Levator Ani Syndrome

I am a male with anal pain intermittently for several years but very intense in past 3 months

I now have chronic anal pain,worse when sitting. I have had levator muscle massage but with very little help. No history of rectal bleeding or abnormal BM's.

Would like to know any information about Botox injections and if anyone has had any experience or knows of someone else.


21 Replies

  • Prinx,

    I've had Botox done to relieve anal pain. Where are you located? I had pain with vowel movements and Botox eliminated that; I continue to have sitting/ pressure pain. Now doctors are telling me that my pain is coming from the central nervous system and not the muscles.

  • I live in South Florida, not far from Miami. I do not have pain with bowel movements only severe sitting pain. I usually stand for hours at a time. I heard that Botox could help. Can you tell me more about your experience as

    to what type of Dr. treated you and how many and how length Botox lasts?

    Thank you for your reply.

  • I had Botox injections done by a pelvic pain specialist in San Francisco, California. What areas hurt when you sit or add pressure too. When my pain started, it was localized to the recital area so when I sat down that was the only area that would hurt. Now that the pain has been going on for two years, my sacrum area, butt cheeks and thighs hurt when I sit or add pressure. The skin hurts also when I stand but it get worst (pain increases when I sit). I don't have pudendal neuralgia but my nerves are sensitive which they call central sensitization. The Botox lasted me about 3 months and I've had it done twice. What do doctors tell you about your diagnosis?

  • The pain is at the anal area and after awhile it diffuses with a burning pain out to the buttocks and back of my thighs. Following this the areas become numb.

  • Numbness? I don't have that symptom.. My areas just hurt. My thighs even hurt when they touch each other or when someone presses on them but I have no numbness.

  • Had Botox injection did not work

  • Rozamond,

    Sorry to hear that Botox did not work for you.. How did your pain start?

  • Hi, have you had a history of a bad fall on your bottom, if so it could be a pudendal nerve problem. It would be advisable to go to a neurologist explain your symptoms and ask for a MR neurography of the pudendal nerves. There is a right and left pudendal nerve. Each pudendal nerve has three branches. You can google the pudendal nerve and the anatomy of the pudendal nerve. Also google pudendal nerve syndrome, to see if you think the symptoms match yours. I sympathise with you as I have the same symptoms, they are truly horrific. Mine is complicated as it also causes an unstable right hip. Let us know how you both get on. Good Luck.

  • Hi, I don't know where you live, but if in the UK ask your GP to refer you to a neurologist. Explain your symptoms and ask for a MR neurography of the pelvic nerves and in particular the Pudendal Nerves. There is a right and left pudendal nerve. Each pudendal nerve has three branches. You can google the pudendal nerve and the anatomy of the pudendal nerve. Also google pudendal nerve syndrome. see if you think this matches your symptoms it will also give you a better understanding of your symptoms. I sympathise with you as I also have had the same symptoms I saw a neurologist who referred me to a uro-neurologist to have more specific tests. Unfortunately mine also includes nerves effecting the right buttock causing an unstable right hip. I am waiting now to go back to the neurologist to see what they can do. keep in touch and good-luck.

  • Botox has helped my bowel movements. Much easier to pass. However I still have a pressure type of pain deep in my left buttock/rectum. I have slightly less burning since the Botox though. I am getting checked for prostatitis too.

  • Did you have any problems with bowel incontinence after the Botox?

  • It was one of the things I was warned about when I signed the consent form but no problems so far. It's been about 3 weeks since I had the Botox now.

  • I have always had loose stools with this levitor muscle problem.

  • You are in luck living in Florida because read this I got from another forum

    Re: Levator Ani Syndrome

    Cleveland Clinic in Florida East coast. Dr. Kahn. She treated me for Ani levator with botox.... Saved my life.. %100 finally after years !!!! Good luck if you need more info PLEASE PLEASE let me know. Mike

    Read more: healthboards.com/boards/bac...

    Let me know if you go. Im not sure if I have PN or levitor

  • Thanks Stuchris.

    That post is from 2013. I wonder if that patient is still doing well with Botox. It would be nice to hear what he has to say here and now.

  • you could try joining that forum and replying to his posts. I think that Dr is still there

  • Hey guys I wanted to chime in... I had levator ani syndrome for years and was incorrectly diagnosed by several top GI doctors in Georgia. I read Mike909's post on Healthboards.org and went to see Dr. Khan at the Cleveland Clinic in Westin Florida.

    It took three appointments to get the treatment and WOW I got my life back. I was in the most pain every single day on Vicodin to relieve the pain. It was the worst pain ever. If I wasn't in the family business, I would have lost my job and my whole life. The treatment cost a few thousand dollars each time plus travel but it was worth every penny.

    The doctor recommends three treatments and I've had it done twice, but going back again in a month.

    I went to physical therapy for a long time and it only made the problem worse and was very uncomfortable. Now I'm not taking any painkillers and I can actually stand up for more than an hour at a time.

    I am very thankful for Mike909's post on healthboards that's the only reason I'm here today pain-free.

  • I have Levitor  Syndrome.  Or so I'm  told.

    What did you have done to take the pain away? Any help please.  I have your  symptoms. 

  • Rmoretz,

    Sorry for the late reply...  Can you send me an email at levatorpain@gmail.com?  I would love to help you...  I am dedicated to helping people who have levator pain.

    Please give me as much information as you can...  Age, gender, location, description of pain, rating of pain at it's worst, frequency of pain, any treatment you have received, etc...

  • That email address didn't work. My email to you couldn't be sent.

    Another email address maybe.

    Anxious to hear what worked for you. I want my life back.

    My Levitor pain is a 10 - 24/7.

  • Still waiting to hear back from you.

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