hi advice needed for getting an appointment

[mandymand]

hi, i have just come across this site, and i have been suffering with all these symptoms for the last 3 years, burning,throbbing, electric shock pains in the left side of my vagina all the time but mainly when sitting or standing for too long,this uncomfortable sexual arousal feeling wiv no thoughts of sex that goes on for weeks and weeks at a time that has drove me almost crazy, very painful orgasms, all of the bladder symptoms mentioned, i've seen so many people about this and had many tests over the last 3 years and am just being treated for the pain with pills that really don't do much to stop the suffering as no one knows why i'm in all this pain. i'm now total shocked at reading this website, i have hypermobilty in all my joints and have been told thats i trap nerves when i over bend my joints and have had sciatica pains in the left side too, but no one ever come up with the fact that it might not just be my sciatic nevre thats causing me problems.
anyway i'm pretty sure this maybe what i have, and i at least want to be tested for it, all i want to know is could i just make an appointment with one of these dr's from london without going to my g.p first? as none of them have been much help and have pretty much told me it's all in my head,and i fear they will will not take much notice of me if i tell them i've found this on the net,as i know most of them hate you doing that.i'd rather just see one of these doctors without going through my g.p. i'm more than willing to pay for this appointment myself if it means i'll be closer to an answer to see if this is what i have.
has anyone else done this i live in essex so a london one would be the closest for me, thanks for any help, i can't believe none of the doctors i've seen even thought it could be this.
thanks mandy x

[Lernica]

Mandy,

Welcome to HOPE. You certainly have many of the symptoms that many of us have and I am glad that you finally found this site. I'm sorry for all you've been through and the run around that you have been given in the medical profession. Unfortunately PN is still a very little known condition despite its debilitating effects on those who suffer from it.

Since I don't live in England I cannot answer your questions about getting an appointment with a PN specialist. However, if you have trouble booking one yourself and need your GP's referral, you could take this information sheet to your GP which explains PN very well. Perhaps you could highlight your symptoms on the sheet to show to him. http://www.pudendalhope.info/forum/view ... ?f=3&t=953.

Good luck and please keep us in touch with your progress. Finally you know that you are not alone!

[calluna]

Hi Mandy, and welcome!

I am sure that you could make an appointment to see Dr Baranowski privately in London. (Dr Baranowski does the diagnostics, Prof Carlstedt does the surgery) They do usually expect a GP letter, though. Perhaps if you call and speak to Dr B's secretary, she could advise you further about this, and about any information that it would be helpful for you to bring with you.

I really would urge you to talk to your GP, though, even if it is just to tell her that you are going to see Dr B privately. They tend not to like people 'going behind their back' sometimes, and you do want to keep your GP on side if you possibly can. GPs are usually happy to have an informed patient, and I am willing to bet that somewhere in your GP's notes, she has already written Pudendal Neuralgia. PN is, after all, a symptom - not a diagnosis as such. Has anyone mentioned PN to you, as a symptom?

My GP was not aware that there were any consultants with a special interest in PN. When I told him that I had discovered that I had discovered that a pain management consultant in Bristol (which is near to me) had a special interest in PN, and that I'd really like to go and see him, he was quite happy to refer me and said that at least we would get a good summary of the situation even if we did not get any additional help.

What medications do they have you on at the moment?

By the way, I've discovered (quite by accident) that tramadol suppresses the hyperarousal, this is a symptom that I find very difficult to cope with, very very freaky and crazy-making. It is so good to have found something that makes it go away, it takes about 30 minutes to go from when I take the capsule. I probably ought to experiment to discover the minimum dose needed to do the trick, but I haven't done this yet, I just make sure that I take it on time and then I don't get this horrible symptom.

Anyway maybe this might help you too? Just a thought. I am on the slow release sort, on advice from the pain clinic, it is apparently a lot easier to stop taking this than the ordinary stuff.

