Hi,
I am new to the forum and have read many of the articles with interest as I am recognising alot of the symptoms of PN. I am in the UK and it looks like there are only two specialists (London and Bristol) who are trained to do surgery for PN sufferers. Are these the only people who can get you a diagnosis of PN? I'm just not sure where to start. My symptoms are in the anal/perianal area and I have no physical findings on colorectal inspection and MRI. I'm just not sure how receptive my GP would be if I suggested it could be PN. I realise it could just as easily not be PN and can't diagnose myself. I certainly don't want to appear as anxious about this as I feel as I know that can lead to unnecessary labels. It concerns me that not all neurologists know about this, but I can only assume a neurological investigation is the next step. Any advice welcome.
Kath
Getting a diagnosis
Re: Getting a diagnosis
Hi Kath - first of all, welcome to the forum!
I would urge you to go and talk to your GP. I have found that there seems to be very good awareness of PN here in the UK - my GP knew about it, as did every other doctor I have seen. You will need a referral from your GP to see a specialist, anyway, unless you are going to see people privately - and even then, advice from your GP will be useful.
My diagnosis of PN came from my gynaecologist. I have not seen a neurologist, nor do I plan to - I don't think this is a common route to take but I may be wrong, of course. I do know that Pain Management falls within the remit of an anaesthesiologist, usually based at a Pain Clinic, as are Dr Greenslade and the rest of his team. I don't know about the London team of specialists. - I have found the input of my local Pain Clinic to be really helpful, by the way - a referral for this, again, needs to come from your GP, this may be your next step. (The consultant I have been seeing there is an anaesthesiologist.)
I do hope you find some help soon, and would urge you to get the pain under control as soon as you can, it can be hard to manage if it continues too long. There is a lot of information about both pain management options, and diagnosis, on this website. Don't forget to use ice, it is a real help!
I would urge you to go and talk to your GP. I have found that there seems to be very good awareness of PN here in the UK - my GP knew about it, as did every other doctor I have seen. You will need a referral from your GP to see a specialist, anyway, unless you are going to see people privately - and even then, advice from your GP will be useful.
My diagnosis of PN came from my gynaecologist. I have not seen a neurologist, nor do I plan to - I don't think this is a common route to take but I may be wrong, of course. I do know that Pain Management falls within the remit of an anaesthesiologist, usually based at a Pain Clinic, as are Dr Greenslade and the rest of his team. I don't know about the London team of specialists. - I have found the input of my local Pain Clinic to be really helpful, by the way - a referral for this, again, needs to come from your GP, this may be your next step. (The consultant I have been seeing there is an anaesthesiologist.)
I do hope you find some help soon, and would urge you to get the pain under control as soon as you can, it can be hard to manage if it continues too long. There is a lot of information about both pain management options, and diagnosis, on this website. Don't forget to use ice, it is a real help!
Re: Getting a diagnosis
Hi Calluna,
Thanks for the reply. It's good that your GP was aware of PN, I am just surprised the colorectal surgeon wasn't. Seems that for some people getting a diagnosis can take years which is a scary thought. Maybe awareness is okay in the UK as there are two centres that offer treatment.
Can I ask some more questions?
Do symptoms ever subside on their own?
Is it normal for firmer seats to cause more discomfort. I assume this is because there is more pressure on the area. The car seat is the worst one of all, it is especially firm and I feel the angle doesn't help.
Do other activities cause increased discomfort - sitting obviously is one but I find that bending over alot can be difficult. Is this normal?
Is it normal for the skin in the area to feel hypersensitive to touch - even underwear feels odd.
Not sure if I am posting in the right forum section. Apologies if I'm not.
Kath
Thanks for the reply. It's good that your GP was aware of PN, I am just surprised the colorectal surgeon wasn't. Seems that for some people getting a diagnosis can take years which is a scary thought. Maybe awareness is okay in the UK as there are two centres that offer treatment.
Can I ask some more questions?
Do symptoms ever subside on their own?
Is it normal for firmer seats to cause more discomfort. I assume this is because there is more pressure on the area. The car seat is the worst one of all, it is especially firm and I feel the angle doesn't help.
Do other activities cause increased discomfort - sitting obviously is one but I find that bending over alot can be difficult. Is this normal?
