hi i am a 55 year old female that has levitor ani syndrome. i am in extreme pain all of the time. i know all of the regular treatments as i have had this condition for over 3 years chronically , 30 years on and off. i see a specialist pt for pelvic floor dysfunction, i stretch, i use a tennis ball to relieve external trigger points, i have been seeing an accumpuncturist i attented a 2 week session at a holistic clinic where i learned relaxations techniques, they help some, but not much. i have seen several posts where people talk about trigger point injections, what are they injecting ? botox? how long does it last,? does it helP.? does it cause incontinence?
does anyone have any other treatments that are not the norm? sitz bath, blah blah, i know and have done all of them..
any advice, input is most appreciated .
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pieper
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I've had vaginal trigger point injections and they have helped; they were made up of marcaine, lidocaine and steroid. Are the trigger points in the rectum? I know a physical therapist in Tampa, FL that had a patient with severe pain upon defecation; she was helped by using a trigger point wand to treat the internal rectal trigger points. You may want to ask your PT if that is an option for you.
i have a trigger point wand and use it allot! thanks though. i wander if the injections that you received in the vagina would help with the rectum , what would the side affects be, hmmmmmmmm.. have to talk to my pain doctor. thanks
You need Botox injections. I am a 27 year old male and I had chronic Levator pain for five years until I was properly diagnosed.
You need to go to the Cleveland clinic in Weston Florida. Go to the GI department, then they will give you a referral to Neurology for the treatment. It will take two appointments before you can be scheduled for the treatment.
I am on my 4th treatment and my levator pain is down 50-60%. For the first time in 5 years I'm not taking any pain killers (Vicodin/Percocet)
Keep in mind my case is the worst the doctors have seen. Most people get 100% relief after the 2nd or 3rd treatment.
Please send me a message if you'd like to talk on the phone and I'll share my phone number we need to get you some help!!
The Botox injections saved my life I thought I was handicap for the rest of my life. Finally I can say in confidence that I'll begin to exercise in January boy was it a hard and emotional five years to be misdiagnosed thankfully I have a great family my mom dad and brothers supported me the whole time and treated me so well if I didn't have them I would have lost my job house and car the problem was so bad. Sad thing is when you tell people about how bad the pain is they think it's just a small pain I can't get across to people how bad levator and syndrome is.
I live in boy ton beach fl close to Cleveland clinic ha pudendal neoropathy pain in rectum for 3years I had Botox injection did not work have had many injections none worked was schudeled for ganglion impar last week I cancelled it all been done by pain mgmt never been to neorolijist I live on oxicodone I wonder if dr khan would help me I am desperate also have you heard of mrn exray. Or the spinal chord stimulation these have been offered to me I thank you for information
Just saw your post and wondering how you are doing these days I find the cyclobenzaprine muscle relaxer the most help is it calms everything down but I will be trying the gabapentin soon just to see if that helps also a lot of people are using cymbalta it's a very confusing condition and it's just all trial and error it seems
My pain began in April 2015, and I sure know how bad legator syndrome is!! It began when I started bike riding, and after a couple weeks I felt like I had a golf ball in my rectum! I guessed that it might be an internal hemorrhoid?? I was scheduled for a routine colonoscopy, and that was not the case. Because of the cancer history in my family, my internist ordered several tests over the next few months: CT abdomen and pelvis with contrast, Renal bladder ultrasound, Pelvic Ultrasound, Diagnostic Anoscopy (Colorectal Dr.). The Colorectal Doctor diagnosed it and wrote a script for 2MG Diazepam at bedtime and told me to take sits baths. This did not solve the problem at all. The pain is so severe in the rectum at times (as well as sometimes in my lower abdomen) that it takes my breath away! I have done research on-line and found a website (listen to your gut) and I downloaded JINI's Rectal Spasm and Levator Ani Syndrome Summary. Since my spasms seem to be exacerbated by BM's or lack of them, it really helped me recognize that there might be a correlation.I also ordered the squatty potty and cushions to make sitting more tolerable. I then saw a good GI and he ordered a MRI Defecography and it was determined that I have a moderate prolapsed rectocele. I have now seen 3 Urogynecologists, and after biofeedback, internal stim, internal massage etc., prescriptions for various compounded rectal suppositories etc., I am STILL in chronic pain! My only saving grace is when I go to bed (laying horizontally), I am not in pain. My PT (who is wonderful) wold me that trigger point injections MIGHT work, and she has identified the exact muscles which are in spasm: The Superficial Transverse Perineal Muscle and the Puborectalis. I am familiar with Dr. David Wise and Dr. Rodney Anderson and have a copy of their book "A Headache in the Pelvis". I considered going to one of their workshops in CA, but it is very expensive and most of the program would be redundant for me at this point. This is such a debilitating condition and I just want to feel normal again! Some days all I can do is lay down or sit on a heating pad! If this new prescription (Gabapentin, Amitriptyline, Benzocaine, and Diazepam) in combination with the physical therapy does not help me, I need to look into seeing Dr. Kahn @ the Cleveland Clinic in FL. Your blog has given me hope!! Thank you so much for posting
Three years for me after exercising in the pool. I too have seen many doctors, including Dr. Wise. It's a very good program ,but didn't help. I too have stage 2 rectocele. I take 1200 mg of neurontin every 4 hrs, with elavil. I too get relief by lying down, which I am told is levator nerve problem. After much research I found a dr. In Dallas who diagnosed. Next Monday I will have an mrn and a pudendal nerve injection couple of days later. I wear a tens unit every evening which gets me to bed time. I have quite severe pain. There is still so little known about the pelvic floor. I hope that you find some relief. I hope that I do also.
