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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.  
Avatar universal
when i try to use the bathroom after ive had a bowel movement, my anus just closes making it almost impossible to clean myself up.  is this anismus?

thank you.
Avatar universal
Hey there, wow I finally found a site where people have the same problem as me. Like everyone I have had troubles all my life with constipation etc. I am a reg. visitor to hospital and only last year had something radical done. Most of my large bowel has been removed (only 28 cm remaining) with an ileo-sigmoid anastomosis. That was about 18 mths ago. That has given me no relief and still visiting hospital for cleanouts and pain relief. I was diagnosed with an anismus before this bowel surgery and tried biofeedback and other various things. I saw a bowel specialist 2 mths ago and he has come to the conclusion that I need to have further surgery (completion colorectomy with a defunctioning ileostomy). At the moment I would try anything to make this problem better. As u guys know it impacts ur life immensly. The pain is terrible at times, I try to work when I can but have lost out financially, have a thing about the foods that I eat cos I know it will either cause pain and block me up and never go on holiday (in particular camping and Im sure I dont have to explain why). I am really scared about this surgery due to the last one. I hemorraged and ended up in ICU having another open up to remove 4 litres of blood and then 2 mths later got opened up again for adhesions. I am only 34. I want to have a life though!!! I have talked to loads of peeps with bags and they have all said life is much better for them. Have u guys anything radical done????? Apparently I would have to do biofeedback again after the surgery to regain optimum bladder control. The bag may be reversed if I really dont like it. I have also had a capsule endoscopy done (pillcam) and that revealed that I have 23 polyps in my small bowel, I wonder if that has been causing the blocks along with the anismus. Hmmmm. I am on regular codeine for pain which is a farce in itself cos it blocks u up.......omg can they not nvent really good pain relief for bowel people lol. Anyways interesting site. Oh btw, I am from New Zealand. I would say have a great day but instead I'll say I really hope u go to the toilet today.
Thanks
Avatar universal
Anismus:  I was just diagnosed at Mayo Clinic with this troubling condition.  Those sphincter muscles in my case were damaged over a long period by lumbar disk herniations.  It was a final straw when the disks finally collapsed.  It took some miracles to get doctors to recognize my need for surgery.  They expressed regret that the damage for my case will likely be permanent because "I" had waited too long to seek help.  The main damage was to my sciatic nerve into my legs.  The secondary fallout was that these sacral nerves in the form of very tiny threads that form the "cauda equina" or horsetail exiting the sacrum (being more fragile) were severely damaged.

From what I've been told:  These little nerves are part of the relax controller for the pelvic floor, the peritoneal area, the lower bowl, the sphincter and bladder sensation.  They fine tune the innervation of these areas also ruled by other nerves descending from further up the spinal cord.  When they've been injured or destoyed the coordination of the whole network gets confounded and a lot more complicated.  The harder you push, the tighter it gets instead of relaxing.

Mayo recommended a retraining program with a therapist &/or biofeedback for the little bit of control I still have.  It's more time and money than I am able to expend.  Looking to herbal support for the body to relearn and help itself I've found reference to Chanca Piedra an herbal antispasmodic that helps the relaxation of muscles like the pelvic floor.  It is recommended for gall bladder therapies of stone removal to minimize cramping and spasm associated with the process.

Another part of the equasion I find it intriguing that the latest Mayo research in constipation therapies is the use of the drugs such as Ursidol (ursodeoxycholic acid) for the treatment of constipation. This drug is normally used specifically to dissolve gall stones, but creates loose stool as a side effect.  I just learned of this from my doctor today via phone consult.

