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?
Hi CureSeeker
Dr Greenslade and his team have been out to Nantes, were I believe they pioneered the surgery for this condition. I know Dr Greenslade is a Pain Consultant, but he seems to have a special interest in this area and he and his team have progressed fast in gaining knowledge in this area. I would have no hesitation in going back to see him for further treatment if and when I need to. I live in Yorkshire and the distance from here is about the same from London and Bristol.
I think surgery is a big decision and you need to get all the facts you can.
Good luck with everything.
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
Both the team at London and the team at Bristol are getting good results. Both also offer treatment under the NHS, of course.
There is no shame in being referred for help with mental health. Unfortunately there is still something of a stigma attached to this, but the truth is that mental health problems are illnesses just as much as physical ailments. i think that if more people were open about it, there would be more awareness of just how common this is in our society. Something like 25% of the population need help with mental health issues at some point.
There is also no shame attached to needing anti-depressants. Long term pain can be very hard to deal with, and anxiety and depression can become real issues Taking medication to deal with this, and to improve your quality of life, is then entirely appropriate. You should also bear in mind that many anti-depressants are also used for relief of neuropathic pain, a lot of people on this board are taking them, myself included.
By the way, you should bear in mind also that Pain Clinics are not usually diagnostic centres. For referrals of any sort, and for help with diagnosis of any condition, you should see your GP.
Thank you Peaches and Calluna. I saw my GP this afternoon and he is willing to refer me to UCL Hospital where Dr Baronowski practices. My GP told me he can not refer me to Bristol but only to London hospitals. However, urologists can do this. But since I am currently not being seen by a urologist, I will go with the London option, at least for now.
BTW - my GP thinks my pudendal nerve was checked by urologists. But to my memory, it has never been done, which I told him.
Regarding psychiatrists, should someone have the need, ofcourse they should seek help from where ever they can get it. But in my case, they have never been able to establish or diagnose that the source of my chronic pain has a psychological basis. Further, they never even prescribed anti depressants or meds for me. To be honest, I feel they never really made enough of an effort to help me. They simply discharged me. (I was only told by a neurologist once to take paracetamols when ever I had pain - which is not a good idea because it is constant for me and I don't want to damage my kidneys.) If anything, once I was being seen again by a urologist afterwards, following a series of tests, they found that I did indeed have a physical problem. But that is not the full story as I am still suffering.
Anyway, thank you all for your help and advice, I think things are (at last) beginning to move in the right direction. But it's early days yet.
I saw my GP this morning to give him the details for my referral. Well today he told me he can not refer me to UCLH as that is outside his area and that only a urologist can refer me there. So he will instead refer me to the Chronic Pelvic Pain unit at Chelsea and Westminster Hospital. I will see how things go. But if needs be, I think I will arrange for a private consultation with either Dr Jenner or Dr Baranowski as a second opinion.
Your GP CAN refer you anywhere infact and he/she will know this. I had similar problems, it's almost as if they want to be obstructive in helping or getting help for you.
They may be able to help you at the chronic pain place in Chelsea but Dr Baranowski will definitely be able to help you if you have PN.
All your GP needs to do is say your circumstances are exceptional as Dr B is one of 2 pain consultants nationwide who is an expert in this field.
I had the same battle, I still don't think my GP believes me (I couldn't care less now, at least I am getting help)
She wrote to my PCT for a referral to Dr Greenslade (at least she did do that , but under sufferance and with 'very little hope of sucess'), it was refused, so I asked her to appeal. She would not and said I had to.
My refusal letter from my PCT clearly stated that my GP needed to appeal, so I asked again, she refused . . . again. I spent all day bacwards and forwards between the PCT and surgery gettimg absolutely no where. Total Stalemate ! She was wrong but so bomastically stubborn and of course I could not possibly be right, could I . . . . SHE is the fantastic and clever GP after all. (who to be honest has NO clue and had told me to go to pilates) She still thinks my pain is from my spine AAArgh!
Eventually I spoke to the head of referals in my PCT who was fantasticly helpful and understanding. He told me the 'magic' word EXCEPTIONAL but of course you have to get past the first stage 1st ! !
You could do it privately to get a head start as you suggested, I did but my PCT's refusal was based on the fact that they do not fund what is esentially private medical treatment. If you do go this route make sure that you tell your GP that you are having to go privately because of your EXCEPTIONAL circumstance and their obstinance. Maybe sugar coat it a little. Their 'inability' to refer you to someone who CAN help.
You have made a breakthrough with self diagnosis and finding this site I hope the rest goes well for you from here.
I went back to see my GP on Wednesday (I HATE to go now) and she had NO idea that the appeal had been sucessful and I had been seeing Dr Greenslade since September/ Maybe she will start to believe me and take some interest now . . . . . cow ! Hmmm, and other farmyard animals might fly !
Take care.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Thanks for the support and encouragement Helen.
Yes, I will have to see my GP again.
It's just so much hassle though.
I will keep you posted.
Take care.
