Dr demello Manchester

Hi everyone, just to ask advice. I recently posted that I had been referred to dr demello as I asked my g p to do so as I don't know what I'm really supposed to do next or who to see. Can I ask anyone out there, have I done the right thing by asking to see him? As I have never had a confirmed diagnosis will he tell me if I have p n or not? I'm worrying myself now. It's a long way to travel for me so I'm hoping Iv got this right! Any input would be appreciated .

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  • I think we all worry about these issues and I can understand your worries. I feel you have done the right thing especially as he ? trained with/ under Dr. Robert in France. if you write /type down how you feel it happened, your symptoms and how it affects you daily, I feel that will help you at the consultation. And this way you will go to the consultation prepared. I'm sure all of us on here will be wishing you well for your appointment and will be interested in how the consultation went.

  • Thank you so much, that is a lovely reply. I will take your advice !

  • Did your GP refer you on the NHS?

  • Yes he did finally. I have struggled for nearly 18 months to get to see someone so I called then two weeks ago and asked for his help. I went on to explain my Physio thought it was p n so he agreed to refer me no problem. He didn't know where the best person was for this problem so I told him about the info on here and said I knew of three doctors, demello, greenslade and baranowski. Manchester was closest so he deterred me there. Just ask outright , it's our right to access good treatment .

  • That's a good result, I don't know if your GP is in the Manchester trust but anyway, GPs have to ask their superiors for permission to refer to someone outside of the trust, or at least have very good reason to justify doing it, due to funding issues...

    Would you want nerve blocks or surgery if that's an option, or do you just want a diagnosis from Manchester and to continue with physio?

  • That's a good question! That's why I posted on here as now I have initiated it I'm worried as I'm not sure what I want. A diagnosis firstly, I will definitely continue with Physio but I travel from Cumbria to London to have it done, so it's a commitment. The one thing I was considering is the nerve blocks. Do u have any opinion on them? I'm unsure about them. But I have to try something I think .

  • I've never had them... I have pelvic issues but they don't seem to be related to the pudendal nerves

  • Either way, it's worth seeking a specialist opinion.

    Have you tried stretching or seeing a physio?

  • Iv been attending sayer pelvic pain clinic in London and Iv had pelvic floor therapy for a year now, I do stretching as well . It's the groin pain and pelvic spasms that are really painful .

  • Hi I am currently under Dr Demello and his team I have had 2 pudendal nerve block injections that do seem to help some what. He truly is a very understanding Dr and is very approachable. He recently reviewed one of my scans and has advised that I also have pelvic congestion syndrome he immediately referred me to another Dr for advise with this condition. You are in good hands hope you get some relief too x

  • That's good to know that's he's approachable! Cani ask you, did you have any tests/ examinations or scans done previous to your referral to dr demello. I haven't had anything done as my g p has always said that nerve issues were hard to treat, hence no treatment at all really other thank lyrica which does help somewhat. That's why I have paid and got treatment privately .im afraid when I go to see demello that I'm not armed with the right information .

  • I have had MRI ,ct scan etc all to rule out other things all scans came back clear apart from pelvic congestion. It was one of Dr Demellos colleagues at wythenshawe that examined me and diagnosed pudendal nerve. I had to take 6 months off work due to pain but have now been able to return after the nerve blocks he also told me to not let anybody do any manipulation whatsoever as this wont help. All the staff are wonderful at the pain clinic it's worth a try, feel free to ask me anything at all. The pudendal hope site does not recommend pelvic floor exercises with PNE ask his advice when you see him. I have met lots of other women at the clinic who all say he has given them their life back x

  • Thank you . It's such an awful journey, it's hard to know what to do and where to go for help and who to believe in. I have tried so hard to find ways to help me recover. I'm not sure I believe in a cure but even relief would be something. Can I ask how do they actually diagnose ,? Are you on any medication for it ? It's good to know that you actually get relief and it's good to hear you have been able to return to work. Do you have entrapment?

  • The nerve blocks are diagnostic and can sometimes calm the nerve completely he told me. I was on nortryptyline,tramadol and had tried other pain relief also. I am now taking none after 2 lots of injections, I still have some discomfort and have off days but nothing like I had. My husband would come home and find me in tears with the pain curled up on the sofa. I hope you too get relief from the injections as I have. I emailed Dr Demello whilst waiting for my appointment to explain my situation and he got me an appointment sooner x

  • Your reply fills me with some kind of hope that I am on the right path. The clinic I attend does not agree with injections as they say it covers up the problem, but I read somewhere that the brain and nervous system needs some respite from the pain , if the nerves quieten down as you say then it's a help . Are you able to sit? Also I would like to get my life back on the right track and start living my life again. It's good to hear that you are able to be off your medication.

  • Hi yes I can now sit. My job is mostly sitting on an uncomfortable day I sometimes use a cushion but otherwise yes. Yes the medication did cause me to gain nearly a stone I have now lost 10 pound. Please let me know hw you go on xx

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