New and need help finding a specialist

[chillijava]

hi
i am sure i have some kind of pne and i just keep getting the run around from my gp and he wont take me seriously, i am in agony and have been for 6 months, i would like to see a specialist and dont know where or who to see, please can anyone recommend someone for me, i live in nottingham but dont care where they are based as i cant go on much longer

andrea

[helenlegs 11]

Hi Andrea and welcome,
It is very difficult getting someone who does recognise PN, well I guess I don't need to tell you that. . . Have you looked at the home pages? there are a list (not that long tho') of Dr's who do understand the problem. I suppose Dr De Mello in Manchester is closest to you, his details are there anyway. He has a good reputation, studied with Professor Robert in Nantes, France. Otherwise there is Dr's Baranowski and Curren in London or Dr Greenslade in Bristol.
If you print the symptoms list off on the home page and maybe tick your own symptoms off the list that match, your GP may recognise the similarities and take your problems more seriously. You will know better than anyone if they will be open to this approach. If they aren't it is best to find someone else as soon as possible in my opinion.
In the meantime you could try the physio list here http://www.pelvicphysiotherapy.com/manual-therapists There is one listed in Nottingham .
The physio's do tend to specialise in pelvic floor problems, which many PN'ers do suffer from (not me) If that is your problem, often a few physio sessions can sort it out. Hope so anyway.
What medication do you have for the problems you have if any btw?
Take care,
Helen

[Alan1646]

I had to struggle to get a gp referral to an appropriate specialist, but now understand that I had to go through a "work up" first in any case to eliminate other conditions. The "work up" included seeing a colo-rectal specialist, having an mri, prostate specialist and tests , seeing a spinal surgeon, having a range of blood tests, etc etc.
In the end when I did see a Pudendal specialist I had all the injections to no avail and now, unfortunately, am no better off than when I started, except that I have a diagnosis.Medication helps in only a limited way and I don't have a normal life in that sitting for long is painful. I have the option of surgery but there is a risk of making it worse, and I am not prepared to take that risk and lose what quality of life I have left.

[chillijava]

thanks for your replies, i have seen 2 gynae's both of whom cant see anything and i am now seeing a third a mr david nunns who looks like he might know something about pn and he does also run a pain clinic.
i am not really on anymeds at the moment only pararcetamol and the odd ibruphen (as it upsets my stomach), i do have some lidocaine gel but when i put it just inside my vagina the pain having to touch the area makes it much worse and the burning pain is more intense with feelings like i want to wee all the time.
i cannot tolerate any type of anti depressants or things like gabapentin etc, i also have fms and so am more sensitive to meds, i am so very depressed at the moment i just want to cry all the time and cant see any point in carrying on

[Alan1646]

Don't give up hope, the human body does have the capacity to repair itself: that is my hope - although it hasn't happened yet- and also in the future there are likely to be new drugs for nerve pain.
Have you discussed medication with your GP? Have you tried a muscle relaxant? Some people find these helpful.
Things can get better-hold on to that thought.

[helenlegs 11]

Hope this new gynae is PN aware too Andrea. Please let us know if you do get somewhere with that. When is your appointment? I would still see if you can find any help with physiotherapy if possible. Another saviour for many is ice. Maybe try that for pain, I know it helps such a lot
Take care and hang on in there,
Helen

[Painful Man]

Dear Chillijava

You have my complete sympathy, and empathy. If you cannot sit without pain, then normal life ceases. I've been with this condition for over 2 1/2 years now (more on that later). The first thing I would say, agreeing with others, is get an understanding and open-minded GP. This is no problem to have without that basic level of support. I fear though, just as Alan commented, that they will put you through all the usual eliminatory tests (bladder, prostate etc). I cannot criticise the GP for doing that as these were tests for much more common conditions. I can criticise the lack of interest or support shown me, and I put up with that for 2 years!

I think it is important to get someone in your health authority to back the diagnosis. I was diagnosed by a physiopherapist to whom I was sent after the urologists had finished with me, and not by a GP/Doctor/Consultant. Based on my symptoms she got to it pretty quickly (other things having been ruled out, of course), she read the typical symptoms to me from Wikipedia (yes, it's amazing, they do that now), and I just said that's my case. She then referred me to the local pain clinic, who accepted her diagnosis.

I resisted medication for more than 2 years, just made special cushions. However, when the time came that I just could not sit anymore on anything I accepted that I had to take something. I went straight for Pregabilin/Lyrica which has generally good reports on this site, and is supposed to be more agreeable than Gaberpentin. Well, it doesn't cure you, but I have been able to sit for much longer on 'selected' items of furniture. There are some side-effects, but it has meant some semblance of more normal life.

Hope this is of some help
All the best
P_M

[chillijava]

hi
thanks for all your replies, sorry i havent been back sooner but i have been really under the weather, new symptoms are popping up all the time like i now cannot feel it very much when i poop, i know i need to go but when i go it now feels quite numb and also i have been having numbness in my buttocks.
seeing the doc at the hospital tuesday so not long to wait.
could anyone tell me if i have to have surgery for pne what type of doctor do i see, is it a neurosurgeon?
andrea

[helenlegs 11]

Please don't go and see a neurosurgeon Andrea. I have made that mistake and have been misdiagnosed with spinal issues ( I did have a back problem but that was fixed 10 years ago) The trouble is that once an acceptable diagnosis is on your records a more unusual one like PN or any pelvic nerve pain tbh can then be looked on with some doubt. I know that I have now been diagnosed with pelvic nerve problems my GP still won't accept that I don't have a back problem (at least I think that's her reason for being so uncooperative)
Have a look on the home pages please, there is absolutely no point in going to see anyone who isn't PN aware, they will just be snookered and you could end up with the 'mad tag' They don't have a clue what is wrong so there mustn't be anything much, hey presto your a malingerer or mad (or both )
Best to go to the best, you will find them on the home pages
Take care,
the mad malingerer

[chillijava]

i am currently enquiring about going to see dr greenslade, does he diagnose pudendal problems as well as treat them, i go to see yet another gynae in a few days and i will ask for a letter of referal, anything to stop the constant burning pain

andrea