Levator ani destroying my life - Pelvic Pain Suppo...

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Levator ani destroying my life

Karen1954 profile image

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?

163 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.

Sandra

Karen1954 profile image
Karen1954 in reply to Sandra2468

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.

Sandra2468 profile image
Sandra2468 in reply to Karen1954

Hi,

Just to say your not alone .

ISabdra .

Karen1954 profile image
Karen1954 in reply to Sandra2468

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!!!!!

crazyat50 profile image
crazyat50 in reply to Karen1954

Same issues here. I work full time and most of the other time I am home trying to go to the restroom. I live on laxitives and amitiza. It just won't happen. I also have the same spine issues and been diagnosed with Levator ani syndrome. I have been trying to figure this out for about 8 years now. I just don't know what else I can try. I see I am not the only one suffering with this. I used to walk a lot because that is supposed to be good for your back, but now I have such pain in my feet I cannot do that any longer.

Karen1954 profile image
Karen1954 in reply to crazyat50

How in the hell do u work full time? I'd be bonkers!!!! With my ibs and levator there is no way to work!!!! I tried amitiza and that did nothing!!! I've seen seven gi doctors and nothing new. A couple of them said continue linzess which u might try and take miralax. Really that's it!!!! I've tried everything there is!!! Nothing left. Have u tried trigger point injections into the pelvic floor and puborectalis muscle? I've also done numerous injections into the back and sacral areas. Might have helped a little. My problem now is that my rectum feels raw once again. Had some diarrhea on Saturday and I still have soooo much burning!!!! I can't take it!!!!!! I can't get up and just go like to work or even something fun. I feel like I have to have a bowel movement like all the time!!!! The pressure is so damn intense I could rip my hair out!!!!!! If u can think of anything else please let me know!!! If u ever need to talk just send me a post!!! I'm here for u in whatever way u need!!! We all need to stick together!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

I too have pelvic floor issues... described as levator ani. A burning, stabbing pain right on the anus. It is horrible, and was diagnosed, i think, 2015. I had laporoscopic surgury for endometriosis in 2009 and started having super mild, ignorable anal nerve pain but it only occurred during my period. I just found out a couple months ago that the endometrial tissue that was removed was located posterior to the uterus in the area i currently have my symptoms. My physical therapist told me that people with my condition have had surgical procedures or radiation therapy in that area (but not limited to these, of course).

I have been able to control the pain with two medications, elavil and birth control. Elavil takes like 6 weeks to fully kick in, though I had noticeable relief after a few days. I take 25mg at night and im a smallish person, 5’2" and 120lbs. I started birth control when i noticed that i would flare around my period. With these two meds, i have been able to be pain free. However, i still get flares but they are tolerable. I had a desk job for a year and was able to actually sit all day with little to no pain. I can even do light exercise but i listen to by body. When i flare, i go easier or take one day break (or several depending on the severity). Have you looked into the therawand? I am new to it but it truly helps. My physical therapist found my trigger points and i can now use the therawand to work those muscles on my own time.

I have noticed that certain food and vitamin pills seem to lessen the effects of the elavil and refrain from those.. one being raw almonds.

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!!! We r two peas in a pod!!! Does elavil really work for pain? I was on the butrans patch with nucynta which he prescribed in place of norco. It's ok. I'm so sick of rectal pain!!!! My also is aggravated by going poo. My butt then burns like crazy!!!! I try to go to the gym but can't always make it. My mornings r hell!!! I can't plan anything!! I have to wait until all the pain subsides to do anything!!!! I'd love to be able to just get up and go!!! I think mine started after I had a scope put in my butt!! I felt something "pop" and then it all started. I was on numerous pills to control my spasms which then caused more problems with my ibs. I can't work. I can't do much and I keep asking myself "is this the rest of my life?" I don't want this!!!! I pray and pray but nothing changes. I have used a therawand. It helps but not totally. What r we suppose to do? My ibs started after working at a stressful job and getting fired for no reason and I had been there ten years!!!! I hope things can get better for u!!! Please keep me posted on anything u try. We have to stick together and hopefully we can find an answer!!! Can't wait to hear from u!!! Do take care!!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

Yes the elavil works wonders! I do not have many side effects from it, but it does make you drowsy. I take it right before bed. It is a small green pill (easy to swallow, never crush it or chew it though) and costs next to nothing on my mediocre insurance coverage. It really was a life saver for me, and I hope it will be for you! I did read somewhere that elavil also helps with IBS..but dont quote me on that!

Elavil is also known as amyltryptaline.

Right now, since I am mostly pain free, I am working on weaning myself off of it. I saw a pt person in 2015 and she was able to wean me off it totally. The problem was that I had to basically live a sedentary lifestyle so as not to flare. So I went back on the meds. Currently I just finished up with a new pt person, and she was ok. She did introduce me to the therawand... but she got me on a stretching routine that I could actually do! Stretching my calves puts me into a flare, but I'm getting better.

The important thing about a pt visit is that they can tell you if your problem is musculature or not. Mine is, I have very tight pelvic floor around my bum. My nerve has been troublesome lately since I started a yoga routine. I am on my 6th day and the pain is steady..not getting worse, which is a plus. So I'm hoping the pain will eventually go away at this level of exercise so I can move forward.

A lil backstory, when this first happened to me, I was 3 months out of going on a Disney trip with my husband for 10 days. I was doing everything I could to get help because there was no way I could handle the rides or walking, or anything. I would have ruined it! With a few days before the trip, I scheduled an appointment with my obgyn. It was Friday and we were leaving on our trip Monday. The nurse came in to talk and I told her everything. She started describing my symptoms to me! She said her mom has the same thing and she could tell by the way I was sitting what was going on. She recommended elavil to me. I started it that day and by Monday I had enough relief to go 6am to 12am, walking and all the rides, in good enough comfort (I did bring a coccyx pillow on all the rides). It was a blast. It took 6 weeks for it to fully kick in.. but now I can sit without thinking of pain. I can ride all the rides without issue now. That nurse is my angel! I even do the 5k rundisney events! Albeit I jog at a pace just a tad faster than walking..but it is better than nothing!!

