Help with Pudendal Nerve Neuralgia

[Cook5]

Pudendal neuralgia. Hi, can you help or share? It seems that I have problems with my pudendal nerve and this roaming, changing pain is not good as some will know. I have a good physio and will investigate but I wonder what others have done with this. Physio thinks PD is most likely and it fits with S3 nerve perhaps.. As a male I know less of us have this issue but I have all the classics signs other than toilet and sexual issues are all ok. It's just this changing, random daily pain I can't fathom. As for sitting! Recovering from a full foot reconstruction is not helping either and only Tramadol seems to help but I can't stay on that. Just for good measure just had a huge fluid blister on heel so can't walk as I need. Any ideas or is it the scrap yard? I did wonder about nerve blocks, but can such work as various areas affected. I know this will need to be a private thing with the NHS as it is and frankly before Covid, our local people are not great. So I wonder about costs.

Any comments most welcome on this journey that started two years back with suspected Ischeal Tuberosity and many detours, I can see now why, but it is not that.

Thanks

Tim

[Yorkdafs]

Hi TimIT sounds like we’ve been on the same journey. I have the same as you for nearly 3 years now. I think Cycling finally did it for me. I know they do surgery in France but the results are quite poor. I tried nerve blocks and don’t think they helped much. I am now taking pregabalin twice a day which helped me get some quality of life back but I still can’t sit normally. It is a challenge to mental health as its difficult for others to understand how debilitating it can be. I can empathise but it’s not more positive news.

[Cook5 in reply to Yorkdafs]

Hi, good to hear from you.

I can only think that as my body was totally out of kilter due to a very bad left foot that perhaps was just waiting to blow up and did, that I am 'trying' to recover from now and, it's a big op I have found out! Somehow I may have put this nerve out or did something. It's really out of the blue but having had several years of this you can waste lots of money and get nowhere I have found. There are many people willing to try and help but also take £40-50 a shot. I am past that now at least I know.

It looks, but I need to get this confirmed, that some form of nerve block or intervention will be needed. It's rather shocking the UK is terrible in this area for the most and many go to Nantes. I do not know but post Brexit and with Covid that might be interesting to arrange from the UK. I have not heard about how successful it is but only its the best place and you will really struggle to get such in the UK.

Yes, few men I know have any idea about pelvic pain!

Strangely as we first investigated Isheal Tuberosity (sitting bones) I was on Pregabalin but it did nothing at all. I guess we are all different. Yes, even if it can't be 100% sorted that I guess is likely, I really need to have an improved quality of life. Sitting even for say 15 mins is painful and enough and this is restrictive as you will know. So the quest goes on! Shame I am not a millionaire here. Take good care. Tim

[RobertVerde]

I have had this condition for about 3 or 4 years - the time runs together after a while. You should read this book - A Headache in the Pelvis" Gave me an idea of what this is all about and how to not only treat it but have a life. Here is a site that helped as well: pudendalhope.info/ - I do daily exercises, self PT when necessary and take about 75 mg of Pregabalin at night - this has been a very small price to pay to have my life back - there is alight at the end of the tunnel if you are diligent!

[Cook5 in reply to RobertVerde]

Hi Robert, many thanks for that.

Yes, time runs on and life slips by so we have to learn to live the best way we can. I'll have a search for that book. Thanks for the encouragement. I am not one to give up, but realise even in the best of times some medical conditions take years to 'perhaps' be resolved.... and now with Covid it will only be much worse

I'll get hold of that book, check out Bristol and if better or necessary, try and visit Nantes. Sadly I will not have years to wait on the NHS or dealing with people who have little real knowledge esp if you are male that would be the outcome of doing little.

I'll have a search on Amazon later for that book. Mind you, the head is fine! (well, other than a lot more hair perhaps!)

thanks x

[RobertVerde in reply to Cook5]

I live out in CA but I went to a doc in Cleveland - Daniel Shoskes - he specializes in PN issue. my.clevelandclinic.org/staf... - not the best bedside manner but knew what my issue was and how to treat it immediately.

[Cook5 in reply to RobertVerde]

Thanks Robert. I have ordered a copy of the book. It's always good to read I find and see what gold nuggets you can find. This will then hopefully help me explain to any consultant as I guess in many ways only we can say how we feel. Hey, years ago, I recall, thinking you just went in and saw any doctor and they magically would know what was wrong and how to treat it! That's expecting just a little too much I now know but equally one must listen to those experienced.

This is a good website and support group I have to say. You do not feel quite so alone.

Hope things in Cleveland are ok and improving.

x

[Pattimoe in reply to RobertVerde]

Really? This is news to me. Glad to hear of a doctor who specializes in these conditions. 10 yrs ago I went to another doctor at the Cleveland Clinic and he wanted to saw of my long tailbone‼️

[RobertVerde in reply to Pattimoe]

This doc - Daniel Shoskes - he knew what I had as soon as I explained my symptoms - started me with his PT for a few sessions - then I went back home and found someone close to me that understood the condition - luckily she was located close to my home. I still get flare up now and then - I se her once a month for "tune ups" as well. I am guessing its something that will be with me the rest of my life.