Newbie

[Joyh]

Hello all, I`m so relieved I`ve found this forum.

I`m in the UK and prudental neuralgia seems unheard of by our GP`s. I haven`t had a diagnosis yet but from what I`ve seen written about this condition, my symptoms tick all the boxes.
Having had chronic pain for four months, scans etc showing all ok, I `ve been told it`s unexplained neuropathic pain.
I`ve been taking pregabalin, which has helped a lot.
I`d rather get to the cause though and move on with treatment to heal or help the damaged nerve.
The problem is that there doesn`t seem much information in the UK or where and who to go to next?

I`ve written to my GP, included the information I`ve found and highlighted my symptoms, which were all of them for a woman. Added a covering letter and I`m delivering it today.
Hopefully she`ll get back to me and know where to send me next to perhaps get a firm diagnosis, but until then I wondered if anyone here could point me in the right direction?
Is there anything else that I should be doing as I read that the sooner this is treated -the better.
I believe that after pregabalin, a therapist to treat the damaged nerve is next on my list, but finding a therapist knowledgeable in prudental neuralgia is going to be like finding hens teeth where I live -in rural UK.
What questions do I need to ask? I`d hate for a therapist to make my symptoms worse.

Thank you so much in advance for anyone replying, I really do appreciate it.
take care yourselves.
Joy

[blightcp]

There are quite a few mwmbwres from the UK, i'm sure they can help.

One thing about physical therapy, do not let them do kegels, it just put pressure on the nerve, it almost always makes it worst. I dont know if they call them the sme thing in the UK so the link below decribes them.
http://physicaltherapy.about.com/od/exe ... Kegels.htm

The first PT i went to had me do them and it just made it consistently worse.

[helenlegs 11]

Hi Joy,
I replied to you already on Health Unlocked but thought I'd say hi here too. (this is where I live , sad I know ) Where are you in the UK? I'm in Northumberland so have had to travel for any treatment. I went to see Dr Greenslade in Bristol (easy jet) and have to say I would have no problem recommending him although I heard recently that there is almost a year wait on the NHS. It costs about £200 private (well it did 2 years ago) but I'm pretty sure Dr Baranowski is more the £400 mark. That was all a while ago and would have to be double checked as things hopefully have changed time wise anyway. How we need more PN doctors over here. Well everywhere tbh.
I have heard that Dr De Mello is very good too although I think that when clinicians have gone 'off piste' as these have had to, they are all great in my book.
Here is a list of physio's http://www.pelvicphysiotherapy.com/manual-therapists. They are more geared up for pelvic floor problems it seems; great for many no good for me unfortunately, as mine is higher up (piriformis). Always worth an physio evaluation, even if all you achieve is ruling things out. You may score and get it sorted though. It seems to depend a good deal on how the problem started??
You could try a combo of duloxetine (cymbalta) with the pregabalin perhaps. It is a better solution than pregabalin alone. I don't have any problems with cymbalta but because it's not being taken for depression it's usually not needed in any higher dose than the lowest. If it works well, it would normally make sense to up the dose to work even better but that is not the case apparently with this drug as a pain treatment.
Let us know how you progress but if you have any more questions, just ask. The home pages are crammed with info too.
Glad you have found us here
Helen

[calluna]

Hi Joy

I'm in the UK too, in West Wiltshire. I would echo what Helen says, your best bet now will be to go and see a consultant who has an interest in PN. My GP has been nothing but helpful and supportive - when I told him I had found a consultant with an interest in pudendal neuropathy/neuralgia and please could I go and see him, he said yes immediately and sent me off with one of those forms with a password and a phone number to ring. Half an hour later I had an appointment booked to see Dr Greenslade, and that's when things started to turn around for me.

Whether physio will help - really depends on why you have PN, ie what started it. I've never heard of physio actually treating a damaged nerve, though they can help a lot with muscular problems, and lots of people with PN have muscle spasms and/or an overly tight pelvic floor. Not me, though.