It's a fine balance to help the body reach "normal" function vs. forcing the issue.  I try not to use a sledge hammer when a tack hammer will suffice.  I'm planning to try these avenues and share my experience for any who may benefit.  Like other folks I'm also a bit focused to find remedy.  Not knowing when I will be able to "go" and preventing compaction vs. blowouts and leaking makes for a very stressfull life.  It's all very new to me as is webbing.  
1 Comments
This is a good view of the anismus problem. Everone should consider if they in their lifetime, has experienced an injury to the lower back. The sciatic nerve has a wide range of small nerve-threads that can cause a lot of troubles concerning lower pelvis, bladder and rectum. Damage of the coccyx, which is common, is offcause evident when talking of anismus and malfunction of lower bowls.
Avatar universal
Try this
http://www.enemagra.com/faq.php
Plenty of lube, please
Avatar universal
eeeeeeeven better:
http://www.nexusvibro.com/
Avatar universal
i live in oregon. have been seeking treatment for 2+years now. tryed botox once after biofeedback and manual stretching therapy. have had all the tests done which also show colonic inertia, rectocele which dr.'s are telling me is from anismus. gotta some relief from botox about 30% better yet still suffer from other issue's. very frustrated as i'm sure you all are, feel totally robbed of my self confidence and enjoying life.
Avatar universal
Man, this s&%$&t is making my life miserable. is there anybody that knows how handle this situation, please.
Avatar universal
hi,
ive suffered from what the docs think is anismus for 2 years now. i began with severe pelvic pain, so after numerous doc appointments privately in london, i had an operation called pph surgery (usually for hemmorroids but in my case for pelvic floor descent apparently. ) i was fine before surgery , just had pain after going to loo. Post surgery i began having real problems evacuating. Everything just felt blocked. had to use fingers/enemas etc. Awful. The only way i can have a normal life is on Movicol (miralax in the U.S) . I have to take 2 every evening . If i do this the stool is very soft  i can manage this ok. However i want to get off of these laxatives and be normal again. Had biofeedback twice and it helped very slightly if only to reduce anxiety. Doc has now recommended eat more fibre even though the biofeedback nurse said fibre can be the worst thing for people with this syndrome. Doc thinks the safest long term solution is use of a bulb enema everyday to evacuate. This si supposedly harmless long term.
thinking of trying botox next. Does anyone else feel as though the blockage feeling is higher up in the rectum.? I have trouble getting the stool down to the entrance! Once its at the entrance I am more successful on the loo!
Avatar universal
"Does anyone else feel as though the blockage feeling is higher up in the rectum.? I have trouble getting the stool down to the entrance! Once its at the entrance I am more successful on the loo! "

yes, exactly.
Avatar universal
I have had anismus for over two years.  The pain was excruciating.  My GI doctor only prescribed Anucort suppositories.  At first it helped a little.  Then the pain became much worse.  I knew I needed much more than just a suppository.  On the advice of a nurse I know, I went to a Colorectol doctor.  At first he thought was internal hemorroids and gave me injections for that.  After a few visits he suspected anismus.  I had a defecography test at a hospital.  I haven't had the results yet.  I have two more tests to do - manometry and anorectal ultrasound.  This is quite a rare condition, so they don't do these tests all that often.  In the mean time I have found that taking milk of magnesia and benefiber at night, which helps keep the bowel movements soft.  I always use a sitz bath with warm water when I go to the bathroom, which has helped me relax the muscles.  I spend a lot of time in the bathroom, two or three times in the night.  The pain is worse always after lying down, which may be a sign that the nerve damage caused by a compression fracture in my L-2 and spinal stenosis are contributing factors to the anismus.  It's important to find a good colorectal specialist, as my regular GI doctor left me to suffer for a long time without doing anything.  Good luck everyone, I empathize because I know what the suffering is like.  I will let you know the results of my tests next month.
Avatar universal
I was diagnosed with a paradoxically contracting internal and external sphincters after a mamometry recently.  Is this the same thing as anismus?
Avatar universal
Hi everyone I posted a comment early on up the forum and did not return as felt it was not being used any more.Only to find to my surprise that it is.I have read all the comments with extreme interest.I have had anismus for 20 years in the conditions early stages my GP thought I was mad,She just prescribed masses of laxatives that did not help at all,it is hard enough having to tell the doctor in the first place.Years went by and I managed this condition but it does interfere with aspects of your life,and I once again went to my GP.Fortunately for me our local hospital had a new Ano rectal consultant who sent me for various test including the relevant tests for a diagnosis of anismus.These tests confirmed his suspicions.I was sent for bio-feedback with no effect and that was about it.I continued to suffer this awful condition and eventually was refered back.I have been told there is a device that might benefit me.Apparently it is like a small pacemaker that is inserted into the lower back this is operated by voluntary muscle contraction that allows the sphincter to relax and allow you to deafacate,As far as I am aware it is in the early stages of being used but results are promising.The device is also used for helping people with diarrohea as shown on the TV programme embarrassing illnesses.I am hoping that I myself will be tested for one of these devices but I need to go through Biofeedback again because of the costs to the NHS.Lets all hope that our rare and difficult condition will be eventually recognised and that a cure will be found.I have to wind up now as once again it is time to go to the loo.best regards to you all Downside
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