The lack of recognition is getting on my 'nerves'

I am having a ridiculous time at the moment ( will write about it soon) I am still battling the powers that be with regard to pelvic nerve pain and entrapment and if it actually exists.

There is a small reference to piriformis syndrome on the NHS choices web site

under a different diagnosis for sciatica, which I am so grateful for, but there seems to be nothing about pudendal or indeed any other pelvic nerve problem on there.

I would urge everyone reading this, to ask the NHS to list pudendal neuralgia as a recognised condition (maybe the rest will follow)

If we all post it they may take some notice. Here is the link

nhs.uk/aboutNHSChoices/Page...

No need to join, just click next, then next again and mark Conditions and treatment information on the last page and leave your comment at the bottom.

Hopefully there will be more recognition for pelvic nerve conditions soon.

Thanks in advance,

Helen

13 Replies

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  • I think I may have same thing as you? There is so little information out there re POP (Pelvic Organ Prolapse) and pelvic pain, obstructed defaecation (rectocele) and trapped (sexual) nerve - seems to be the same nerve that tells you when you need to pass urine. GP would rather issue a sickness certificate for the stress that results from this than for the problem itself. Half the stress and depression is because it is largely UNRECOGNISED by NHS. There is lots of stuff on internet about urinary incontinence but NOTHING about obstructed defaecation, or trapped nerve pain. It's extremely depressing. I had to look up a diagram of the female anatomy to realise for myself which nerve (pudential) was trapped. I am having more or less to diagnose myself. Nothing about it on NHS choices etc.

  • Thanks for your reply Hatty, the lack of knowledge about pelvic nerve entrapment is outrageous in my opinion. Not only does it lead to wrong diagnosis, from back problems (try again) to psychological (we probably will need help in that area, eventually)

    I know that neurosurgeons are responsible for the central nervous system but when they give a wrong diagnosis (as has happened with me) it is almost impossible to overturn that diagnosis, even though it is wrong. AND how dare we question their 'superior' expertise??

    Pelvic specialists such as gynaecologists and urologists, have no specific interest in nerves, unless they particularly decide to specialise in the nerves of this area and who would want to as they are already probably doing rather well in whichever area of medicine they have decided to work in, and nerves are such complicated things.

    I am glad that a couple of doctors have decided to take the pelvic nerve problem on board over here. I don't know if you are aware but Dr Baranowski (urologist) in London and Dr Greenslade (pain management) in Bristol both do nerve block injections and are specialising in pudendal nerve problems.

    Are you receiving any treatment at the moment?

  • I've discussed this with the NHS Evidence team and they recently recognized information that is produced under the Information Standard accreditation which includes both of our pudendal information leaflets ( one on diagnosis and management and the other on nerve blocks for CPP). They are happy to link to our information.

  • That's great Judy. We need more of this.

    The thing is that is still buried to some extent, in that it's a click to a click etc.

    I will be very pleased when the NHS simply display it on their accessible website so that people don't have to hunt for help.

    I have seen that the PN leaflets are available by email from the home page.

  • The leaflets are available by post. The effort that goes into producing and keeping this information up to date is huge and of course we have no staff to do it. Therefore we have to ask people to contribute to the charity for this to help towards the running costs otherwise we wouldn't be here !

  • I had a reply from NHS choices which will hopefully help us all eventually:

    Dear Helen,

    In regards with the query you raised, 'Pelvic girdle pain' is already on

    our list of new topics to write, and we are working as quickly as we can

    to fill the gaps in the index.

    Thanks again.

    Regards,

    NHS Choices Team.

  • Helen,

    Must say I don't have much confidence in NHS Choices.Pelvic girdle pain is more straightforward than what we deal with as it's usually temporary. Did you mention PPSN ??

  • I didn't Judy, but I will reply with the details :)

    The problems of pelvic pain, I don't know if they are just mentioning pelvic girdle pain? ? are so complex. At least it's a start.

  • hi there,i am a newbie to this site,have had pelvic pain for several yrs, but last 8 months i have had a terrible sharp pain on the right side just inside my bum back to front and it feels like i have been stung by a wasp when sitting on it ,it is at its worst,had a colerectal specialist look at me under a general anesthetic,no fissures and a m.r.i with a dye ,no fissures,so went back to g.p and he said oh it could be a nerve thing! i have gone 8 months without pain relief as i am sensitive to a lot of meds,my partner is coming with me on mon to see him to try to get to the"bottom" of this(excuse the pun!) i was hoping to get some info on pn ,on the n.h.s. website but can't seem to find anything ,i really do think i have pn or pne but if i had something concrete of n.h.s website,he may look at it more than getting it off any other web site

    i suffer from fibromyalgia and myo fascial pain (tight muscles) so i think that could be pressing on the nerve,it is more bareable when i lie down on my left side,it is a living NIGHTMARE!! as far as the n.h.s is on this matter and on fibromyalgia we may as well be living in a mud hut in a third world country, any advice?

  • We have received several compliments from patients who have taken a copy of our pudendal leaflet to a GP. They tell us that their health professionals find it very informative and useful. These are in fact written for patients and the Information Standard is for producers of patient information. However medical knowledge takes a long time ( up to 20 years ) to get into practice ! I heard recently that new technologies/procedures take 17 years to be adopted by the NHS.

  • dear helen legs 11 , hi its me ,i haven't posted for a while, last time i did i had finally on the 12 june gott my g.p to refer me to dr de mello, i was told i had to ring up on the choose and book service and i would get a "virtual appointment" which just puts you on the system so a questionare generates and is sent to your home( a new system apparently) so i do all that 18th june was virtual date, two weeks on nothing i have spoken to his secretary who i didn't find very helpful so after about 5 other phone calls spoke to a lovely lady called lisa who today did it on her computer system and said i should get the questionare within a few days,it seems i must have slipped through the cracks, (yep that's me ,so it doesn't only happen to you!!) so that' s been another two weeks of pain for nothing, i don't know ,my partner said it would have been quicker to go to manchester and pick the questionnare up!! how are you doing, i know i am sposed to live with fibro ,but i sure could do without my bum pain grrrrr..... i'd buy a stress ball but the mood i am in it wpould break within 5 mins

  • Hmm this is 'the modern day' when communication problems shouldn't be an issue??

    I hope their new system works better once all teething problems are sorted out.

    I'm not glad that I am NOT the only one, BUT do feel a little less 'targeted' now that they seem to be practising on you too.

    Actually Dr Greenslade has recently replied to my PCT about their funding referral refusal so something may happen soon. OOOOooooOOOOO!!

    Watch this space