Health Organization for Pudendal Education

Hi all

I'm a male who has been suffering for some years with pelvic muscle tightness and soreness and irritation in the urethra. I've had loads of treatments/tests etc over the years and have had extensive physio for the tightness in the pelvic floor. It seems that whenever the muscles are relaxed and not causing pain, the urethral symptoms go mad. I've had a couple of diagnostic injections done recently in London and last week I had bilateral injections into alcocks canal using CT scan.
Initially, for about 6 or 7 hours this made me pain free. However, since the day after the injections the pain (soreness and irritation in the urethra) has gone absolutely sky high. Its so bad that I've got constant soreness and irritation along the whole of the urethra in the penis and this extends right down the centre of the scrotum. Its absolutely awful. The only way I can describe it is that it feels raw inside.

I went to my GP this morning who has given me some morphine to take 4 times a day but even this isn't really doing much. I can't take anti-inflammatories as they wreck my stomach.

1. Is this flare up a good sign?
2. How long should I expect it to last?
3. When it settles, should I see an improvement (presuming the injections have hit the right spot)?

Many thanks

Neil

Hello Budgie

I had two CT guided nerve blocks with injection of steroids and lidocaine two months apart. In both cases, like you I experienced relief for a while and then a lot of discomfort. I am not a doctor and am only giving you my own experience. In the first injection, I definitely experienced an increase of pain in the same areas I experienced pain before. In the case of the second nerve block, I really experienced no immediate flares but my symptoms have been getting much worse since the second injection and I can find no reason for this, other than the injection.

In my case, I experienced worsening pain where I already had pain before the injection. What is different in your case is that you appear to be experiencing symptoms which are totally new. I would contact my neurologist. Going back to the radiologist who did the injections isn't going to help you. They will just shrug and point to the waiver of liability you probably signed before you had your injection.

This is just my experience. Hopefully, you are feeling better, if not, I would go back to your neurologist.

Best wishes,

Bathsheba

Thanks Bathsheba

I'm not actualy experiencing different pain/soreness from before; rather an extension of what I had before the injections but about 1000% worse. Its all still in the urethra and probably being referred along the centre of the scrotum due to it being so bad.

My pain management specialist who did the injections did say to expect a possible flare up of pain but I was just trying to gauge whether such a big flare up was a good sign and how long it was likely to last.

Appreciate your reply.

Take care.

I don'T think the massive flare is any sign but the initial relief is because that says they hit the problem spot. This is generally what the nerve block is for as a diagnostic. As for the length of the flare I think I remember others saying it could last 2-3 weeks so hang in there! Sorry for that bad news. Of course everyone is so different, maybe your flare will subside sooner. I do hope so.
Janet

It is difficult to set any prognosis. I am also heading for bilateral Alcock infiltration and am really worried.
I guess that the fact that you were 6-7 hours completely painless indicates that pudendus is involved.
On the other hand, the bilateral pain indicate more serious chronic inflammation than classic entrapment.
My case is very similar - doctors say that bilteral entrapment is very rare and if this is the case, one side dominates.
To have perfectly balanced bilateral pain does not indicate true entrapment.
The question is what to do with chronic inflammation of both pudendal nerves?
I tried everything, but pain still persist /although I had good period after hypogastric pelvic block with no flare up/
Matt

Thanks Matt

Yes, I am of the same opinion that having a pain free period after the injections indicates that there is some link between the pain and the pudendal nerve.
I can understand that bilateral entrapment is very rare but unfortunately I don't have one side that dominates. My pain is in the perineum, around sphincter (both muscle pain/tightness) and also in the urethra (nerve type pain). All if which are central!

My consultant has suggested I take Duloxetine which is good for the neuropathic pain and also the muscle tightness. I'm a little concerned that there are serious withdrawal side effects documented on the web. I know I can't believe everything I read so have tried to take a balanced view but it is worrying. Saying that, I can't take them with Tramadol so need to wean myself off those...and that isn't proving at all easy!

Good luck with your Alcock infiltration. Let me know how you get on.

Budgie, my symptoms are very similar. Bilateral pain with no clear dominance of one side (maybe right side is 10% worse, but this I dont consider to be significant), mild pain in perineum, no anal/rectal pain. main scope of the pain is in penile shaft, near the base of penis.
My urologist is still insisting, that these symptoms are fully compatible with non-bacterial prostatitis, given that my prostatitis was painful and sensitive (as well as pelvic muscles). there is clearly some pathology/aggravation related to mechanical exposure of that tender region (initially the pain came day or two after prolonged sex and faded away before it became chronic).
Some irritation of pudendal/dorsal nerve is clearly present, this is 100% true. on the other hand, bilaterality of symptoms and the fact that pain is not positional (not related to sitting) goes against classical PNE. I am 100% confident that whatever it is, my problem is distal from Alcock canal. somewhere in pubic ramus region or elsewhere. 19th June I am scheduled for bilateral Alcock block at dr. Aszmann, so we will see.
Budgie, did you overcome that flare-up from the nerve block?
Matt

flyer28 wrote: 19th June I am scheduled for bilateral Alcock block at dr. Aszmann

Good luck with that Matt, hopefully some answers at last.

Also wondering how you are now budgie? I take duloxetine and do get on well with it. I think this above anything else I have tried serves me best. It's kind of a two for one in that the antidepressant side of the drug is undoubtedly useful too but any side effects are negligible for me anyway. I'll face any with drawl as and when I guess. I also take tramadol with the duloxetine and keep getting them prescribed??
take care,
Helen

What is really questionable for me is the effectivity of those PN blocks in long term.
Almost everybody here agrees that they are rather diagnostical than therapeutical, bearing certain risks associated with them. Plenty of bad experience here.
On the other hand, my urologist prof. Urban (who is a Head of the Centre for Chroni c pelvic pain in Prague) told me (and writes in articles) that he has very good experiences with them
and complications are rare.
Pudendal nerve is according to him - very often irritated but rarely truly entrapped. Therefore his favouring of the block.
I still speculate about the outcomes. One of the reason about this discrepancy might be, that if the nerve is only irritated and block is applied early on (so not after years of heavy suffering with the entrapped nerve), the outcome might be more beneficial than it seems according to personal stories read here. Those patients probably are not such insiders and veterans of PNE like we are and they do not post so often here. I cannot believe that such respected urologist and uro-surgeon like him would favour Alcock blocks if the outcome would be so miserable and associated risks so huge.
Any opinions?

They are certainly diagnostic, if there is any therapeutic value it will probably be short lived (not always though)
The main thing is that the block is almost a 'right of passage' and unless you are happy to stay with conservative treatments, lifestyle changes and any compatible medication ad infinitum, it's almost something that has to be done. You would never be able to have surgery I doubt without a block first for example, well it would be silly to go that route as blocks can not only let a physician know whether the pudendal nerve is the cause of pain but some are specialised enough to find out where the problem may be along the course of the nerve and it's branches.
I know that a few people have suffered more pain from a block, thankfully usually short lived, but I think those that it does help just get on and don't report it. This will mean that those that have had a bad experience (obviously) have more to say about it. There again we have no figures to say how many of those blocks were guided, which is so important.
Only you can do the research and make the call, good luck.
Take care,
Helen