Firstly, can I say to all sufferers who are really struggling with this condition that they have my greatest sympathy (and empathy). Here’s my post, and I apologise to international sufferers as this is a bit UK/NHS specific, but all views are welcome.
I’d like to get a sense of how confident sufferers in the UK feel about getting effective help through the NHS.
My diagnosis, which took almost a year (I posted my case history earlier), has been a matter of elimination and deduction (but, it does sound right to me). I never had any scans or anything sophisticated like that.
My experience so far has not been encouraging. I find it extraordinary that it is now two years since I told my GP and other medical professionals that sitting had become too painful. Not once has anyone said anything like: ‘You need to go to such and such orthopaedic shop/website where you can get X type of cushion that will allow you to sit for longer periods and continue to lead something like a normal life’, OR EVEN ‘Your best bet is to make your own U-shaped cushions according to the seats you sit on’ (which was the conclusion I came to myself). No, not a single suggestion, or even ‘How are you coping?’ Perhaps they just expected me to stand. I tried that (reading, breakfast, lunch all standing), until suddenly the veins in my legs started to blow up (literally in the space of a week, somewhat distressing). I spoke to my GP and suggested that possibly the unresolved PNE problem was proving detrimental to the rest of my health. I think the GP would have liked the floor to swallow me.
I am now ‘under’ my local pain clinic, they gave me a block once. That was in March of last year. They phoned me to ask if it had worked, I said it hadn’t. They have not been in touch since. Does anyone find that having a GP that gets behind your case makes a difference?
Could it be the case that there are only a few doctors/clinics in the UK that really know how to deal with this problem? I think there has been some mention on the forum of doctors/clinics in London (UCLH?). Will our local health authority eventually refer us to some place in the country where they can help us?
P_M
Is there hope for UK sufferers with treatment under the NHS?
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Painful Man
- Posts: 59
- Joined: Sat Dec 31, 2011 1:07 pm
- Location: UK
Re: Is there hope for UK sufferers with treatment under the
Hello PM - can I just say that I am so sorry to hear about the difficulties you've been having.
I too am in the UK, but my experience with regard to diagnosis, pain management, and general support has been very different to yours. I am sure that it makes a huge difference to have a supportive GP, and I know I've been very lucky in that respect.
I've had the odd bit of difficulty with locums at my GP practice, but other than that I've had effective help all the way along the line. However it was only through this forum that I discovered that there were consultants with a particular interest in PN, and I am sure that if I hadn't found this forum, I'd not have had the surgery last year.
As Violet said in reply to your other thread, we have to be quite proactive. We do all have to avoid sitting (without an effective cushion, that is) like the plague. This is a major lifestyle change, but sitting really does make it worse, as you've discovered. My cushion goes everywhere with me, I still cannot sit without it. I too have not had anyone tell me to avoid sitting, or to sort out a cushion, I worked that one out for myself - it hurts, after all.
There are only a few consultants in this country who really understand this condition, you are quite right. If you have a look at the information section, you'll find a list. It is a good idea to pick the one nearest to where you live, and ask your GP for a referral.
I am one of Dr Greenslade's patients now, this meant getting a referral to a different PCT, and presumably somewhere in the wings they have been sorting out funding for that - but I have had no problems at all in this respect. I told my GP that I had found out there was a consultant with a special interest in PN, and please could I go and see him. He said yes straight away, and I went off with an appointment form, ten minutes after arriving home I had an appointment booked. For me it has all been very straightforward, and none of it has cost me a penny - apart from prescriptions of course. (A prepayment certificate is a good idea and has saved me a lot of money.)
Not everyone has been so lucky. I do hope that it works out for you.
In the meantime I do hope that you are getting some effective meds for the pain? My GP was particularly helpful in this respect.
I too am in the UK, but my experience with regard to diagnosis, pain management, and general support has been very different to yours. I am sure that it makes a huge difference to have a supportive GP, and I know I've been very lucky in that respect.
I've had the odd bit of difficulty with locums at my GP practice, but other than that I've had effective help all the way along the line. However it was only through this forum that I discovered that there were consultants with a particular interest in PN, and I am sure that if I hadn't found this forum, I'd not have had the surgery last year.
