Levator ani destroying my life

New to this group but have been reading posts and I feel a sense of hope. Have had this for two years! I also have ibs. Have tried acupuncture, hypnotherapy, pelvic floor therapy, therapy, physical therapy, have seen four gi doctors, colorectal doctor and trying all kinds of meds. Tried flexuril which constipated me. Also I have been on norco for seven years after three neck surgeries which has caused the constipation. Have been on Valium and chlorzoxozone but now have to get on baclofen as the fda stated u can't be on Valium and norco. Also have tried Valium with baclofen suppositories. Have seen a dietician and nutritionist. The ibs and levator have debilitated me. Luckily I've been on permanent disability since 2012. There is no way I can work. Seeing an ob-gyn in September to ask about the Botox for the injections. I cannot live like this for the rest of my life. People say they understand but I don't think so. Any thoughts on the Botox and if it will help? R u put out? How fast did it work?

13 Replies

  • Karen,

    I may have a similiar problem.

    But I think mine is not true Levator.

    I have sitting pain, as though there is a foreign object there. The pain is there every time I sit. Began as a progression not over night.

    Pain on waking low down spinal (10 years+) L5/S1 area,. Last 5 years began mildly now not mildly pushing into my anal canal.

    So my early waking pain feels as though it is spinal driven.

    (back surgeons x 2 could see no relationship between my spine and bowels)

    All this has led to moderate haemorrhoids, some faecal urgency, incomplete evacuation, tiredness from little sleep and makes one feel rather anti-social. It is difficult to put on the smiley face and get on with life.

    I appear to have prolapse issues too but difficult to tell what is from what. Gyni and rectal surgery mentioned as a way forward but they both work in a different way. The surgery may or may not help me no guarantees.

    I am considering coccyx scanning to rule out any pathology there. Most back surgeons do not scan the coccyx!!! I have 2 scans which do not go into that area.

    I also have some severe cervical narrowing which may be causing some issues!!

    Let me add the coccyx scanning is purely my idea, as I have some pelvic pathology which may me attributing to all of this. However tumours have shown stability for over 10 years!! I am beginning wonder if the MRI scanning is not totally reliable.

    It may be worth seeing a uro-neurologist gyni related person.

    I know of a uro-neuro gynaecologist who is London based if you are interested PM me.

    I think she may use Botox.


  • Hi Sandra!!! Thanks so much for replying. It's nice to know I am not alone but I'm sorry u r having problems. I too have narrowing of the spine and nerves as I have degenerative disk disease throughout my entire spine. Have had three neck surgeries. Do not worry about having a scan for the coccyx. I found out I don't have one and have been told it doesn't make a difference. I see a pelvic floor specialist and when she did an internal exam, both vaginal and rectal she couldn't feel the coccyx. I remember my doctor saying I don't have one. U might want to see colorectal as they can do testing that shows Levator and/or other problems. The pain of a foreign object feeling I understand. It sucks. My favorite place to sit is the toilet. Lol. There is no pressure there at all. Sometimes I feel like a baseball is sitting there. Like u read I have tried everything!!!! Am going to Stanford next month for the ibs as I cannot leave my house in the morning until at least 11!! Sometimes never. It is awful as u know!!!! I am seeing a uro-gyne next month and hope she will do the Botox. I'm at my wits end!!! I have the same symptoms u do. The incomplete evacuation just sucks. Why can't we just go and be done with it?!!!!! I was told take miralax or milk of magnesia. That Just makes it worse!!! I wish there was something I could say or do to help u. I understand completely. It's so nice to have someone I can talk to as I feel people don't understand. There's a book called headache in the butt which talks about this. My pelvic floor specialist gave me exercises to do which help alleviate some pain but not totally. I take pain pills got my neck and back but have had to increase because of the butt pain. I was doing so well!!! I know my pain meds cause my ibs along with stress but it's a vicious cycle. Levator does feel like u r sitting on something so I hope u see a colorectal doctor. It might help. Sounds like nothing else has. I wish u nothing but happiness and hope u find what u need. I really hope I hear from u again as it really helps me too!!!! Best wishes Sandra.

  • Hi,

    Just to say your not alone .

    ISabdra .

  • Thanks Sandra!!!! So good to know. My therapist wanted me to find a support group but there aren't any here in Sacramento. It's nice to know u r there. I hope u keep in touch!!!!!

