Levitor ani syndrome

Botox done twice now. 100cc 1st time. 200cc the 2nd time. Nothing. Now I'm  doing acupuncture.  She says  I'm  a puzzle. Nothings working yet. Very frustrating.  I'm  so tired of my heating pad. I want my life back. Friday I'm  seeing my PCP again. I need to know where else I should go to see and what to do next. Does anyone with levator syndrome  have pain 24/7 ? HELP !!!! I'm  wondering  if I've  been diagnosed  correctly.  Also I go to a pelvic massage therapist. Not helping either.  Medications have done nothing..

33 Replies

  • Sometimes I think the source of the pain is further up in the bowel or nervous system. I believe it's a compounded problem and everything further down spasms up from the source. I had 200 units of Botox.

    I had my obturator internus botoxed which fixed that, but then it felt like I had deeper rectal pain.

    You could also get your physiotherapist to check your piriformis muscle.

  • Thank you. Any opinions give me something to follow up on.

  • I will look up this professor as I am based in Australia too. I believe chronic pelvic pain has to be more than physical pathology as even my GP said most of his patients with pelvic pain......the scans show nothing.

  • Hi! Sorry you're feeling like this, it's horrible to be in pain for any length of time. I just wanted to give you some hope. My pain management clinic has introduced me to the work of Professor Lorimer Moseley, who is a prof of neuroscience in Australia, who specialises in pain. He has some lectures on YouTube that are designed for general audience rather than Drs. He's written a book called Explain Pain, it's available on Amazon, but it's £55 so not cheap. In short it tells you where pain comes from, and that it's possible to turn it off, or at least quieten it. It helps if you have a specialist work through it with you, but it is possible to do it on your own...I have a PhD in medicine, and I was dubious at the start thinking it was a bit wacky and not scientific etc, but I can honestly say that it IS scientific and based on years of research, so I am spreading the word as its a real eye opener. I'm still in pain, but I've only just started working at it, but I have noticed a difference in the pain already and feel prepared to deal with everything much better. I've started making plans again, which is big for me as I've had pain since 2007, and had completely isolated myself! I can see a time where it won't hurt as much, and I'd completely given up really as no 'treatment' had worked, and I'd gone from having a great career, dancing in my spare time, to sitting at home and using a wheelchair! I do have another condition as well which is the reason for the wheelchair so don't panic!! 

    I hope you soon start to feel better xxx

  • Thank you for your reply. I hope the best for you too. 

  • Have you had some success managing your pain with any medications?  My GP wants to try me on cymbalta but I have declined for now.

  • Nothing  I've been given has helped. Very fustrating. No one knows what will work. And it doesn't  work for the pain.

  • Actually my pain management doctor offered me this book. He purchased a bulk lot of copies so he could sell them to his patients at a slightly cheaper rate.

    Of course I didn't take much notice and didn't purchase this book but I will look into it now. I always believed my pain had to be 100% physical, but after years of tests and scans where everything appears normal it has been extremely frustrating.

  • Please give me more information  on this book. Thank you.

  • You may have another pelvic muscle that is also tight (obteratoer internus maybe?), and that is actually more responsible for the pain. Even though I admire all PTs who work in the private area, I've learned they aren't equal in ability level. I had to go throuh 8 women's PTs before I found one who knew what she was doing. Try a different therapist. In fact, try a few.

  • Any suggestions  for meds. 

  • I've tried several meds and the only one that's reduced the pain (by about 50%) is methadone. Very few side effects, no loopy or drugged feeling, and works wemll for nerve-type pain. I take the lowest dose (a tiny 5mg pill) every 8 hours. After being on it for 5 years, though, I feel I need to go up a bit in dose. 

  • Make sure you take a stool softener every night. I take 30mls of lactulose in the evening.

    I've found lifestyle modifications has been the best way to manage the pain rather than heaps of medications. 

    I've tried lyrica 75mg twice daily. It at least gets you to sleep each night. Takes the edge off the pain.

  • Thank you for your  help.

  • Who do I ask about finding another pelvic physical therapist  ?

    Have you tried a acupuncturist?  I was told that  might help.

  • Are you in the US? If so, apta.org has a feature to search for PTs in your area (choose "women's health" and confirm they do internal on their website or by calling).

    I have tried acupuncture and it didn't help, but "dry needling" or trigger point injections (when done correctly, which most doctors aren't good at) work to release the trigger points in the muscles.

  • Thank you for the information . I'm  not on any meds right now. Nothing  has worked so far.  

  • You've got to get in there and work out what muscles are in spasm......A good pelvic floor physiotherapist should be able to figure this out for you.

  • I'm  trying to find another one now. The 1st and only one I've  had isn't  helping. I've  had over 10 sessions with her but nothing has helped. So I'm  in search of another to try. Not many  in my area.

    Thank you for your help.

  • Oh btw, I have a question for you.  Did insurance cover your botox without you having to send in an appeal?  I'm wondering if botox is covered when the diagnosis is Levator Ani Syndrome.  I know that for only "pudendal pain" diagnosis, it isn't yet.

  • Yes my insurance  covered everything.  Just wish it would have worked. Every one is different. I was ejected 3 places on each side. Muscle and trigger points. 

  • Thanks for the info. One more thing I forgot to suggest. Have you tried Xanax? It is actually a great muscle relaxer; it's not just for anxiety. One low dose pill really relaxes the spasmed up muscles. Some people take valium or valium suppositories instead, but that didn't work for me.

  • I asked  my doctor today forXanax. He said no. Because it wouldn't  help if the Valium didn't.  How does he know ? He doesn't  have pelvic pain.  And everyone is different when it comes to pain.