[helenlegs 11]

Hi Mandy,
Glad you have found this site at last, it makes such a difference just knowing there are people here who will help and do understand.
It sounds like you have a similar GP situation to me, no help what so ever. Even when I had paid out privately and got a proper diagnosis my main GP was almost obstructive in referring me through the NHS to see Dr Greenslade. Water under the bridge now, but like you I am very reluctant to have to go to see her.
However your health and wellbeing are the more important issues and I would try to start with a clean slate with them as you will need their help unless you want to spend an absolute fortune. Take the letter Lernice suggested, you never know maybe your GP will take an interest as it will be a learning curve for both patient and Dr. At least give them the opportunity to help you,then if they don't, change practices.
Start the ball rolling with a private appointment first perhaps, I have been told in the past that Dr Baranowski's costs are more than double that of Dr Greenslade at Bristol (£200) all second hand info tho' sorry. Calluna's suggestion of ringing Dr B's sectretary is the best way to proceed BUT you will need your own GP's referral if you want to transfere to NHS for treatment.
I hope you get the right help soon, good luck and welcome to the club.
Helen

[mandymand]

thanks for all the advice guys, i guess i could print out this stuff and try my g.p again, it's just because i've had a few bouts of very bad depression in the past since this has all happened,they think that it's my depression that is causing all the pain,they won't believe that i was really happy b4 all this started, the nurse at the pain clinic told me it's all in my mind as the mri scan was clear.i've just seen so many people and all of them can't find anything wrong so i guess that's why they have come up with that conclusion, i even started to believed it myself until i come across all this.
no one has ever mentioned pudendal neuralgia to me.
i take 20 mg of anitriptyline for the pain, 45 mg mirtazapine for depression and i take have co-codamol the 30/500 ones i have been to the pain clinic but the dr just said i just needed to do some pelvic floors and i'd be fine, which i have and did nothing.
it is really this arousal thing that is really getting to me at the moment, i have told the dr about this,but they just say it's stress.i will ask about the tramadol not sure what i can take with my other drugs.
i do just want to get tested for this at the ever least.
what happened when you went to see the consultant? did you just tell his all your symptoms and he diagnosed it, or did you have the blocks to find out if you had this?
also i live about 30 -40 miles out side of London can i still get referred to somewhere so for away? i really don't know much about all this stuff, i guess that's why i was thinking of just doing it privately.
i'm so greatful for everyones help, it has made me feel a little happier that there could be another answer.
thanks mandy xx

[mandymand]

thanks helenlegs11,
for your advice you have all been a great help,sorry to hear you have been messed around too, i guess feel a bit uneasy about telling the dr something i've found on the net, as they have already made up their minds that there is not much wrong apart from depression,i'm just worried they are going to think i'm a complete hypochondriac taking this in,but i guess there is no harm trying, if they say no then i will have to go privately as i just can't go on suffering like this, as i'm sure none of us can
it's good to hear that others have found answers and relief, i'm so pleased for you all, and it is so lovely that you are here to help others and give advice, i guess for me as this has been going on for so long i just want to get to a pn consltant to at least see if this could be my problem.
thanks everyone mandy x

[helenlegs 11]

Hi again,
I have been referred to Bristol (Dr G) from Northumberland so distance will not make too much difference apart from your own travel costs.
There are quite a few people who have been told that it is all in their head Mandy. It will be nice when you can 'prove' that yours isn't but the main thing is to get a diagnosis and then treatment.
For me, because I hadn't found this site and didn't know that there were any British Dr's who ac=tually knew anything about pelvic nerve pain, my first diagnosis was from Dr Filler who holds an infrequent clinic in Harley St, London.
One of the best things with a consultation is talking to someone at last who knows what you are talking about. Who ever that consultant is (in your case) you will get a written report and diagnosis that you can take to your GP. Any injections (steroid/botox) are diagnostic as well as treatment (sometimes a cure with botox). With both Dr Filler and Dr Greenslade I had a long symptoms 'chat' and then an examination. When you do get to that stage, write your symptoms down and give as many clues as you can. If you have had spinal MRI's take them along and the consultant can rule out any disc entrapment causing your sciatica.
Take a look at piriformis syndrome too btw that could be the reason for your sciatica. I have PS that I would say caused my PN but many people have it the other way around and in those cases the PS can be treated so much easier.
Helen

