Health Organization for Pudendal Education

Hi, two months ago I had botox to pelvic floor muscles which eased pain. Am now feeling pain returning to pre botox level. Have had various opinions as to diagnosis. Some doctors say pudendal some feel not. Does the fact that botox eased pain give indication one way or another. Nearly two years in pain now. Began with fissure which healed but pain remained. Have had 3 prev botox to sphincter and sphincterotomy that have proved fruitless. Many thanks, Chris

Since the botox eased your pain it is muscle pain because botox is not considered to work on nerves. Usually botox starts to where off at 8-12 weeks.

You can still have pn and have botox help your pain. The botox will reduce spasm of the muscles and help manage the viscous cycle of spasm/more nerve pain/ more spasm / more nerve pain. When I get botox I still have bad nerve pain (like 6 level pain) but my pain is much much worse when the botox wears off (constant 8-9 level pain) since the muscle is spasming so bad and squeezing the nerve more.

Hope this helps.

Merrie

It will depend on what kind of pain you have been suffering from. If it's a nerve pain, i.e numbness, burning, itching, stabbing and that subsided after the botox it has got to be some nerve involvement. Take a look at the home pages for the descriptions of typical nerve pain.
If it is a tight, deep ache (well that's what my piriformis muscle pain is) it may be muscular. It could of course be both i.e. tight muscles causing nerve irritation.
The botox was just into pelvic floor muscles and did not exactly target the pudendal nerve I take it? If this was the case a pudendal targeted injection may be helpful but only if you have had the nerve type pains but if it were me I might try some pelvic physio to try to get those muscles to relax first.
Ruth Lovegrove Jones (or some combination of those Sir names) has been mentioned (Southhampton)
I hope you get some answers, were you seeing Dr Greenslade Chris?

Hi, Thanks for response. Yes Dr Greenslade & Mr Dixon carried out Botox in Bristol. Was hoping as i had some improvement it would rule out Pudendal. Seen Mr Wong prev who thought it was Pudendal but Greenslade didnt so feel no further fwd. Just always in pain. Seems coincidence that started with fissure that took long while to heal but pain carried on.

Dr Greenslade could always be wrong of course. maybe your symptoms were not so bad the day you saw him ? ?. I think it's a case of gathering all of your evidence, doing the research and almost making your own mind up. I'm at stalemate too as the guy Dr. G referred me to thought that surgery (piriformis in my case) was so experimental and potentially disabling he didn;t think it wise to pursue. Going back to see dr G I hope and see what he recommends next.
It's a mountain and it's not an easy path to the top it seems, fancy emigrating to the States? ?

Hi Helen, thanks for quick Response. My experience with botox sounds remarkably like yours. About 40 percent improvement now pain coming back with vengeance. I had in pubo & levitator muscles with massive dose of 1000 units. Do you take much med? Before procedure was in email contact with doc in Madrid who had arranged some physio. Decided to try botox first. States sounds good Helen, to be honest if a diagnosis could be made on the moon would be buying my space suit tonight. If it's muscle related what is prognosis, do you know?

If it's muscle related there is a good chance that physio can help. Especially if any tight muscles have not been subject to damage from injury or trauma (surgical, fall etc) Maybe your muscles tightened up as a reaction to the pain from the fissure and need treatment to relax. I would say that may be worth pursuing anyway.
Currently I am taking cymbalta and tramadol.I find that nothing much helps the true nerve stabbing pain, although cymbalta maybe makes it more manageable at lower levels. I just take tramadol when needed, with movicol (which I hate, yak!) They won't give me lyrica at my practice (because gabapentin is EXACTLY the same, er, no it isn't!)
I had thought that I was getting somewhere surgically and soon, so was toughing it out but may revisit the medication issue now that it has all stalled.
I find that pacing 'activities' is the best way of dealing with it, if possible, plus I am quite good at putting the pain in a box and dragging it down a level or two. It only works up to a point by which stage if I have paced things well, no problem, if not, well, I am my own worst enemy!
Diazapam is a muscle relaxer but I have never tried it, Calluna has excellent knowledge on medication btw.