Health Organization for Pudendal Education

Hi all.
I'm a 32 year old female living in the UK. My symptoms started about 6 weeks ago with PGAD. Aside from continual arousal I was also getting shooting pains in the clitoris and sometimes in the anus too. There was also a constant burning sensation. This was diagnosed as PGAD just over two weeks ago by Dr Goldmeier in London. At the same time I noticed a slight numbness in my left leg and foot. The arousal has calmed down a little recently and it is often possible to distract myself. However, the burning continues and I have started with lower back pain, sharp pain in both buttocks, and the numbness in my leg and foot is markedly more pronounced. The symptoms worsen on sitting and the back pain intensifies on bending.
I am having real trouble getting my GP to refer me to a PN specialist, even though to me this looks very clearly like PN. Any suggestions on how to speed up the process? I'm so anxious to begin treatment as I imagine only then might the prognosis be good.
About prognosis... could anyone give me a clearer idea of what I can reasonably hope for? I have just started a new relationship. I am really crazy about this guy. I mean *really*. But I am worried it will prove too much to ask that he accepts a gf with incontinence and sexual dysfunction. Are these avoidable? With early intervention can I retain control of these bodily functions, and orgasm normally? I really want to keep this one.
Has anyone ever heard of a case where intervention was so early that the patient was cured?
Thank you everyone.

I have a couple more questions that I'd be really grateful to hear anyone's input on. I promise to read around the site before posting anything more in the welcome centre
So, I'm currently mid application process with the Big 4 consultancy firms. I'm concerned that even if I get an offer, it will be impractical to hold down the job. Is anyone in a typical office job but able to work standing up? Are employers usually accommodating on this issue? Then again, how do you work on site with a client?... Do I need to consider a change of career plan I wonder?
And this might sound kind of stupid, but any advice on how to break the PN diagnosis to your partner?... I am terrified to tell my bf. He thinks I'm healthy.
Thank you so much everyone.

Hello Ileana and welcome to the forums.

So sorry to hear that you are having to deal with these problems. It can be really hard to cope, especially at first.

I don't think we've met anyone here who has seen Dr Goldmeier - this is him, yes? I've found a paper that he co-authored about PGAD (PSAS as he terms it) but he does not link it to PN. Which is interesting but not very helpful, so I'll shut up about that!

Some of your symptoms don't sound quite like PN - or perhaps I should say that they sound as if something else may be going on here as well. Dr Andrew Baranowski or Dr Natasha Curran would be your best choice I think, they are both based in London. You'll find their details on the homepage (red link at the top of this page).

Does your GP have any suggestions as to who else might be able to help, if he is unwilling to refer you to either of these doctors? I must say that with numbness in the leg, low back pain, and PGAD I am very surprised that he is not referring you urgently - usually with these symptoms they'd be zooming you off to neurology to check for cauda equina. Especially as you mention continence issues as well - did that predate the pain, or does it seem to be part of the same issue, to you?

I do know that some people have had horrible problems getting referred, I've been lucky in that respect as my GP is very supportive, but you probably don't want to hear that! - I wish I could suggest something useful. I'm

Hi Calluna
Thank you so much for your reply
Yes, that is Dr Goldmeier. It seems perhaps Belle67 and Violet M have met him too. He is a very nice man indeed. Anyone having trouble with PGAD in the London area should certainly try to get an appointment with him. He's very much aware PGAD can be a result of neuralgia, but has also seen many cases of purely stress-related PGAD, which is what he thought mine was initially. I'm not sure what he thinks now!
Thank you for suggesting those London doctors. I'm going to try and get my GP to refer me to Dr Baranowski. I think I will also investigate what it would cost to see Dr Greenslade privately in Bristol. I thought he only consulted on the NHS but I notice someone on the forums has seen him privately. 11 weeks is a long wait. And a long time to be prolonging nerve damage. I want rid of this PN asap!!
I hadn't heard of cauda equina. That has got me quite spooked. I will see if I can get an urgent appointment on Monday.
I don't have continence problems. I was under the impression that they were likely to develop if the PN was left untreated. I was mentioning incontinence because I was hoping to hear the odds of avoiding that particular outcome if treatment is begun early.
That's interesting that you see my symptoms as not typical of PN. May I ask, what seems atypical?
Has your message been truncated? It ends with "I'm..."
Thank you again for being in touch. As you say, it's hard to deal with!
My plan at the moment is to keep myself dosed up on Naprotec and not sit down even for a second.
Ileana

