Levator ani syndrome (i.e., pelvic floor pain

Levator ani syndrome (i.e., pelvic floor pain
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Anonymous
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Feb 23, 2005, 11:37 PM

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Levator ani syndrome (i.e., pelvic floor pain	Quote \| Reply

Hello, my name is Linda and I am hoping to meet someone who is
experiencing the same thing I am, to get someone else's input. I
suffer from Levator Ani Syndrome, something that is relatively new,
and I am miserable. At this time, I am receiving Kenalog injections
internally on the levator ani muscle. Today I had my second series,
with the first one 2 weeks ago, then one today. My doc is going to use
Botox if the third Kenalog injections do not bring any relief. My
problem has been going on almost a year, and it started after having
my bladder lifted. I have had three children, and presently I am 52
years old. Is there anyone else out there that is suffering from
this same syndrome? Is so, I would really like to talk with you. My
email address is pmsiblinda@aol.com. I will only open a message if you
put pelvic pain in the subject line. Any one who might be able to
help me, please email me! Sincerely, Linda

Anonymous
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Feb 27, 2005, 9:36 PM

Post #2 of 39 (2124 views)
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Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Hi Linda, how are you doing? Antibiotic will usually cure the acute
disease within about 6 weeks, according to Divina Gracia
Rualo-pasigan, M.D., Gynecologist and Obstetrician, Attending
Physician, New York Infirmary. If not adequately treated, however, the
acute form can develope into chronic prostatis with frequent more
attacks or cause structure (closing) of the urethra, blocking urine
and requiring dilatation or surgery. Blood poisoning (septicema) is
also a lurking potential. Be aware of warning signs of the chronic
form. In chronic form, there is usually no fever, but a great
frequency of urination, loss of libido, and bouts of impotence.
Sedatives or opiates if pain is too intense, to bare, along with bed
rest, broad-spectrum antibiotics if the infective agent is
undetermined, and serveral hot sitz baths daily. Contact your doctor
right away, before you begin any regimen. You doctor may want to
culture the discharge to know the organism so that a specfic
medication can be administered. Rectal massage of the prostate may
worsen the inflammation and spread the infection; it should be delayed
until acute symptoms have died down. If you have a sex partner, they
should be examined and treated. Plenty of fluids are prescribed but no
alcoholic beverages of any kind. Sexual intercourse is not allowed
until the infection has been eliminated (about 6 weeks). Since potency
is often limited in this disease, celibacy is no hardship. Best
wishes,

Anonymous
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Apr 14, 2005, 1:58 PM

Post #3 of 39 (2124 views)
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Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

I am also suffering from chronic Levator Ani Syndrome but I never had
anything wrong with my bladder. The symptoms in my case are all
rectal. I am fine in the morning until I have a BM (very soft due to
all the fiber I have been taking), then my levator muscle start
spasming all day until I go to bed. It stops during the night to
resume the next day after BM. I have had PT by three different
therapists, acupuncture, manual theraphy by an osteopath, seen 4
different doctors (2 being colorectal surgeons) but nothing seems to
work except Vaium/Ativan. Does anybody have the same symptoms?

LEVATOR
Anonymous Poster
miccika1@yahoo.com

Aug 17, 2005, 11:03 AM

Post #4 of 39 (2072 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

i have same exactly symptoms as you, pain gets worse if i sit, and it gets better when i walk, i;m going to see PT soon, how was your experience with physical therapy?

Guest
Anonymous Poster
sandyguider@blueyonder.co.uk

Sep 1, 2005, 8:15 AM

Post #5 of 39 (2003 views)
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pelvic pain [In reply to]	Quote \| Reply

I have had this compaint for four years and am very [email]ry slowly finding a tiny bit of comfort from it.
I know how you feel and myself am at the end of my tether .but if you want to discuss it i am will to e.mail you in the future.

Guest
Anonymous Poster

Jun 22, 2006, 5:49 PM

Post #6 of 39 (1749 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

In Reply To

[reply]I am also suffering from chronic Levator Ani Syndrome but I never had
anything wrong with my bladder. The symptoms in my case are all
rectal. I am fine in the morning until I have a BM (very soft due to
all the fiber I have been taking), then my levator muscle start
spasming all day until I go to bed. It stops during the night to
resume the next day after BM. I have had PT by three different
therapists, acupuncture, manual theraphy by an osteopath, seen 4
different doctors (2 being colorectal surgeons) but nothing seems to
work except Vaium/Ativan. Does anybody have the same symptoms?
[/reply]

Guest
Anonymous Poster

Jun 27, 2006, 9:46 AM

Post #7 of 39 (1732 views)
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Re: [Guest] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

The second post scared the you know what out of me cause i think i have this as well!!!! Been to rectal surgeon, gyno and going to an osteopath Flexeril does nothing for me except make me sleepy...please tell me this cannot continue for the rest of my life???

dianne
Anonymous Poster
motherjohnson@mail.com

Jul 25, 2006, 4:06 AM

Post #8 of 39 (1659 views)
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Re: [Guest] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