  • Oh my god... So sad to hear this. Karen you should please call me so we can talk. I am a 27 year old male and Levator Ani Syndrome nearly destroyed my life and handicapped me. I have been going to The Cleveland Clinic in Weston, Florida for treatment. I have one of the worst cases of Levator Ani Syndrome that the doctors have ever seen. I went to ten different doctors including five very smart GI's until one was able to properly diagnose me.

    I gave up on my ability to walk. I really thought my life was done. I tried physical therapy, muscle relaxers, biofeedback, and it all made me worse. I was taking Vicodin (same as Percocet & Hydrocodone) for years thankfully I never got addicted because I am deathly afraid of narcotic pain killers because they are so good it is scary.

    I live in Georgia and fly down to Weston Florida (Near Ft.Laud & Miami) every three months for the treatment. It has changed my life. The pain was unbearable... And the worst part is nobody will believe you. Doctors who don't know about it say to relax, do yoga & take warm baths. None of that will treat it. The truth is this problem is a muscle spasm (although it only feels like pain you don't feel the spasm) and it must be treated by a Neurologist who knows how to treat it. The doctor's name is Dr. Kahn she is an amazing Neurologist at the Cleveland Clinic. She saved my life... When I see her I can't help but cry because she has helped me so much. Gave me my life back.

    But you can't just see her directly. At this hospital you MUST be referred to the Neurology department by the GI department. They are very familiar with the problem and can give you the injections. The hospital is amazing, the staff cares about it's patients.

    If you have tried physical therapy and biofeedback, other things and still have the pain, you need the botox. The doctor said after three treatments it can be fixed permanently. Whatever it is you need to get the treatment and get off the pain killers it is very very bad to be on those for a long period of time.

    Please message me for more information.

  • Hi!!!! Oh my god!!! Thank u so much for your insight. I live in California and can't afford to fly to Florida but I would love to talk to u!!! God can I identify with u. I've seen four gi docs but actually saw a colorectal doctor who diagnosed the Levator. I did a lot of research and basically knew what I had. As I mentioned I've seen four gi doctors, colorectal, dietician, nutritionist, hypnotherapy, therapy, pelvic floor therapist , acupuncturist. So tired of all these appointments with no results. Between the ibs which I've had severely for four years and the Levator I'm ready to pull my hair out!!!! It is so debilitating!!!!!!!! As u know. My mornings r hell with the ibs and I'm not able to leave until like 11-12. Am going to Stanford gi next month. My last hope. Also seeing Uro-gyne for the Botox hopefully. Is that what u did? Did it work? I can't imagine being young like u with this shit!!!! I'm 61 and still hate it!!!! There is a Levator clinic here in Santa Rosa but it costs $5,000 out of pocket. I can't do that and my colorectal doctor said don't do it. My one gi doctor said I have chronic anxiety disorder. Yeah sitting in a bath or doing yoga doesn't work!!! They r crazy to say that!!! This isn't a walk in the park!!! They think we just can't or shouldn't think about it. How can u not when u r in pain!!! Idiots!!!! I'm tired of taking hydrocodone which I take for disk disease but now with the Levator I take more and hate it. It's a vicious cycle cuz pain meds bother the ibs. I just go round and round!!!! How did yours start? What had u tried? I've done everything as I mentioned. I have faith in God but I don't think he's listening. I know other people have worse things but this is unbearable!!!!! U can't go and do what u want. I have grandkids I can't enjoy!!! I have a 90 year old mom who I take places and help her out but that's hard too!!! It just destroys your life!!!! I'd love to talk to u!!! This is crazy!!! My morning today hasn't been good either. Ibs is killing me. Hopefully it passes soon. Do take care of yourself and I hope to talk to u soon.

  • Hi Karen again. I don't see how u can travel with this. I can't at all!! Can barely leave my house some days!!!! Some days my ibs acts up where I'm impacted and the only thing is to pull it out. Sorry to be so graphic but it's true. Enemas make the Levator act up but so does the manual evacuation as I'm stretching the rectal muscle but the stool just doesn't come out!!! So damn frustrating!!!! That's what happened today!!! I was taking 8 stool softeners but found that to be too much!!! Started supplements from my nutritionist after having a neuro-adrenal test and stool test done ($500 out of pocket) and those destroyed my stomach!!!!! Had diarrhea for five hours and was sick for days!!! Combined with the Levator which when u have diarrhea makes the Levator spasm more it was awful!!!!! Now trying to cut down on all meds and no supplements. Take a boat load of meds. Like maybe 10-12 with vitamins. Maybe more. Or less. Lol. Something has to give. I hope I can find someone for injections if that's what u had. Am willing to try anything at this point!!!! Anyway I hope to talk to u soon. Thank u for your support. It's nice to have believe me!!!!

