Treatment for Nonrelaxing Puborectalis

[rollergirl553]

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

[World_Traveller]

Hello,

I have this same problem since my teen years, and I am only 28. It really affects my quality of life. But have you tried squatting instead of sitting during bowel movements? That helps me hugely, but still some days it does not work. I would love to talk to others having this issue also

[just4thisnow]

I know it's been a while since you posted, but I also have this condition. I went to a lot of doctors as it causes a lot of other symptoms as well. Boston Mass has a 3 week program, it's expensive and hard to get insurance to pay for anything with Biofeedback, and I understand that Biofeedback is key.  There is also a doc named Rao Satish in Augusta GA that is an expert and has a lot of publications. I have found 3 medications, creams, that are supposed to help, but have not been able to get a script for this problem.  If you have found a solution, please let me know, I'm still trying!

[applegirl59]

I dont know if my comment real reach any of ladys since it has been a long time since your posts were posted and i have never used a web site but here is my story and if you get this letter from me and you have any thing new please let me know if you have found a treatment for the same problem. had a rectocele repair in 2007 ended up with two more sugeries for hernias and all problems were caused by doctors doing damage to me. I never had any problem with constipation until the doctor decided to go after an internal hemoroid instead of just fixing the small leak i had by doing the surgery vaginally he went rectally.  I have lived with pain enemas eating problems and become a total recluse with little to no activity.  I have only come across one article that is really of interest written by three doctors from the Univercity of washington. and they are spinal cord injury doctors. Yes the spince and the nerves in your spinal cord can add to your problems but like rollergirl to get a doctor to believe you is really difficult. Been dealing with that for years.So I know what you are going through. If you are looking hopefully for some answers the doctors i mention are Dr. Steven A Stiens, M. D. , Noel R. Fajardo, M. D., and Mark A Korsten, M. D. It is called The Colon: Fecal Storage, Desiccation, and Elimination. It is very informative. The Gut starts with the brain first that is why most doctors call it the brain gut issue. Best information I have ever read. the only other thing I have found is stem cell therapy or nerve regeneration.  I do not know of anyone who has had this procedure done but there is a web site I found that has a doctor that deals with this problem.

[CalGal]

Diana, what's your story concerning this issue? What tests have you had done? What form(s) of treatment?

[DianaJP]

How are you today?  I have similar issues and would like to speak to you!