Btw I think you do have a diagnosis, you've been told you've got neuropathic pain - well, neuropathic pain in the pudendal distribution = pudendal neuropathy/neuralgia = PN.

I too had some good help from pregabalin, once we got it up to the right dosage it was like a magic pill. Other than that, I'd say my best help was CBT, this was amazingly helpful with pain management, pulled it all together basically.

You'll find lots of info on this site, as Helen says. Do let us know how things go.

[Joyh]

Hi Helen, calluna and blightcp

thank you so much for replying and your help.
Wow, I`ve had a bad pain flare-up this week and spoke too soon about pregabalin helping? I`ve increased the dose to 300mg over the last 3 days - from 200mg. I take paracetamol and diclofenac too, but this combination isn`t helping with pain relief much at all.
I tried Tramadol a few days ago, but the combination with Pregabalin sent me to sleep for hours, and I`m wary to try it again.

Have either of you any suggestions for pain relief until the higher dose of Pregabalin works please?

The pain`s been chronic again today, and this isn`t fair on my husband- as we once again had to cancel a day out.
He keeps re-assuring me that it`s ok, but I`m feeling so guilty as this is spoiling his life to.

I hope to speak to my GP tomorrow to ask about better pain relief, and I`ll mention Cymbalta- thank you.
I`m thinking that a muscle relaxant of some kind may help- does Cymbalta help like that?
I live in rural North Norfolk, on the coast, so I`ll have to travel to see Dr Greenslade, Easy Jet seems a good option, Helen.
I`ll pay privately too -just to get rid of this pain.
Does Dr Greenslade diagnose PN or do I need a diagnosis before I see him?
Perhaps a silly question- but I really don`t know.
The physio`s you kindly gave a link to Helen, are sadly too far for me to see, especially on a regular basis but thank you.
The young woman I found (by chance) is only 1 hour away from where we live. I spoke to her on the phone and she seemed to know exactly what I was talking about, regarding PN.
Terrified that she may make my symptoms worse, I googled everything I could find about PN physiotherapy and her explanation of treatment sounded spot on, to what I`d read.
I`m making an appointment to see her (hopefully) next Friday. If she could just relax some muscles or something, it may help.

May I ask if after treatment with Dr Greensdale, you`re both much better?
Or still needing pain relief?

Thank you soo much again and sorry for all my questions. This is a great site isn`t it?
Hope to hear from you soon.
Joyx

[blightcp]

Hi Helen, calluna and blightcp

Have either of you any suggestions for pain relief until the higher dose of Pregabalin works please?
Joyx

I use a topical cream that works almost instantly but its a compuded medicine, i posted the actual formula in the pain managment section. It would deliver Pregabalin to the nreves directly without the side effect of taking them internally.

I have very severe side effects to Pregabalin, but i can use the topical without side effects.

I`m thinking that a muscle relaxant of some kind may help- does Cymbalta help like that?
Joyx

I use flexeral when it gets bad and it seems to help.

The young woman I found (by chance) is only 1 hour away from where we live. I spoke to her on the phone and she seemed to know exactly what I was talking about, regarding PN.
Terrified that she may make my symptoms worse, I googled everything I could find about PN physiotherapy and her explanation of treatment sounded spot on, to what I`d read.
I`m making an appointment to see her (hopefully) next Friday. If she could just relax some muscles or something, it may help.
Joyx

That is exactly what i would suggest, try just to loosen up the musles around th PN to start and see if it helps.

[Joyh]

Thanks blightcp
I`ve written your suggestions down to mention to my GP, who I hope to see tomorrow.

I`ve been fine on the Pregabalin, hardly any side effects, managed to sit for the 1st time in weeks and had managable pain. I thought `good`, this is working!
Then last Wednesday, the pain flared up to horrendous again.
Nothing has given me pain relief and I`ve lived for bedtime.
Now that I`ve increased the dosage of Pregabalin, hopefully it will work again.
I`m glad I`m on the right track with the physio lady, I`ll be sure she relaxes the muscles and not tightens them.....thanks for the tip.

