Neuralgia v entrapment

[ChrisUK]

Hi is anyone able to tell me if decom sgy can be successful with pudendal neuralgia or is it only generally used for entrapment. Couple of other questions also re neuralgia, does the prognosis follow same path as in it slowly gets worse or is it more likely for natural recovery/improvement. Many thanks

[calluna]

Hi Chris! - ok, someone please correct me if I am wrong - but surely if the nerve isn't compressed in the first place - by entrapment - then decompression surgery isn't going to be appropriate?

And regarding neuralgia (ie pain without specific entrapment) - I'd say that the prognosis depends on what is causing it. And that is really hard to know without more information. As an example, in my case we were initially hoping that the pain would settle as healing took place after the mesh surgery, but instead it has progressed.

So, re getting more information, as I'm sure you've heard, in the US people have been getting MRI scans from Hollis Potter who appears to be some sort of genius at interpreting them. Over here, I am not sure what's on offer. I expect I shall find out soon, when I see the surgeon next month!

But even so - talking again about entrapment, people have developed it from things like bicycle riding, and weightlifting. And our anatomy can vary too - the nerve can take a different path than usual, through the ligaments and muscles. And the ligaments and muscles themselves can vary from the norm, as well. I think it must all come down to symptoms and circumstances, and the professional judgement of an experienced doctor being the best way to arrive at both diagnosis and a prognosis.

If I recall correctly, you've seen Dr Greenslade and he felt that your issue was not specifically related to the pudendal nerve, and was better classed as chronic pelvic pain syndrome. Did he have suggestions as to what your next step might be?

How is your pain level at the moment? I hope you are getting some effective help now?

[ChrisUK]

Hi calluna, many thanks for your response. Yes I have seen dr greenslade who thought 90 percent certain not pudendal. I had 1000 units of botox to pelvic floor last week with dixon/greenslade. Been in increasing pain since, right now is unbearable. Also left me temp incont so as you can see not in great place. Worried I may have abcess down there. Have seen some consultants who thought was pudendal and as botox ain't helping feel it's got to be pn. Regards, chris

[helenlegs 11]

That's why this is all so difficult to properly diagnose. Oh for good imaging over here. Hopefully one day and soon. Unfortunately a surgeon doesn't ever seem to know what they will find until they actually find it in theatre. By that time your gluteus maximus and maybe ss and st ligaments have been cut or severed.
There is one guy in Oklahoma, Hal Martin a hip surgeon who is now doing piriformis (sciatic) and pudendal decompression athroscopically just three little(ish) holes in the side of your bum cheek.
Maybe it's just as well these choices are financially removed from me, I have the choice of zip at the moment, well the choice of staying where I am I guess. Maybe that's for the best when post surgery posts are read. AAArgh! it's so mind blowingly difficult. Good luck with your problems Chris, I do hope that you get something sorted out soon.
take care,
Helen

[Violet M]

Hi Chris,

Just read through your previous posts regarding your history of a hard stool, fissure, sphincterectomy, and Botox. Sorry to hear you are still in considerable pain. Did your docs say why they initially thought it was not PN? Have you been evaluated by a therapist or doctor who pressed along the course of the pudendal nerve to determine if that elicits pain? This can be a very important sign as to whether there is entrapment or not.

It is often very difficult to distinguish between pudendal neuralgia that is caused by nerve entrapment and pudendal neuralgia without nerve entrapment.
If it's just neuralgia without entrapment there might be improvement and healing over time, depending on the cause. If there is an entrapment I think it's unlikely there would be improvement without the entrapment being released. But the important point I am trying to make is that it is often very difficult to determine whether there's entrapment or not so if your docs say you have PN without entrapment I would want to know what their rationale is for thinking that.

Chronic pelvic pain syndrome is basically a diagnosis that says you have pain in the pelvis but the cause is unknown. It's kind of a throw-away diagnosis that says "we don't know what's causing your pain". If you accept that diagnosis then you may go down a path of pain management with meds, physical therapy, and repeated Botox injections which may or may not bring improvements. Or you can choose not to accept that diagnosis but keep pressing your doctors to find out what is the underlying cause of the pain.

[ChrisUK]

Hi Violet, Many thanks for getting back. Yes its been a long journey, largely fruitless so far in that i have seen 7 consultants with 4 diff diagnosis. Still in lots of pain. Botox to pelvis 10 days ago. Feel wiped out now as well as being in pain and temp incontinent. As you mention had prev sphincterotomy last november and 3 prev botox injections to sphincter. Seen Dr Greenslade here in Uk who did press areas you describe but didnt lead to pain meaning he said prob wasnt pudendal. Also spoke to Dr Itza in madrid who feels doesnt sound like entrapment but neuralgia based on my symptoms. Only have pain in anus following fissure that healed but remained in pain. My theory was that in initially having the fissure my pelvic muscles when going to toilet learned to tighten and spasm due to the pain. Once pain source healed, muscles still contonued to spasm. It may come to final option of sgy in france but just seems too much of coincidence that pain is at same site as prev fissure. One of the theorys from Australian pain consultant (Tim Pavey) is that after fissure healed the site can have a memory for pain so continuing cycle. Would be great to have a true diagnosis.

[calluna]

Goodness what a mess. I do sympathise. You are right, if Dr G has pressed along the route of the pudendal nerve and that didn't cause pain, then that's not likely to be the source of the problem.

I have some experience of fissures myself, the pain was appalling and very much like PN pain I do remember - vividly. And yes even when the fissures had healed, it took a good while for the pain to go, I thought I must still have a fissure, but that wasn't the case. The pain did go in the end, though. I found lidocaine suppositories to be very helpful indeed, when I was finally prescribed these, the pain relief was like magic. I think your theory about muscles spasming sounds very sensible. And the theory about memory for pain, that sounds sensible too.

But I am really concerned that nobody seems to be doing anything about your pain! Could you get to your GP perhaps? This just isn't right.

[Lernica]

Re: rectal pain

I too have a history of fissures and intense rectum pain. Lately I've been using Anurex (an ice probe) in my rectum to relieve the pain. I have found it very effective. You keep it in the freezer and insert it in the rectum for about 6 - 10 minutes. Painful at first but things calm down nicely after a few minutes.

[ChrisUK]

Thanks calluna/lernica
Appreciated your input. 17 days on after botox to pelvis incontinence worse but pain has eased a little. Have spells in day when feel completely fatigued. Obviously regret having botox but when a consultant offers hope when you are in pain it is hard to ignore. Just when I feel at rock bottom I find another level lower. I don't know or have read of any other person who has had botox at this high a dose, 1000 units.
Calluna thanks for your caring support. I work as a counsellor and was due back in last Friday after some time off. Have kept everything very discreet and un be known to me they had booked in a day of clients to see me as I usually manage my own caseload. I cannot think of any more unsuitable a job to suffer from incontinence. I got through it ok but let's say I wasn't completely focussed and could of been a good contender for most embarrassing work moment ever! Got to laugh I guess. Chris

[catherine a]

Chris, Here in Australia they will not use any more than 300 units of Botox every 12 weeks. 1000 units does seem pretty high. I do hope your incontinence settles down soon. We all react differently to treatments but I never had any more than 200 units of botox myself. 100 each side. Are you positive it was 1000 units?

Catherine