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Anismus - Anyone Else? Treatment Options?

I'm a 24 year old female suffering from anismus or "anal sphincter dyssynergia".  I'm looking for other people who share this digestive disorder.

What have you been thru and what are my options?

The only alternative to surgery I can find is biofeedback which isn't working very well for me.  I'm learning about botox injections and possibly acupuncture.

I started a Yahoo Group for people with anismus.  It is located at http://health.groups.yahoo.com/group/anismus/

If you have anismus, please join and help me.  Share your story and knowledge.
54 Responses
Avatar universal
Hi there,
I also have this problem and have tried biofeedback, and it's also not helping me. What I'm considering is the "Stanford Protocol" as recommended in a book called "A Headache In The Pelvis."  While it's directed mostly toward men with pelvic pain, it also applies to people (women) like us.  They have a 6-day seminar at Stanford University where people can go and learn how to do trigger point massage on themselves and also there's a relaxation technique you learn. Then you go home and spend 2 hours a day doing this and in time it's supposed to help tremendously.  I hate the thought of having to do this 2 hours every day, as I also am ill with major fatigue, but will try anything to get relief!!  But can't afford to go out to California for this seminar....  Anyway, I would love to talk more to you. I've been looking to talk to someone about this forever, but haven't found anyone until I was searching on the internet and found your post. Would love to chat!!
Take care,
KP
Avatar universal
Wondering if the site is still active with member suffering with anismus?
I have a 12 year old son who received that diagnosis 4 months ago and need daily enema.
I looking for as much information as possible in hope that he could go back go normal bowel function
Avatar universal
hi i have anismus and will be sharing my experiences and views with you shortly i am sending this message to confirm the link will speak with you soon regards a sufferer or should i say survivor
Avatar universal
Hi, i'm a bit late to come here, hope you still visit this forum... And sorry for my english.
I have anismus, too, for some 22 years (i'm 40). Several years ago i did biofeedback, and it helped a little, but then my condition worsened and returned to pre-biofeedback state. Then i found a "cure": smoking. I know it's killing me, but it returned back my quality of life. I DON'T recommend it to anybody and really, i'm desperate. I already have asthma because of my smoking, but i continue to smoke cause i want to function as normal human being and not to spend all my day in the bathroom.
Just wanted to share.
Good luck.
H
Avatar universal
Hello, I have a question for all of you who are commenting on this page....how did you find out your diagnosis? I am a 24 year old female who has been having constipation problems all my life. As I got older the symptoms worsened and i had a colonoscopy at age 17. The doctor told me is was IBS and has been prescribing me medication. Most do not work, except for the meds that cause horrible diarehhia.  I have not been taking the meds and just deal with the constant stomach issues. I never believed it was IBS because the symptoms have been constant all my life regardless of is i am under stress or not. What can i do to be tested for this? I am curious as to if it would have shown in the colonoscopy or if another test should be done?

Thank you for your help!
Avatar universal
Hi...

Could you please tell me the symptoms of anismus??  I'm having some problems and wondered if this could be it??

Thanks,
Krs
Avatar universal
Hi KM25! :)

Anal - Rectal Manometry may be done to diagnose anismus.

http://bladder.wustl.edu/obgyn/urogyn.nsf/WV/0BD5B91FB7BDE0138625718000700400?OpenDocument

"how did you find out your diagnosis?" I kept telling my doctors that i felt my colon didn't emptied entirely. They didn't trust, but I insisted. So my last doctor (a good one as opposite to my former doctor, an awful one) after all the tests that found I don't have an organic pathology sent me to do Anal - Rectal Manometry and then to biofeedback..

Hope this helps.

Good luck!

H  
Avatar universal
Does anyone live in Oregon/Washington with this?  Just got diagnosed about 11/2 months ago.  The doctor who diagnosed this told me- I have one of the WORST cases of Anismus he's seen in the 19 years of specializing.  I don't know much about the out come with this...how long it usually lasts or if it even gets better.  Please give me some input from your experience.  Thanks you and Take care.
Avatar universal
I think I have Anismus. My back passage tightens on its own without me thinking about I, when I realised I conciously relax it only to find a short while later that it has tightened again. this happens over and over. Is this Anismus? K
Avatar universal
Through research I have done , I most definitely have an involuntary contraction of the sigmoid sphincter , this has caused the worst problems for me in my life , bloating , constipation , pain, pressure ,looking pregnant  and so on , for 25 years  I have suffered with this and no doctor has advised me correctly ! . FYI , once upon a time fluoxetine gave me a reprieve for 2 months and a trip to Amsterdam where I ate a magic mushroom relieved my symptoms for one evening , does anyone know how to treat this ? long term
Avatar universal
I have the exact same problem.   What you call the sigmoid sphicter, I call the puborectalis.  The constipation, bloating, appearing pregnant, pain and pressure and above all the contant anxiety of whether I can relieve myself or not, are all things that I continue to have.  I have seen reports about a research team in Rome that has used botox to great success.  I have also read about partial resection of the puborectalis muscle to get significant improvement (Howerver in the US, doctors are reluctant to perform this operation since leakage can result.).  I take a low dose of Zoloft which provides more seratonin and as a side effect it increases the peristalsis of the colon to help.  Baskically I get thourh from year to year (7 years so far) using a combination of Milk of Magnesia, Zoloft, more fiber in diet, liquids, coffee as a daily "prolpellant" laxative, Flents glycerin suppositories with vaginal gel for lube and occessionally Dulcolax.   After eating is a good time to try to go, since food entry into the stomach and deuodenum stimulates peristalsis and evacuation.   Nothing is perfect and the frustration is endless but I somehow manage to get buy.  This is such a rare condition that not evern doctors know about it.  Its completely screwed up and trips up one' life.
Avatar universal
anismus or non-relaxing puborectalis can be a very devastating condition.  It causes frustration and pain!  However, there is treatment for this condition that can be effective.  First, you have to be properly diagnosed either with ano-rectal manometry or defography.  If it is indeed your problem, go to a physical therapist in your area that works on pelvic floor dysfunction.  We are out there but most doctors don't know about it.  Treatment can include internal massage/stretching of the muscles, biofeedback, and relaxation.  Sometimes, medication that is normally for anxiety can help as well as it secondarily causes muscle relaxation.  Botox is absolutely effective but there are not many doctors who do it except in larger cities like NY, CA, FL but you won't know unless you ask.  
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