Hi everyone!

I am happy to be on this forum. 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 am very active (I have a great job & play roller derby), but I have had to put both on hold over the last 2 months because symptoms have gotten worse. 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

Happy to see you have come to be with us. As you can tell there are great and caring friends here to assist you, just let us know if we can be of any help. Our shoulders are here for support in many ways. Please keep us up to date on your condition & needs.
Check the following forum there you could find someone for help.

http://neurotalk.psychcentral.com/forum24.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi, & welcome. I was a visitor myself a few weeks ago. I'm glad Darlene's linked you to the right forum--look around, ask questions, get settled in. I'm betting that you'll be able to find the sorts of help & support I have in short order.
I know you're feeling overwhelmed. It must really seem hopeless at times. That's why a place like this is here.
Just keep coming back, keep asking questions!
Prayers & hugs.

Hello, and welcome

No need to apologize for long posts. Some of mine are waaaay toooo long. You do have a lot to say and I'm sure you could say more.

So sorry you're having these problems when you're so young. I can't personally relay anything like you're experiencing. Must be hard to deal with in many ways.

Two years is definitely a chronic situation. Time just keeps clicking off.

I haven't read about your problems here, myself. I'm sure there are some other suffers that have been here before you. Try the "SEARCH" button above for some terms to see what you come up with.

Keep in touch and keep asking questions till you get satisfactory answers.

Thanks for the replies, everyone!

Hiya
I don't where to begin. I too have puborectalis muscle spasm. I have had it since 1992 and have never spoken to anyone else who has it!! I only received my diagnoses a month ago after being referred to another specialist. Mine was caused by the birth of my first son in 1992. Over the years I have had 16 operations including LUNA and a hysterectomy to name a couple. Over the years I was told it was endometriosis, IBS trapped nerve in my vaginia. I am in severe pain constantly. I have a rectoceal and cannot push any bowel movement out or hold any in. The only way I can do anything is to use a warm water enema. I am on Morphin and a long list of other drugs, none of which kill the pain. I am waiting to receive botox injections in my vaginia to try and kill some of the pain.
I would love to email you about any experiences you've had and swap info both of us have gained which has either helped or not as the case may be. Please email me back. I live in Scotland.
Look forward to hearing from you soon
thanks
Helen

RollerGirl,

Did you see Dr. Steven Wexner in Florida at the Cleveland Clinic?
I have the EXACT diagnosis as you. I have pelvic outlet obstruction/paradoxal contraction of puborectalis muscle/anismus...there are so many names. I've had every test imaginable including defacography and menometry, etc. I also had two botox injections into the puborectalis muscle, but neither worked. Currently I do not have any spontaneous BMs on my own, and I haven't for 4 years. I'm surviving by drinking a bottle of magnesium citrate once a week to clean out, but the laxative is becoming less effective because my body is getting used to it. Dr. Wexner told me that my only hope of avoiding a stoma/bag is to undergo intensive biofeedback/physical therapy every day in his clinic for 2 weeks to a month. Unfortunately I'm a single mom, I work a full time job, and I live outside of Chicago. I do see a physical therapist that does biofeedback here, but it's only once a week so it hasn't beed effective. I recently found out that the Mayo Clinic has an intensive 2 week outpatient program to treat this condition. I'm looking into it and I WILL do it. Right now I'm trying to find two weeks that I can head up there.

Like you, I have a history of weak pelvic floor, and delivering my daughter vaginally made it worse. Also, I'm a teacher and am unable to go to the bathroom when I need to, so over time I've trained my muscles to hold it in.

Jamie

I'm so glad to hear that I am not the only one. Suffered for years, but just got a final diagnosis today. I live in Atlanta and my dr. is suggesting 4 ( 1 a week) biofeedback sessions and then a botox injection. What do you think?
I've done the recto seal repair...lasted 1 year. I will say that I take Dr. Schultz's Formula one...2 at night. *edit* In most cases I am able to have a bowl movement because it softens the stool enough. If I don't take it....I could go weeks literally.

Would love to hear your input on my proposed treatment plan?????

So happy to find others like me.
Cheryl

Although I feel like I have been thru the ringer I am thankful that my situation is not as bad as some. I fell on my tailbone years ago and sat on a donut for 3 yrs. I don't know if that damaged the puborectalis muscle or if it happened when I delivered my 9 pound babies. 3 yrs ago mayo said I had a slow colon after the 4 day test of watching the markers and sent me home with tons of meds. I helped my son move the first of July and that is when everything collapsed. I strained to move a mattress out of a basement. Now I have the huge rectocele and need the whole works reconstructed. I had to go thru the colonic transit study which was horrible. The good news is that my colon is normal which means the problem is the pelvic floor. I can't get into the 2 week therapy until December & the 4 doctors will do the surgery next week. I found a book called "Healing Pelvic Pain". I have been doing the exercises & breathing for a few days. I am fortunate that with the breathing I can finally relax the sphincter muscles. My stools aren't pencil thin. I've started each day with a huge bowl of cream of wheat. This whole process for years has been frustrating & annoying. It took the rectocele to finally get some action. Have you suffered with hip and back pain as well? I'm only 49

Hello A03613,

Welcome to the NeuroTalk Support Groups.

I'm not really sure which forum to suggest.
Most of the thread that you've posted to is from 2011, so unfortunately you may not get responses from those people if they're not using these forums anymore.

I would suggest trying the
Forum search feature
using specific keywords and also perhaps reposting in the
Women's Health Forum