Health Organization for Pudendal Education

Well here is a brief summary of whats happened to me....

Male/33/Hervey Bay area Qld

Had a routine colonoscopy and injection of internal hemroids in November 2010.
Developed pelvic/perenium/inner thigh pain around February 2011 as well as bit of bleeding/mucous which i assumed was the from hemroids. However they never played up like this before. So i went to my GP and had numerous tests blood tests basic xrays ultrasounds etc which were completely normal except for small left varicocele.

As the pain continued i went back to my general surgeon who decided that maybe i should get my hemroids removed. So i got the hemroidectomy done without any idea of the pain i would be in afterwards.....

A month or so passed but i was still in a lot of pain....But my surgeon kept telling me everything was normal and prescribed me more painkillers without really thoroughly examining me....By this time i was getting extreme pain and noticed some discharge from my rectal area which wasnt quite right....

Back into theatre in May 2011 or so and it was found i had an anal abscess. This was cut open to drain etc and was put on antibiotics....unfortunately a few months after this i was left with a residual fistula. Diagnosed via CT scan.

August 2011 -fustulomy operation to remove fistula tract. Healing after this surgery took approx 2 months with daily packing and extreme pain.....This was all on the right side of my rectal area.....


Around November 2011 out of the blue i developed constant burning left sided rectal pain an area where i never had pain or much surgery before. Had a sigmoidoscopy which was normal except for inflammation from my past surgeries. Also had some internsl hemroids banded at the same time. i thought all my hemroids were removed!

Pain continued on so was referred to brisbane for further tests.

December 2011 - Had endoanal ultrasound tests which showed no signs of any further fistulas etc. Pain continued though. MRI of lumbar spine and pelvis which was mostly normal except for patchy edema in my sacrum from S2-S5. Small 5mm utricle prostatic cyst. I saw a urologist about this and was advised it was quite common and nothing to worry about...However i was treated for prostatitis with antibiotics anyway. This made no difference to pain. 2 months worth of antibiotics

Colorectal surgeons in Brisbane advised me it was most likely Rectal spasm/levator ani/puborectalis disorder etc. Was told to wait 6 months allow things to settle down.

So i waited 6 months and was referred to pain management in the meantime. Was put on endep as well as oxycontin 10mg for when the pain gets really bad but even then only just takes the edge off at times. Also have valium for pain flares

I also went to Physio which discovered i had poor mobility in right hip as well as positive test results for Labrum issues.
I have as much as 33% less mobility in right hip. Possibly another condition not related to my surgery but might be an underlying issue/contributor to pelvic floor spasm

September 2012- had a colonoscopy in brisbane which was fairly normal. At the same time my surgeon did a pudendal nerve block for diagnostic purposes...Amazingly didnt stop my rectal pain but seemed to help with right perenial/inner thigh pain.

Current - been referred to an Orthopedic surgeon to be tested for Labrum tear.


My current symptoms
Pain in right perenium/pubic bone ache/hip pain
Left sided deep rectal pain caused by constant spasm of pelvic floor according my surgeon especially puborectalis muscle
Pain that extends down the back of the leg all the way down to my ankle at times....

Before all this i was jogging 5kms 4-5 tines per week and very fit and healthy....These days walking and cycling are about my limit just to keep a bit of fitness up while i keep trying to sort this mess out....

Hi Pafen,

Welcome to HOPE. You've certainly been through the mill with so many painful issues. We are here to support you any way we can and hopefully offer some assistance with information on who and where you can go for help.
The nature and location of pelvic pain makes it frustrating for both those who suffer and for the medical profession too.

There are a few health professionals in Australia who have taken our cause on board and are actively treating people with symptoms of PN. Peter Dornan (Physiotherapist) is in Brisbane and we recently had another female phsyio. in Nambour who is actively learning more and more about pelvic floor issues in both men and women. I currently don't know of any other doctor in Queensland who knows much about this. Unfortunately we are all passed from doctor to doctor without ever getting this resolved. (I'm much better nowadays thanks to this website and reaching the right doctors who knew more than most.)

If you make an appointment with Peter in Brisbane, it might be a good start. I, and many other women (and men) were treated by Prof. Thierry Vancaillie in Sydney who is Australia's leading researcher on Pudendal nerve pain.
I do hope we can find answers for you here and your suffering doesn't go on too long.

Welcome to the forums. You're among people who understand.

Catherine

Pafen, I noticed you said you're cycling? Most people with Pudendal nerve problems cannot cycle. It causes the problem to get worse and is sometimes the main cause of the problem. Perhaps your pain is from another nerve in the pelvic floor.

Hopefully you'll find some answers here as you browse our forums.

Catherine

My name is Allan by the way...

