Treatment for Nonrelaxing Puborectalis

Hi everyone!

I am hoping to connect with others who are experiencing similar symptoms as I am--to share stories, treatment options, doctor/surgical experiences, and to provide general support for one another!

I have been diagnosed with a nonrelaxing puborectalis (also known as paradoxical puborectalis contraction), levator syndrome, pelvic floor/rectal descent, dyssynergia, and obstructed outlet syndrome.

History: I have never had a child, and I am only 33, so it seems strange that I am experiencing this, although, I'm sure I inherited my mother's weak pelvic floor. MRI defecography shows "severe pelvic floor laxity with abnormal descent of the anorectal junction 4.8 cm below the pubococcygeal line" during strain. I do have spondylolisthesis (grade 2, 50% slipped vertebra in L5-S1). Other than that, no major health issues. I am generally very healthy and active, and eat well (high fiber diet also). I tested negative for food allergies, colitis/crohn's, and a colonic transit study was normal.

Symptoms: My primary symptoms are incomplete evacuation, severe rectal pain, and constant rectal spasms.

Treatment: I had rectocele repair surgery last summer (August 2010), but symptoms returned. I have undergone biofeedback & pelvic floor physical therapy (before and after surgery). I have most recently had 2 botox (botulinum toxin) injections (200 cc's each) into the levator/puborectalis muscles at the Cleveland Clinic (traveled a long way for treatment!), and have also tried multiple sessions of Electrogalvanic Stimulation (EGS), in an attempt to "shock" and fatigue the muscle so that it will relax.

Sadly, nothing has helped. This condition is extremely distressing; I just want to have a normal bowel movement and resume a fruitful life.  I can barely have a movement without the aid of a warm water enema, and the pain/spasms last all day. Muscle relaxers, sitz baths and the heating pad help some, but not for long.

Neurological concerns: I have read that the puborectalis muscle dysfunction can be caused by nerve damage, particularly the sacral nerve(s) or pudendal nerve. I have asked many doctors about this (colorectal surgeons, spinal surgeon, neurologist), but no one seems to want to investigate it. I was told that my spondylolisthesis affected a different nerve area, so it is not likely that a neurological condition is causing my non-functioning puborectalis...but I am still curious.

I am wondering if anyone has any insight regarding this condition. It just sort of hit me out of the blue 2 years ago, and I have almost reached the point of hopelessness. I am trying to remain positive, and I would love to connect with others who may be experiencing the same thing.

Sorry for such a long post! I hope to hear from someone soon.

~Rollergirl553