Pudendal Neuralgia- does anyone have experience with it?

Did the doctor refer you for pelvic floor therapy?

Yes, the physical therapy was part of it. Did not yield much result for me.

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

@grandmaof1 posted:

I have pouchoscopy every year.   He found a fold in my pouch.

Is this an indication of prolapse?

Thanks, @grandmaof1. Can you elaborate what you mean by PT done vaginally? I saw a pelvic floor specialist for 16 weeks who made me mainly do exercises, breathing, and performed some massage. Trying to understand what your therapist did differently.

Also, wondering if anyone used acupuncture or homeopathy to ease this pain.

I tried pelvic floor therapy in hopes of improving ability to empty as well as reduce leakage.  While the therapist may have been fine for someone with the normal anatomy down there she really had no clue what I was dealing with.

Agree, @Debc. The therapist was well known and very nice, but she really could not target the areas that I needed. I came away disappointed.

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.

@grandmaof1 I'm so sorry to hear about your pain.  I hope you find some relief ASAP.

@grandmaof1 I am so sorry to hear what you are going through. Wishing you luck for a successful appointment and a pain free outcome.

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.