Keep me updated!

AlexA810 profile image
AlexA810 in reply to AlexA810

Oh, I meant to mention, I do not need the coccyx pillow anymore. I can sit flat on my bum. I only use it in my car bc my first pt told me that it's good just to have for posture. I can ride in a car without it... but I always keep it in my drivers seat.

I did not read all the comments, but where r u from? I was living in Michigan outside Detroit until 2018 when I moved to Florida with my husband. I know Orlando has one of the best pudendal nerve care centers in the country, I believe. At least one of the top researchers is there. Not just for pudendal neuralgia, but pelvic floor as well.

AlexA810 profile image
AlexA810 in reply to Karen1954

I responded to you twice!! The second time responding to myself, lol. Just so are aware of it.

I am responding too quickly! I keep leaving stuff out! But I wanted to mention that I can poo without pain as well. Sometimes it can be painful, but rarely, and without any burning pain after.

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!!! Great to hear from u!! I'm really surprised elavil worked as that is an antidepressant!!! I will run it by my pain doctor!! I take nortryptiline at night to help me sleep!!! It sounds like things r coming around for u!!! I wish I could work or volunteer but such is not the case. Yet!!! So did the elavil help with your pooing situation? I'm sooooooo tired of burning after I poo!!! I use to have to manually evacuate stool which might have hurt my tissues. I've been on gabapentin which didn't help!!! U can write to me as often as u like!!! Oh I live in California. I've heard the Cleveland clinic in Florida is great!!!! I have tried every doctor there is. I even went to Stanford to see if they could help!! We tried injections but did not work as the pain is lower in the rectum where it meets the anus as u know. The only injection that would work is an epidural like u get when having a baby but then u can't walk! My mornings r hell like I mentioned. As soon as I stand gravity goes straight to my butt!!! All my thoughts go crazy!!! It's when I miss my mother the most except for at night. Geez!! The pressure is intense!! I just want to go back to being normal!!! Is that even possible? U have given me some hope!!! I use to do stretching exercises but that never worked enough. Did balloon manometry for almost a year and a half but we realized we were at the end. It's like everytime I poo I still feel it inside!!! Like I said just want to get up and go and do!!!! Maybe someday!!! I'm glad u can poo without the burning!!! Hooray for u!! Keep me posted on everything!!! I do look forward to our next conversation!!! Thanks for being there!!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Same here! Def try the elavil... and get back to me how you feel. Just like with any medication, you can get break through pain. I would recommend when you go on elavil to just not do any exercises or physical lifting. Not be sedentary, just let your body relax and let the elavil build up in your system. Once it kicks in, you should be pain free for the most part.

I truly hope it works for you!

Elavil is an antidepressant but it is known for its pain relief due to nerve pain. My Michigan dr wasn't going to put me on lyrica bc of side effects. She mentioned trying gabapentin but I have success with elavil and I'm scared to try a new drug.

No I do not get burning with poo anymore.. on occasion I do if that nerve is flared (like it us now due to exercising). But when it does burn, it does not last for long (like less than an hour) and not as intense as it was when I was not on elavil.

Call your dr. The nurse should be able to write you a script and send it to ur pharmacy over the phone.

Btw I have heard of people who take both gabapentin and elavil. Hopefully the elavil will suffice.

Best!

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!!! Sorry it took me so long to get back to u. I'm going to ask my doc about the elavil. I read about it and it is suppose to help with nerve pain which I definitely have!!! He won't write a script until I see him which is next week!!! So u can be on gabapentin and elavil? I've noticed the gabaoid t working at all!! I don't want to try lyrica because of the side effects!!! I'm so effn sick of this shit!! Like I said mornings r hell. So today I'm just pooing little pieces causing my inside to feel every little thing!!! Then if I go too much it hurts then too!!! I can't seem to catch a break. I've had this problem four years!!! Ibs for 7! I hope the doctor will put me on the elavil. Otherwise might have to ask my primary. Your story sounds so similar that I can only hope it will work!!! If u have read my other posts I have tried everything!!!!!!! Might as well try the elavil if I can get it!!! I hope u r doing well!!!! Can't wait to hear from u!!!! Keep me posted on your well being!!! Hugs!!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

It is definitely smart on your doctors end to see you first before trying a new medication. I am no doctor, and i dont mean to come off as one... i only know what helps me and what drugs i can or cannot take. It is heartbreaking to hear of your struggles, and knowing what it is like, i would not wish it on anybody. I would do anything i could to help someone, even if it is just to recommend a medication i have experience with and has worked for me. I was rereading my posts and i felt like i came off as someone who is a good friend and knows your health history, which I don’t. It was simply me feeling so much compassion for someone, that i know is going thru hell and knows exactly what its like!! The last thing i want to do is lead you on about this drug that works for ME, and what it has done for me, and perhaps it will work for you too! And then maybe it wont... but you have tried so much already that i couldnt help myself but contact you, and be like “have you tried this! Works for me!”.. not thinking, but, what if it doesn’t:(. This is the first time ive ever contacted anyone about this condition, with the hope that we can help and support each other. It is not a condition spoken openly about and is isolating.

But if it is something you and your doctor decide is safe for you to try, i truly, with all my heart, hope it helps and doesn’t give you any issues.

Definitely learn about elavil and its side effects, and listen to your doctor. I have read of people who couldn’t stand to be on it (heart troubles, etc), and then ive read about people who have been on it for a decade or more with no serious issues.

In the meantime, i have tried a couple days ago a YouTube video of some exercises that will help relax the pelvic floor and it felt like it helped. Have you looked into these self help videos?

In case i didnt mention before, I have never been officially diagnosed as levator ani, just the all encompassing ‘pelvic floor’. But all my symptoms align with levator ani. My physical therapists have both said my pelvic muscles are too tight! I have had a colonoscopy and another test i cant recall, but they both were negative. I cried after waking up from my colonoscopy and being told nothing was found. But like you, my pain was better in the morning after a night of muscle relaxing sleep!

