I am in no doubt whatsoever that finally my symptoms can be explained by PN.
It's vital to me that I now get the very best possible diagnosis, and here is where I am getting a little confused. Who is the
most qualified, or can offer the most thorough diagnostic process? Would it be Dr Baranowski, Dr de Mello ,or Dr Greenslade?
I live in London, but I'm more than prepared to travel absolutely anywhere to get this right. I have an appointment with my GP this coming monday morning 17th June, I will be asking/demanding a referral to a PN specialist but I'm sure my Dr won't know anything about it so I need to be as well informed as possible.
Thank you
David
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DavidS2
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I don't know the answer but I am a female with your trouble and I have found 80 % relief by spreading any kind of liniment on the abdomen three times a day. I only discovered this two months ago and I have had severe PN since I was nineteen. I'm sixty eight now. I am being treated by an anaesthetist called dr kothari at st Thomas hospital in London. She has a website and she will start me on electromyography soon.
Thank you for responding and for your advice. Sorry to hear you've suffered for so long. I've only just now heard of Pudendal Neuralgia and I've been chronically ill for 35yrs, totally written off by doctors who have been unable to diagnose the problem and treated as a head case most of the time. My symptom is constant rectal pain with the "foriegn body" in the anus sensation and numbness. It is a soul destroying condition. Good luck with your treatment.
I finally think I am getting somewhere now. Like you, I have been fobbed off as a malingerer for decades. This condition cost me my marriage and I was not able to have any more children as sex was impossible. Some of my so- called friends tell me the disability is all in my head. Thank heaven I have a good psychotherapist. Don't give up. My thoughts are with you.
I understand the way that you feel right now as I am currently going through the same situation as you. The symptoms that you mention are all too familiar.
I was finally diagnosed at the pain clinic in Birmingham at the QE. This was more luck than judgement as the Consultant knew someone who had PNE. The next step for confirmation would be a nerve block injection as this is what they will have to send you for anyway for confirmation. The idea being that if you get some relief then it is probably PNE.
The Nerve Block, although I only had hours of relief, enabled me to then get a referral to Dr Greenslade at Bristol. I was made to wait an additional 3 months due to the demand for his services.
Still waiting at the moment, so all I have is hope that things will change, but painkillers (Tramadol, Morphine patches and trying Pregabalin with not much luck) are all I have.
If you need any advice please ask, but demand a nerve block test ASAP, and if you can't get anywhere, demand to see another Doctor.
Thank you so much for responding to my post and for your advice. I'm asking my GP today for a referral to see Dr Greenslade. I cannot believe it's taken 35 years to find out about a known condition that finally explains my symptoms. I have suffered so much for so long and thought I was the only person in the world with this curse. I'm sorry to hear that you have this too, best of luck with your treatment. I would be very interested to correspond with you further, as speaking to others that have similar symptoms is something i thought would never happen. I think it would really help me. How long have you been suffering with this?. Would you mind telling me more about your symptoms exactly? Validation that I'm not the only man in the world with this terrible affliction would help. I hope you understand what I'm trying to say. Anyway, finally we have hope!. All the best.
I have no idea what has happened to your problem since your previous post. Ive just come across this site. In fact a colorectal surgeon said this was a possibility for me.
I also feel as though I have a foreign object in my anus for the past 5 years, and have been swanning around seeing various specialists.
Have been told that a nerve block injection could be the way forward in the bottom.
However this was recommended by a colorectal specialist as a blind procedure.
If this fails then releasing of the nerve may be.
I have some pelvic lesions which may have some involvement with S1-S3 so this may be the problem although they have remained stable for 10 years.
Hi David, I have seen Dr Baranowski many times. The man is a perfect gentleman and his knowledge is second to none. Unfortunately for me I have had seven nerve blocks and two operations and I am still waiting for improvements to happen. My only two methods of relief are Pregabalin (Lyrica) and wearing a cricket box inside a pair of trunk boxers. I know what you are going through I have had this pain for 15 years.
hi pete, I know you are a man and I am a woman !but I just read your post and realized it was just 2 months ago and was interested to see what you wrote about Dr Baranowski because I have read a few posts on the site and they all seem to say he was brash and odd!!(I live in York and I have had suspected right sided pne for 5.5 years and am getting nowhere with it up here
and no pain meds help me)
my partner and I were looking around the net and came across dr baranowski ,but when I looked at other posts I was slightly put off by some people saying he was brash and odd !!! (also some lady who saw him said he only deals with a person holistically and would not give her a c.t guided injection and she had to keep going back for pelvic physio ,so she left upset and never went back as not affordable)
so I would be interested in finding out a bit more about Dr Baranowski and I read your post and thought you may be the man to enlighten me!
did he diagnose your pne via a ct guided injection?? or were you diagnosed elsewhere?
Dr Marc Possover Zurich Switzerland is the leading physician in this field while I was in his office, my husband spoke to a gentleman in waiting room who was a leading doctor in Israel. He had the same issue as you describe. He told my husband that he came all the way to see Dr Possover. He had treated him and was very pleased.He did my surgery laparoscopicly versus the traditional methods. The laparoscopic procedure allows you to heal from surgery quicker however, with any nerve related surgery it may take some time for nerves to regenerate following decompression. I speak only from my personal experience.
Hello I know your post is a year old but did you get any more information regarding Dr Possover or did you get treated by him would love to hear as desperate to get help
I am sorry I just saw your post. I am very happy to have found Dr. Possover he is very careful to not immediately suggest surgery if he feels he can treat you without it. I did have surgery, it has now been a year. Because of the damage I had from 14 previous surgeries I have a lot of scar tissue causing extreme pudendal nerve damage. I am actually going back to Zürich to see Dr. Possover next month. He told me in advance due to the extensive damage one procedure might uncover other issues. I trust him I am comforted by his manner And the fact that he actually listens to me.
To me as proof of his abilities, doctors from all over the world ask permission to watch him operate and learn a technique that he perfected for pudendal nerve damage. My doctor in the US has now started going to Switzerland several times a year to learn and work with Dr. Possover.
I saw a video clip following a nerve procedure Dr Possover performed on a woman who was paralyzed from the waist down. I was amazed as I watched her lift her leg immediately following surgery. Dr. Possover is amazing.
Hello, thanks for what are you writing, it is so helpful! have my brother with the same problem, he had 14 surgeries so far, but I can see that the pain is getting worse every day passing. It is just heartbreaking for me and I would love to help him in all ways. He doesn't speak English, so not able to follow this blog. I want to talk to him about Dr Possover, although we went already to Switzerland for his second operation, but in Losanna. Can I ask you how is your pain now? are you feeling any better? I really hope so, I wish you all the best. Thanks.
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