  • I have heard of levator ani but my doc says that is not what I'm suffering from. I have pudendal neuralgia that presents mostly in the rectum and anal canal. The pain can get excruciating - so intense sometimes I can't do anything, just lie on a heating pad and cry. I usually have flare ups in the summer and it gets somewhat better I think when the weather is cooler but I can have terrible pain at any time and strong urge to have a bm but there is dysfunction there and I have to really concentrate to relax and use glycerin suppositories to help relieve myself. I am wondering about the levator problem because of the feeling I have of extreme tightness and pain. I also have that feeling of an object in my a** - usually feels like a hot coal! I would appreciate your thoughts if what I am experiencing is similar or related? I have had this many years and have had physical therapy and nerve block I would absolutely go crazy without the hydrocodone - I only take it when I am in pain and would like to be able to walk (the pain spreads down both legs) exercise helps slightly thank you and I'm sorry for your suffering as wall

  • Hi carolee!!! Levator ani is a muscle across the pelvic floor which when I'm stressed or have a lot of diarrhea or large stools spasms. It hurts so very bad!!!! I'm sure it's like what u r experiencing. It's like a migraine in the butt!!! I sit on a heating pad a lot and take hydrocodone too but that's suppose to be for my neck and back but the butt pain is so bad I need it for that!!! Did the nerve block help u? Have thought about that but my pain management doc said it probably wouldn't help. I have tried everything for both the ibs and Levator. There is a clinic near here but it costs $5,000 out of pocket and I've heard it doesn't always work. My colorectal doctor said don't do it. I too experience tightness and pain in the anal and rectal canals. I do exercises for that but it's still there. It's very discouraging to not be able to go and do like a normal person. I'm suppose to go to Stanford next month for a gi consult but they changed the time to 9:00 in the morning. Mornings r my absolute worst with the ibs. I can't leave or do anything until 11 or 12 as I need to be near a toilet. It's insane!!!! I don't know if u have seen a colorectal doctor but it sounds so similar to my story. U might want to check it out. I was taking chlorzoxozone for the spasm which I still take along with Valium but the Dea has now said anyone on an opiate cannot be on any type of benzo med. stupid!!! I don't abuse my drugs but I know some people do so the rest of us have to pay!!! I did my own research and found baclofen for the muscle relaxor instead of Valium. Hope it works!!! Please keep in touch as I am so happy there is support out there. It's a lonely disease that people don't understand. They don't understand how we feel and how bad it hurts!!!! It's destroying me!! I pray everyday that something will change for both of us!!! Talk to u soon I hope!!!!!

  • Really pleased you posted Karen, and good to listen to responses.

    Good to know we are not alone and not just mad.

    I am not sure if my pain is pudendal/Levator influenced?

    Here in UK like the States difficult to get an analysis. Pain management also expensive and expertise limited with these conditions. Colorectal specialists also only a few clued up.

    I have had many colorectal opinions and gynaecological.

    I'm awaiting a coccyx MRI because I think there may be pathology there. I realise it would be rare and a long shot.

    I began 2004 with low back pain on waking out of the blue. Chronic debilitating pain.

    Had Spinal MRI showed some disc hernia tion here and there and prob normal degeneration.

    Then had MRI pelvis that showed some tumours adjacent to sciatic nerve. Not common. No biopsy possible and have lived with these lumps with uncertainty. However luckily no sciatic nerve pain down the leg. The lumps monitored every 3 years look stable but do have sacral involvement S1-S3 (this shows up with MRI neurography)

    Neurologist been looking after sciatic nerve and specifically expresses that she is only looking after the nerve.

    Began 5 years ago.to have a strange feeling night time with a pushing sensation in bowel/anal canal. Then change of bowel habits to urgency.

    This was mild in the beginning.