When you wake up in the morning, is that the best you feel? When i first had symptoms of this monster, the mornings were the best. I would lie in bed still as i could so as to extend this moment... but then my whole body eventually wakes up, and it was awful.

All my best!

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!! Always great to hear from u!!! It makes my day!!! Thank u for all of your support as I feel that u understand!!! U never came across as knowing it all. Lol. I know u r always trying to help and I appreciate that. I have been on nortryptiline to help me sleep and with depression but I think maybe the elavil might be different for the levator shit. My mornings r actually my worst times. The gravity hits my pelvic floor as soon as I stand up!! Then the ibs kicks in whether I have to go or not it feels like it!!! I get up at 7 in order to maybe go to the gym by 11!!!!!! Yep it takes that long to settle down!!!! I can't plan anything!! I never know how I'll feel. I've had to go to a couple of appts where I'm in severe pain. My stool seems to just burn my ass and that's insane. I just want to poo like a normal person and go about my business. I have tried all sorts of pelvic floor exercises that I learned from a pelvic therapist. They kinda helped!! My pain doc has tried everything to help me!!!!! Such a great guy!!! We'll see what he says on Thursday!!!! Yeah this topic is hard to deal with but so helpful when I meet people like u!!! Like I've said no one understands what we go through and how we feel!!! They have no clue!!!! I would love to go back to being the old Karen who could have fun and just be!!! I keep praying and hoping it will change!! Sometimes it can be too much as u well know!!! Today is going to be hard as a year ago today my mom passed away!!! Can't believe it's been a year since I lost my best friend!!! It still hurts just as much!!! I sincerely appreciate everything u day in trying to help me!!!! I hope I can switch to the elavil if he thinks that would help!!! Something has to!!! I love hearing from u so please keep in touch!!! Too bad we have to go through this shit!!! Life would be so much better if we were "normal". Take care my friend!!! Hugs to u!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

Did you visit your doctor this past week? Are you able to try elavil?

Thinking of you! Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex! I saw my pain doc for Botox for my migraines and did mention the elavil and he said yes it does help pain. It's like one of the earliest for pain. He said we would talk about it on my followup. Ugh!!! So I see my pcp on Monday so I'm going to talk to her!!!! These last two days have been pretty good but I woke up today with severe burning!!!! God it hurts!!!! It just needs to stop!!!! How r things with you? I was just thinking about u last night and wondering how u were and I woke up and there was your message. Great minds think alike. I hope all is well with u. I'm so glad the elavil worked for u and I hope someone will prescribe it so I can try it!!! Something has to work!!! I can't handle this the rest of my life!!!! It's depressing as u know. I only wish great things for u!!! Please keep in touch!!! I always look forward to your posts!!!! Hugs!!!!

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex!! I think I am in the same boat, too ☹️ But just not sure. Very depressing. Basically my rectal pain started 2 years ago. I have no idea what happened (maybe a hard stool, I fell on my tailbone 6 months before, stress). Idk? When this first happened I did try the amitryptiline but was so freaked out it was an antidepressant I stopped after 3 days. I felt like it made my stool very hard. I have been checked for everything. Thankfully they haven’t found much. But I have this awful rectal pain. I’ve been seeing a pelvic floor PT for about 3 months. I tried a pudendal nerve block. Nothing. Lyrica. Nothing. gabapentin. Nothing. Last summer out of desperation I agreed to a gonadal vein embolization surgery thinking it’s maybe vericose veins but it didn’t work. I was devastated. I’ve gotten very depressed the last few months because I feel this will never go away. Here’s my question: how do I know if it’s muscular pain or nerve pain? The only consistent thing I have found is the 2 or 3 days in the past 2 years I did not have a bm in the morning I had absolutely no pain. So something isn’t happening after my morning bm. I don’t know if the muscle is spasming or the nerve is not gliding correctly and causing nerve pain. Or both. After reading this I’m tempted to ask the dr to try the amitryptiline again but I do not want hard stools again. Do you have any advice? Thanks so much for your help! This has been devastating to my life. My 3 sons have seen me cry almost every day the past 2 years, my husband doesn’t know what to do with me, im a teacher so my students and coworkers wonder why I’ve dropped 20 lbs. Because I don’t want to go to the bathroom so I try not to eat a lot. Thanks for any help! 🙏

AlexA810 profile image
AlexA810 in reply to VeroMom

I'm so sorry you havent found relief yet :( I have seen two physical therapy specialists who confirmed that those muscles are tight. When those pelvic floor muscles are too tight, the nerve reacts to it in pain. My first physical therapist was so good but the second was just ok. If you are not having success with the therapist you are with, maybe try another? I wish I could go back to my first PT but she is in another state.

Yes, amyltryptaline is an antidepressant but *I think* it is given in larger dosages to people suffering from depression. I was scared to try it at first too, for your same reasons, but it was the only thing I had to go with at the time. I felt some relief after a few days, then after almost 6 weeks felt much better. I do have to make adjustments, like I can't take baths bc the way my bum/tailbone sits on the bottom of the tub causes my nerve to flare.

I never had bm issues with amyltryptaline, but I think that's bc I had my gall bladder removed long before my rectal pain started. I did read that some people have constipation issues with the drug, but maybe experiment with different fiber foods (smoothies made with frozen bananas, spinach and other fruits and veggies should help; some people are on a celery juice kick which I heard really gets you going! But doesn't taste that great.) I have started to eat more fruits and veggies, no dairy, and less meat, and I do feel better digestion wise.

My nerve flares just reading the messages on this thread. Your body does react to emotions and stress.

Did you have any past abdominal surgeries? By bum nerve didnt get truly bad until at least 5 years after my endometriosis surgery.