As Violet said in reply to your other thread, we have to be quite proactive. We do all have to avoid sitting (without an effective cushion, that is) like the plague. This is a major lifestyle change, but sitting really does make it worse, as you've discovered. My cushion goes everywhere with me, I still cannot sit without it. I too have not had anyone tell me to avoid sitting, or to sort out a cushion, I worked that one out for myself - it hurts, after all.
There are only a few consultants in this country who really understand this condition, you are quite right. If you have a look at the information section, you'll find a list. It is a good idea to pick the one nearest to where you live, and ask your GP for a referral.
I am one of Dr Greenslade's patients now, this meant getting a referral to a different PCT, and presumably somewhere in the wings they have been sorting out funding for that - but I have had no problems at all in this respect. I told my GP that I had found out there was a consultant with a special interest in PN, and please could I go and see him. He said yes straight away, and I went off with an appointment form, ten minutes after arriving home I had an appointment booked. For me it has all been very straightforward, and none of it has cost me a penny - apart from prescriptions of course. (A prepayment certificate is a good idea and has saved me a lot of money.)
Not everyone has been so lucky. I do hope that it works out for you.
In the meantime I do hope that you are getting some effective meds for the pain? My GP was particularly helpful in this respect.
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Painful Man
- Posts: 59
- Joined: Sat Dec 31, 2011 1:07 pm
- Location: UK
Re: Is there hope for UK sufferers with treatment under the
Dear Calluna
Thank you for your reply. It was very encouraging, and helpful. I've just changed my GP, and am going to see the new one soon. I think it will be start from scratch. I have noticed that on the copies of consultants letters they have got information I gave them wrong, including adding things that I never said to them. I'm going to request copies of my medical records to check for signs they might be writing me off as a 'basket case'. You must be right, the only way is to get pro-active. I've been patient for too long. I'll look into those UK doctors with a special interest, and put it to my new GP.
Thank you again.
P_M
Thank you for your reply. It was very encouraging, and helpful. I've just changed my GP, and am going to see the new one soon. I think it will be start from scratch. I have noticed that on the copies of consultants letters they have got information I gave them wrong, including adding things that I never said to them. I'm going to request copies of my medical records to check for signs they might be writing me off as a 'basket case'. You must be right, the only way is to get pro-active. I've been patient for too long. I'll look into those UK doctors with a special interest, and put it to my new GP.
Thank you again.
P_M
Re: Is there hope for UK sufferers with treatment under the
They quite often get things wrong in letters, don't they, it is a bit annoying. I've had things documented in doctors letters that never happened - eg this patient was admitted and kept overnight for observation, sent home with prescription for whatever - when they didn't admit me and sent me home with no prescription. Next time I was in that dept at the hospital I told them it was not correct and they made a note.
I wouldn't worry about whether they are considering you to be a 'basket case'. Anyone who is dealing with chronic pain gets psychological symptoms - and by the way, if you haven't been offered CBT to help with pain management, it is worth asking about it. I am so glad I had that referral quite early on, it made such a difference to me - I was really surprised how much it helped.
Starting from scratch with a new GP may be a very good thing. A general diagnosis of PN doesn't have to be difficult to arrive at - if your pain is in the area innervated by the pudendal nerve, and it is neuropathic pain - then there it is, pudendal neuralgia.
I know that there is Dr Baranowski and Dr Curran in London, and Dr Greenslade in Bristol, also someone in Manchester too now, I think. I'd suggest that you ask for a referral to one of these consultants. And in the meantime your GP should be prescribing some appropriate pain relief.
You might find this leaflet useful - NICE guidelines for management of neuropathic pain - and also the Pain Scale. Maybe a good idea to print these out, I have found it very useful to have a copy to refer to. The Pain Scale is good to have with you at appointments then doctors can see exactly what you mean when you say my pain is level 5 or 7 or 2 or whatever. And they know that you've thought about it and made a realistic assessment of the level, too.