    Had some haemorrhoids moderate, without bleeding or itching. (One bout of bleeding) led to normal colonoscopy to rule out bowel cancer.

    I was sure I had a spreading of a cancer from my tumours!!! The anal obstruction type pain worsened!!

    But stability had shown with repeated pelvic imaging.

    I ended up from gastroenterologist to colorectal to gynaecologist.

    I had MRI proctogram showing prolapse in all 3 departments. However was told within limits.

    To be graphic:

    Womb at entrance of, moderate bladder down (no proper leakage) and some moderate internal rectal prolapse. (Intussusception) No trapping and distal intussusception.

    I was sent for bio feed but I find pelvic floor and anal squeezes impossible to do due to the anal discomfort (worse on waking in the morning, which diid not sound like prolapse. And chronic discomfort when sitting. This feeling like a continual obstruction in my anal canal. This has all led to incomplete evacuation and wiping several times and morning bidet use. I do not suffer with constipation or pain with a bowel motion or sickness.

    Have tried mini irrigation Quifora UK. It is a small pump you fill with water to expel faeces. It helped me empty more but I am still left with the anal discomfort after emptying!

    I prob do have s mixture of Levator/pudendal pain.

    Due to my prolapse which had been more than subjective with different opinions it is a minefield out there.

    The uro-gynaecologist mentioned hysterectomy and anterior repair however when the womb goes you have less support with the other organs. Having this procedure will probably hasten my internal recital prolapse!!

    And could lead to full blown recital prolapse.

    The suspension surgeries uterine or rectal have spinal fixings and I realise now with long term back pain early morning this would not be advisable in my case. I shan't go into the dilemma of possible mesh erosion too.

    I tried a ring pessary which made no difference as my prolapse is more rectal related than uterine.

    Here in UK very few hospitals have actual pessary clinics. I have not tried any other types of pessary as it appears to be only the ring which is used here!!

    This is an avenue that still needs to be explored.

    The only procedure I tried is one session of banding of haemorrhoids which has not helped continence. But was thought to be a possible help with discomfort. I thought it may help to enable me to retrieve my falling pelvic floor. Alas the exercises cause friction and more discomfort!

    Due to inability to squeeze my anal canal without loads of discomfort my anal sphincter musckes are weakening more. And now I get the occasional faecal accidents.

    One gynaecologist was not convinced that uterine surgery would help me although said he could be wrong. He was not convinced that my PAIN symptoms added up. (Low back pain on waking leading to anal canal discomfort) True prolapse I believe is worse at end of day not first thing in the morning. My anal canal pain feels as though it is spinal driven.

    Other gynaecologists were kean to operate but did day I may need a subsequent recital surgery.

    Ventral rectopexy was mentioned as a way forward to include a possible lifting up of the neck of the womb too. After much thought and realisation that this surgery has back bolt fixings into the spinal promontory at the sacral level I have decided against this surgery which may of indeed helped me. The surgeon dismissed my tumours and was not keen on further imaging.

    I am still under investigation and await this lumbar sacral/coccyx examination to rule out anything untoward.

    I truly fear a problem there.

    Past lumbo sacral imaging did not go a far as the coccyx area.

    For those of you reading this post.

    My history is complicated but if I have a coccyx pathology it needs to be accessed.

    It is purely the doctor in me that has asked for this examination.



  • I too have done pretty much all of that. I've had the Botetourt. Done twice. 250 cc each time. It did nothing for me. Very disappointed. At a dead end now as what to do next. None of my doctors know what to do now.

    Good luck with the botex.

  • Thanks for replying!!! It sucks we r in this boat! I saw my pelvic floor specialist today and we r going to try the therawand. I found out she does do internal tx which I hope helps. Found another therapist who does a lot of different treatments so not sure whether to stay with my therapist now as I've been with her seven months or try the new. I have two months to think about it and see what happens. My therapist now actually worked for the new one. Lol. Just tired of this and my ibs. Have had three hours of diarrhea everyday for over a week. Every morning after I get up!!!!! It's a nightmare!!! So between the ibs and butt pain it sucks. I'm sorry the injections didn't work for u!!! That doesn't make me happy to hear!!!! There has to be something we can do but I don't know what!!!! If u find anything please let me know. Please keep in touch!!!! I'm thinking about u!!!

  • I will let you know. The same for you. As I said before I'm at a dead end as what to do or try next.

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