An update on my battle with rectal/anal pain

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bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/15/2009 8:39 PM (GMT -6)   

Hello all,

 

I finally found a colorectal doctor that realized I have a problem.

 

I no longer have the fissure just some scar tissue, but during a very painful exam he roated his finger all around my levator muscle and the burning pain was unreal...he thinks I may have a significant levator spasm but I explained to him I may have Prudendal Nerve Entrapment or Prudendal Neuralgia http://www.ic-network.com/forum/showthread.php?t=56454  

 

PNE is serious stuff and the burning pain I'm feeling in my rectum is worse when sitting (except on the toilet seat); tailbone pain is another classic symptom. Many people with severe unexplained pain in the rectal, anal or genital area are often told after nothing can be found it's in their imagination and in fact it turns out to be PN/PNE. There are only about 6 MD's in the US that treat PNE with most work done in France. I pray and hope I don't have PNE; its also very rare. Cyclists seem to get PNE or it can happen from childbirth or an accident or even without a specific cause.

 

I have often complained about my rectum/anal canal feeling like there is broken glass in there especially upon insertion of rectal meds. The CR doc has me taking hot baths every evening trying to see if the muscle spasms (which he thinks may be the cause of my pain) get better...I sure hope he's right. 

 

The CR doc also agreed to look at my MRI and see if the perirectal and presacral varices that were found in my MRI might be compressing a nerve, Purdendal or not...I believe he is really trying to help me. I have a call setup with Dr Renney in Houston Texas who coordinates PNE surgery...I pray I wont need it as dealing with UC and IBS is more than enough for me to handle.

 

Take a minute to google prudendal nerve entrapement and you will be amazed at what you learn...I sure was.

 

I'll be happy to answer any questions.


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) : 7/15/2009 9:12:12 PM (GMT-6)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/16/2009 5:16 AM (GMT -6)   
Oh wow! Well at least I bet you are relieved that this could be the culprit to everything you've been having to deal with - that it has a name. I can only imagine the pain that you are enduring!
 @--->--SHERRY--<---@
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bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/16/2009 2:17 PM (GMT -6)   
Thanks Sherri...when it flares my rectum feels as if its filled with briken glass. I hope and pray I dont have PN/PNE as the success of treatment is hit or miss.
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.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 7/16/2009 8:40 PM (GMT -6)   
Gads! Sorry to read that you're suffering such a torment. I hope the new CR doctor can find you lasting relief; in the meantime, as you wrote, at least he listens. Just about anything can go wrong down there and does ... maybe you need a respite from sitting posture or some kind of special padding/pillow to reduce pressure on your bottom when you do sit. CCFA used to write stuff about IBD patients needing sheepskins to relieve pressure on their irritated parts-- so it's not a new problem. / Old Hat (30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 7/17/2009 1:02 AM (GMT -6)   
OMG..some scary stuff! I sure hope the doc is able to set things straight regarding diagnosis and hopefully treatment.

Great suggestions OH!

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/17/2009 7:29 PM (GMT -6)   
Thanks you guy's. Im scared and sometimes in excruciating pain. I had varices in my perirectal and presacral fat appear on my pelvic MRI which are not supposed to be there and if there are they usually are from portal hypertension but a CT scan ruled this out. I believe and pray, that perhaps one of these varices (basically a varicose vein) is compressing a rectal/anal nerve(s)...I have been trying to get my GI and former colorectal docs to think about that but they discount it...the new CR doc said he will have my MRI reread to look into these things much more closely and also into the lumbosacral plexus and S2,3 and4 nerve roots for potential pudendal nerve issues. I may have to fly to Houston for evaluation and treatment by dr kenneth renney and his team...can't live like this for too much longer.

Hope you guys are well and remember UC can be a real ***** but things can be so much worse.


Prayers are most appreciated and thanks for being there : )
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.

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