Pudendal nerve block

[Kelly-paino]

After over 8 years of chronic nerve and muscle pain throughout my intimate and coccyx area I have finally found a Dr who thinks he may be able to help me. Going into Wythinshawe Hospital on 6th April to have a pudendal nerve block. Fingers crossed that it provides some form of relief after all my years of suffering Has anyone else been treated by Dr DeMello and his PTs at Wythinshawe?

[Cardinal]

Good luck! I hope you will have good results. I also have had the same pain for 5 years. I would love to know if the pudendal nerve block works. Keep us posted. 

[Kelly-paino in reply to Cardinal]

Thanks for your reply x I'll let you know how I feel after it

[Rmoretz in reply to Kelly-paino]

Let me know  if this works.

[padgets]

I have had nerve blocks done at Wythenshawe after years of pne it is critical the needle gets within 2mms of the nerve ideally ct guided.I have just returned from decrompression surgery in Bristol under the NHS but still too early to see any improvement.Nerve blocks are only a diagnostic tool and don't give long term relief

[Kelly-paino in reply to padgets]

ONE is most definitely the pits to try to live with. I am aware that it will only be used automatically but am just hopeful now that maybe with pelvic physio and massage that I may be able to get my pain levels reduced.

I have coped extremely well over the past 8 years despite struggling with horrendous depression, being a mum to my young son and continuing to work as a nurse, so hoping that it wont make things any worse

I will be praying that the input from wythinshawe will help me a bit x

[Cardinal in reply to Kelly-paino]

Although I haven't had the pudendal blocks done, I have had a lot of physiotherapy (in the US), and it really does help.  I have PN, though, not PNE (which means your nerve is actually entrapped, which usually is only the case as a result of a previous pelvic surgery).  PN is usually due to dysfunctional connective tissue or hypertonis muscle impinging on the nerve, and in that case, physiotherapy can help a lot.  Honestly, though, it took me going through a few therapists before I found one that I liked.  It sounds like the place you are going is well regarded, though.  Just don't be afraid to look for a new therapist if you don't like the first one you are given.

[Kelly-paino in reply to padgets]

That should have started as PNE...damn predictive texts!!

[Hidden in reply to Kelly-paino]

Yeh! that had me puzzled. LOL

[Jei-Carter in reply to padgets]

right... diagnostic.... Then there is the steroids that they love to pump into us... I lost count of how many roid shots i was given...  they love ta  "Pump U Up" as they said on SNL..... 

[loglegmomma in reply to Jei-Carter]

If it's not steroids, it's NSAIDS.  I've had more than one doctor tell me they are as much diagnostic as therapeutic.... while meanwhile WE suffer the side effects

[Jei-Carter in reply to loglegmomma]

yea i remember those countless anti inflammatory injections,,, was a weekly thing for awhile almost

[Hidden in reply to padgets]

Hi padgets, please could you say how where you diagnosed with PNE. Did you have MR Neurography.  I am hoping to go down the same route as you but want to have a define diagnosis first.

[Cardinal in reply to Hidden]

Check out this article with the experiences of two of the best doctors in PN/PNE.  Dr. Hibner seems to think that the MRNs aren't of much value, but that there are specialized 3T-MRIs that they look at that sometimes help give some information.  pelvicpainrehab.com/pelvic-...

[Jei-Carter in reply to Cardinal]

i had surgery with hibner in arizona... so it failed of course... well they put in a pump that put some kind of medecine into the sight... it was a big ball with a tube going into the buttock... well after like a week and a half the whole surgery got insanely infected... i was at my apartment when the whole surgery scar burst open ... the sheer pain made me pass out and there i was bleeding out... my friend just happened to of been on the way over... he found me on the floor with a pool of blood under me... almost killed me....

[Cardinal in reply to Jei-Carter]

I will keep that in mind if I ever consider having Botox with him (I don't need surgery). This is the first time I've heard of one of his surgeries going wrong. Besides the infection, did the surgery at least improve the nerve pain a bit?