In Reply To

A Physical Therapist gave me a great hint he said try a frozen hotdog-it helps-cools the swelling,etc.be careful its thawed out!!! use lubricant,[

Guest
Anonymous Poster
miccika1@yahoo.com

Sep 7, 2006, 8:05 PM

Post #9 of 39 (1570 views)
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Re: [dianne] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

dida anyone try botox injections for levator ani syndrome. i might try it soon. please email me if you know anyting about those at miccika1@yahoo.com

In Reply To

diannem1946
New User

Sep 16, 2006, 5:28 PM

Post #10 of 39 (1542 views)
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Re: [Anonymous] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

"CURED" AFTER 3 YRS SUFFERING FROM LEVATOR ANI.
I TAKE 5 MG VALIUM EVERY 3 NIGHTS PER DRS ADVICE. IT WORKS FOR ME THANK GOD!!!! IT IS MOSTLY DUE TO CONSTANT MUSCLE SPASM IN THE RECTUM (LEV. ANI MUSCLE) I AM A REGISTERED NURSE IT STILL TOOK ME 3 YRS TO FIND A DR. WHO UNDERSTOOD!!!

WRITE TO ME WITH QUESTIONS.ALSO READ "A HEADACHE IN THE PELVIS" BY DR WITH LEVATOR ANI HE REALLY UNDERSTANDS!!!!!!!!
motherjohnson@mail.com

(This post was edited by diannem1946 on Sep 16, 2006, 5:33 PM)

Guest
Anonymous Poster

Oct 4, 2006, 4:20 AM

Post #11 of 39 (1476 views)
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Re: [diannem1946] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

I cannot believe I have found someone wlse who has this, 25 yr old had this for 19 years and past 6 weeks has become unbareable, no sleep for 3 days even on sleepers due to the twinge/pain, anyone willing to catch up - be very very appreciated to know any ways of treating/helping

rosscoh@dsl.pipex.com

Guest
Anonymous Poster

Oct 6, 2006, 11:20 PM

Post #12 of 39 (1456 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

I don't think you are discusing Levator ani---it is not an infection but a spasm of the rectal muscle L. ani.thanks anyway.

Guest
Anonymous Poster

Oct 6, 2006, 11:22 PM

Post #13 of 39 (1455 views)
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Re: [Guest] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Post # 12 is in response to post #3

Guest
Anonymous Poster

Oct 6, 2006, 11:24 PM

Post #14 of 39 (1454 views)
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Re: [Guest] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

In Reply To

Post # 12 is in response to post #2

Guest
Anonymous Poster

Oct 10, 2006, 2:36 PM

Post #15 of 39 (1440 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

YEP too the T
I do have a fissure and that started it all.
Had heart bypass-and they did not make me have a BM before I left the hospital-basterds.
hence-Im a victim with the rest of ya-but GOT to be help or cure for this-has to be. Pirate

JohnO
Anonymous Poster
orrellj@ci.worcester.ma.us

Nov 30, 2006, 9:52 AM

Post #16 of 39 (1288 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Yes -- I have the EXACT problem. I have been through hell and back. Has anything worked for you since these posts?

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Anonymous Poster
bjc0403@email.com

Jan 9, 2007, 10:33 PM

Post #17 of 39 (1262 views)
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Re: [JohnO] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Have had pelvic floor myalgia (just another name for what you all have been discussing) for a year. Pain from ovarian cysts, adenomyosis and severe stress set it off the pelvic floor into spasms. Even after hysterectomy, pain returned after numbness wore off. Finally found ob/gyn specialist who has been trying to treat with lidocaine injections in vaginal and rectal injections but effects only temporary. Using Percocet for pain. Physical therapy for biofeedback. But until now, relief has been temporary and ususally just a few hours. Tpday I had first botox injections and at last, pain relief. Pain relief that is amazing. I had forgotten what it was like not to have pain. It was just the first set of shots and only vaginal. The pain relief is so great in the vaginal area that the rectal pain is painfully obvious to me tonight. I did not have the botox injected into rectal area because of fear of not being able to control bowel movements but after getting the pain relief from the vaginal botox shots, I am seriously seriously considering rectal shots on next appointment. Also, find a doctor who will check you for interstitial cystitis. This can also cause pain in the area and there are many, many doctors who don't even believe it exists. Keep this in mind when looking for doctors. You have to find one who will not just rely on tests but will look at symptoms. None of my bladder tests showed anything but ob/gyn treated it anyway with Pentosan and I got terrific relief in two weeks. So my advice is to find a ob/gyn chronic pelvic pain specialist who will do the Q-tip test ---- if you haven't had that done, then you are at the wrong doctor. Then try the trigger point injections and if that doesn't work, try the botox. And for goodness sake, find a doctor who will give you pain meds. It is a disgrace that women are walking around in this much pain with all the meds available. Look at the American Pain Foundation website for links. I'll try to let you know how next round of botox turns out. Hugs to all in pain. I understand your frustration and desperation.

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Anonymous Poster
bjc0403@email.com

Jan 9, 2007, 10:39 PM

Post #18 of 39 (1260 views)
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Re: [JohnO] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

And p.s. - men can also get pelvic floor myalgia. Men can have just as much pain. Try emailing to urology specialists at bigger universities like Stanford. They all usually have an email and most will respond to emails asking for help. Ask if they know anyone in your area.