Thank u for your wonderful response and I am about to try put the end of the month if no results I too will make appt with dr Kahn right now I depend on oxicodone every 4hours which I dislike but that is only thing that gives me some relief.. please keep me posted
Hi Anne... I have the same thing as you and I was just wondering how you are doing and what has worked and what hasn't worked for you I've had it about 14 months definitely somewhat improved with PT and meds but I feel like it might just be ongoing and with flareups
Yes I would like to talk to u I am about to undergo p t at the end of the month I don't have to much hope I will go to Cleveland clinic next thank u so much for information. I live with ice packs . No one understands what I am going thru missed 2weddings for grandchildren
Hello are you still on the forum? I'd like to speak to you if possible you can email me your phone # to oldglorypowderco at gmail dot com. my husband is suffering with levantor ani syndrome symptoms and he has also developed a fissure. Thank you. Sara
Accupuncture will not work... sitz baths will not work. Good that you tried it though to rule it out. Now it's time for the real treatment. Are you taking any pain meds?
Also to answer your question I don't have any incontinence maybe I lost 10% of my control of gas but that's nothing... it doesn't affect your bowels or control of bowels. The doctor knows where to object it she has equipment that tells her which parts of the muscle are having the spasm and she only treats that part.
how much time between shots? i live in iowa. how long did she say that they will last? will you have to go back to get more?
there is a pain doctor here that ii have gone to that has done the ganglion impar (spelling, sorry) which did nothing. but i wander if he talked to her and got the right instruction, he could do it . he told me NOT to do those shots, that they would cause incontinence... i know he's not God , just saying....i will do some research into this doctor and her success with these shots. thank you so much for your help. i will be in touch!!!!!
Sorry I took so long to reply... You can contact me directly at levatorpain at gmail and we can also get on the phone.
The doctor you're dealing with does not know enough about the injections to say that it will cause incontinence. Multiple GI's told me that I had the worst Levator Spasms of any patient they've ever seen. I was handicapped for years. I have had five treatments (Botox Injections at the Cleveland Clinic) and I am now 95-100% pain free. I am living a normal life and can work perfectly find and do whatever I want. The doctor uses some device to see where the levator spasms are happening, and it rings in her ear (she wears a headphone in one ear) and gets only the part that is causing the pain. She makes it a priority to not cause incontinence and is very experienced with this.
I too was very skeptical because I have to fly in from Atlanta with my mom each time for the treatment. The first treatment took two weeks to kick in, second treatment took a week to kick in. Third treatment took three weeks to kick in. Because it can take a different amount of time to kick in each time, it becomes a very emotional treatment because you feel that it is not going to kick in, but then it kicks in.
The plan with this treatment is that after 2-3 treatments, the problem goes away forever. My case took more treatments but I think the problem is gone. But I am going to one more treatment for sure to be safe.
I know you live in Iowa and the flight is far and the cost will add up. But please do it for yourself. I am 27 years old and the past 5 years of my life got worse and worse I was in so much pain and PT didn't work. Of course PT is the first thing you should try but if that doesn't work and you are in chronic pain you need to get the injections.
Lots of people will get hooked on pain meds because this problem is so bad and can last so long. One guy on this forum recently killed himself because his levator pain was so bad and he couldn't find the right treatment. My heart goes out to his family I had to cry when I read that post. I was misdiagnosed for years and I found the proper treatment from a post like this online.