Well based on the fact the pudendal nerve block didnt relieve my symptoms thats what i am starting to think too....That its not PNE

I am seeing a physio up here who has been in touch with Peter for me.....Peter has basically passed on the exercise program to him.....I do have a lot of tightness in my SIJ and my physio has improved that a lot.....Hasnt seemed to cure my chronic pain as yet though....but its definitely helped to loosen up my very tight muscles throughout the area

I think the solution will lie in finding the cause of my pelvic floor spasm.....and then treating it hopefully

Hi Allen, welcome for me too.
I hope that you can get an answer to what is causing the pain and therefore get some good targeted treatment too. You have been through such a lot as Catherine said. . . Hopefully you will get answers sooner rather than later with Peters and your own physio's help.
Good luck and take care,
Helen

Allan, did the nerve block give any relief at all? Even for a few hours? if you have pain on the inside of the leg it could be your obturator nerve being compressed. I'll see if I can find anything about that issue. From what I remember, the obturator muscle/nerve can cause pain inside the thigh. See here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682412/

Catherine

I did get some sort of relief from the nerve block but nothing convincing. It seemed to help with my right perenial pain. But failed to make any difference to my left sided pelvic floor pain which is by far the worst of the lot. I am assuming the nerve block was done correctly as everything down there was totally numb. Except for the pelvic floor pain which seemed to be further up inside. Outside of my rectum etc was totally numb.

It seems to refer down the back of my left leg as well down to my calf muscle. Whenever I go to physio I am told my piriformis muscle is extremely tight, but that would be in response to the chronic pain I have in the pelvic floor I think.

I would be happy to just get rid of the pelvic floor pain and put up with the perenial pain as its quite mild in comparison.

The fact the pudendal nerve block didnt relieve this pain makes me think its some other nerve involved. I see my colorectal surgeon on the 24th October in Brissy to see what the next step is. Physio does seem to help me somewhat but i feel I am at a stage with it where its improved a bit but not going to get any better. I certainly will be asking my surgeon about the possibility of scar tissue from my surgery etc as well.

I am in the process of ruling so many things out out as the cause of the pelvic floor spasm and will also be seeing an ortho to rule out hip labrum issues.

Yes that seems to be the way for many Allen , trying to rule things out.
The only thing I will mention is that if it was just the rectum area that was numb (although you did say etc, I know) maybe the perineal and/or dorsal branch escaped the block?? Just a thought, you will know what did numb up of course.
Was the block guided? that is always the BIG question. Then again even guided ones don't always hit the right spot every time as the anatomy can be different person to person.
Many people do get a secondary piriformis problem from another pelvic, possible PN issue, although sometimes it is the other way around. Mostly a piriformis problem is a secondary issue tho'.
I have just read that there can sometimes be an even closer proximity of the piriformis muscle and the pudendal nerve than I was aware of, in that the p nerve can sometimes run thru the muscle!! I knew the sciatic nerve could do this (me) but have never heard of this pathology before.

6.3.2 Pudendal neuralgia - etiology of nerve damage
Anatomical variations
Anatomical variations may predispose the patient to developing pudendal neuralgia over time or with repeated
low-grade trauma (such as sitting for prolonged periods of time or cycling) (9,10).
The pudendal nerve may be damaged due to local anatomical variation at the level of:
1. The piriformis muscle. For example, as part of a piriformis syndrome: in some cases, the nerve may
pass through the muscle and hence be trapped; or in other cases, muscle hypertrophy or spasm is
implicated.
2. The sacrospinal/sacrotuberous ligaments, possibly accounting for 42% of cases.
3. Within Alcock’s canal (medial to the obturator internus muscle, within the fascia of the muscle),
possibly accounting for 26% of cases.
4. Multiple levels in 17% of cases.
The site of injury determines the site of perceived pain and the nature of associated symptoms (e.g., the more
distal the damage, the less likely the anal region will be involved).

If you want anything else to add to your list for elimination have you any sacroiliac joint problems? Stiffness there and leg length discrepancy is something that can be easily(ish) ruled out.
Take care,
Helen

Hi Pafen ( Allen)

As a matter of interest as regards the pudendal nerve block: was it guided or blind? That is to say did they use fluoroscopy or CAT scan? Mine was done with a nerve stimulator and fluoroscopy. The stimulator sent pulses along the pudendal nerve so the anaethetist would know he was close enough to have full effect with the injection. I was able to tell him I could feel the pulses before he proceeded with the injections.

I've read on another post that if the injection is not within a millimetre of the pudendal nerve then it may not work properly.

Cheers Jackson.

I saw my colorectal Surgeon in Brisbane yesterday. One of the best apparently and works at the North west Private and Wesley. He said the nerve block wasnt CT guided however he mentioned he has performed over 200 of them successfully and didnt like the idea of radiation exposure for the CT guided block. He said the fact the nerve block gave me some relief but not complete relief would suggest the Pudendal nerve is irritated in some way for sure.

The nerve block was performed during a colonoscopy I had done. He mentioned I have a bit of scar tissue inside which will most likely soften with time. He thought about the idea of a sphincterectomy but the fact i have had a lot of surgical procedures down in there in the past and nothing has worked he thinks its best to just wait and see approach.

On a positive note the valium certainly does help with the pain and he is referring me to a better Pain Management specialist in Brisbane as well. Also has advised me to continue on with my physiotherapy. My local physiotherapist has contacted Peter Dornan who has advised him on the stretches he needs to perform. Its just too expensive for me to travel to Brisbane on a weekly basis to see Peter.