Best, Alex

VeroMom profile image
VeroMom in reply to AlexA810

Wow! 5 years post surgery! I would never have imagined those complications that far out. But yes I did have a Bartholyn gland removal surgery 5 years ago, too, but every doctor said there is no correlation. ☹️ Especially the gynecologist who did it. Today I’m having an especially rough day because I tried to put in a baclofen suppository (muscle relaxer) because I’m vasilating between it being muscle or nerve, and that has triggered my nerve (I guess) to be especially painful. I’m taking tramadol for the pain but I hate it. I called and asked about the amitryptiline but not sure if I’m going to get it. Will the amitryptiline help with muscle and nerve? Thanks again!

AlexA810 profile image
AlexA810 in reply to VeroMom

Hi Vero,

What did your PT say about the muscles in your pelvic floor? A PT specialist should provide you with the information that you are looking for. They should be able to tell you if your pelvic floor is tight or not through examination. If they say ur pelvic floor is tight, then odds are your nerve pain is a reaction to that tensed muscle, and they should know that and have told you. This is just what I have learned through my experience. If you aren't getting any answers from your PT, you might want to try another one.

Tramadol is awful stuff. You have already tried so many other things, I'm surprised that you feel they are questioning you trying amyltryptaline again (unless they have a good reason taking your current medications into account, like bad drug interactions or something.) If they decline you trying it again, make sure to ask why.

The amyltryptaline will help with the pain. A good physical therapist should help you with muscle issues. My experience with my first physical therapist was that she worked on desensitizing the nerve and stretching/strengthening the pelvic floor. Through that, I was able to wean off the amyltryptaline entirely. After therapy finished, she got me to the point where I could be somewhat pain free, not completely... only if I lived a sedentary lifestyle. But I want to do things! So I went back on the amyltryptaline and have been on it ever since. My new pt I just finished up with got me into stretching exercises to loosen up the tight pelvic floor muscles.. but nothing beyond that. A huge plus is that I can actually do the stretches every day and not aggravate that nerve. Something I could not do before. But I am still on the amyltryptaline.

Best, Alex

VeroMom profile image
VeroMom in reply to AlexA810

Guess what! I got the amitryptiline! It’s a 10 mg dose at night. Does that sound correct?

AlexA810 profile image
AlexA810 in reply to VeroMom

That's great! It might or might not be enough.. depends on your situation. I take 25mg at night. I am trying to get down to 10mg! I can only go off my experience, but like I said before, I felt relief after a few days but I was on 25mg. If the 10 isn't quite working for you, see if your dr will up the dose.

So happy you can try it again. And I hope it works for you!!

Keep in touch, Alex

AlexA810 profile image
AlexA810 in reply to VeroMom

Another lady on this thread is giving elavil (aka amyltryptaline) a shot too. Actually, both your posts were within 20min of each other! I told her not to feel defeated if 10mg doesn't work, bc I take 25mg and I know 10mg would not have worked for me! But if 10mg works for you, Fantastic!!! I feel like the less effective dose you can take, the better. Starting next week, I'm moving down to 20mg (I dont think the supplier makes a 20mg pill, so after talking to my dr, I'm taking 2 10mg pills at night)

Best!! Alex

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex ☺️ My pt is wonderful and has been such a blessing. I will ask her those specific questions next time I see her. She has never said my pelvic floor muscles were tight though, she just said she feels tension on the right side of my vagina and rectum. She also mentioned that my rectum feels like a “rope” on the right side. I’m not sure if that’s muscle or nerves? My pain is always on the right, but has always been mainly rectal and sometimes vaginal. I wanted to ask you a few more questions. First , how long should I give the 10mg amitryptiline before I ask if I should increase to 2. I plan on starting Monday. Also, if my nerve is not gliding properly and it’s really nerve pain, do you think a colorectal surgeon could fix it? I emailed this Dr. Dellon in Baltimore (a neurosurgeon) and he said the only way to fix this is surgery. I also emailed Dr. Prologo in Atlanta and he said can do a pudendal nerve ablation but I don’t even know if it’s the right nerve. If feels like a rectal nerve , which is apparently a part of the pudendal nerve branch. I just hate all of these pills when only one small part of my body hurts. 😢 I don’t understand why it can’t be fixed or maybe I’m just totally confused? Any thoughts? Thanks again. It’s so nice to have someone who knows this horrible pain like I do.

AlexA810 profile image
AlexA810 in reply to VeroMom

Hi Vero,

Finding a great pt is so important, so that is good to hear! :)

Your pain is only on one side? I'm not sure what conditions could cause that. But it sounds like you are doing the right thing contacting these doctors... but that one dr recommended surgery and you dont even know what is causing your pain. I would be calling every pelvic floor specialist in the country and be like 'I live far away. This is my condition. Im having trouble finding answers. Is this something other patients have been treated for at your facility?'... it might give you some answers or direct you towards answers.

As far as increasing your dose, I am not sure. You can wait the 4 to 6 weeks and see how you feel. Then talk to your dr. I felt a little relief after only a few days on 25mg. If I started at 10mg, I dont know if I would've noticed a change or not (but that is based on me and my level of pain). I have tried going down to 20mg from 25mg about a year ago and it felt like a significant difference in pain, like it was a bit worse than I thought it would be for such a seemingly small decrease of 5mg. I remember researching when I was going through the first stages of this mess that some people were on larger doses than me. Elavil is supposed to take 6 weeks to kick in, so maybe if you havent felt any relief or just a tiny amount, see if your Dr will up you to 25. If you feel like you pain decreased by 40 or 50 percent (just throwing guesses out of my head here), ask your dr if it's ok to go to 20mg. It is up to you and how you feel, and what your dr says is ok for you.

Is there anything you have noticed that helps you? Once my pain levels got so high that I automatically went into deep breathing mode and it brought the pain level down (but I was still in a lot of pain and hadn't even started pain pills yet.)

Hang in there!!