[mandymand]

thanks, i honestly think this all could be nerve pain, i forgot to mention that my left hip gets stuck outwards sometimes and i can't walk on it,and that i have to pull it back in place again myself, i think thats when i maybe i trap all these nerves, i will look at p.s too i definitely have no disk problems.
i'm wondering if it would be quicker to pay to see the guy in london then if he thinks it's p.n then go back to my g.p and see if i can be referred for treatment that way, it would look better for me if i have a consultant backing up my claims, or maybe go to the g.p and tell them i'm paying to see this consultant and ask if that if vthe consultant confirms p.n.e will the n.h.s refer me then? i'm just trying to think of the quickest way as i have read others on here getting referred and then having to appeal it if it's refused which means yet more waiting around, just want to get the ball rolling as soon as i can.i will contact his private secretary for advice as to what i should do for the best.
i will definitely write all my symptoms down as i've have 18 out of the 25 on here, so i might just print all the symptoms out and tick the ones i have as i could never remeber them all otherwise.i really don't get how g.p's don't believe any of this, when there are top consultants in london that deal with this, it's crazy.
i will keep you all posted with what happens, as it may all help others late on.
thanks so much helen for your help,just want to do as much as i can to prove to the g.p i'm not a complete headcase xxx

[carla10]

Hi Mandy,

Sorry to hear that you have this painful condition, I have most of your symptoms, some of them have settled with time or the medications. I saw Dr Baranwski last year and it was not a problem to get a referral from my GP. Dont be scared PN is manageable

Take care
I sent you PM

[Mod5]

I hadn't realised the cost differential between Dr Greenslade and Dr Baranowski... I have gone through the NHS all the way.

Dr Greenslade is really nice, very easy to talk to. I too had a long 'symptoms' discussion. He did not examine me, my case is a bit unusual and there is no doubt about the diagnosis, and as he said, I will be examined by the Mr Dixon (surgeon) when the appointment comes through. No tests either. And he did not think that nerve blocks would be likely to help me, so we are not going that route.

I do sympathise with you about the 'its all in your head' bit. Lots of us have had this. I have been lucky and encountered mostly sympathetic people all along the line - I wish it could be this straightforward for everyone, it certainly ought to be!

With regard to depression I have been seeing a psychologist at my GP surgery, she has also helped me a lot with pain management, the CBT sessions with her have been the thing that has helped me most with the pain - apart from lifestyle changes, of course. If you get the chance to do a CBT course, please take it - it helped me a lot, maybe it would help you too.

If you are already taking amitriptyline, then they have recognised your condition as being neurogenic pain, ie originating from a nerve. I don't know what dosage you are on?

Quite a lot of us have had a degree of relief with this drug. Usually it is combined with an anticonvulsant for best results - the first one to try is usually gabapentin, after that pregabalin. One thing to bear in mind is that amitriptyline does not play too well with tramadol. At the dose I was taking, my GP was quite happy for me to be on both. But it does depend.

With the hyperarousal, I did tell Dr G that I found the tramadol to be helpful, I am not certain about this but I did get the impression that this was not news to him.

Anyway! I would suggest that you book to see Dr Baranowski privately, and then go to see your GP to tell him/her that you have heard from a friend that there is a consultant in London with a particular interest in Pudendal Neuralgia, that you want to see him, and that you've decided to go privately at first. I would not ask about nhs referrals for later on, this just gives the GP the opportunity to say no! - cross that bridge when you come to it. Once Dr B has written to your GP with a diagnosis and an assessment of your situation, things should be very different. And then you can explain to your GP that you would really like to go back to the NHS again, as it is expensive etc etc.

Best of luck, please let us know how you get on!

Calluna/Mod5