I have recently been diagnosed with pudendal pain problems following bladder surgery. Has anybody been to see Dr Winston de Mello or Dr B?

[paula22helen]

I had a second bladder repair operation 2 years ago. The first was a TVT but the latest was a burch colposuspension . Since then I have been left with awful pain especially when I sit down. Its like barbed wire and radiates into my groin. My consultant and GP were baffled. Most of the time I have felt no one believed me. The impact on my life has been tremendous. I struggle to travel and to socialise. I am a teacher and that is a real effort. At times the pain is approach 9 out of 10.. I have finally been refered to pain management with Dr B at London UCHospital. Had initial consultation . He thinks its pudendal nerve problems. But got to wait months for treatment to start. I live in Warrington near Liverpool/Manchester. Ive read there is a specialist in Manchester. Any advice about treatments or have you had a similar post operative experience.Thank you

[helenlegs11 Volunteer]

A pain specialist in Manchester is Dr de Mello

He is a consultant in Anaesthesia & Pain Medicine at South Manchester.

Obviously it will be easier for you to see him for travelling etc BUT if you need decompression surgery for this Dr Greenslade in Bristol would be the best person to see as at the moment Bristol is the only place offering this treatment on the NHS in the UK.

Unfortunately in your case, if you found that you woke up from the last surgery with this new pain, it may be difficult to resolve with conservative treatments, like physio and nerve blocks. If the pain came on some time after the op then a these conservative measures may work very well combined with medication.

A combo of anti depressant and anti seizure drugs can work well with something like tramadol for the actual pain.

I hope I haven't worried you more talking about another surgery when you have been through so much but PN from a trauma onset often means that the pudendal nerve needs decompressing. Bristol can offer this treatment.

Take care,

Helen

[paula22helen in reply to helenlegs11]

Thank you for taking the time to reply to my post. I have been prescribed anti seizure drugs but I must be chemically sensitive as the side effects were horrid. Felt completely spaced out even on a low dosage. I will chat to my GP about Dr Winston de Mello and DrGreebslade. Its just good to know that there are others out there. I just want it to go so I can resume my normal activities. Went to the theatre last night, armed with a cushion and an aisle seat but all the time I was aware of the pain . At other times I seem to manage to push it to the back of my mind. I have heard a valley cushion helps. Going to look into that or a deep memory foam one. Thank you Paula

[Jazzwoman]

I had a bowel repair (rectocele) three years ago this week. For the first year I was in terrible pain, exactly the pain you describe. I couldn't sit, lie or walk for any length of time. It ruined my life and I was desperate. Socialising was impossible, concerts, dinner at friends, cinema. I was 56 and I felt my life was over. My consultant had no idea. She told me I was too slim and the nerves weren't healing (such nonsense). My doctor had even less idea and put me on Gabapentin. The pain did calm down and life got slightly easier. However, it came back and I have lived with it on and off for three years. It is devastating and I am so sorry you are suffering. I hear about this pain after any vaginal operation more and more and consultants don't seem to have a clue, offer no help and support or even take responsibility and do no investigation as to why this is happening. I am very angry that we are offered these operations and then just left to it but you cannot cut the vagina without there being painful repercussions for women. You have been incredibly brave having these ops. You need to push your doctor as hard as possible to see someone. If you would like to talk to me let me know and I will send my phone number. I would be so happy to offer you support so you dont feel so alone. Take care.

[paula22helen in reply to Jazzwoman]

Thank you for taking the time to reply to my post. I agree I was completely unaware of the potential nerve damage that this surgery can cause. Hind sight is a wonderful gift if I could rewind the clock I know I would not have had the surgery particularly as I still suffer with bladder problems. I just want it to go. Medication does not suit me as I seem very chemically sensitive I always seem to suffer with awful side effects. Thank you for your kind words. paula

[stenosis49 in reply to Jazzwoman]

hello, I just wanted to say I too can relate to your post, I had a rectocele repair in Feb. 2012 and have been in terrible pain since. The pain feels so intense and lasts for hours . this has ruined my life and I strongly agree with what you say I feel the same as though I carnt socialize and was this my life now. have been on pregabalin for at least 12 months, what a nitemare this has become.

[helenlegs11 Volunteer]

Another thing I would suggest along side the medication suggested is cognitive therapies and pain management. This is something that can offer help in the short term although many people do need to experiment with different drug combinations to find what helps best. As Jazz has suggested Gabapentin is one prescription to consider but used alongside an anti depressant like Cymbalta is best for nerve pain.

I would always suggest starting one (anti depressant or anti seizure) and see how it goes because if you start both together and have any side effects that don't resolve and/or outweigh any beneficial effect you won't know which drug is causing the problem(s)

[awatterson2]

Hi paula22helen I'm alfie I have been under dr de mello for 4 years and waiting treatment for nerve block under ct scan for just over 2 years he says a lot but nothing ever happens all I do is be told there are others in front of me and I'll have to wait x we need to find someone else to help us both . I sit sideways drive a hands only car as I couldn't go on with a normal car due to loosing feelings in my legs sex is a thing of the past do you have any help with my issues please feel same as youxx

[Kphee21 in reply to awatterson2]

Hi did you finally get nerve block done i am on waiting list how long did you finally wait and did they work. In agony couldn't stand years of this pain x

[lucylocket2222]

Hi Paula I don't live far from Warrington. Can you let me know how it goes as I have similar problems and have had for many years. Is there anyway I can contact you privately. Mo

[Mohammed1985]

Hi I am wanting to go and see him I have been looking for someone to diagnose me for the last 13 years I found his details through

pudendal hope .org website

Is he private or can I see him through my gp on the nhs

[Moomoosmum in reply to Mohammed1985]

don't know if anyone answered this question? i'm lucky enough to be going to see him soon, no he doesn't have a private clinic, he's at Wythenshawe hospital, manchester

[Mohammed1985]

Pn is a horrible pain and a horrible existence every day is difficult I can't imagine this pain on even my worst enemy I swear