All my best, Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!!! So started the elavil last night 25mg but according to my rx it said take two but my doctor said one so not sure what the mix up is. It better not take six weeks to work. I've had such bad searing pain since yesterday afternoon. Not sure why but I feel RAW!!!! It's excruciating!!! Trying to push through but hell it hurts sooooo bad and my pain pills aren't touching it!!!! I'm so tired of this shit!!! It's been four years going on five and I'm done!!!! Obviously god isn't hearing my screams for help!!! Not sure why the pain is SO bad in the morning except that's usually when bms happen which I dread!!! Why can't it be poop and just go about life!!! My husband doesn't understand why there isn't a cure for all of this!!! No clue!!!! I hope the elavil works as well for me as it did u but only time will tell!!!! How have your days been recently? Feeling better? I only want your happiness and for life to be pain free although I'm not sure if this shit will ever go away!!! Talk to u soon!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Fingers crossed!! Hopefully in a few days you will notice some improvement and then at about 6 weeks it should kick in. I so hope it gives you some relief!! I look forward to your updates!

I was having nerve pain for like 3 weeks, then I stopped drinking my hubby's diet mt dew(!) And took 2 days off from my daily stretches and yoga, and the pain went away. I know I've mentioned this before, but there are certain food and drinks that if I consume too much it really lessens the effects of the elavil. I had a desk job for a year and I suspect it was those crystal light packets that you mix in water, but my bum was burning and it was the worst pain episode I had since starting elavil. I could not sit, I had to lean on either my left or right hip. I know all people react to drugs differently, just giving you a heads up.

I think Sunday night I'm going to try to reduce my elavil from 25 to 20, and see what happens. Hopefully all this stretching is helping relax that dang muscle.

Best, Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Morning Alex!! Thanks for the info on the food and drink. Since I have ibs I know the things I can and cannot have after 7 years. Hopefully!!! I pretty much eat and drink the same shit everyday otherwise I pay for it!!! I too try to exercise by going to the gym and walking the treadmill and doing weights. My pt said that exercising helps flow the blood to the pelvis which then should settle down the pain. Sometimes it helps and somedays it doesn't. I keep wondering why we all get this shit!!! Did not drinking the mt dew really change your pain? That's amazing!! What a small change to make for a big outcome!! With what we endure I guess we have to take everything into consideration!!! I can't believe all the stuff we have to go through!!! I keep asking myself is this all there is to life? I know others have it worse than we do but to have butt pain everyday is awful!!! No one has a clue as to how we feel!!! Rectal pain is one of the worst!!! I know having pain in other areas isn't fun but rectal pain is ridiculous!!!! I also have back and neck pain but not as bad as rectal!!!! To me there is no comparison!!!!! Do u think taking the elavil down will make a big change? Keep me posted on your life and anything u come across that might help. Always looking forward to learning something new!!! Do take care and talk to u soon!!! Hugs to u!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen!

I forgot about your ibs (we have discussed so much I get lost in the details!) I am not a big soda drinker but it's when i go through phases of sipping his sodas regularly is when i notice the changes in pain. Granted, i have to drink it regularly for a few days for it to show its effects. Same as those crystal light powders, never had them before. I decided to try them at work to stop the desk-munchies. I drank them and after a week or so, voila butt nerve pain. Then I stop and it goes away *shrug*. I also noticed a particular nut (walnuts?) That did the same thing. Weird.

NOBODY has a clue what hell we go through. I know my hubby doesn't, but he is supportive anyway. I wouldn't wish it on anybody but if I ever get the chance to have my hubby walk one day in my shoes, I would!! I think many people have never experienced a super painful event in there lives that lasts years and hard to treat! It's all words to them. It's an invisible illness.

But we have each other! Hugs back!

Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!!! Geez. Quick response. Thank u!!!!! Having a tough morning as usual. Unfortunately had to go poo and the burning is intense!!!!! I hate having to poo!!!!! Yeah my pt said try not to drink too much soda. I have one a day if that. Pepsi is my drink!!! Lol. We do talk about a lot of different things so it's hard to remember!!! U r so right in NOBDY understands this. I tell mike it's like pain after diarrhea everyday!!!! Then the pelvic floor tightens like a rubber band where it can spring at any moment!!!!! It is invisible to everyone else!!! Like "it can't be that bad". Bullshit!!! It's 10x worse or more!!!! When it got even worse (yes it was worse) I thought about taking pills but knew that would be stupid!!! I just want to live my life like normal without burning or pain. I want to be a good grandma and mother and wife and I can't be!!!! Wtf!!!! What have I done that's so bad?! I was in pain as I took care of my mom which made everything more difficult!!! I'm SO glad we talknand share cuz this definitely helps!!!! I've been trying to work through the pain but I'm tired of pushing through!!! I'm sure u r too!! How do u do it? I break down every morning and ask God "why?". Sorry just emotional today!!!!! The burning is killing me!!!! Anyway thank u for being there for me!!! I've talked to people on this site but they seem to fade away!!! I'm very thankful for u!!! Take care!!! Hugs!!!!

kalecolbe12 profile image
kalecolbe12 in reply to VeroMom

I have the same exact rectal pain....colorectal surgeon sent me to pelvic floor pt....she is really good...she did a thing she called nerve flossing to loosen up the pudental nerve which helped but every single time she goes in to do rectal trigger point release I have pain after for 2 days .She said if I feel like it duplicated the pain I have and the pain after bowel movement then she is in the right spot. Now I am on Flexeril muscle relaxer which h helps cut the pain a lot and doesn't make me feel too tired because I have to work a few days a week...Also I am going to see my colorectal guy on Tues to talk about getting Botox in Levator muscles.my pt said she can still work on the tight muscle relief after I get it...also thinking about trigger point shots of lidocaine etc....ugh I hope you or someone will reply back to me because I need other people to talk to who understand this condition....my email is mbhs21@gmail.com...prayers for us all to find answers,Audrey

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!! My pcp is letting me try the elavil which is a minor switch from my nortryptiline. God I hope it helps. I'm SO tired of getting through the day!!! I cry every morning cuz that's when it is the worst. I know my pain stems from stress but a lot from going poo. All my doctors say it's nerve related at this point. Going poo makes my nerves on edge. I've had soooo many injections with nothing helping!!! They can't give me any injection to numb the pelvic floor as I wouldn't be able to walk!!!! That's not good either!!!! So my pharmacy finally got the elavil in so will start tonight. I'm suppose to see a neurologist for my extreme dizziness so I'm going to ask about the nerves in the rectum. I'll let u know if I hear of anything that might help us. There has to be something that can help us!!!! I don't understand why we can't be helped!!!! God must not be listening to us!!!! It's sad to think of how many of us suffer from this shit!!! It's insane!!! I'll keep u posted on the elavil. I hope u r doing better!!! If I hear of anything I'll let u know!!! I so look forward to your posts!!! They make my day!!!!! Please take care of yourself!!!! Hugs to u!!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

That is great to hear!! Our biggest support is each other, bc we know what this is like.

