Health Organization for Pudendal Education

Hi this is my first post on the forum. I started with problems about 1 year ago and have been to see various doctors. Last summer I was refered to a surgeon who listened to my history and said he was sure that I had an anal fissure. He took me to theatre twice, first time for EUA and botox injection, second time for massage. Both times I was worse afterwards. In January I went to see Dr de Mello at Wythenshaw Hospital, he listened to my history ans said I definitely had pudendal nerve entrapment. He gave me a new pain relief regime and this has helped. Fortunately I am retired so I spend about 10 hours per day in bed and a further 4 to 6 hours layed on my settee. I have some pain every day but the severity depends on what activities I have engaged in the day before. Things have deteriorated dramatically over the last year, one of my worse activities which causes prolonged increase in pain is walking, so now I go everywhere in my wheelchair sat on a specially designed cushion. Dr de Mello is having big problems getting access to a CT scanner and has only managed to do a nerve block on 1 patient. He says I am 21st on his list of waitng patients. My GP would like to refer me to a new doctor with proven success rates in diagnosis and treatment. Is this possible? I have no idea. The only other doctors I have found in the UK are in London and Bristol but I know nothing about them. If you have any information or experiences please help

Hi blue petal
Sorry your having it rough! There's many lovely people on this site who will give you good advise, but as you are in England I'm sure that my other British wil agree that we have May be only three specialist here and opinion is naturally personally divided as to who has had the better treatment! I believe ther is a excellent team in Bristol, my friend Birdlife has been very impressed, I myself found dr baranofski in london( I await more treatment) and I feel that it would be to soon to make any comment, as I have now crossed over from private treatment to n.h.s, so I am holding judgement back just yet!
I am afraid that as we suffer from a rare(so they say) complaint, we do have to travel as reading our sites you will come aware.
Please forgive me as I don't know your full history or the pain you are unequily suffering, but in my experience this kind of pain does not improve by withdrawing from life! Infact I have found the opersit! We have to keep going! I paint, still work part time, on my feet! Distraction works for me!( may be I'm lucky! All the best in finding the right specialist
Anne smith

Hello bluepetal and welcome to the forum

Sorry to hear how difficult things are for you, and that you are in such pain.

I too am in the UK. If you look at the list of doctors on the home page of this website, you'll see that there are indeed not many here in the UK. Basically there is Dr de Mello in Manchester whom you know, Dr Greenslade at Frenchay Hospital near Bristol, and Dr Andrew Baranowski in London. We have heard good reports from all these doctors, in particular regarding Drs Baranowski and Greenslade.

I am one of Dr Greenslade's patients. I can tell you that he is a consultant anaesthetist, as are most doctors who specialise in pain management, and that he is a lovely man, very kind and easy to talk to. He referred me to Mr Dixon (also at Frenchay) for surgery, and my pain levels are much reduced, although there is still more surgery to come. If you look on the forums here, you'll find posts from several people who are patients of his, all speak highly of him. And the same is true for Dr Baranowski. Dr de Mello seems to be relatively new to PN, no doubt we'll be hearing more from his patients in due course.

I think that you should make your decision regarding who to consult, on the basis of your own circumstances regarding travel. Bristol airport is not too far away from Frenchay, you may find that flying down is easier than a long car journey.

If I could suggest something - there is a book which you should be able to get at your local library, it was recommended to me by a psychologist who I was seeing for help with pain management - Coping Successfully with Pain by Neville Shone - it really is excellent and I have found it very helpful indeed. I originally got this from the library but then bought my own copy as I was referring to it constantly, I can recommend it unreservedly.

Please let us know how you get on, I do hope that things improve soon.

Hello bluepetal,
Welcome, so glad you found this forum. There is such a lot of good information here (check out the home pages as already mentioned) as well as tremendous emotional support. As you have discovered this problem is not widely acknowledged, even within the medical community, so we aim to help each other as much as possible.
I know that Dr Greenslade does have access to a scanner for diagnostic/therapeutic injections in his NHS practice at Frenchay. He used ultrasound with me however, that was for a piriformis shot. I have had 3 such treatments with him.
It's a shame that Dr de Mellow is experiencing these difficulties in Manchester, thanks for letting us know. These services are so necessary.
Dr Natasha Curran, who works along side Dr Baranowski in London was recommended to me by Dr G when my funding referral went awry, so she is also someone to consider if you are thinking to change Dr's and travel.
My hope would be that the scanner could be made available; but if my faith in the NHS was at all rocky (er yes, it was/is) . . . .oh!. . . . ~huge sigh~ . . .enough said!
As Calluna said, let us know how you get along, good luck.
Take care.
Helen