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-   -   New member seeking info on Nonrelaxing Puborectalis Muscle (https://www.neurotalk.org/new-member-introductions/153544-seeking-info-nonrelaxing-puborectalis-muscle.html)

Chemar 12-20-2011 03:18 PM

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?

C. White 10-16-2013 06:32 PM

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

Quote:

Originally Posted by Joshea2 (Post 810782)
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


A03613 08-31-2014 09:22 AM

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

Lara 08-31-2014 01:54 PM

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

Darlene 09-02-2014 12:04 AM

Nice to meet you!!
 

A03613,

:Wave-Hello:It is great to have youcome and be with us. There are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

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:

Kitt 09-02-2014 08:43 AM

Welcome AO3613. :Wave-Hello:

roxystarfire 07-20-2015 03:21 PM

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 :(


Quote:

Originally Posted by Joshea2 (Post 810782)
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


Darlene 07-21-2015 12:07 AM

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:

Frodo-dog 07-28-2015 10:18 PM

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.

Lara 07-29-2015 01:30 AM

Hello Frodo-dog,

Welcome to the NeuroTalk Support Groups!


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