New member seeking info on Nonrelaxing Puborectalis Muscle
 

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

Welcome aboard!!
 

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 :hug:

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!

hi
 

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

To RollerGirl553!
 

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

Hi
you should be able to send PMs :confused: Just go to your user CP top left and then select "send New Message" in the left side menu or use the drop down menu under the other member's names or on their profiles.

I also checked the admin mailbox and do not see any email from you? Did you use the CONTACT US link bottom left of the page?

I'm so glad I found this:)
 

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

Surgery soon
 

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

Nice to meet you!!
 

Welcome AO3613. :Wave-Hello:

tight **** sphincter
 

Hi Jamie....I just found your post and too have the same thing. Have you found anything that is helping you? I'm so stressed out from this nightmare. I see Dr. Sands at the Cleveland clinic down in FL. She told me the same exact thing Wexner told you :,(

They need to open up pelvic floor clinics because this is terrible. Nobody out here does biofeedback but 1 lady. Sigh :(

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Click on the following forum, there are fellow members there to help you.

http://neurotalk.psychcentral.com/forum41.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Fractured sacrum
 

Hi all, in Oct 2014 I fell and fractured my sacrum at S3/4 and over the next 5 months lost feeling and ability to walk / have a bowel movement. By Feb, I couldn't even get water out of my rectum due to non-relaxing puborectalis. I have had nothing but the worst medical help: every doctor wants to tell me that if I would only eat fiber I wouldn't be constipated. Or to take probiotics, or that Im just misusing laxatives. I go to doctors crying because I cant walk and have no feeling and they write me up as having pain with prolonged sitting, seriously. 9 months later, $30K and more doctors that you care to count and I still have no help. I have an MRI showing the fractured sacrum, but no follow up, I have an MRI Defecogram showing "suspicion of non-relaxing puborectalis muscle. But no one wants to do anything. I have been lucky, with the healing of my sacrum, I am now able to walk again and my rectum no longer paradoxically closed upon defecation, in fact on a really good day, I can get a whole inch diameter movement. I am trying not to use laxatives and use ground flax seeds. I have also started the **** stretch technique thanks to my local *** store selling **** plugs. But as for any medical help none.

I was saddened to see that no one has had relief from the botox, I was really hoping that would be my savior.

I don't know if there is any hope now. The neuro surgeon who was supposed to help me denied I even had a fracture and now the nerve is probably dead.

So guys, am I very fortunate to get an inch diameter? Has Botox ever worked? I feel glad that I refused the rectocele surgery as the feces never gets that far and its "tiny". How about sacral stimulation?

Thanks for reading this far.

Hello Frodo-dog,

Welcome to the NeuroTalk Support Groups!

Seeking more information/help
 

Greetings all...

New to this forum. Have been dealing with PPS for many years...using water enemas to evacuate every time I have a BM. Sometimes takes hours to complete.
**

Any leads would be greatly appreciated.

Thank you

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Testing and treatments?
 

Hi Fullmoon. I have been having problems for nearly a year now and live on laxatives. I am interested in knowing more about how you have spent years and still don't have a resolution, its kind of depressing given that I am coming up to my anniversary of symptoms.

I fell and fractured my sacrum at S3/4, having no pain, it wasn't until I had ambulation issues that I finally had an MRI. I don't know if that is the cause, but all of the nerves for the sphincter come from S3/4.

The anorectal manometry and balloon test is supposed to show sphincter function, did you have that? What other tests did you have?

Have you definitively been diagnosed, do you live in a rural area or a city with better facilities?

Has anyone suggested an Colostomy? They can be temporary and being so distal from the stomach can be irrigated in the morning and a cap placed over instead of a pouch?

Is any "doctor" still following you? Have you seen a colorectal surgeon as opposed to a gastroenterologist? The latter are mostly interested in doing colonoscopies and treating irritable bowel and other such diseases.

Anyway, interested in where you are in the process.
:grouphug:

Non relaxing Puborectalis disorder
 

Hello,
I, too, have this condition. It is awful. I was just seen by a colorectal dr. at Cleveland Clinic. What a joke. She referred me to a pain management specialist. I have non relaxing pelvic floor muscles, not pain. She told me they only give Botox shots to people who are incontinent. I had most testing done: defacacophy, manometry, balloon expulsion, ultrasound, emg. I had PT several times with different therapists, have seen numerous specialists, urogynecologist, ob gyn, GI, colorectal, accupuncure, neurologist. I'm only getting worse. No one wants to do a colostomy. I have incomplete evacuation, go several times in am, struggle to get anything out. It's a nightmare.