[Jei-Carter in reply to Cardinal]

nope... another high stakes gamble snake eyes

[Jei-Carter in reply to Jei-Carter]

hibner was a nice man... but after the surgery i was given no support... just like every other pudendal doctor... Dr Antolak was a nice old man... wish i had lived in minnesota near him when he was practicing...  if a surgery fails they dont want it to be on the record... so they say well it might just take up to 6 months... if anything they dont want a negative score on their surgical record... so just want u to wait till there is no record of u at all

[Cardinal in reply to Jei-Carter]

From everything I read and heard, most people who have this pelvic nerve pain don't actually have an entrapment. I've heard the only time it could be an entrapment is if someone had a previous pelvic surgery and there was a screw up and the nerve got entrapped between ligaments. I've heard and read that the problem is usually myofascial pain and the connective tissue is impinging various nerves. That is definitely my case because Besides pelvic nerve pain, I have myofascial pain all over my body from a car accident and I have a huge mass of connective tissue in my pelvic area that's not supposed to be there. And every one of my pelvic muscles are very tight. So I definitely don't have an entrapment between ligaments or other structures. In getting my connective tissue worked out and it hurts like a bitch.

[Jei-Carter in reply to Cardinal]

i hear you.. PN problems are so varied... For so many it is the pudendal itself damaged.. which is more of a death sentence than entrapment seems to me... My problem is entrapment and not actual damage... Is why every time the muscles surrounding my pudendal nerve right side are stopped by the one injection filler did... the 100 blocks of my L4 dorsal nerve root... and the one rhizotomy that stopped that nerve for a month stopped the screwed up muscles from pulling and streching around the pudendal too much... My right side muscle that is responsible also pulls even the left side tissues too much...  when the right side is stopped even the left side is released... so they are connected somehow as well... is all because the right side was made to grow too strong by my failed L5 S1 sacrum fusion... 

[Jei-Carter in reply to Jei-Carter]

hibner was nice... we are still just living practice subjects .... I think of pudendal surgery patients as little more that living cadavers for surgeons to do medieval level pelvic surgery knowledge attempts on.... since we are technically alive we can say the once in a many times that yea that worked or helped... it a crap shoot though... a big gamble... just test subject really though.... Wish there was a pudendal bank where they studied Pudendal Victims... it is a waste we cant be studied... It is morbid but there should be a bank of frozen Butts somewhere lol... that is all they need of us after all... would be alot bigger freezer than cancer banks but it is needed for surgical knowledge to progress.... not very tasteful but would still be as necessary for us are brain banks are for brain diseases....  

[Wonderer in reply to Cardinal]

I was getting ready to have a 3-T MRI of the sacral plexus where I live, but after talking to the manager at the radiology, she told me that you wouldn't be able to see the nerves themselves. So I am opting for MRN. I have to travel about 4hrs to get it done, but if it gives me atleast a diagnosis of exactly where I'm having the problem, I would think it would arm doctors with better knowledge about how to treat it. We shall see...

[Sedgie99]

Hi   I also suffered from lower back pain which as due to nerves being trapped by bones Spurs which had grown to encompass the nerves.   My problem was diagnosed in Perth Western Australia where I live.  The neurosurgeon tried various methods by of injections but unfortunately this did not work for me.  I underwent neurosurgery for Spurs to be removed and a metal plate insert at L5 to S1 which has helped.   I also have been fitted into my back a neuro stimulator which I can switch on and off as required which helps with my back pain thereby allowing me to deal with my pain without pain killers 

I wish you a good result and look forward to hearing from you 

[Kelly-paino in reply to Sedgie99]

Glad to hear that you have been able to receive some help to deal with the constant pain. It is such a burdon to us! I'll keep u updated. U r in my prayers n thoughts xxx

[Jei-Carter in reply to Sedgie99]

bone spurs must be harsh... can empathize... My condition was caused by the right L5 transverse process that fused into the sacrum.... That caused so much downward pressure that it made the right sacroiliac joint feel like a knife was permanently jammed in between there.... when i got the process amputated it released that pressure.  Too late for the PNE though... all those years caused the muscles to grow all wrong... imbalance in the pelvis is one dangerous thing...

