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

Although on the "opposite" end of the digestive tract, I have a friend with achalasia, where (for no reason at all) her lower end of her esophagus went into spasm and just never released. I posted because her symptoms were just like yours, only reversed. She couldn't swallow because her lower esophageal sphincter was always in spasm.

It got worse over 2 years and debilitating after she had her son (they said the hormone change made it worse). She also had botox injections which didn't help and eventually had a "myotomy" where they made an incision and released the spasming muscle. Now, I don't know if that is possible in the rectum, but maybe a consult with a new GI or colorectal surgeon? I'm near Philadelphia and can get you the names of the doctors she saw. It would seem the symptoms are really similar.

I don't know how they can say for sure that your spinal problems aren't causing some of this? Just because they can't see nerve 'compression' on the MRI doesn't mean the nerve isn't irritated. My first signs of disk problems was really bad leg cramps and my hip flexor was in constant spasm. I went on neurontin (after they saw the herniations on MRI) and that helped the spasms tremendously. I had herniations at L4-L5 and L5-S1 and have had 2 microdiskectomies.

Are you having bladder symptoms as well? Because it's the same nerve root that controls your bowels controls your bladder. My spinal surgeon warned me that if I lose control of my bladder or bowels (either by losing them, or by NOT being able to go) then it means the nerve is being compressed and I was supposed to go right to the ER. Have they done an EMG/NCS to determine if the nerve is irritated at all? I would insist on this if it hasn't been done already!

Hi everyone,

Wow, thank you so much for the responses. My apologies for not responding earlier - I had not checked this board in a couple of months before today, and was surprised to see others who are experiencing something similar! I'm so glad we have found each other!

Here is a brief update on my situation - I had another MRI defecography done in September, which revealed yet another very large rectocele. Even after having rectocele repair a little over a year ago, another rectocele has formed because of extreme straining. I began seeing a new doctor - a urogynecologist - who performed a posterior colporrhaphy and perineoplasty (my perineal area had stretched and was severely bulging from all the straining) on October 31st, so right now I am 4 weeks post-op.

I was on a liquid diet for 2 weeks post-op, but am eating solids now...and the nightmare has returned...I cannot have a complete bowel movement without the aid of a warm-water enema Bowel movements are *slightly* better, because stool is not getting trapped in the extra repository of the rectocele, but I still have to strain to even get started, and then eventually finish up with the enema. I just don't have enough "push" to get the contents out. And it just hurts so bad! It is miserable.

My new doctor has confirmed what others have said - the puborectalis muscle is strangling the rectum and not allowing it to open. My internal **** sphincter is SO tight that barely anything can pass through. He said it was tight even when I was unconscious under anesthesia! The straining I've been doing lately, combined with the manual massage of the area to even get ANYTHING started, has caused the return of a fissure, because I've started seeing blood again

The new doc said a sphincterotomy (cutting the internal **** sphincter) would be risky because fecal incontinence could result. He is trying conservative treatment first, and suggested I order dilators. They just arrived, and my next appointment is Thursday, December 1st. He will show me how to use the dilators, which will supposedly help to stretch the sphincter muscle and create new muscle memory so that it will begin to open on its own. I hope this works.

@Jamie - I saw Dr. Massarat Zutshi at the Cleveland Clinic. She performed the botox injections & EGS. I saw her 3 times, but making that trip got costly! That's great that you found out about the Mayo Clinic's program! I do hope you can get there & that it will work for you. This is a horrible condition to have, and it seems there is really very little information out there! I'm thinking of starting all over and going to Johns Hopkins if things do not improve for me after the dilator therapy.

@Helen - Wow, what a long time to be dealing with this condition! I will try to figure out how to email you through this board so that we can swap info.

@njmama09 - Yes, it baffles me why NO doctor (even my new current one, who I really like and actually seems willing to help) is interested in exploring a possible neurological reason why my INVOLUNTARY muscle is not working properly. My current doc insists that the dilators & biofeedback is the answer. But I've already gone through that - with 2 different therapists -for months with no relief. I will certainly keep bringing it up! I'm not sure why they can't at least do tests...

Once I figure out how to send private messages on here, I will try to correspond with some of you! Thank you, thank you SO much for the responses. I am happy we have all found each other so we can share our experiences and treatment stories. I will definitely be checking this board more regularly now!

Thanks again. Good luck to you all & please do keep in touch! I will also keep y'all posted on my progress...

~Rollergirl553

Hi everyone! Just wondering if anyone had any updates? I am not able to send personal messages on this site for some reason (I sent an email to the admin, but haven't heard back). Please post here if you have any information to share regarding nonrelaxing puborectalis, anismus, outlet obstruction, etc.

Here is my update: My urogynecologist will begin "dilator therapy" on January 3rd. The idea is to use dilators (of varying sizes) to stretch the internal sphincter muscle so that it will begin to re-learn how to properly open and function. I really hope this works because every day is agony. In the meantime, I have increased my fiber and I drink tons of water.

I hope you all are doing as well as you can be. Please let me know if there are any tips to share, if you've found anything particularly helpful, or if you are undergoing any type of treatment for nonrelaxing puborectalis.

~Rollergirl553