  • Yeah, your doctor is wrong. Valium didn't decrease my pain but it did knock me completely out cold. A low dose of Xanax, on the other hand, really helps. It does make me drowsy (not everyone gets drowsy), but not as much as when taking valium. I would ask once more and if he says no, I would seriously consider looking for a doctor who is willing to try to help you and is willing to try everything possible to make you better. Most docs don't give a darn about us patients or their job. They are depressed and miserable (I've dated about 5 doctors and have others as friends; incidentally, one doc I dated committed suicide and my first pain doctor also committed suicide). It takes visiting several before finding that rare gem of a doctor. That Dr for me is actually a psychiatrist. I don't have mental illness (except depression from the pain), but I go to him because he is constantly spitting new innovative ideas out that he can think of. He is one of those rare people who will lift a finger to help someone.

  • I'm  switching doctors after today. I got no where with my doctor today. He didn't  help me at all. But he never has. I've  done all phone calls and made all my appointments  myself. I'm  done with my primary.it's nice you have someone to help you. I'll  ask the new doctor for this med. Thank you.

  • I tried. Why does every doctor ask if you've  fallen  or been in an accident ? Is that related  to this?

  • I think that's just a routine question for anyone who comes in with pain.

  • I also tried Belladonna  Opium Suppositories.  Didn't  help me but maybe someone else.

  • Ah, okay, thanks! I was very curious about those actually. If it didn't help you, I can almost say for sure it wouldn't help me since very few meds have helped me AND since I take methadone, I heard any effects of other opiates would be blocked. The methadone helps me a lot - like 50%, and Xanax helps probably another 30% but makes me a little drowsy, so still exploring options. Thinking about trying Lyrica, but gabapentin didn't do anything (and I tried up to 3000mg which is a lot!).

  • This is going to b a long post. I'm going through this right now. I haven't worked.since surgery done on Jan 12, 2016. I've gone through many docs, thenk god i took out long term disability and I belong.to a union. So 4 days after surgery I feel like I have a golf ball up my ass, I call my gastro and he told me to take a linzess, that.got rid of the golf ball feeling immediately. B careful bcuz some.of these docs will try and talk u into a sigmoidoscopy or colonoscopy. I'm not saying u don't need it but this pain needs to go.away right?  So after the golf ball feeling goes away then I get this dropping, burning in my rectum,  like stool.is dropping out of me and intense burning. I live with this horrible suicidal pain for 3 weeks.b4 I get in to c a colorectal Dr. I beg her to examine me and she tells me I have levator ani. She gives me soma.which is a muscle.relaxer, she knows I'm chronically constipated as I tell her I'm seeing a physiotherapist. She said after 4 treatments if I don't feel better I need to go back to her and have a defogram done. Sorry no way chick, this ass is too sore. She thinks I have some type of interception or something like that..it doesn't matter.I'm having no more.surgery. The soma she gave me made me shake like shit, it was aweful. I went to the compound pharmacist.and asked him what do Drs.prescribe for this? Je said valium with baclofen as a suppository. I ran to my gyno, not the one who did my surgery and begged him to gI've me a.script for the suppositories.  He did but didn't put the baclofen in it just the valium, he saI'd to apply it vaginally, fuck that, I put that suppoistory right up my ass. Works more.effectively.As.u know tjis spasm doesn't let u.sleep. it wakes u up, I'm not sure what phase your in. I'm at the point where if there is any stool in my bowels it sets this off. I have to have a bowel movement everyday or I'm.miserable. I also have I.C. and endo. I feel like the constipation is my main prob, I also have hypertonic pelvic floor.dysfunction. initially I needed a physio therapist but once I cld tell the twitching was gone and it was more.soreness I didnt want to keep giving.her all my $.I cannot stress.to you enough not to strain when I have a bowel movement. I'm having to use aloe.pills I get from a naturopathic docm and also magnesiim will.keep your bowels soft. Mag citrate or chloride are.both good.  Unfortunately I can't take the citrate bcuz of my I.C. I do the chloride but I can't.take a lot of it or it will bother me too. I was.told.by several docs to take miralax.u can take.it every day they say or alternate it with yoir magnesium. Also, I was told to use the valium twice a day but only use it at night. I also.got lidocaone.which is just a numbing.agent from a gastro..You can use that 4x a day it will take some of the pain.away.  i use it. My final.doc.was.a.colorectal.doc who wrote a handout on levator ani. He said i shld b 50 percent better by the end of May, that's not good enough. Guess it will take longer..I'm a.cocktail server, I can't work all.day lifting heavy trays and putting all that pressire on my pelvic floor. I also bought the therawand on amazon and stretch the vagina for 10 min. Its suppose to help with the rectum. I also bought a book healing pelviic pain witj some great.stretches.for.pelvic floor. YOU NEED TO do.these twice.a day and hold.that stretch for at least.30.sec..The author is Amy.  Now about the latest. Colorectal.doc i.found.he did an anoscopy and a.proctoscopy right in his office..he told me.I didnt have a rectocele and everything looked.good. These scopes.don't go as high as a.sigmoidoscopy.or.colomoscopy. om worried I have that divedticulitis which I wld need a colonoscopy to find..I want.to get rid of this first and I will def.let this Asian guy do it,  he was just.so kind, unlike.most of these assholes.I've been too.My pain.seems.to b staying.the same.right now.but I'm giving u my email and i.will.send u the handout he gave me..tweiss93@gmail.com

  • Seraphina, have you had botox injections in your levator ani? Or lidocaine injections? I would love to get this done but I've had a difficult time finding a doctor who does this.

  • No, I have never had them offeredbut wld probably. Decline, they seem like short term quick fixes and I ddon't feel like running to anymore.docs.. my problem is I need to relax.

  • Oh no that sounds terrible. But I want you to call me I might be able to help you. Please shoot me an email at levatorpain@gmail.com and we can get on the phone too.

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