If you are seeking this treatment please email me and I will send you an explanation on how to get the appointment. The doctors are very busy and they have a process that requires you to get an appointment with their GI first and get a referral to the Neurology department. You cannot get your own GI to refer you, it must be a referral from within the same hospital (The Cleveland Clinic)
Please send me an email when you get a moment and sorry I took so long to reply I have a very busy job I am working in the family business and I work a lot!! But I will always make time to get back to you guys.
Thankyou for your post..it's really helpful.my pt said it's essential to get some one who knows what they're doing with the Botox or it can get worse,so I was wondering now a few years on how you are doing and would you do the botox again?
also, are your symptoms caused by your nerves? i have been told that mine are because of my sympathetic nervous system being out of wack. hense when i take at least 15mg of valium it settles down my nerves and pelvis. that is the only thing that i take.
Hi pieper!!! Boy can I relate to u!!! I have had Levator ani for two years and it's hell!!! I also have ibs which contributes to that. I too have tried everything. Pelvic floor therapy, regular pt, acupuncture and hypnotherapy. See gi and colorectal. Had a defacography which showed normal. I don't see how as my stool gets stuck and won't come out. I've used soooo many meds!!!!! I bought a therawand and use it and it seems to help. My Levator ani seems to have gotten a little better but my rectum hurts all the time!!!!! It is so painful!!! Had an appt with a urologist to talk about Botox but at the time was feeling better so I canceled. Maybe I shouldn't have. I don't know what to do. I have to manually evacuate sometimes which isn't good but I can't push the stool I feel out and it hurts inside!!!! I see my colorectal doctor on Tuesday so will see what he says. Please let me know how u r doing!!! I do know the pain believe me!!!!!!! Try and have a good day!!!!!
I had Pudendal Nerve Entrapment surgery yesterday. I will post in a week of my progress. So far no nerve pain. Anal Fistula surgery was the cause of pudendal nerve pain.
where are you getting your surgery? what is it ? i am going to baltimore to see dr. A Lee Dellon for surgery if trigger point injection gives me any relief.
i had surgery last year with Dr. Dellon. I no longer have the same symptoms. Every day is different, overall i am allot better, I do have inflammation in the right labia now which causes pain, but compared to how i was i'll take this any day.
Pieper, I have that same labia pain. It feels like insulation rubbing against my labia. It’s happens when I over stretch. I only have it on my left side. I had both sides done.
I'm so sorry to hear about your pain. Hope your apt shows some promise. I started seeing a psychologist he is going to try something called emt. Also have an appt wroth psychiatrist layer in the month. Good luck to you! I'll keep you posted
I didn't know if you were still in the form but I just saw your post I was wondering if the psychologist did the EMT treatment and how it worked and how everything else work for you
i have been seeing a chiropractor specializing in art (active release therapy) which basically means he works on muscle and nerve. he has been using different manipulations as well as k=laser to repair the damaged nerve. i have pne pudenal nerve entrapment. he has been able to reduce my pain by 60-70%, i no longer have the tightness in the rectum, feel the golf ball or have the spasms. my biggest problem now is just sitting, but that is not as bad as before either. i can be on my feet all morning and don't need to rest until around 2 or 3, then apply ice and am good again for a while, then another break. i do take it easy in the evenings, just lying on the sofa off my feet with ice on and off. but overall am doing allot better. i am going to Baltimore on tuesday to see dr. a lee dellon a neurosurgeon for a trigger point injection to see if it relieves the pain temporarily, if so he is going to do surgery, he said "
so you most likely have injury to the perineal branches of the pudendal nerve and these can be removed at surgery wth the muscle implanted into the obturator internus muscle.
so if the injection gives me some relief i am going forward with the surgery. not sure when, it is pricey and he doesn't take insurance so i will have to make arrangements for payment and my insurance with pay 50% after deductible is met which is $7500.00 so basically my insurance wil be $5000. out of $17500.00. but it will be worth it if i am fixed.
so wish me luck guys, and look into chiropractor in your area that specializes in ART!!!
Pieper please DO NOT get surgery for this problem without seeing Dr. Kahn. Surgery for this type of problem is not recommended and can lead to more pain. You must try to see Dr. Kahn in the Cleveland clinic before you get surgery.
Hi all, I get terrible rectal spasms, that morphine doesn't even cut out pain. The pain spreads to my lower tummy left side and central bladder. Also I get pain down the backs of my legs. I just sit in got hot baths and use hot water bottles all the time. The spasm pain is horrible. Do u think it could be the same or part of it? I had a STARR rectal operation so they think nerve damage. But it feels like bad spasm pain as well? Thoughts please
I have had seven years of terrible daily rectal spasms, pelvic and now leg discomfort and weakness. I have tried dozens of drugs, nerve blocks and specialists . I think the only thing left that I know if is botox other than decompression surgery which I don't want.
