Health Organization for Pudendal Education

I would appreciate advise from anyone who thinks they may be able to help. It is getting to the New Year and I feel I need to make some major decisions to help my situation. Some of you may recall that my problem actually started with bottock pain on sitting on the right in August 2010 and then developed into bottock pain bilaterally + pudendal pain in April this year. My pudendal pain is probably not as bad as most people but it is still irratating nonetheless. It mainly consists of a pinching crawling tingling sensation just behind my testicles at about level 3/4 with sometimes stinging ejaculation. Both pains are purely positional i.e. only on sitting/pudendal pain in some lying positions but never walking/moving/ squatting. Recently I have developed the burning/freezing/pins and needle feet symptons - about 4 days after an injection. This is probably the worst pain as it is not positional and keeps me awake at night sometimes at level 7 or 8. Everything I have tried has not worked including osteo/kinesealogy/acupuncture/physio and a total of 8/9 injections. Excess alcohol lessens my symptons and I do not take pain killers. I have had MRI with Dr Potter and MRNS. The only things they showed were vein dilation around Obdurator Internus/distal Alcock's canal/anterior margin and hip labral tears/FAI. Seen several PN surgeons who refused to operate as they could not reproduce my pain internally or externally (they call it a tinel sign) and my pain doc says he would not recommend me for surgery. In fact I think he thinks I am highly unusual (or making it up but trust me I am not). He has now referred me on to a new neurologist and hip specialist. The new neurologist reckons its coming from S1 or S2 or S3 in sacral plexus - back here again! Only the Nantes guys seemed interested in operating. Recently I went to a specialist physio in Edinburgh who seemed to be one of the most knowledgable I have met - after his two hour session for about three days my pudendal pain subsided but my feet pain has been getting worse (this may not be connected). He also could not reproduce my symtons. His name is Bill Taylor by the way and for some reason not on this websight. He may not work for everybody (he does not hold back when it comes to pushing and prodding internally) but I highly recommend him and wish I had known about him before. Ironically, his help meant that it was harder to see whether the Nantes diagnostic block (which I had three days later with no steriod) at inferior cluneal nerve and Ischial spine worked - I think the Ischial spine reduced my feet pain the most how weird is that? I can't help thinking that I my highly stressful job is also playing a negative role. I always told myself I would hold on to the job until I had some kind of diagnosis and idea how to sort myself out - also they pay for my healthcare. However, the stress of handling this chronic pain with an incredibly long hour/competitive/deadline driven job is starting to get me down. Some of my physios reckon the job is excerbating the health problems but I can help thinking there is still something wrong structurally in my butt and now my feet that triggered the pain and needs fixing. Still, it is clear I am not at a diagnosis of any kind i.e. one that is highly specific. I would have surgery but loath to do this if it is not the right spot. Let me know what u think?

Oh - and I forgot to mention - I seem to have a highly unusual sympton related to Pudendal pain. Often when I break wind it reproduces the tingling sensation at the back of testicles/perineum. Does anybody get this to? I do not get this going for a no2 only farting. Nobody I have seen ever has posted about this?!

It seems to me if the cluneal block worked then that seems to be the most likely nerve. Also, many of us have foot pain/burning/tingling. Could be for many reasons but one of the biggest culprits is piriformis syndrome. Does anyone think you have some of that?

Hey nyt - thanks for your thread but maybe I wasn't clear. I was 80pc sure the inferior cluneal nerve block did nought/nothing. Wasn't sure about the Ischial Spine one, too. Partly cos physio helped me temporarily for three days in the run up to the block. So couldn't real get my pudendal symptons going prior to the block. Ironic!

Sorry about the misread of your question. Not sure what to think. It is ironic! Do you or they think much of this is myofascial pain versus entrapped nerve?

Question, you said you developed foot pain 4 days after an injection. What type of injection was that and do you know what medications were in the injection? Was your MRI before or after that injection?

Thanks for the info about Bill Taylor. If he would like to be listed on the site we can add his name but he would need to send us an e-mail to the admin@pudendalhope.org e-mail address with his contact info and a summary of the training he's had to treat PNE.

Violet M