Hi ileana,
Reading that you don't have continence issues means that you don't need to worry at all about cauda equina I understand totally where Calluna was coming from. That would be ruled out anyway with an MRI scan, have you had one? just because you have mentioned back problems.
I would imagine that the non typical PM symptoms Calluna was referring to would be the back pain and leg and foot problems. Do you have numbness constantly in your leg and foot now or does it come and go? I would be interested to know exactly where the numbness is and does it get worse as in more numb at all or pain with the numbness?
Sorry so many questions. . . . Oh and one more, where is the sharp pain in your buttocks? these things are SO difficult to explain in writing so I'll tell you what I am trying to determine with that last question. I have piriformis syndrome (PS) and that is where my PN stems from (not that usual, even in acondition that is supposedly rare already)
Some symptoms of PS could be described as a sharp buttock pain but it is in a particular spot, amazingly where the piriformis muscle is . Take a look at some of the anatomical drawings on the home page to get an idea of where this muscle is and see if your buttock pain is in a similar place.
Many people do have PS because of PN, but in some cases the PN exists because of the PS and I am trying to determine if that might be you.
Don't worry either way but that could possibly explain your leg and foot numbness too.(I have them)
I wouldn't worry about incontinence it isn't a 'requirement' of PN and especially so if bi lateral symptoms as the other better side seems to be able to pick up bladder and bowel motor functions.
There are many ideas to make work life more convenient including adjustable height desks and kneeling chairs and different types of cushions. The MOST important thing to me because I have such problems with my feet and heels in particular is Fitflop shoes (here I go again ) they have just started doing proper looking shoes instead of just sandals or boots. In no way are they lovely looking but they are so good with foot and leg problems.
Don't ever think twice about posting, asking questions or just having a good old whinge, it's completely understandable and we are just glad that you have found us here.
You are right to think that a quicker solution is the best option. I think a private consultation with Dr Baranowski is around £400 and Dr Greenslade was £200 but that was 2 years ago although I doubt his costs have anywhere like doubled. It has always been the case that Dr B had the longer NHS waiting list but that may have changed (but doubt it) There is always Dr Natasha Curren in London too although I haven't ever seen any private clinics for her if you wanted to steel a march with the whole process.
Can't think of anything else I wanted to say. . . OOOh except good luck with the chap Sexual dysfunction isn't always synonymous with PN either, guess you won't know till you try or you can treat them mean(ish) and keep then keen
Take care,
Helen

Back again - no internet access for a little while, sorry about that. And yes, my message was truncated - I cannot remember what else I had written, it seems to have vanished into the ether...!

Helen has said it all! - if you don't have continence issues, you don't need to worry about cauda equina. I had understood you to have continence problems, and I am so sorry to have alarmed you unnecessarily.

Continence issues are not necessarily part of PN. Some of us have it - some of us don't. The one constant is pain/numbness in the pudendal area. Everything else is basically variations on that theme..... confusing my metaphors a bit, but I hope you understand.

I do remember that I finished my post by saying, please let us know how things go for you! - and I'll say that again right now!

And by the way, what is Naprotec? - I have never heard of it - do you find it helpful?

Thank you Helen and Calluna for your messages
Let's see if I can answer some of Helen's q's. So, the numbness is pretty much constant. It's not completely numb, but rather feels like I've been sitting on my leg for hours and the sensation is just returning... you know, the tickly phase before the pins and needles kicks in. I think it gets worse if I sit, but I'm not doing much of that at the moment so it's hard to say. It's on the left side, on the top and sole of my foot, my calf, the back of the thigh and yesterday it spread to the left half of the groin, more towards the front. The pain is mostly in the buttocks but does reach down the back of my legs too. I had a look at some anatomy pics and the pain does seem to be pretty much where he piriformis is. But the sciatic nerve is right there too and I suppose I'm much more likely to be having problems with them.
I had a full neurological assessment yesterday and the doc said everything was perfectly normal, reflexes, muscle tone, everything, and there was no cauda equina and no PN... I thought it was rather more complicated to diagnose PN than that! Should I take any comfort from his certainty?...
They did a urine test too. Protein and blood. Weird, I didn't feel like I had a UTI! I've had so many I thought I could spot them now. Eugh, so on top of the tetralysal for rosacea now I'm on trimethoprim too. My stomach is a disaster!
Naprotec is Naproxen with another drug (sorry, can't remember its name) which protects the stomach, in a separate tablet. My stomach reacts pretty badly to NSAIDs you see, so straight Naproxen would be murder. As it is I still get bad tummy pains with it.
Thank you for the well wishes regarding my new chap That side of things is pretty imminent! I suppose I'll let you know
I should be seeing Dr Goldmeier tomorrow. I'm going to see if he can refer me to Dr Greenslade or Dr Baranowski, because I'm fairly certain my medical records have 'hypochondriac' written on every page and I'm going to have no luck with the GP. Else I'll go private.
Ileana
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Whomever you get to see do be specific about the buttock pain. I have no clue if Dr Baranowski has had many potential piriformis people but Dr Greenslade certainly has (me , and if private he is cheaper ) It does sound as if your sciatic nerve could be involved with the foot and leg numbness you describe. Did the symptoms simply appear or was there any precipitating trauma even as minimal as a fall on bum?
Typical piriformis pain (The Helen Criteria ) is a band of pain across in the buttocks in the proximity of the piriformis muscle (sciatic notch sloping slightly down to greater trochanter/hip) Pressure (needs to be deep) applied to this particular area can recreate nerve pain symptoms and is often particularly tender (tender is a euphemism for really, really sore ) These guys can tell it better than I can http://www.orthopaedicsurgerynyc.com/ny ... formis.htm
If the symptoms have just appeared you will probably get excellent help and treatment from any physio who knows about this muscle, just ring in advance to inquire although many have it mentioned on their web sites. Dr C Jenner in London (private and NHS) is another option although his PN knowledge is a little more limited (he does piriformis blocks, so does Dr G) The muscle can spasm through overuse if you are sporty for instance but also if office bound or have to sit a lot. This can be dealt with fairly well by not sitting (which you are doing) and some myofascial release and (easier at first) piriformis stretches.
OOPs, husband needs feeding.
Take care
Helen

Hallo Helen,
Thank you for all the info I think that according to the Helen criteria mine is not classic piriformis pain , but I'll be sure to be very precise with the consultant when I see him.
It just appeared, the pain and numbness. I mean, it was gradual over a couple of weeks, but it wasn't preceded by any obvious trauma. The last time I fell on my bum was at least two years ago.
I didn't manage to see Dr Goldmeier yesterday so I've nothing to report really.
Oh but I did see the GP who has finally realised she's out of her depth and needs to refer me. Hurrah.
Ileana

Glad to hear about the GP. Hopefully you will make some medical progress now.
Take care
Helen