[Jei-Carter in reply to Jei-Carter]

so my PNE was cause by a L5 S1 level vertebra fusion failure...  I feel your pain Sedgie... not bone spurs for me though... they are evil things... devil designed...

[Hidden]

Thanks cardinal for sharing this article. It is good to read that there are Doctors out there that are dedicating there time to PN / PNE sufferers and making recommendations for better ways to assess, diagnose and treat PN / PNE. That is what we hope will one day be common practice in our hospitals and patients like us being wrongly diagnosed or left undiagnosed for years will be a thing of the past. 

[Jei-Carter in reply to Hidden]

i had to diagnose myself over the first 2 years... no help from any doctor.. i had to tell them what to do,,, Doctor Jei Carter,,, advancing pudendal knowledge through guinea piggery lol

[Pafen]

How did the nerve block go?

[Kelly-paino]

As I was on my period, when I went in for pudendal nerve block this Wed I couldn't have it done. Was so upset n just broke down in the middle of the clinic! The poor nurse didn't know what to do with me poor woman x

If I would've had a pre-op call from one of the team I wouldn't have wasted mine n my fiances time driving 30 miles to attend. Of course I fully understood why once it had been explained to me but felt angry that I wasn't  warned about it.

Got another appointment for 26th April so fingers crossed it will go ahead as planned this time xxx

[Cardinal in reply to Kelly-paino]

That is ridiculous that they didn't let you know about that. I've actually never heard about that ever before - I wonder what their reasoning could be. Sending good wishes. Please don't get your hopes up too much about the block, though, as to be honest, I've never heard a success story about a pudendal block (though it is a good diagnostic). However, physiotherapy is known to help a lot so I bet you'll do well after physiotherapy

[Kelly-paino in reply to Cardinal]

There is a risk of the injection sites becoming infected by the blood apparently so they won't take the risk. Was so let down as I had to put a lot into place to go to the appointment. Partner's time off work n someone to mind my son

Looking forward to starting pelvic physio n the deep tissue massage even if it is gonna be sore. Long as I'm heading in the right direction anyways. 8 yrs of zero help n just trying to cope has been pretty bullish but I continue to smile n try n get on with life. (Try not to snap at people or feel sorry for myself even if all I can think about is the gnawing pain!!)  

[Cardinal in reply to Kelly-paino]

That sucks. I would have thrown a fit. 

[Kphee21 in reply to Kelly-paino]

Hi I was wondering how you went on at hospital I have a referral to wythenshawe hospital 

[Rmoretz]

Let me know if that works.

[Kelly-paino]

I had a pudendal nerve block last Tuesday n it helped quite a bit for the first 8-10hours but slowly n surely the spasming nerve pain in the muscles around my coccyx n perineal area has begun to return. It's not as severe I must admit so definitely some improvement, so better than the level of pain I have endured for the last eight years!

Think the pelvic floor PT is going to be the main thing that has the best outcome for people with pudendal neuralgia symptoms so looking forward to hearing about my appointment with Fiona at Wythinshawe. She has excellent reviews from others who have received help from her.

Day to day pain levels are now more like a 5_6 also since I have been doing the pelvic floor stretching exercises recommended in the new book I have purchased by Amy Stein. Can definitely feel a bit less tightness within my muscles. I have always maintained daily stretching to help deal with chronic pain since I attended the Walton centre's Pain management Programme in 2011 so am no stranger to it's benefits. This however, is more focussed on the tight pelvic floor muscles n trying to learn to "let go". Easier said than done but going to keep it up as it's another tool to use in managing....every little helps