Health Organization for Pudendal Education

First of all, where is the best place in London dealing with PN? Is it Guys or St Thomas?
Second, who does the referring - is it straight from the GP - or a via a Consultant Urologist?
In my case, a Consultant Urologist first said he was going to refer me to a Pain Management Clinic,
and then he did not. It probably had something to do with the fact that he circumcised me and made my problems worse.
My GP also sent a letter about 2 years ago, I have never heard from them.
So is it best to be reffered directly to Dr Baranowski? And is he the best in London?

I think I can answer your questions.

First of all, in general, you always need to be referred by your GP. Referrals which come from consultants tend to take much, much longer.

With regard to a Pain Management referral, I had this specific experience. I was first referred to a Pain Clinic by a consultant, I didn't hear anything for ages, it was months and months, and when I called the Pain Clinic they didn't know anything about me. Then I had a call from my GP asking me to go in and see him - he explained that he had just had a letter from the Pain Clinic letting him know that they had received a referral from the consultant, and asking him to please support this. He sent off a letter, and finally I was in the queue. By the way, you should be aware that Pain Clinics do tend to have long waiting lists, I had to wait 16 weeks. But you will get there in the end, as long as you are in the queue.

The other thing with regard to Pain Management, your GP can start you on the medication, you don't need to wait until you get to the Pain Clinic. If you look online, you may find that your local Pain Clinic has a website. Here is the link to the one that I attend, there is a lot of useful information there, especially in the Pain Treatment section.

With regard to PN specialists, there are only two teams in the UK. One is based in Bristol; this is Dr Greenslade together with Drs Wong and Patel who are the surgeons in the team. The other team is in London; this is Dr Andrew Baranowski - who does assessment, diagnosis and nerve blocks - together with Professor Thomas Carlstedt, who does the surgery.

Dr Baronowski is based at the National Hospital for Neurology and Neurosurgery.

If London is the more convenient centre for you, then you should ask your GP to refer you to Dr Baronowski. If this takes you out of your local PCT, then the referral will need to be approved by the Exceptions Committee, I am told that it helps if your GP emphasises that your situation is exceptional.

Good luck! There have been reports on this board that both teams are excellent, by the way.

Thank you very much Calluna. I will make an appointment with my GP this week to be referred to Dr Baranowski.

Why don't you consult the Bristol team. They trained with Prof.Robert in Nantes. They perform surgery available on the NHS.
http://www.pudendalhope.info/forum/view ... f=27&t=584

Is it better to deal with the Bristol team?

Let me understand. You had this problem for 25 years, it is ruining your life, and you never considered the pudendal nerve as a possible source of pain? Really?
If so I would get more than one opinion at this point.
If the underfunded NHS is paying for surgery there must some validity to the procedure. I would at least listen to what they have to say about your case.

ezer wrote:Let me understand. You had this problem for 25 years, it is ruining your life, and you never considered the pudendal nerve as a possible source of pain? Really?
If so I would get more than one opinion at this point.
If the underfunded NHS is paying for surgery there must some validity to the procedure. I would at least listen to what they have to say about your case.

It is not up to me.
I only learned about PN about a few years ago.
None of the physicians I've encountered ever brought it up, nor do they seem knowledgeable about it.
Infact, they are very hostile to any information I bring to them, especially off the internet.
During the 90s I was seen mainly by psychiatrists who were not able to find anything mentally wrong with me.
Yet they repeatedly sent me to various ones.I have even been seen by neurologists. All they did was ask a few questions, test my reflexes and then tell me that I had nothing neurological wrong with me.

The NHS are currently playing games with me.
They performed various tests and found I did indeed have a physical problem for which the urologist circumcised me.
I went to them in good faith thinking they must know what they were doing. But that aggravated my condition further.

Infact I seem to recall I requested my GP to refer me to a specialist (possibly Dr Baronowski) but he felt the local hospital had an excellent urology unit. All they did was repeat cystoscopies which revealed nothing. In fact, over the years, I have had around 6 cystoscopies now and they have never revealed anything.

Then I was seen at another hospital where they ran another test and decided the previous hospital may have done some damage. However, nothing was put in writing and I was discharged with a prescription for some meds after someone from the previous hospital contacted them because they thought I made a complaint. I just sent a letter informing them of what was found. My GP also referred me to a Pain Management clinic, but I have never heard from them.

But yes, I am doing all I can. I even went to India about 3 years ago but they were the same. The moment I told them it could be PNE, they wanted to refer me to a psychiatrist. So you see, it isn't that easy. Anyway, I am seeing my GP tommorow.

CureSeeker wrote:The moment I told them it could be PNE, they wanted to refer me to a psychiatrist.

I know of no Dr that would want to send a patient immediately to a psychiatrist just because they mentioned their chronic pain might be caused by a nerve entrapment. Nerve entrapments are a widely recognized cause of pain. It would be a perfectly acceptable suggestion to make to a Dr.

They may disagree with your assessment but they are not going to assume you need psychiatric help just because you mentioned you may have an entrapment.

Charlie wrote:

CureSeeker wrote:The moment I told them it could be PNE, they wanted to refer me to a psychiatrist.

I know of no Dr that would want to send a patient immediately to a psychiatrist just because they mentioned their chronic pain might be caused by a nerve entrapment. Nerve entrapments are a widely recognized cause of pain. It would be a perfectly acceptable suggestion to make to a Dr.

They may disagree with your assessment but they are not going to assume you need psychiatric help just because you mentioned you may have an entrapment.

You say that but in reality, it has happened to me, many times over. I didn't say they do it immediately but usually, they perform one, possibly two, investigative procedures such as an ultrasound scan or a cythroscopy, and when they find nothing, then they fog you off.

Then when you ask to be checked for a specific thing or mention your own opinion, they think that you are over obsessed (anxious is a word they often use) with finding health problems and refer you either back to the GP with a recommendation that you are assessed by a mental health professional, or they refer you directly to the internal one for assessment, or they simply discharge you. There has been wide coverage in the press and media also about the NHS keeping a vast amount of patients on anti depressants in order to avoid paying for expensive investigative medical procedures.

In the past, I allowed them to assess my mental health assuming that if they found all well mentally with me, they would further investigate my problems. But all they did is waste time, find nothing and discharge me. And one month they might say you are suffering from something obscure, then the following month they will say they can't help you.

The consultant urologist that is responsible for my circumcision said he would refer me to a Pain Management Centre when I had told him my problems had escalated. Then he said he wouldn't and discharged me. So I have never even been checked for PN, let alone diagnosed.

ezer wrote:Why don't you consult the Bristol team. They trained with Prof.Robert in Nantes. They perform surgery available on the NHS.
http://www.pudendalhope.info/forum/view ... f=27&t=584

I live in London and practically speaking, if I have to make repeated visits, I assume it would be better to be seen by someone here. But what is the advantage by going to Bristol?