New and need help finding a specialist

[chillijava]

well just got back from gp who has done the referral for me but who was very sceptical about my problem, he seemed to think that it was funny that i couldnt sit down and also said maybe there isnt an explanation for my problems and that i would have to come to terms with it, i said thats fine but at this moment i still have options to explore and i wont settle until i have done this.
maybe its not a pn problem but i want to know!

andrea

[helenlegs 11]

Well at least you are being referred. The GP may not have heard of PN and be a bit sceptical but that doesn't matter for now. The fact that you have taken the next step to someone who does have that knowledge is the most important thing.
If you have seen a post I started recently you will know that my GP is still not on board after 4 + years with the pelvic nerve entrapments I have, even though she has all of Dr Greenslades medical reports.
It might be a good idea to mention that your GP has no understanding of the problem to Dr G when you see him, he may add a little extra explanation to his report then, assuming that he does diagnose PN of course.
Good luck
Helen

[Painful Man]

Dear All

So a GP thought it was funny that a PN sufferer couldn't sit down. Outrageous, they just don't get it. My ex-GP when he decided that he couldn't diagnose my condition just said "I throw in the towel", referred me on to the urologists, and ever after when I mentioned that I was still waiting for my local pain clinic to contact me and I performed my antics with pieces of foam so I could sit during the consultation...he would just give me a bored withering look. Never once "How are you coping if you can't sit?" or "Try such and such orthopaedic cushion etc".

Well, I have come to the conclusion that this condition (of not being able to sit without pain) poses a cognitive problem for most people, including GPs and consultants. Not being able to sit down sounds a bit comical. "Oh, he sat on a wasps' nest, and now he can't sit down! HA HA HA". Alternatively, you might be the victim of a practical joke, in which you become the central object in an absurd scenario that serves to amuse others. So why is this I have asked myself.

Personally I have always found this problem very difficult to talk about to most people. Part of that is, I believe, because the condition does not have a name that is commonly recognised in our society. But secondly and more importantly, I think the difficulty in being taken seriously derives from popular beliefs about what physical injury or disability is. Understanding of injury or disability is fundamentally linked to the presence of visible evidence (e.g. limb in plaster), or especially an inability to walk or stand and therefore necessarily SITTING. Let's face it most people who are very ill or old and frail, CAN STILL SIT. So the notion that someone who says they CANNOT SIT is actually injured and has a disability somehow IN REVERSE, is beyond a lot of people. We know that this condition can drive us nuts and make a normal life, as before, impossible. Getting this across I have always found difficult. Fortunately, there are a few medical professionals that seem to have got their heads round it.

Yes, I can sit much more now, but I live in the perpetual fog of medication and side-effects. It's a trade-off.

Regarding GPs, I changed mine. First, I got all my medical records just so my Medical Centre knew I might mean trouble. Then I changed GP, without expecting any wonders, but it was still breath of fresh air and much more helpful. Try a GP who's younger, someone who still wants to learn and likes a challenge. Avoid the ones who are just looking forward to their comfortable retirements!

Perhaps the 'Laughing GPs' should try doing their jobs for a couple of years without sitting. Just an experiment, of course. It might change their attitude.

Comfortable sitting to all

P_M

[helenlegs 11]

All very good and relevant points P_M. Thanks.
I think the idea of going to a younger Dr, who isn't usually stuck in their ways is a good plan if necessary.
I had such a lovely locum for a while as my normal GP was on 6 months sick leave. She was an absolute breath of fresh air and I did actually get somewhere with her, I think she was newly qualified.
My nephews girlfriend has been a GP for a year now and gets so frustrated however within the confines of the NHS so I suppose that needs to be taken into context too. Her patients have told her that she is very thorough and are amazed (and pleased of course) at that. Really that's what they should all be like. How much do they get paid these days? There is absolutely no excuse for finding any condition funny tho', whether that is funny ha ha or funny peculiar as in (almost) unbelievable. I do hope that one day these particular GP's do find out just how wrong they are.
More agitated than usual as I have a 'show down' I mean appointment with mine on Wednesday
take care.
Helen.