Is it normal for the skin in the area to feel hypersensitive to touch - even underwear feels odd.
Not sure if I am posting in the right forum section. Apologies if I'm not.
Kath
Re: Getting a diagnosis
Hi Kath - questions are always good, I will answer as best I can, and hopefully someone with more experience will also chime in!
Do symptoms ever subside on their own? I don't know the answer to this one - but it does seems logical that sometimes it could all settle down again. I am hoping very much that my symptoms will subside on their own, as I am hoping that the nerve will heal.
Is it normal for firmer seats to cause more discomfort. I assume this is because there is more pressure on the area. The car seat is the worst one of all, it is especially firm and I feel the angle doesn't help. This one I do know! - the answer is that it depends. Some people find soft seats more comfortable, for others it is firm seating that is better. Personally I also find car seats particularly difficult. However I have just bought a new cushion which I hope is going to make the difference, haven't been out in the car since I bought it.
Do other activities cause increased discomfort - sitting obviously is one but I find that bending over alot can be difficult. Is this normal? Yes, that's normal for PN. Bending is a nasty one, I agree. Walking, however, is good.
Is it normal for the skin in the area to feel hypersensitive to touch - even underwear feels odd. Again, yes, that can be one of the symptoms of PN. Lots of us tend to wear loose clothing because of this - skirts are easier than trousers, and underwear can be difficult. Something that I've found to help with this is the use of lidocaine patches which I got from the Pain Clinic, you can cut them to whatever size and shape you need.
I hope things go better for you in the New Year.
Do symptoms ever subside on their own? I don't know the answer to this one - but it does seems logical that sometimes it could all settle down again. I am hoping very much that my symptoms will subside on their own, as I am hoping that the nerve will heal.
Is it normal for firmer seats to cause more discomfort. I assume this is because there is more pressure on the area. The car seat is the worst one of all, it is especially firm and I feel the angle doesn't help. This one I do know! - the answer is that it depends. Some people find soft seats more comfortable, for others it is firm seating that is better. Personally I also find car seats particularly difficult. However I have just bought a new cushion which I hope is going to make the difference, haven't been out in the car since I bought it.
Do other activities cause increased discomfort - sitting obviously is one but I find that bending over alot can be difficult. Is this normal? Yes, that's normal for PN. Bending is a nasty one, I agree. Walking, however, is good.
Is it normal for the skin in the area to feel hypersensitive to touch - even underwear feels odd. Again, yes, that can be one of the symptoms of PN. Lots of us tend to wear loose clothing because of this - skirts are easier than trousers, and underwear can be difficult. Something that I've found to help with this is the use of lidocaine patches which I got from the Pain Clinic, you can cut them to whatever size and shape you need.
I hope things go better for you in the New Year.
Re: Getting a diagnosis
Hi Calluna,
I have had an appointment today with my gastroenterologist ( I have crohns disease) and I took along the information about PN from this website. He read it with interest, said sometimes consultants have to be guided by patients and is going to contact the UK specialists for further advice. Whilst I don't want this to be PN I fear it is and need a diagnosis so I can start my journey on getting some pain relief.
Thanks for your help, will let you know what happens next.
Kath
I have had an appointment today with my gastroenterologist ( I have crohns disease) and I took along the information about PN from this website. He read it with interest, said sometimes consultants have to be guided by patients and is going to contact the UK specialists for further advice. Whilst I don't want this to be PN I fear it is and need a diagnosis so I can start my journey on getting some pain relief.
Thanks for your help, will let you know what happens next.
Kath
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tummydepressed
- Posts: 61
- Joined: Mon Dec 27, 2010 1:05 pm
Re: Getting a diagnosis
Hi Kath - I will be interested to hear what you say.
I am also in the UK. I have been referred to a group of specialists in Harrow who are treating me for Pelvic Floor Dysfunction, or Levator Ani Syndrome.
Nobody has mentioned the possibility of PN... when I raised the subject I was told it was unlikely and there seemed to be little knowledge of it. I may seek some private consultation.....
J
I am also in the UK. I have been referred to a group of specialists in Harrow who are treating me for Pelvic Floor Dysfunction, or Levator Ani Syndrome.