Just hoping you had tried anything similar because your symptoms sound as lovely as mine!
Do you get pain relief from medications? Try biofeedback early morning with physiotherapist . Gabapentin, Cymbalta, and xanaflex are a good combination for pain relief and spasms. Gabapentin Relieves nerve pain. Cymbalta helps with nerve pain but also makes you feel calm. Xanaflex or baclofen helps with muscle spasms. Magnesium glycinate taken a couple times a day regulates bowels without loose stools.
If you think you have damage to sphincter mechanism ask for a transracial ultrasound.
I would like to tell you there is a product called coloplast. You can clean out your bowels daily so not to put pressure on the nerves. Then they may heal. You need a prescription for this.
i had surgery last year with Dr. Dellon. I no longer have the same symptoms. Every day is different, overall i am allot better, I do have inflammation in the right labia now which causes pain, but compared to how i was i'll take this any day.
What kind of surgery did u have ? Glad you have improved
Have any of you guys with rectal pain ever had your coccyx bone checked? Ends up I have been in horrible pain for almost one year! I use a. Tens unit for pain, and a tens rectal probe, along with the therawand. I see a pelvic floor therapist. No one, two colorectal surgeons, or the pelvic floor therapist discovered this. Since all the pain was coming from my puborectalis muscle which is connected to the external spinchter, I decided to check my spinchter...I felt this rubber band type thing in the canal below the spinchter...showed it to the therapist..it ends up being a ligament to the coccyx! She then stated..your coccyx is completely out of alignment! And proceeded to put it back in place,...it has stayed, as the next appointment she worked on it more. My pain is getting less and and less, I am now pooping with no pain, I am getting well! I now do not need Botox! This little tiny home is the beginning of all floor muscles, and I think it is very overlooked, and maybe a lot of people on here have this too. Get it checked, I am so glad I found that ligament. The color doc said I will continue to have pain until it is healed up. But I must say it is less and less. I am staying on the wand and probe, and my 2 caps of MagO7 everyday it is so much better! Get your coccyx bones checked, and I hope this helps some one...I could not see living in that horrible pain for the rest of my life...so glad it's cut in half, she put it in place about a week and half ago...it will just keep getting better!
Hi Olivedog! I have had terrible rectal pain for a year and a half. I am going to see a pelvic floor therapist tomorrow and ask her about this. I have been on countless medicines, had a small surgery for pelvic congestion syndrome, and am now debating on having botox injections or a nerve block. I am so depressed and cry pretty much every day. I hope and pray this coud be it! Thanks for sharing!
Hi I was just wondering if you know what started your condition because I have the same basically ... all rectal and if you ever did have the botox how it worked?
I never did the Botox because my insurance doesn’t cover it 😞. But I believe mine is all nerve related. Maybe due to a fall a few years back or maybe a Bartholyn cyst removal. I don’t know. I take tramadol for pain which helps. Do you think yours is more muscle or nerve? I’m going to see Dr. Charity Hill, a new pelvic pain doctor in Miami, on Tuesday to see if she has any advice. ❤️
I think mine is neuromuscular so both muscle and nerve...I can get it fairly calm down with cyclobenzaprine muscle relaxer and I am starting to try the gabapentin today and I also have alprazolam if I need to try it I'm just hesitant to try a lot of drugs but I'm thinking of going to a naturopathic pain doctor.... Also I don't want to do a colonoscopy yet even though my doctor wants to do it my gastro he said it shouldn't hurt too much but he doesn't know the pain that we go through I'm afraid that having all thos loose stools to empty the bowel will start the spasms off really bad and I'm also just good the scope going up there will bother me... I have had CT scan and an MRI and it shows nothing
My images show nothing as well. Good luck! I’ve done the nerve meds (gaba and Lyrica) and muscle relaxers (cyclobenzaprine) and nothing really helped. That’s why I just got off everything and just do 1 pain med (tramadol) until I can figure this out. It’s obviously something structural for me, I believe. If I don’t have a bm, I have no pain. Crazy 😞
I know me too!! I've had fantasies of just getting the colostomy so I don't have to go through it anymore but then it'll probably still be nerve pain down there who knows!Have you had a colonoscopy ?and I forget if you said you had a defography....can we stay in touch to support each other?I have a lot more to tell you about other things that may help...my email is ********
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coccyx and rectal pain and burning 
Rectal and leg burning nerve pain