[chillijava]

great comments by you both, this however is the second surgery i have been to in the past few years. because i do have lots of issues they loose interest and think i am nuerotic and that evrything is psychosomatic as my current gp told me. he seemed really nice at first but i now get the feeling he doesnt want to see me and i dread going.
what really annoys me is that i am in constant pain now with the burning vulval and anal area and he has never once asked me if i need any pain relief, he did offer me amitryptaline or pregablin but i cant tolerate these meds and because i cant i am not offered anything else and just left in pain to manage the best i can, an animal wouldnt be left like this
good luck on wednesday helen

hugs
andrea

[chillijava]

hi all
just wondering how everyone is doing and still awaiting my consult with dr greenslade, 4 weeks and counting
andrea

[helenlegs 11]

Best not to ask Andrea! but then again I am jinxed
I have decided that my problem is that I can't be harsh when the chips are down, but only when it comes to me. I can do it without a problem when it is for other people, especially those who matter to me. No one would be able to get anything over me or them then!
I will have to recruit my husband to get 'mean' with the system with me. He's quite good at that
4 weeks will whoosh by.
Take care,
Helen

[peaches]

Hi there everyone. Not been on the forum for a while, but most of you know that I am a veteran of PN. I just wanted to echo the comments about the GP.s Your right Helen, they do get paid a lot, and for what. I had trouble getting my GP on side at first, but he did refer me in the end to Dr Greenslade back in Oct 2009. It was the best thing I did. He is a lovely man and you come away feeling in heaven because here is someone that not only take you seriously, but can talk to you about PN.

I have been for the last 4 month's working as a care assistant in a local residential home after being made redundant from office work (which I did for 37 year). My previous company was extremely supportive of my diagnosis of PN and purchased a height adjustable desk and chair for me, which I now have purchased from them and have at home. I long to get back into an office, but feel these problems will go against me as not many companies wants to take on the problem employee!!

I was OK at first with the current job, however I'm starting to have flare ups again and have also started to get pains and weakness down my right leg. (PN is on my right side). Can sciatica be associated with PN. There is lots of bending and some lifting (which there shouldn't be in a residential home) involved in my role and I'm in a dilemma as to whether I should give this up for the sake of my pudendal nerve, but I do love it. Tried asking the GP but all he suggested was that he ups my Lyrica. But I don't feel that is solving the problem, just masking it. Can anyone make any suggestions for me, I'm feeling very sad at the moment?

Good luck with the tribunal Helen, I know you can do it and have it in you to give them your worst!

Andrea - good luck too with your appointment with Mr G. I know you are in safe hands there and he will treat you with respect. My mother also has Alzheimers and still live in her own home, so realise on me - so I can empathise with you a lot here.

Love to everyone - keep strong

[Poppy]

I went to Dr de Mello in Manchester and got a diagnosis right away. Came home for a standard pre booked appt with a local gynae only to find that he knew quite a bit about PN (not as much as Dr de \Mello) and had a physiotherapist at our local hospital who knows how to relax the pelvic floor which is essential with PN. Dr de Mello is hoping to do a guided nerve block in November IF they have got the funding for the new scanner but thanks to a wonderful osteopath I found I'm hoping I won't need it.

[helenlegs 11]

Lovely to hear from you Peaches.
PN is often associated with piriformis problems and because the sciatic nerve runs under (usually) that muscle some people do have sciatica as a result of PN. It has to be added that a scan would rule out any lumbar spine problems however, and therefore very worthwhile as that is the 'usual' pathology associated with sciatica.
The normal clinical 'tests' to check for a spinal problem are forward, backward and side flexation. Just bending to touch toes bend back and sideways. this shouldn't induce any in take of breath type nerve pain that we know so well
A straight leg raise is the other test. It should be able to be done without pain again of course, although for me, just because my pelvic problems make my legs feel so heavy, I can only do this on one side. Nothing to do with pain, just too heavy to lift.
If you 'pass' these tests any sciatica would be more likely to be from pelvic origin. (MRI would be the best test of course) Getting a neurologist to understand that it could be a pelvic issue may be a difficult task even if all of the spinal stuff is clear, although you do have a PN diagnosis already.
It would be interesting to know what they DID make of it.
Glad you are loving your new job, such a change for you. It must be such a lot more physical, which has to add to your PN problems (was about to write I would imagine. . . . but OF COURSE it HAS to!!)
What about some physio? It's just not funny what life throws at you sometimes. Got to keep smiling though. Hope you are managing.
Helen x