What dose did they give you? Another lady on here just got a script for 10mg. But I'm taking 25, so if it isn't effective, and it's ok with the dr, I can't imagine why one cannot up the dose. 10mg would not work for me. So dont feel defeated if they start you at 10mg too.

You can read VeroMoms post above, she mentioned issues with constipation on her short time on elavil a while back. So maybe keep that in mind.. and adjust your diet if it becomes an issue. I dont know about you, but added fiber foods make me feel not so good. I prefer lots of fruits and veggies to get things going.

Best, Alex

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex (and Karen) ☺️

Reading through our posts makes me so sad. I pray every day that we find the relief we need. Couple of questions: one of you mentioned in your post a radiation therapy for rectal/anal nerve pain. Is that the one in Atlanta by Dr. Prologo? Also, Alex are u going down to 20mg amitryptiline tonight and Karen did u start your 25mg? I was on a middle school field trip with my son, exhausted, and just got back late last night. The only way I can make it through is with this tramadol ☹️ I think I’m addicted which makes me super anxious. I’m also nervous about trying the amitryptiline 10 mg. I was scheduled to start Monday (tomorrow) but nervous. I hope if this is truly nerve pain, not levator ani, then it will really help with just 10 mg. I’m tempted to go to the local vape shop and try a stronger CBD oil bc the one I use does nothing. Anyways, sorry to vent. Oh. One last question. I know Alex doesn’t have vaginal pain, but Karen do you? Thanks! 🙏❤️

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi VeroMom and Alex!!!! Yes it is sad!!!! It's pretty depressing to have this problem where no one understands!!! This past Thursday and Friday was awful!!! I have NEVER felt such excruciating pain with this!!! Not sure if it was scratched or raw but my god I was in tears Friday night!!! Nothing would touch it!!! Plus I didn't have my sample sleeping pill and was awake All Night!!! So awake 41 hours!! I was afraid to go poop yesterday but it was ok. Today is ok. What does the radiation do? Have never heard of it!!! I just started amytryptiline 25mg Friday. It even said I could take two but haven't yet!!! We will see!!! Hope something changes!!! I don't have vaginal pain thank god!! Anal pain is more than enough!!! This getting old sucks!!! I wear out more easily and with vertigo and migraines at times it is not fun!!! Just had Botox injections for that!!! Vertigo is here and there but not too bad!!!! I was on tramadol before and did nothing but I was also on norco too!!!! I have a CBD tincture and it doesn't do much if anything!!! I know we all vent orbwhstever but who better than our friends on this site who understand it!!!! My levator hits when I'm stressed!! Goes straight to my butt!!! I'm so sensitive there that I can feel everything in there and it sucks and with ibs it's even worse!!! It's more about the burning!!!!! Like a campfire in your ass!!!! We'll take care all of u!!!! Please keep in touch and if there r any new ideas please keep sharing!!! Hugs!!!!

VeroMom profile image
VeroMom in reply to Karen1954

Hi Karen! See my reply to you and Alex below. Here is the article I was talking about.

bayhealth.org/chronic-recta...

AlexA810 profile image
AlexA810 in reply to VeroMom

This is a great article!! And it does sound like Karen's issues... something to look into for sure.

Karen1954 profile image
Karen1954 in reply to AlexA810

Articles were great!!!

AlexA810 profile image
AlexA810 in reply to VeroMom

Hi Vero,

I did mention something about radiation, not sure if this is what you are referring too, but it wasn't radiation therapy as a treatment for nerve pain but a side effect of radiation therapy (ie damage of nerves through cancer treatment (radiation therapy to cancers like rectal cancer, ect)).

I keep wavering on when I am going to reduce my meds but maybe I'll start tonight. I did a 5k Friday and my nerves are a bit aggravated so I might wait for a week... or slowly taper down (like 20mg tonight, 25 Monday, and alternate like that for a week.)

Good point about the lower elavil dose. Yea, maybe the 10 mg will help with any remaining pain. Fingers crossed!

Alex

AlexA810 profile image
AlexA810 in reply to VeroMom

Hi vero and karen,

health.harvard.edu/blog/fin...

I was reading this article just now and it references some physicians in the field of pelvic care. Either one of you might want to contact them (one is female). The article revolves around a man but men get this too and treatment is similar when it comes to pelvic floor.

I made a discovery today. Over the past 3 days i only did my nightly pt stretches twice and my yoga not at all. I did my yoga this evening and my nerve is flared. When i was consistent doing pt and yoga everyday, my nerve was good. I guess this shows how important exercise is when dealing with this condition. That being said, im not going to lessen my elavil tonight. Im gonna wait until i have the nerve under control again, so maybe this friday.

