New diagnosis

[ChrisUK]

Hi, hope you can help.

Recently diagnosed with pudendal prob although not totally convinced, same doctor said not few months ago. Got a few questions I would really appreciate if someone can answer:

- have been pencilled in for nerve block, signed disclaimer but later noticed risks were 'could make pain worse & infection' - what are chances of this. Apparantly will be done with new ultrasound method.

- he mentioned as well as diagnosis that there is 50 percent chance pain will be cured. Sounds great but vastly different to what read on other sites. Is this true?

- he made diagnosis by pressing external pudendal points on bottom. This is same as he did prev and because no pain dismissed pudendal. This time Pressed same points still with no pain but he ended by pressing point to left and right of sphincter and was painful. Four hrs on pain pretty bad still, burning sensation. Does this confirm other peoples diagnosis and could he of made things worse.

- he did say there is chance still could be myofacial pain. Has anyone had any exp of this condition. Want to keep open mind.

Many thanks

-

[carolynm]

Chris,

I just had 2 ultrasound-guided nerve blocks myself...was numb for 30 minutes in perineum but after that the pain returned. He used a small amt of cortisone so I'm hoping for it to work. The folks on this site haven't had much luck with them for long-term relief. I did have burning that evening but it was gone the next day. And, I wouldn't worry about the infection situation; I"m sure they will use sterile technique and there will be no problem with that.

Welcome to the group.

cari

[calluna]

Hello - no experience of myofascial pain, sorry - but not to worry too much about the nerve blocks, and definitely don't worry about the risk of infection - that is a standard caveat. Nerve blocks are quite a useful diagnostic tool - if you get any pain relief at all, then the problem is indeed with the pudendal nerve. However a negative doesn't rule it out completely, because it is always possible that despite the ultrasound guiding, the local anaesthetic didn't reach the right place.

Here in the UK some doctors have been quoted as saying that 70% of PN patients get long term relief with nerve blocks. In the US this doesn't seem to be the case, we have no idea why.

One thing you do need to be aware of is that after the local anaesthetic wears off, you may have a bit of a flare for a few days.

Could you remind me which doctor you are with?

[Violet M]

Hi Chris,

The 50% chance of cure seems high to me based on my experience moderating the PNE forum for 7 years. It may happen but if it does, we rarely hear of it and a report several years ago from the Houston team on cures from nerve blocks seemed to agree more with what we hear on the forums than the 50% cure. But we aren't out there in the trenches with the doc who gave you this info so I'm not going to second-guess what he is telling you based on his experience. I have heard good things about the ultrasound method so hopefully that will work out for you.

Regarding the risks involved, I know of several people whose symptoms have gotten worse from nerve blocks and their new pain/symptoms have yet to resolve. It doesn't happen very often, but when you're the one it happens to it can be devastating. If you are still trying to get a diagnosis and are thinking you may have to go the surgery route eventually, you may have to take the risk of a limited number of nerve blocks but for anything more than that, I question their value.

In answer to your question regarding pressing on the nerve -- chances are the increased pain will be temporary. There can be variations in anatomy so I can't say for sure about the results of your exam. My guess is that if this doc is informed enough to know how to do an ultrasound guided PN block he's also educating himself on where to press on the nerve in order to make a diagnosis.

Good luck to you and please let us know how it goes.

Violet

[helenlegs 11]

Hi Chris,
I guess it's a question of what alternatives are there. Getting the nerve block may be the best option available if you have given every other conservative option a try and you want a more decisive diagnosis.
I had botox at Frenchay with ultrasound and all I can say is they are ultra careful. There has to be a disclaimer of course. The best outcome is that the problem is myofascial and the shot stops any nerve irritation, I doubt the 50% success rate however but I hope it works that way for you.
Let us know the outcome if you decide to go ahead. When are you pencilled in for?

[ChrisUK]

Hi Helen

Thanks for getting back. I hear that the 50% improvement from block is optimistic from others but Dr G was quoting Dr Robert in Frances stats although have read myself these are floored. Am due to have block on 29th Sept in Bristol. If it is myofacial pain would this rule out pudendal? If so guess it could give a false positive to a pudendal prob if takes pain away? At present it feels like it is going down the sgy route but after 5 diff procedures that nearly all have made things worse feel a little hesitant unless i know 100% that will help.

Thanks again

Chris

[Violet M]

Chris, I wish there was a perfect test to determine if the pain is primarily myofascial or nerve pain. Temporary relief from a nerve block containing marcaine is just one of the tools to determine if your pudendal nerve is the culprit. If the block causes loss of sensation in the distribution of the pudendal nerve and relieves your pain for a short time that points toward a diagnosis of PN but the docs look at the whole picture -- not just the nerve block results.