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Anonymous Poster

Jul 26, 2007, 9:58 PM

Post #19 of 39 (1046 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Well, hello. I finally found this forum again, from a person that emailed me. I saw your reply dated 2-27-05. I thought the information you gave me was interesting. I still have this problem, and it's been over three years since my suffering started, and today I am no better. I have seen numerous physicians, ... you name it, I have tried it. I would like to hear more input from you on this problem.

Thanks, Linda

In Reply To

Guest
Anonymous Poster

Jul 26, 2007, 10:03 PM

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Re: [diannem1946] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

In Reply To

Diane, is the 5 mg valium every third night still working for you for your levator ani syndrome? Just wondering. I am still suffering tremendously with this. I take a Xanax every night, and it helps temporarily. Just wondering if you are back to normal.

Thanks, Linda

Guest
Anonymous Poster

Jul 26, 2007, 11:58 PM

Post #21 of 39 (1042 views)
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Re: [Guest] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Yes, valium seems to be a big help. I order online and from my DR.. massage is tempory. Large sausague suggested by physical therapsist helps alot by stretching.

Guest
Anonymous Poster

Jul 27, 2007, 12:06 AM

Post #22 of 39 (1043 views)
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Re: [Guest] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

write me at motherjohnson@mail.com Post about valium and stretching from P.T..
Dianne Johnson 770-717-7980 Home

Guest
Anonymous Poster
jmb3000gt@aol.com

Jan 13, 2008, 12:10 AM

Post #23 of 39 (904 views)
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Re: [Guest] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

hi i have had levator syndrome for 16 yrs. i am now 53. i have tried everything out there. medicines, electric galvanazation, anti depressants you name it. nothing cures it completely. meds. take the edge off. the rectal spasms can be so bad. sometomes lasting all day unti bed. then it[email][/email][reply] starts again the next day. sometimes there is no pain. then it will return without warning. i notice it gets worse with anxiety. i do have an anxiety disorder so that doesnt help. if you know any cure please let me know. thank you so much

Lel
Anonymous Poster
Trup4@optonline.net

Jul 13, 2008, 10:14 PM

Post #24 of 39 (530 views)
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Re: [diannem1946] Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Hi,

My dad is suffering from Levator ani spasm.
Can I ask you a few questions in reference to this??
He read the book you mentioned and is seeing a PT . Would love to talk further about this with you.

Kelly
Anonymous Poster

Jul 21, 2008, 9:20 AM

Post #25 of 39 (513 views)
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Re: [Anonymous] Re:Levator ani syndrome (i.e., pelvic floor pain [In reply to]	Quote \| Reply

Levator Ani Syndrome is not an infection nor a disease, it is a muscle spasm. No antibiotic will "cure" levator ani syndrome. Levator ani actually means "anus lifter" so with that said you can just imagine how painful it can be when there are spasms in that area. This muscle is attached to many other muscles in your pelvic area. Remember that song "the hip bone's connected to the thigh bone, etc"? It's the same with your muscles.

I was originally diagnosed by a wonderful physcian at the Mayo Clinic in Jacksonville, FL. I had a hysterectomy in Sept of 2000 due to utero-vaginal prolapse. I had a laproscopic assisted vaginal hysterectomy (LAVH) where a retractor is inserted into the vagina to hold it open so that the uterus can be removed through the vagina. At the same time I also had what is called an A & P repair (anterior & posterior) to repair muscle that was damaged when giving birth 16 years prior and repair the bladder wall. We are not certain if the prolapse or the surgery caused the levator ani syndrome and it really doesn't matter. What matters is finding relief from the pain.

There are many great physical therapists out there who can perform ultra sound, electro therapy, massage to lengthen the muscles and stretches. My physical therapist has me take a latex glove (use rubber if you are allergic to latex) and fill one of the fingers with water and then freeze it. I insert that and use as she directs when necessary and that helps as well. The valium does help as well. Remember that for some of us it is a combination of these things that works.

I will say that if you are a woman it is more comforting to have a female physical therapist because the nature of the massage is that they go into the vagina to lengthen that muscle. The ultra sound is done the same way.

You need to know what aggravates it. I have had issues with IBS and the severe intestinal cramping has caused my flare ups, though that is not the cause of the syndrome. Also, the way you sit..do not cross your legs over each other. Sex can aggravate it, so it is very important to take your time. It can be a chronic condition as it has been for me and it affects everything in your life. If you've never had chronic pain before, I can tell you that it wears on you mentally, physically and emotionally. Please remember that you are not alone. And you need to let your doctor know how you are feeling. If they blow you off, find another one. The doctor who performed my hysterectomy was a doctor whom I worked for. He was a great surgeon but when I still had pain after the hysterectomy he wrote me off as being "whacked". I went to May behind his back and when I got the diagnosis I cried. I was relieved to know that this wasn't "in my head" and that there was a name to it. More importantly there were treatments.

You are not alone and I hope this helps.

Kelly

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