I'm sorry have not been doing much moderating/posting as I was recently diagnosed with levator ani and/or Pudendal Neuralgia which is a VERY painful condition...i started under going very intense pelvic floor PT, part of the pelvic floor PT is done through the rectum by finger trigger point release (just what a guy needs with UC, hemmies and that is prone to fissures). My internal sphincter has been so sore it feels like there is broken glass in there which is one of the many possible symptoms of PN/PNE. I have been complaining to my GI docs and my CR docs for over a year that sometimes when I use an enema or suppository it feels like broken glass when I insert the tube/suppp to the sphincter, they'd just look inside me with an anaoscope and say it looks normal, give me some cream and send me on my way. It wasn't until I started to research my symptoms i.e. cannot sit without pain, rectal burning pain and then added nerve to the mix, that I started finding out what's wrong. I had to travel 4 hours away to get a specially trained PT that deals with pelvic flor and pudendal nerve issues. I am writting this from the hotel and I have my last treatment (for this current session tomorrow)all I can tell you guys is it makes fissures, henmmies, IBS and even UC pain feel almost mild the burning is so bad. If you're not familiar with the pudendal nerve or pudendal nerve issue and the rectum/groin you can check out this forum and you can find some of my posts under the same user name "bbc" I have hear. http://pudendal.info/phpbb3/viewforum.php?f=22
I used to think it was bad to suffer from UC and IBS plus spine issues, other aches and pains, sinus issues, etc etc etc, but I realize more than ever, things can also be much worse...even now. I have been very blessed that my UC has been quiet during all this.
If I'm blessed/fortunate my PN will be from from the very bad muscle spasms in my adductors, piriformis, levator, and internal sphincter muscle spasms which are in turn squeezing the pudendal nerve casing all the burning pain vs the nerve being inflammed all on its own. The post bowel movement burning pain is nothing like I've ever felt before...pure hell . The pudendal nerve can also be entraped which requires very serious surgery where there are only about 6 docs in the entire US that do the procedures...the gurus are in France. I was also told after I requested an MRI of my pelvis for tailbone pain that my tailbone is so angulated it's actually L shaped...the therapist is going to try and manipulate it back into place via my rectum tomorrow! I have had tailbone pain too for about a year or so and blammed it all on my UC. I found a new CR (colorectal) doc that diagnosed the levatorani/PN and wrote the rx for PT and some meds.
If anyone here is getting bad pain from sitting or bad post bowel movement pain/burning and your UC/fissures or hemmies are quiet, dont let the docs tell you nothing is wrong. I hope no one here very has this stuff but I'm glad I finally found out what is behind this pain when all along I've been told it's nothing, my hemmies, an old fissure etc.
I am now taking valium to relax the muscles plus was told I might have to start Neurotin to help heal/calm down the pudendal nerve for the 4-6 mos it should take (the Good Lord willing) for the PT to heal my pelvic floor. Seems like all I do all day is take more pills and use more rectal meds...geez where has my life gone lately lol.
I'll try to post here when I can and I continue to think about, and pray for us all.
Dx'd with moderate Pancolits 05/07 better with Pentasa and Cortifoam.
I also take Probiotics, Curcumin, Benefiber and cannot tolerate
artificial sweetners (never could even before UC).
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.
Post Edited (bbc) : 10/5/2009 9:14:27 PM (GMT-6)