. So that is Pudendal Neuralgia - PN.

Prolapse and scans - Prolapse (bits of innards dropping down into the vagina and making a bulge) is not usually diagnosed by scans. In particular, many prolapses are only a problem when the person is standing. So doing a scan, with the person lying down, would only show everything in its right place. Prolapses are usually diagnosed with a pelvic examination done by a gynaecologist, sometimes the exam needs to be done with the person standing up. I do know that MRI scans don't show nerves so well, usually. It is quite possible that your problem with the pudendal nerve hasn't shown on any of the scans you've had.

Feeling so cold - pain can do that, and the sweating too. It is horrible I know, I do feel for you.

Can I just urge you not to worry too much about the history of all this, letters which have gone astray etc. It is a nuisance but it is not going to be critical. The colonoscopy for instance - I too had one of these whilst they were trying to sort out exactly what might be causing my pain - your findings are entirely normal, as were mine.

And if I can say this again - please don't think this is criticism - try to stay very calm and polite and rational when you see the doctor. I know it is so very hard when it is hurting like this, but it will make it easier for the doctor to take you seriously.

Finally, you really do need to focus on managing this pain. Set other things aside - do you really need to know the cause? no! - you need this pain to be eased, that's the priority. Or at least it should be!! You know it is PN. Set aside your search for a cause, for the time being at least. Your doctor was right about that, you know. Discovering why this PN pain started is not going to make it stop. (Edited to add - and many people never do discover why their pain started. It doesn't really change the management of it...)

For immediate help - ice. Use it as much as you can - no more than 10 minutes in every hour is a good guideline. If you haven't got a cold pack in the house, use a pack of frozen peas and wrap it in a teatowel. It sounds too simple to be worth bothering with, but it really does help. For many of us, despite all the meds and modern technology, it is still our best help.

How to learn more about managing pain - this is an excellent book, it really helped me, and other people on the forum here have found it helpful too. There is also a lot of information on this website.

Please do get back to see a GP too, you need to be working with your doctor to get this under control. You can tell your GP that you've done a bit of looking around, and there is a team in London who have a particular interest in PN - there is another team in Bristol, but as you are in Kent, London is going to be more convenient for you. Dr Andrew Baranowski is the man to see, your GP can refer you to see him. You will find information about him here on this website. (If you go to see him privately, please do keep your GP informed, by the way.)

It does get better, I promise. This is a low point right now.... And you are not alone.

Huge thanks again Calluna
I have ordered the book from amazon...every thing you say and suggested makes sense..This burning bulge inside the vagina responds to nothing but lying flat and that is what is so deppressing..I can't keep lying down with huge amounts of housework piling up around me. I have severe panic attacks and nightmares about being on my own .Silly because I was on my own for twenty years. I just couldn't cope now.
I must tell you of my visit to the gynie who did my vaginal hysterectomy.
I knew the gp would not refer me back to him again as I had been three times nhs and twice private since the op.
So I emailed , twice with absolute begging letters for him to see me.
I had a call from his secretary to say he would see me a few days from then.
It was good I told him everything and said he must know someone somewhere who can put this right for me.
For the first time he said he had three other women on his books with similier symptoms (so I wasn't the only one in the world) why had he never said this before? He said a friend of his in oxford has put two right and they have never looked back....but he suggested I went through the planned gangalion impar injection and planned colonoscopy first to see what happenned there ....so been there done that...I was told that when I wanted this oxford thing set up to email his secretary for him to arrange either nhs or private. I hope this is true I don't want to disbelieve him but I have been let down so often..could write my own book. I really feel like emailing and saying go for it then we could book something nice to stay in and take two dogs with us oh that would be so nice.
Also the gangalion didn't work and there was a follow up appt for 09 may and I thought it silly to wait that long as this man is the only connection to pain management I have, so I rung his secretary and she moved the appt right forward to next Monday. I have been quite pro active with also sending a letter to the surgeon who did colonoscopy asking if there is a connection of hids findings to what I feel in the vagina alsp asking could the vagina be seen from where the scope was and was there diveticulum on the bladder or indeed pulling something down and onto the bladder ,....early days for answer I think, I did write to gp secretary yesterdaY before reading your post because the content of the letter after the cystoscopy contained information as to where the gynie wanted things to go from there but there was a wait of twelve/fourteen weeks before his secretary got that letter sent to my gp's. Naturally a lot happenned in that time and it was forgotten I have asked nicely for a copy.So I will go armed with list of questions to nice man who is my pain management I think I am right in thinking he can refer me to DR. B in London ..I know I'm jumping all over the place but I really want my life back three years is so long to be in unrelenting pain and I endorse your suggestion this is priority for sorting. Thanks again for all your help, advice, I am always hoping for suggestions because one of them might be the one aye? thanks again...oh and what apart from pain management would be the next important question ? it's ok I think I've got most things covered for Monday. Hope you all feel well today love from littlemo

So that's Monday! Oh I am pleased for you! - lets hope the gynae can sort something out for you.

I would expect that he will be looking to do something about the bulge/prolapse for you - it can be repaired. What this has to do with the PN pain that you are having, that remains to be seen..... Interesting! I did not realise that it was your gynae who had prescribed the pain meds for you, mine didn't want to know. He is the best person to do any surgical sorting out in the vagina as he knows what he did there before. Really good that you are seeing him again!