I do hope things go well with your new GP, please let us know how you get on.
I wouldn't worry about whether they are considering you to be a 'basket case'. Anyone who is dealing with chronic pain gets psychological symptoms - and by the way, if you haven't been offered CBT to help with pain management, it is worth asking about it. I am so glad I had that referral quite early on, it made such a difference to me - I was really surprised how much it helped.
Starting from scratch with a new GP may be a very good thing. A general diagnosis of PN doesn't have to be difficult to arrive at - if your pain is in the area innervated by the pudendal nerve, and it is neuropathic pain - then there it is, pudendal neuralgia.
I know that there is Dr Baranowski and Dr Curran in London, and Dr Greenslade in Bristol, also someone in Manchester too now, I think. I'd suggest that you ask for a referral to one of these consultants. And in the meantime your GP should be prescribing some appropriate pain relief.
You might find this leaflet useful - NICE guidelines for management of neuropathic pain - and also the Pain Scale. Maybe a good idea to print these out, I have found it very useful to have a copy to refer to. The Pain Scale is good to have with you at appointments then doctors can see exactly what you mean when you say my pain is level 5 or 7 or 2 or whatever. And they know that you've thought about it and made a realistic assessment of the level, too.
I do hope things go well with your new GP, please let us know how you get on.
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Painful Man
- Posts: 59
- Joined: Sat Dec 31, 2011 1:07 pm
- Location: UK
Re: Is there hope for UK sufferers with treatment under the
Dear Calluna
Thank you for your further thoughts and info. I have also had a very helpful reply from Birdlife in the main part of the forum. I am going to ponder what you both have told me and will come back with further questions and comments.
By the way I think it was you that recommended the Togu pillow. Well, I got one, and in fact am sitting on it as I write. It is certainly a useful addition to my now extensive repertoire of cushions and similar devices. I find that I need different solutions for different surfaces and situations.
All the best
P_M
Thank you for your further thoughts and info. I have also had a very helpful reply from Birdlife in the main part of the forum. I am going to ponder what you both have told me and will come back with further questions and comments.
By the way I think it was you that recommended the Togu pillow. Well, I got one, and in fact am sitting on it as I write. It is certainly a useful addition to my now extensive repertoire of cushions and similar devices. I find that I need different solutions for different surfaces and situations.
All the best
P_M
Re: Is there hope for UK sufferers with treatment under the
Hi,
I'm new to the website and this is my first post. After 6 years of pain and lots of investigations, doctors in UK have finally identified a pudendal nerve problem. I realised some time ago that the screaming stabbing pain was often followed by passing wind so I tried anti-spasmodics that I had for irritable bowel and no longer needed. They helped. I was stabilised on a double dose of sustained released Colofac MR capsules (4 a day) topping up with Dicycloverine (Merbentyl) when the pain was bad. That has helped a lot until recently when Dicycloverine was discontinued and Colofac MR became unavailable. Has anyone else tried anti-spasmodics??
Any suggestions to deal with pain would be helpful. I'm seeing the urology nurse on Fri. Do they supply cushions on the NHS?? Which cushions are available in UK? Where do I get them from?
Thanks
Dorothy
I'm new to the website and this is my first post. After 6 years of pain and lots of investigations, doctors in UK have finally identified a pudendal nerve problem. I realised some time ago that the screaming stabbing pain was often followed by passing wind so I tried anti-spasmodics that I had for irritable bowel and no longer needed. They helped. I was stabilised on a double dose of sustained released Colofac MR capsules (4 a day) topping up with Dicycloverine (Merbentyl) when the pain was bad. That has helped a lot until recently when Dicycloverine was discontinued and Colofac MR became unavailable. Has anyone else tried anti-spasmodics??
Any suggestions to deal with pain would be helpful. I'm seeing the urology nurse on Fri. Do they supply cushions on the NHS?? Which cushions are available in UK? Where do I get them from?
Thanks
Dorothy
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
Re: Is there hope for UK sufferers with treatment under the
Hi Dorothy and welcome to the forum
Lots of us find that medication for neuropathic pain is helpful - have a look in the information section, and you perhaps might also find this leaflet to be helpful - NICE guidelines for management of neuropathic pain.
