Health Organization for Pudendal Education

Thank you Poppy, Voilet and Catherine for your encouragement and advice!!! It's so reassuring to hear about other people's experiences and to hear that despite it being a long process, there really is hope for recovery. It's still very early days

To every one that has posted here, I feel you pain and anguish. I too have seen the professor 29-4-14 and what was recommended was botox. I was told that botox can not be fought and that things would settle along with physio and self treatment, I was assured things would settle. after reading a lot on this site It appears that it takes time to fix repair improve this nervous area. I have made a lot of concessions since this happened 'fall on to butt jan 13' since this incontinence, bowel and bladder which I now have no control over, collapsing if bladder gets extended along with a host of other issues. so if there is a light at the end of the tunnel some info would be good.

dale

Gday Dale,

So sorry to hear you are not well. I wondered if you are following up with botox with Dr Vancille? Thanks. x

hi, have not had the good fortune to go back to Sydney at this stage. the insurance company along with the doctors here in Hobart are really not up to speed with pn issues. the insurance company want it explained exactly why botox is required as they are non believers', I would like the people who are holding up my treatment to spend a week in my shoes as I am not getting better in fact things are changing and getting worse.

regards dale

Hi all, its been a while since I have posted and spoke about the issues due to the fact I have been drugged out of my mind with the recommendations of the doctors etc. since last posted I have had 3 bouts of botox at approx 6 month intervals. the botox injected directly to the muscles does have an affect which has had a mixed result. the injections bilateral in nature seem to be fairly effective on the right side but on the left, its as if there is not enough injected but there is some change which helps. sitting is still not good at times i cant sit on anything other than a toilet seat as the sit bones are fired up to the max. my current symptoms are as follows.
lower back pain intense central with shooting to the sides. sciatica r leg solid 6/10 left leg sciatica 5/10 average.
walking any distance is not an option pain coming from middle lower back zaps and makes me fall, I believe this has been happening all along
pain in the groin is particularly bad in the left side of groin central which pulses thru to buttock and hip also feel pain in to the lower stomach on that same side. the right side groin also pulses but not as bad but still causes a lot of pain with lower stomach sensations. the priaprism events are still happening and the added feeling of being electrically charged which is very uncomfortable to say the least.
bladder and bowels still pretty much the same as it feels like botox has gone down in effectiveness since the last injection 24-10-15. in the week prior to xmas could not sit properly and had trouble driving had bouts of sensations i needed to run to the loo, (one day 46 times). since 28-12-15 i have been better with sitting but walking has got worse in my opinion. i lay, sit, stand, an unbelievable amount of times thru out the day. i sit on the toilet for long periods so i can get comfort. i try and keep moving as much as i can, just so i can avoid any long term positions which cause pain to increase.
doctors are thinking of trying the stimulator to see if it helps with bladder bowel and lower back pain etc, the pudendal nerve is also what they want to see if they can control. but its where to place the leads they are not sure about placement high up the back in the thoracic area or low at the s123 areas
the problem of falling is a issue as i seem to be hurting my knees with the continual falling events which i am over. i am sometimes falling backwards landing on my bum which really stirs things up.i can walk about 500mtrs then pain really ramps up. which causes all the other problems to become more intense. my feet go numb/ asleep when i experience the zaps from the lower back this i think also makes me unstable and prone to falling. the neuro surgeon dosnt want to fuse at the moment as i have a very excited nervous system. but i am thinking its probaly a step that needs to be investigated a bit more. the pudendal issue is so miss understood by the insurance company's that all they want is a letter from prof van in Sydney stating is there any pudendal issue contributed by me falling in jan 2013. hello why does botox have an affect if there is no pudendal issue. frustrated like hell this curse just evolves with out any control.

regards dale

Dale,

I have just had Botox injections about 3.5 weeks ago. So far for me I've not noticed much difference in pain. Maybe my bowels work a bit more easily. What cocktail of meds are you on? I am on Targin and Lyrica. How many units did they give you? They gave me 100 units I think.

My pain is mostly rectal. It's like an anal fissure yet I don't have one. It's a raw sharp burn about where the obturator internus is on the left side.

Just wondering if there is anything else that might work better. Currently I take 150mg of lyrica in the morning and 75mg at night.

Hello Pafin
I have not posted on here for a long time as PT reduced my PN pain to managable levels and I have had a somewhat reasonably normal life for about 18 months. Like you I had burning anus pain. To my alarm the pain is returning so I am off to see the physio again next week. I have never taken specific meds. I notice you take two. Assuming the worst and I have to look at meds do yours (or any others you have tried) make any difference? I'm asking as we seem to have the same symptoms.
Paul

Paul,

I found physiotherapy gave me some relief as well. Unfortunately it was more of a manageable tool rather than a cure. After a while since stopping physiotherapy my painful symptoms came back. I was given a pelvic floor wand to release the muscles at home but I couldn't seem to achieve the same results the physiotherapist could.

I am still recovering from Botox injections at the moment. Before that I also had a pulsed radio frequency. Botox has relaxed the muscles but it now feels like the pain is coming from behind the muscles somewhere.

It's seem to be that my symptoms might be coming from the sacral nerves rather than the pudendal nerve itself.

Medications help on the average days but sometimes during a flare up the pain breaks through regardless.

Thanks Allan
My pain returned after I stopped PT also. I am now seeing Peter Dornan in Brisbane again. As you probably know his theory is pudendal nerve problems can be caused by a dysfunctial SIJ. Altho' the joint can be fixed the pain cycle remains due to nerve hyper sensitivity so thats what I think I'm dealing with now.

Yes I should see Peter again sometime. I went to him about 3 times but it was too far for me to travel. I do have his pelvic exercise program to do at home. Oddly enough I have a tender right SIJ yet my rectal pain is left sided...

It's worthwhile to see Peter though as in addition to treatment he can refer you for an MRN of your pudendal nerve to rule out entrapment.

Botox unfortunately hasn't helped me, if anything I have more pain so am just waiting for everything to settle back down now.