Nobody has mentioned the possibility of PN... when I raised the subject I was told it was unlikely and there seemed to be little knowledge of it. I may seek some private consultation.....
J
Re: Getting a diagnosis
Hi Calluna
QUOTE 'I have found that there seems to be very good awareness of PN here in the UK - my GP knew about it, as did every other doctor I have seen.'
I have a question. Where in the UK do you live? Wherever it is you are really luck that the doctors know about PN. I have had a long search to find any of the medical profession that know about it! My GP did know where to send me and I only came across Dr Greenslades name via a very kind fellow suffer on this site (Who is no longer with us I'm afraid). I've also had to travel a long way to get treatment.
Cheers
Peaches
QUOTE 'I have found that there seems to be very good awareness of PN here in the UK - my GP knew about it, as did every other doctor I have seen.'
I have a question. Where in the UK do you live? Wherever it is you are really luck that the doctors know about PN. I have had a long search to find any of the medical profession that know about it! My GP did know where to send me and I only came across Dr Greenslades name via a very kind fellow suffer on this site (Who is no longer with us I'm afraid). I've also had to travel a long way to get treatment.
Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
Re: Getting a diagnosis
Hi - I am in Wiltshire, not far from Bath. With regard to doctors knowing about PN - maybe it is because my case is so clear cut. The pain is very clearly neuropathic, and it is also very clearly from the pudendal nerve - so identifying it as Pudendal Neuropathy is no big step at all. There is nothing else going on apart from a damaged nerve.
I am glad that your GP at least knew where to send you. Mine did not know about Dr Greenslade - I was not surprised by this, there is no reason why he should particularly know, after all.... My GP was the person who started my treatment though, and has been very supportive all the way.
I may be going to see Dr Greenslade this year, not yet decided. It is still going to need approval from the exceptions committee, even though we are so close it still means going to another PCT....
I am glad that your GP at least knew where to send you. Mine did not know about Dr Greenslade - I was not surprised by this, there is no reason why he should particularly know, after all.... My GP was the person who started my treatment though, and has been very supportive all the way.
I may be going to see Dr Greenslade this year, not yet decided. It is still going to need approval from the exceptions committee, even though we are so close it still means going to another PCT....
Re: Getting a diagnosis
Thought I should update everyone. I paid privately to see Dr Greenslade last thursday and he diagnosed me with PN. I feel I would never have been diagnosed had I not found this website and taken matters into my own hands. Dr Greenslade is a lovely man and I am starting out on medication. I am going to my GP tomorrow to get a referral through the NHS, this was advised by Dr Greenslade. He said the wait is 11 weeks but I guess it could take longer as it is outside of the PCT I am in. I have had symptoms for 7 months and am pleased I have got a diagnosis so early on as from what I read early diagnosis is helpful in the prognosis. I certainly hope so.
Does anyone know of anyone in the UK who has had surgery? There just don't seem to be many posters from the UK on this or the tipna website.
Does anyone know of anyone in the UK who has had surgery? There just don't seem to be many posters from the UK on this or the tipna website.
Re: Getting a diagnosis
Glad it went well! What meds are you starting with, out of interest?
I think that the 11 week wait is independent of whether you are in the same PCT or not - I am not. When I went to my GP and he gave me the usual referral form with password, I just rang up that evening and my appointment is at the beginning of April - it was 10 weeks to wait then, only 9 now. I am supposed to be getting a confirmation letter from Frenchay the week before my appointment. Hopefully there will be no last minute problems.
Do make sure that your GP makes the appointment on a 'named doctor' basis, by the way.
I don't think there is anyone on this board who is in the UK and has had surgery.... if there is, they are keeping very quiet!
I think that the 11 week wait is independent of whether you are in the same PCT or not - I am not. When I went to my GP and he gave me the usual referral form with password, I just rang up that evening and my appointment is at the beginning of April - it was 10 weeks to wait then, only 9 now. I am supposed to be getting a confirmation letter from Frenchay the week before my appointment. Hopefully there will be no last minute problems.
Do make sure that your GP makes the appointment on a 'named doctor' basis, by the way.
I don't think there is anyone on this board who is in the UK and has had surgery.... if there is, they are keeping very quiet!