With regard to cushions, I have never heard of these being supplied by the NHS but I am sure it is worth asking. Many of us have made our own cushions (cheap kneeling pad from the garden centre, cut out a U shape in the appropriate place), my own favourite is the Togu Airgo Active cushion which I bought from Amazon here in the UK - this one and also this one which has a padded cover, these both come with a little pump so you can inflate them as you wish. There are lots of others available though - Amazon is a good place to look.
Lots of us find that medication for neuropathic pain is helpful - have a look in the information section, and you perhaps might also find this leaflet to be helpful - NICE guidelines for management of neuropathic pain.
With regard to cushions, I have never heard of these being supplied by the NHS but I am sure it is worth asking. Many of us have made our own cushions (cheap kneeling pad from the garden centre, cut out a U shape in the appropriate place), my own favourite is the Togu Airgo Active cushion which I bought from Amazon here in the UK - this one and also this one which has a padded cover, these both come with a little pump so you can inflate them as you wish. There are lots of others available though - Amazon is a good place to look.
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Painful Man
- Posts: 59
- Joined: Sat Dec 31, 2011 1:07 pm
- Location: UK
Re: Is there hope for UK sufferers with treatment under the
Dear Dorothy
6 years! What a wait. Well, I've gone two years, and still counting. I must be one of the luckier ones, as I only get pain if I sit. Solution: don't sit, or try to get by with cushions, and even then sitting time has to be broken up with walking, lying down, bit of kneeling etc. I answered someone in the US with my attempts at cushions, so here it is again (by the way the Togu is good too, sometimes I find changing cushion type can get me some more sitting time):
I've made various U shaped cushions from foam. The best I've found is a relatively hard foam used for exercise mats. I haven't tried the gardener's mat yet (must go to garden centre!). It does not compress too much, so keeps the weight off the nerve. Still gets uncomfortable after an hour or so, but it has been a life-saver for me. I take a template of different seats around the house and then have the foam seat cut exactly to fit. That means as much of the rest of your legs take your weight.
Another solution that has been very handy for being out and about has been my two 'foam obelisks' (as in 2001 Space Odyssey). Seriously, these have been very good. They are made from the kind of black foam used in camera cases, firmer than foam I use at home, so don't need to be so thick. You have to cut the rectangles according to your own size/or average chair seat size. You place on any chair or bench leaving enough of a gap in the middle, then sit. For me it means that if I am out and I see a hard bench, I can sit. They are not so good on small round chairs, or very soft furnishings. They are also very discreet. I have gone into restaurants and deployed them, and they never seem to catch anyone's eye. They are 14 inches by 8 inches, and about 1 inch/2.5cm thick. As I said before, they are less effective on round chairs and enclosed chairs (because you can't position them so that you get the gap in the middle), but on the rest of square-seated chairs or benches they are very good.
I just went to a specialist foam shop near me (found it on the internet), where they cut all kinds of different foam to shape. The type of foam used for mats or upholstery they were willing to cut to any shape for me. However, they refused to cut this black foam to shape, as they said it did not conform to fire regulations. That's how I came up with the idea of the two rectangles. It is a foam that is used in cases/brief cases that contain cameras or other special equipment. They usually cut out exact shapes so a camera can be fitted. It is much denser and does not compress like the other foam. However, it has enough softness to make sitting reasonably 'comfortable' (I've discovered comfort is a relative term now), but enough firmness to keep the nerve area an inch off the chair surface.
Hope this is of some help...I mean what DO they expect us to do? Just stand or lie down all the time?
P_M
6 years! What a wait. Well, I've gone two years, and still counting. I must be one of the luckier ones, as I only get pain if I sit. Solution: don't sit, or try to get by with cushions, and even then sitting time has to be broken up with walking, lying down, bit of kneeling etc. I answered someone in the US with my attempts at cushions, so here it is again (by the way the Togu is good too, sometimes I find changing cushion type can get me some more sitting time):
I've made various U shaped cushions from foam. The best I've found is a relatively hard foam used for exercise mats. I haven't tried the gardener's mat yet (must go to garden centre!). It does not compress too much, so keeps the weight off the nerve. Still gets uncomfortable after an hour or so, but it has been a life-saver for me. I take a template of different seats around the house and then have the foam seat cut exactly to fit. That means as much of the rest of your legs take your weight.