Best! Alex

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex and Karen! I’m a teacher but left school early todaybc I think I may either have strep throat or the flu. My immune system must be down from 48hours of middle school chaperoning 😩. Thanks for the article Alex! Very interesting how this affects men, too. Karen I read an article the other day and it reminded me of you. My pain isn’t bad immediately after or during a bm, it’s an hour later it starts to hurt. This lady has horrific pain that sounds like yours and 2 colonoscopies and an MRI missed it. Read when u have a minute. And Alex can you tell me the specific pelvic exercises and yoga stretches you do every night? I really don’t do any bc I’m exhausted after teaching all day but maybe they will help? I have some exercises assigned to me from my pt but there are so many. Which do you do? Are you sure the yoga doesn’t trigger anything or do you think really helps? Thanks again you guys. I am very blessed to have found you both. I’m still trying to figure out if it’s muscular or nerves and just feel so depressed. I also have vaginal pain too so that compounds the problem. Thanks again. Btw- going to wait a week to try the amitryptiline bc I think I have the flu or strep 😷☹️

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi vero!!!! So sorry u aren't feeling good!!! Strep or the flu sucks!!! U don't need that on top of the rectal pain!!! I know that feeling!!! I sure hope u can get some rest soon!!! I've read the article and I have had a fissure but not a tear. I've had every test possible!!!! I thought I might have a tear but Saturday after praying I didn't go poo but finally did and wasn't bad!!! Yesterday was ok. Today I'm kinda constipated and it's awful! Feel like I have to poo but can't. Plus I've been awake for 34 hours now. Happened Friday too!!! Doctor prescribed a new pill but was $413!!! Can't do that!!!! My first pt gave me exercises which I should start back up. Might help. It probably helped a little but not as much as I had hoped!!! My uro-gyne says use the therawand every day!!!!!!!! I'm so very thankful for u and Alex too!!! U guys keep me going!!! I just want us all to be able to live life to the fullest and we can't!!! I get so upset at this!!!! I want to be the best I can be and I can't!!! Those links were really good!!! Won't make it to Delaware from ca!!!! Like I've said. I've been to so many doctors and therapists!!!!!! I'll keep plugging on!!! Keep us posted on how u feel!!! Take care my friend!!! Feel better soon!!!!

AlexA810 profile image
AlexA810 in reply to VeroMom

Hi Vero,

For a long time I was mostly sedentary taking my pain meds. Whenever I would do any stretching my nerve would flare and I would stop. I was doing the wrong stretches, my pt got me to gradually increase stretching with different stretches, so starting easy than with a little more of a stretch. The fact that I can now do numerous stretches WITHOUT aggravating that nerve is a huge milestone. I do have some aggravation with the yoga but it's not unbearable or causing me a whole lot of discomfort, and i do it gradually. I think for a while drinking my hubby's diet dew and doing yoga together caused my nerve to flare. But I went back to water now, and I'm still going to do my yoga (I do 'yoga with Adrienne ' there's a 20min beginners yoga, the only one I do) everyday and back off for a day if needed. It's all about listening to your body. I can't go into all-out stretching like everyone else, nor can I lift weights. But I'm taking it so slowly, and my goal is to get to that point.

My pt gave me lots of stretches but I do not do all of them. But eventually I will. She wants me to do them twice a day, but instead I do morning yoga and pt stretches before bed. Here is what i do..

-Clamshells, each side, hold 5 seconds, repeat 10x. (I started holding at 3 seconds though, recently upgraded to 5 seconds)

-Hip Flexor Stretch, hold 1 min, each leg. When I started, I was holding for 30sec. This one, I lie on my back, both knees bent. I cross one leg over the other. I put my hands around the uncrossed leg, behind the knee, and pull it towards my chest. I feel the pull in different areas almost everyday, lol, but mostly in inner and outer thigh. Also seems to stretch the piriformis too.

-Side Lunges (inner thighs stretch), this was a modification to the butterfly stretch bc the butterfly irritated my nerve too much (It also helps with vaginal pain which I do get often). The side lunge serves the same purpose and does not bother me. I lunge right leg 1min, then the other, holding for 1min. Originally held for 30sec when I first started.

-Hip Rotator Stretch, (outer hip muscle stretching) hold 30-60 seconds each leg.

-Piriformis Stretch, holding 30-60 sec. each leg. This one I lie on my back, legs straight, then I bend one knee and press it towards my chest or even towards the opposite side a bit. I try to feel that pull in the piriformis (keeping the other leg straight). This one aggravates my nerve while I'm doing it, but it relaxes shortly after finishing the exercises.

-Happy Baby Pose (I had to Google this to find out what it was called. I didnt know it was a yoga-ish pose.) Holding for 30-60sec.

-Deep breathing! Last thing I do is lie on my back, knees bent. I breath in deeply, feeling it open up my pelvic area, even pushing out my bum and anus, then slowly breathing out. I do this several times, no specific count, i just stay in that position a few minutes and relax.

Hope this helps!

Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex! Those r basically the same ones I do. Or use to do. Going to start again. I usually go to the gym and do the treadmill for 30 minutes and sometimes circuit weight training!!! It seems to help me be more normal. Haven't been able to go in a week but trying today. Having a lot of problems today!!!!! Keep up the good work!!!!

VeroMom profile image
VeroMom in reply to AlexA810

Thank you Alex and Karen!! I’ll keep you posted after I start the amitryptiline. Praying it may help this horrible rectal pain. Thanks again! ❤️🙏

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi Vero. Hope u r feeling better today. I'm waiting for the amytryptiline to hit. I know Alex said it takes 6 weeks. Well it can start kicking in now!!! Lol. We'll be here for u whenever u need to talk!!! My day today was hell this morning. Got up and went poo and then throughout the morning I went four more times with pain after of course. Had to sit on my heating pad all morning. This cannot be my life!! Plus my insomnia has gotten worse!! Had to pay $119 for a sleeping pill and then $259 for my pain pills. Shit!!! All this money for rxs is killing me!!! I miss my kids and having friends!! Hard to live my life like this. I'd love to be able to volunteer at a dog rescue or the shelter. Can't do it!!! Oh well. Sorry to vent. Again hope u r feeling better!! Please take care and let us know if the amitryptiline works!! Talk soon!!!

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex!! Again. Last night my pelvic floor was SO tight u could probably bounce a ball off of it!!! Like u were stretching a rubber band!!!!! It sucks when u look forward to sleep so u don't feel the pain!!