Joy

[helenlegs 11]

Good luck for the GP sesh tomorrow, I'm sure you won't need it (luck that is )
Dr Greenslade did diagnose my pelvic nerve problems, although I did manage to see Dr Filler (nerosurgeon from USA) in London first.
That was only because it was just me and Google in those dark days and Dr Filler seemed to be the only person who understood the pelvic nerve situation. Thankfully, after examining me Dr G agreed with Dr Filler (HOORAY)
As for my treatments with Dr Greenslade, they were more 'additionaly' diagnostic than curative. That had nothing to do with Dr G's inability, just to do with my situation. I'm sure Calluna would say the same, although you didn't have treatment did you Calluna? It was more like, don't even bother passing GO! just come and have the op !!
The other thing you could try is cognitive therapies, along side conservative treatments like physio. Ask to be referred to a pain clinic for 'brain training' (CBT and mindfulness) it may help to turn the pain 'volume' down. Of course this should always just run alongside regular medical treatments. It is no replacement where problematic nerves are concerned. It is a good plan just to get all the help you can tbh.
let us know how you get on.
Take care,
Helen

[blightcp]

I get flareups too, they can be up to a day after i try something. I think we all know what you mean by "wait untill bed time".

As for pain managment have you thought of trying a TENS unit? Here in the us its free to try for a week.

I've even had success with ti stoping flare ups as they are comming on, i've had it for five days now and it's still working like flipping a switch with the pain. I pray it stays that way.

I made another post about it and i fixed the image. You might want to print it so they can "see" what actually controlls those areas.

[Joyh]

Hi thanks again for replying and your help Helen and blightcp.....calluna too.
I`m taking all suggestions on board and will use them.

I think this is becoming my new home, like you Helen, but after the `Google dark days` as you described, it`s such a relief to be able to talk to people who know about PN on a first hand basis.
And know where to go next in the UK.

I first saw a lady GP due to the nature of my symptoms. As I said further up the thread, I sent her a print out of PN, highlighted my symptoms which were all of them, asked her opinion and would she get back to me?
She didn`t!
So I made an appointment with my usual GP today, who I trust. I had a luckily, benign brain cyst a few years ago, and this GP saw me all the way up to - and recovering time after the brain surgery I needed.
I thought that he`s the man I need now.

Well it all went downhill after he phoned this morning.
I suggested PN to him ..and he went quiet! Then he asked if the pain was in my neck????
I explained it was terrible pain in my pelvic area, down to my genitals - his reply was that my recent CT and deep pelvic scans would have picked Prudential Neuralgia up.
He said that the hospital would`ve looked out for that and many other things.
Now I`m confused!!
Although I trust this GP, I trust you guys and your experience more over this....as the pain in the neck reply just goes to show- he had no idea what I was talking about.
He had phoned, but has made a face to face appointment for Friday.....I can see a battle ahead as he`s fixed on the idea that a CT scan would`ve shown PN.
Basically, he`s pulled the rug out from under me- am I chasing the wrong diagnosis, yet I have every symptom of PN?

He did say that my intended Physio shouldn`t do any harm.
So I booked that for Friday too.
I asked the GP for a muscle relaxant, he didn`t think it a good idea as I`m taking tramadadol??
I`m not!!
Just the once and it sent me to sleep for hours one morning.
After explaining, he`s given me diazepan to take till I see him on Fri.

Any,any advice on educating my GP, without alienating him ( cos I will, if I`m not careful lol) would be really appreciated.

I wondered if I`m still posting in the right place- or should I take this over to the UK forum?
I`d like to put the history of when I think this started and will try to figure out the signature bit.
I know and realise, you`ve all got your own battles with PN and wanted to add a massive thanks for your kindness and time in helping me.
Hope to hear from you soon and sorry this is such a long post.
Joy