Another solution that has been very handy for being out and about has been my two 'foam obelisks' (as in 2001 Space Odyssey). Seriously, these have been very good. They are made from the kind of black foam used in camera cases, firmer than foam I use at home, so don't need to be so thick. You have to cut the rectangles according to your own size/or average chair seat size. You place on any chair or bench leaving enough of a gap in the middle, then sit. For me it means that if I am out and I see a hard bench, I can sit. They are not so good on small round chairs, or very soft furnishings. They are also very discreet. I have gone into restaurants and deployed them, and they never seem to catch anyone's eye. They are 14 inches by 8 inches, and about 1 inch/2.5cm thick. As I said before, they are less effective on round chairs and enclosed chairs (because you can't position them so that you get the gap in the middle), but on the rest of square-seated chairs or benches they are very good.
I just went to a specialist foam shop near me (found it on the internet), where they cut all kinds of different foam to shape. The type of foam used for mats or upholstery they were willing to cut to any shape for me. However, they refused to cut this black foam to shape, as they said it did not conform to fire regulations. That's how I came up with the idea of the two rectangles. It is a foam that is used in cases/brief cases that contain cameras or other special equipment. They usually cut out exact shapes so a camera can be fitted. It is much denser and does not compress like the other foam. However, it has enough softness to make sitting reasonably 'comfortable' (I've discovered comfort is a relative term now), but enough firmness to keep the nerve area an inch off the chair surface.
Hope this is of some help...I mean what DO they expect us to do? Just stand or lie down all the time?
P_M
Re: Is there hope for UK sufferers with treatment under the
Thanks for your suggestions. I'll experiment. This website is really helpful as I thought I was the only one with this strange stabbing excruciating pain. The gynaecologist and bowel surgeons together studied their anatomy books as they said there was no nerve where I said I had pain. They discovered there is and it has so many fingers. I had had so many investigations. When I searched the internet for an anatomical diagram of the pudendal nerve (having just been told the name of the nerve) I came across this website and found I am not alone. I have Lyme Disease and Sjogren's syndrome (an auto-immune disease) and have been sitting or lying for 17 years due to fatigue - so it fits my profile exactly.
I haven't tried any neurological meds. Can GPs prescribe them or do you need to see a neurologist? Which ones have least side-effects?
Thanks,
Dorothy
I haven't tried any neurological meds. Can GPs prescribe them or do you need to see a neurologist? Which ones have least side-effects?
Thanks,
Dorothy
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
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Painful Man
- Posts: 59
- Joined: Sat Dec 31, 2011 1:07 pm
- Location: UK
Re: Is there hope for UK sufferers with treatment under the
Well, I saw my new GP. Gave him the info from this site, and details of Dr Greenslade at Bristol, and he said OK straightaway. He did not seem to think it would be a problem going from one PCT to another. Said a bit about diffeent 'tariffs', but not a problem. That was only last week, so I imagine it will be a while before I hear anything.
Just to give me a bit of stress, I had a call today from our local pain clinic offering me a follow-up to the unsuccessful treatment I had last March. It was probably silly of me to think that the GP would have informed them not to proceed with me, anyway with some unease I turned the appointment down.
I think I did the right thing, based on the assumption that Bristol would have a significantly different approach/insight, and that it would be inappropriate to mix the two paths.
All the best
P_M
Just to give me a bit of stress, I had a call today from our local pain clinic offering me a follow-up to the unsuccessful treatment I had last March. It was probably silly of me to think that the GP would have informed them not to proceed with me, anyway with some unease I turned the appointment down.
I think I did the right thing, based on the assumption that Bristol would have a significantly different approach/insight, and that it would be inappropriate to mix the two paths.
All the best
P_M