I am now wondering who is the surgeon in Oxford! And is your gynae meaning that these other women had PN pain and it was sorted out?? That would mean there is a third PN team here in the UK?! - that really would be excellent!

Re the colonoscopy - I would bet that they won't comment on connection of their findings to the bulge, that is gynae territory and they don't like treading on another doctor's toes if you follow me. They cannot see the vagina from where the scope was, I can tell you that for certain. (I was awake for my colonoscopy because I was interested basically, and it really did not hurt although it was a bit uncomfortable at times.) The scope is actually looking around inside the large bowel and they cannot see the vagina from there, there are no holes after all(!)

There will not be diverticula on the bladder. (They cannot see the bladder either, not from inside the bowel) Diverticula are sort of like tiny little pockets that form sticking out from the large bowel, almost everybody has them eventually, finding these is completely normal, so normal that very often they don't even mention them in their report. The little pockets are formed when the inside layer of the bowel sticks out through the outside layer - think of a bicycle tyre. If there is a split in the outside wall of the tyre, it would be possible for the inner tube to stick out through there - that's the sort of thing. The diverticula won't be causing your pain. Whether something is pulling or falling down onto the bladder, that is what your gynae can tell you.

I would think that the gynae can indeed refer you to Dr Baranowski in London - your GP definitely can. Referrals from other consultants don't necessarily go quicker than GP referrals, they can take longer....

I would say that your first priority now is pain management. Then sort out what is going on with this bulge/prolapse. And also think about seeing someone who specialises in Pudendal Neuralgia - that would be Dr Baranowski.

Forget about finding the cause of it all - sort out the situation you are in now. Do make sure to keep your all doctors informed of who else you are seeing, though. It is better if one doctor is co-ordinating things - make sure your gynae knows that your GP isn't your best friend right now...

And also forget about the housework!!! Do things you enjoy doing, whether it is listening to music, talking to friends on the phone, reading a book, knitting, needlepoint, whatever - plan your rests, they are so important - and plan ice sessions too. If you haven't tried ice yet, you are in for a surprise. It is a huge boost to know that this relief is there if you need it. Not the most convenient of things, but it really helps!

You will start to feel that you are back in control of things before you know it. Hang in there!

Hello Calluna
What a lovely person you are
I have to put a few minor statements I made right as I think it reads wrong ..That is so me lately ...I will have to learn how to do the quote bit as I'm now taking the harder route...that is so me also.
On Monday I have an appointment with pain management, it was the follow up usuall stuff after procedure which in this case was Gangalion Impar injection into the coccyx.
The injection failed to work ...it was considered that the nerves feeding the vaginal/colitoris area could be numbed so therefor I would have relief from unrelenting burning stabbing debilitating pain at the top of the vagina. The follow up appointment was 9th May 2011.
I thought it would be a waste of precious weeks waiting until then to mention the failure.
I was able to bring the date forward with a telephone call thus bridging the gap.
A few weeks before the injection was scheduled I had secured an appointment with the gynie who did my vaginal hysterectomy by way of emailing.
Not quite the etiquette or protocol usually required (which is referal) but after two well spaced begging emails I was granted some time with him of which I was more than grateful and a little surprised. Since the hysterectomy I have seen this highly respected, hard working extremly handsome rugby playing surgeon seven times!! The chances of having another referal from gp's who seemingly are not prepared to go the circut an eighth time was pretty slim. And as my new best friend said "Desperate people take deperate measures" I did.
During that session he examined me internally, normal position and standing, he drew a little diagram which is like a winning lottery ticket to me and although it didn't make sense to me or look like anything I could identify with I was compleatly spellbound by the words he was saying which were he has a few women patients with similier symptoms two of which he sent to Oxford and their problem was solved.
There were the two procedures I had booked which he agreed I should go through..the Gangalion and colonoscopy. He has not mentioned or considered PN in fact I have never discussed it with him either, I am understanding the contact at Oxford is in area of gynie.
Whether this makes any difference (pudendal Nerve Problem) or not I am not sure...I felt I had to make that particulaly clear as the excitment of another batch of PN experts came across very strong (naturaly so ) but, I promise with my girl guide promise and even my boy scouts promise!! that if/when I find a Pn expert that we don't already know about I will quickly get the information back saftely into this site...bless you Calluna, there are some other bits of info (not to important) that I will post in a while. It will be about my visit to a and e today at the local hospital...(accident and emergency) I am back home now but it is connected to my problem so best I post ..thanks for listening love from a very grateful little mo xxx

Hello Jeaniec
Thanks for care,how are you doing?....I have been away from the forum for some time and have so many people to catch up with...I said a few days ago I would start a new post otherwise I find myself in a position of not knowing whom to tell my latest news to, and certainly wouldn't want those, like yourself, Susan jane,...birdlife, helenlegs and so many more to think I have forgotton their kindness.
sO instead of dreibs and drabs, I shall do so.
Have just returned home froM Kings college hospital ...you can imagine exhausted and wondering if I am any closer than four years ago remains to be seen.
So, I promise to spread the news so soon...take care love from littlemoxx
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