Health Organization for Pudendal Education

Andy_Pablo, this is insane.
How can you possibly consider pudendal nerve decompression surgery at this stage? Have you read the thread regarding the poor surgery success rate? The complete lack of success stories from Bristol surgery patients?
You have many signs that are in line with non-bacterial prostatitis. Why wouldn't you explore that first?

Your riding history is not exactly exceptional. By that logic, every cyclist competing on the Paris-Roubaix should finish the race suffering from PNE.
You mentioned that your pain started after being very distressed over your failed 13 year relationship. You may not want to hear it, but stress at the onset or preceding chronic pain is not uncommon and should be taken in consideration IMO.

It came about from a mixture of cycling & then heavy lifting. Thinking back, it became unbareable the day after lifting washing machines, etc down lots of stairs... Being less stressed has helped reduce things lately...

I was unaware of bristol surgery having a poor success rate...

I think I need to investigate things further...

Thanks

I am in the UK, and have done a HUGE amount of research on this PN stuff. DO NOT have surgery in Bristol, try Dr Ruth Lovegrove Jones PHD in pelvic pain physio Southampton. Maria Eliot Harley Stree Physio. helen Keeble Chelsea Physio start off with the least invasive, I have had nothing invasive at all and I am hugely better than I was a year ago.

Andy_pablo I also think you should try some other ways before surgery. An thorough and entire PT examination etc. is essential.
I am also struggling with penile/perineum pain, can imagine what you have been through...
Surgery is surely a way for some minor portion of pelvic pain sufferers-those who have one point of entrapment. Most of the sufferers have general dysfuncional issues. To differ between those two groups of patients is the most difficult thing for doctors. Diagnostic process must be reevaluated.

I had surgery seven weeks ago as things had become unbearable & trapped me in my flat like a prisoner. Mr Dixon at The Spire hospital in Bristol carried out my surgery with Dr. Greenslade as anaesthetist. Mr Dixon advised me that they had detected & rectified a trapped nerve, so that is a positive. The recover period to know if helps was between six months to two years, which is daunting, but hoping it helps sooner. Have also been advised it might end up being worse, however, as things were, had to at least take the gamble, for both my physical & mental health... Now its simply a waiting game.

Seven weeks post surgery & things fluctuate wildly, but overall, I am in far worse pain than before, across a broader area. Also struggling with mobility & anything other than laying flat on my back at the moment. Have had some moments that make me think things might get easier, but then I have moments where it feels like I will never recover enough to have some form of life again...

Have to see my surgeon again in October, so it will be interesting to see what we have to say to one another. I will update this diary in the future. Hopefully it will be positive news...

Hi, i just read you had the surgery done in Bristol and wanted to wish you good luck with your recovery. I saw Dr Greenslade last week and he gave me a nerve block which i think has now stopped working as today was pretty ghastly. I wish you well and keep fingers crossed for you. Kind regards, Cintapoppy

Hi Andy,

If it's any comfort to you, I was initially worse after surgery too. Are you on some extra pain meds to help you through this temporary post-op period? I was on narcotics for 9 months after surgery.

Violet

Cintapoppy wrote:Hi, i just read you had the surgery done in Bristol and wanted to wish you good luck with your recovery. I saw Dr Greenslade last week and he gave me a nerve block which i think has now stopped working as today was pretty ghastly. I wish you well and keep fingers crossed for you. Kind regards, Cintapoppy

Dr Greenslade is lovely. Very friendly. I also found the injections only helped for a very short period, but it did give a diagnosis. I wish you good luck with your treatment.

Violet M wrote:Hi Andy,

If it's any comfort to you, I was initially worse after surgery too. Are you on some extra pain meds to help you through this temporary post-op period? I was on narcotics for 9 months after surgery.

Violet

Hi Violet. Yes, it is comfort to know that being worse is normal. Things are fluctuating quite wildly at the moment. Can have some periods of mellow-ish pain & then it becomes unbareable for no reason. Yes, I am also on narcotics. They do actually help.

I have read a lot of your posts on this forum Violet & I would like to thank you for giving me hope that this "might" become manageable. The fact that you have a pretty normal life now really does make me think that I might be ok in the long term. Im also realistic enough to know it might not be ok also, but where there is hope & all that...

Hi Andy_Pablo, i was just wondering how many nerve blocks did you have before the surgery and how long the effects lasted? Mine seem to last only about 4 days although in all fairness i have to say that the 2 hour journey didn't help and my pelvis was badly out again. Things didn't improve after my osteopath realigned things.. Dr Greenslade booked me in for 3 more and then proposed surgery. Also, did you find the nerve blocks very painful at the time? I squeeled like a skewered piglet when he was doing it and was terrified he would hit or damage a nerve. Sorry about the many questions, but i am just surprised that the nerve blocks had such little effect and am wondering whether i am the only one with that experience. Hope you are having a good day today. Best wishes, Cintapoppy

I had three nerve blocks & they only lasted around 36 to 48 hours, so I think they are only really for diagnosis of nerve entrapment. My injections werent overly painful apart from one where I think it touched a nerve as a pain shot down my leg... I wish you well with your treatment...