Newbie

[helenlegs 11]

Ok, your pain is in the pudendal distribution - yes? That needs to be clear. Pain/numbness, in the area reaching from the front of the vulva to the back passage.

And the pain is of neuropathic origin. Ok, that's pudendal neuralgia.

How I put it to my GP - I said something like this: I've been wondering what to call this, just a name to give it. The pain is in the pudendal area, and I've been told this is neuropathic pain, so am I right in saying that we'd call this pudendal neuralgia? He said yes, pudendal neuralgia. Which gave me a nice conversational opening to say oh good, because I have found there are several consultants with a particular interest in this condition, please could I go and see one of them? ... and so on.

This is exactly what you need to say Joy.
Thanks Calluna

[Joyh]

Thanks calluni and Helen
I`m taking all of your advice, and it`s helping, especially the ice and tramadol, thanks.

An update this end:- I originally wrote to a lady GP I `d been seeing, enclosed the info of PN, highlighted my symptoms, which were all of them, but I didn`t hear back from her.
So I moved on to the GP who said that PN would`ve been picked up on the CT scan I`d had, and was due an appointment with him tomorrow and have been dreading it!

Well...I received a letter from the lady doctor this morning, saying she`d like to discuss my letter with me by phone appointment tomorrow afternoon. (Friday)

Of course, I`m not sure if she`s in agreement that I could have PN, or she`s going to disagree with that diagnosis?
I`ll know after I speak to her tomorrow, but I feel happier dealing with her, than the other GP who said a flat No.
I`ve cancelled the appointment with him, and I`ll let you know the outcome of the phone call with the lady GP.

thanks again and hope you`re both keeping pain free
Joyx

[helenlegs 11]

Great Joy
I would try and work something like Calluna's script into the conversation if she isn't quite on side about PN at first . Hope she is, I can't think why she would want a phone call if she wasn't at least interested.
Something like. . . . . because the problems you have (burning, shooting pains, itching or whatever) can be associated with neuropathic pain, or so you had been told.
Ask does she agree?. . . . . . Then you discovered this pudendal nerve in the pelvis could cause these types of problems. . . so thought it sensible to print this information and send it to her. . . . blah blah.
I'm sure you can do better than that and I know I am being OVER, OVER cautious for you. I'm sure she will be an absolute delight and be interested in the whole problem.
Take care,
Helen

[Joyh]

Hi Helen,
I`m trying not to get too hopeful, The doctor may just be polite, because I did ask her opinion as an ending to my letter? Eeek, I may not like her opinion
Seems strange, that she`d like to discuss it though? So I do have a glimmer of hope filtering through here...
I`ve been rehearsing yours and Calluna`s scripts, just in case. They`re all great openers, thank you.
I`ll let you know how it goes.
Take care
Joyx

[blightcp]

I'll be praying for you, we all have been trough this, and the part you are in is the most activley stressfull. I'm suer other parts will be stressfull but dealing with Dr. who say No was the worst for me.
Hang in there

Carl

[calluna]

Hope it goes well tomorrow, Joy.

it is just a name really - a jolly helpful one, but just a name. Doctors do understand that we like to be able to attach a label to a condition.

You've been told it is neuropathic pain, cause unknown. Ok, I understand we don't know what's causing it, but it is neuropathic pain, and another name for that is neuralgia? And where it is - that's the pudendal area, yes? - so this would be called pudendal neuralgia, have I got that right? ... and there you are.

Best of luck, do let us know how it goes!

[Joyh]

Hi all
I`m just back from my 1st physio session with the young woman I found who deals with pelvic conditions. I may have mentioned earlier that she also works for the NHS at our local hospital.
(My phone appointment with my GP is later today)

Her findings on examination : Hypersensitive points in lower adbominal muscles, pelvic floor muscles and left gluteal muscles. There is also sensitivity to the left sacroiliac joint and L5 vertebrae.

Diagnosis: Left side sacroiliac joint disfunction together with hypersensitivity to the neuromuscular tissues in the adbominal and pelvic region.

She also believes that because pregabalin is giving me some relief, that nerve endings are firing off too.
She`s suggested acupuncture for my next session.
She found my pelvic floor wasn`t tight and didn`t find the pudendal nerve to be causing any problem.
This is good news ...right?
I`m more confused than ever, because I did have all PN symptoms, some calmer since taking pregabalin.
GP discussion next...

take care
Joyx

[Joyh]

Following on from my post above, and discussion with GP:

Yah a result!!

The GP said that it probably is pudendal neuralgia.
I then explained I`d been to physio and told her the physio`s findings,(post above)and asked her opinion after she`d heard what had been diagnosed during my treatment this morning?
She said that it could still be PN.
I`m to carry on with the physiotherapy for 1 month (and taking pregabalin) and if after 1 month there`s no improvement, she`ll refer me to one of the specialists in London

And there`s more ....I love this lady, once she heard that the physiotherapist works for the NHS at Norwich hospital, she says she`ll refer me for treatment there. Rather than me having to pay!
All of that practicing for a conversation opener wasn`t needed, but thank you all anyway.
My, Now GP, added at the end, that `we` must get this sorted sooner, rather than later to stop further damage.
She was a bit quiet when I mentioned the physio was going to treat me with acupuncture?
Any thoughts on the acupuncture? As you all know so much more about this.
Many thanks
Joyx

[rea]

Hello everyone. I'm currently trying to get a diagnosis also. My problem is I'm using up my sick days and after that I have no health insurance so I have about 60 days left. My symptoms fit PN but so far all I've been told is I have vulvodynia and had to have my uretha enlarged. So I'm racking up medical bills, unable to work, can barely sit, and wasting away. I started at 128 lbs. and now way 110. I've had my symptoms for 3 months. I contacted a doctor in Houston, TX and I live in Kentucky. The cost for getting any help is ridiculous. I'm so frustrated at the lack of knowledge by "professionals". I've had blood test and finally MRI of lumbar. My family doctor did not listen to me. We are fortunate to have a new MRI 3 Tesla but he said he couldn't order that so now I have to wait for pain management to see if they'll help. I highly doubt it though.
I'm grateful for this forum. I've found a lot of advice. Thanks so much.
Any suggestions to get pain management to listen to me?

[janetm2]

Welcome Rea,
I would print and check off your symptoms off the FAQs from the home page as well as the letter to medical professionals. There may be other stuff in the FAQs to support your case. Good luck
Janet