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8 months post jpouch surgery. Since my third surgery, I have experienced sharp, shooting pain in my rectum, almost reminiscent of UC pain. Had multiple tests and scans which show no inflammation or issue with the pouch.

After many months and doctor visits, my surgeon probed and determined I have pelvic floor spasm. I have tried physical therapy and it hasn't worked. A few times a day, I am in crazy pain. Ibuprofen helps but doesn't take away the pain. I also don't want to take meds anymore .

Has anyone experienced this kind of Pudendal Neuralgia? If so, what steps did you take to heal it?

I had big hopes for my life after my jpouch surgery, but this debilitating pain has changed the course of life. I just want to stop living with pain which has been a constant in my life since my IBD diagnosis.

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Pelvic floor therapy can be really different than typical physical therapy.  There are those stretches you can find on the internet, and then there is much deeper work I have heard about that you do with an actual therapist, not on your own.  I have not done that myself, but people on this site have some experience with it so it might be interesting to search for their posts.  I have no idea if it would help with your pain but it seems like it might?

Oh my goodness I’m having terrible pain also.  I was given a suppository had to made of Valium/baclofen.  My spasms start when I have a bowl movement.  And boy do I have the urge to push and spasm pain it’s unreal.  I also got some cream from my doctor.  You can get lidocaine ointment or cream.  It does help but not for long.  So I’d like to get off the toilet but yet I’m still going.  So I know this isn’t helping at all.

This is the best part:  I have pouchoscopy every year.   He found a fold in my pouch.  He said nothing to my husband.  I read it after we got home.  What a shock. Since then I have been having problems.  Mine might be a little different than yours but my back hurts, down my legs.  I’m as raw as can be.  And I did do physical therapy.  But I had it done vaginally.  It made a huge difference but when it was all said and done I didn’t keep up with directions.  Just a thought for you.  

Thank You

Sorry I haven’t replied. I had vaginal physical therapy.  She didn’t understand why the vaginal there wouldn’t help rectally because of the same muscle.  It did and I didn’t stay up on it.  My big mistake.  Well the 2-3 months ago have been hell.  I finally went to my PCP dr for help.  He is sending me to a colorectal surgeon and we go from there.   I’m starting to think my problems are from adhesions.  Well I go tomorrow.  And if I don’t need surgery he can refer me to a jpouch GI dr in his office.   I can’t live with this pain anymore.  Oh and we moved so I have new Drs where we live now.  I will say my previous GI dr. Is way to busy.  Praying all day that he can help.  And I did an MRI a couple of weeks ago.  So he’ll have that to look at. Wish me luck.  Again I have been too sick to post.  Sorry.

Thank you for the support.  I just feel like I can’t get a break.  I have had problems with my jpouch from day one.  But this pain and urge and spasms are absolutely unreal.  I will always remember what my surgeon said.  You need A or B and they both suck.  U of M never went over anything before or after my surgery.  Looking back what a mistake.  I love this site!!!   I got more answers here then even my own GI dr.  I’ll post what I find out.  Thanks again.  

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