Yacoub profile image
Yacoub in reply to AlexA810

Levator Ani all of your stories all sound exactly the same as mine. Just bought a thera wand also. Does seem to help. Just be warned to follow instructions precisely! Otherwise I can touch the same trigger points as my physical therapist! Went a yr with no help. Best to all. Like y'all ( I'm from Texas and a woman.. ) The Pain is unbearable ! I want my life back!!

AlexA810 profile image
AlexA810 in reply to Yacoub

Yes, I have a wand and it helped sometimes, but the last couple times i seemed to have aggravated my nerve. I plan to see my therapist to show me how i should it.

Do you take anything for pain? I'm not into drugs but i feel like with this condition you need it. I feel like it makes it easier to go through remediation and to find out what benefits you.

Best! Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Oh geez. Just wrote u a long reply but can't find it. I take nucynta for pain. I use my wand for a specific muscle and it helps. It's always on the left side. I pray this shit stops one of these days. But I know my stress goes straight to the pelvic floor. Wtf. Why can't it go to my back or somewhere else. I hate it!!! I've been in spasm since I got up. Pushed myself to go to the gym and did the treadmill for half hour!!! Hope it helps my butt. Thank u for keeping in touch. Always great to talk to u!!! Vero too!!! Do take care and keep me posted on what your pt tells u!!! Talk soon!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

I was responding to yacoub :). Asking her about pain management and the therawand.

I will try to find your long post!! :)

Best! Alex

Yacoub profile image
Yacoub in reply to AlexA810

Hi Karen.. too many meds cause of all the surgeries..1 extended relief (ha) Exalgo which is generic for Dilatin (sp?) with insurance and only paying 20% costs almost $200!! Don't start it! Hydrocodone 10/325 and Diazepam. Been taking so long just barely takes the edge of the Levator spasming. Which is all day, thank God it stops when I sleep. Have had Electrogalbanic treatments.. works while it's inserted and comes right back! 1 yr with physical therapy inside and out.. same pain. Had Botox shots when I had a colonoscopy no help. So I guess if you don't usually use Pain Management the opioids would help. But your resistance builds up eventually. I also bought the Thera wand to use at home following instructions precisely, but for 2 days after I'm in so much pain I'm in bed. I so wished I had something to tell you that would work.

Sorry to say my prayers haven't been answered 😢. My best to you. Let me know how you are and if u find any answers that work for you.

Karen1954 profile image
Karen1954 in reply to Yacoub

Hi yacoub!! I know about unanswered prayers!!! It makes me sad to think that this is how we have to live our lives!!! Very depressing!!! I have so much emotional stress going on and it goes straight to my butt!!! I also know about opiates and its power over people!! After my three neck surgeries I was on norco 10/325 for nine years!!!! It was awful!! Plus I was told can't use diazepam with it even though I did!!! Went to a new pain management doctor who has been so helpful in trying to help me!!! He put me on nucynta!! It's $292 per month!!! Now I have insomnia and that med was $413! Can't do that! So going back to pot cookies. It's a pain to get but it works!!! I don't understand why we have to deal with this!!! I would be so much more productive if I was normal. I would have been a better caregiver to my dying mother!!! The therawand is ok but like u I spasm right after!!! Jesus!! What can we do? I've tried everything!!!!! I've done biofeedback and acupuncture and hypnosis and exercises and trigger point injections and Botox and physical and mental therapies!!! I've been to every doc possible with no relief in site!!!! God help us!!! I don't know what more we can do!!! Please do keep in touch cuz one of us has to be able to find something that will help us!! Do take care and I look forward to hearing from u!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

Just wanted to check in and see how you are doing?

I'm battling a UTI from hell atm.. and of course, culture was negative. But the antibiotics are working and today has been a better day. I just waited too long to see the dr. I should've went Thursday morning which I originally planned, but didn't. Then, of course, that night I was in so much pain I couldn't sleep. I need to learn a lesson or two. My last uti was 3 months ago, and this reoccurrence is questionable.

Anyway, hope you have a better update!

Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi my friend!!!! I'm sorry to hear about the uti. They suck!!! I've had one soooo bad I was bleeding!!! Yeah it seems like we learn the hard way!! I hope u r getting better!!! I'm just ok. Most of my problems happen after a bowel movement!!! I feel everything in the rectum! It seems like I have to stay at home for 5-6 hours now in the morning!!! It's getting worse!! I have no idea what to do anymore!! I really don't want to spend the rest of my life like this!! I'm also tired of having to push through the pain!!! It's so hard!!! I keep praying that we will get better!!! Why does stress end up in the pelvis!! I use to be so productive with work and I miss that but I think god wanted me to take care of my mother!!! Ok. Well now I'd like to do something but can't!!! Anyway. Please take care of yourself and thank u sooo much for checking on me!! Can't wait to hear from u!!!! Hugs!!!!

Karen1954 profile image
Karen1954 in reply to Karen1954

Hi Alex!!! Having another burning morning!!! Don't know why!!! After I poo my rectum just burns like a fire is up there!!! I know stool can be acidic but why can't I just poo and my rectum be normal? I'm so upset!!!! Don't know what I can do!!!! I have suppositories and a cold plastic thing I can put up there!!! Nothing helps!!! Sorry to vent. I'm just soooooooo upset!!!! Why?

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex and Karen! Hope u feel better soon Alex! UTIs are terrible. I’m at the end, I hope, of a terrible cold. I caught it after I chaperoned that middle school field trip for 48 hours. Felt like the flu, body aches and all. I have been putting off the amitryptiline until I get this cold completely gone. I also thought about maybe having a hemorrhoid removed. Could that also be part of this vicious pain cycle 🤔? Idk. This rectal pain has consumed me the past few years. Anyways I’ll try and check the posts every week. This last month of school very busy for teachers and my son is a senior so lots of end of high school stuff in the evenings. Take care!! ❤️

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi veromom!!! So sorry to hear u have been sick!!! Shit being sick on top of rectal pain and teaching is a lot!!! I wish I could work or volunteer but nope!!!! Not yet!!!! I know my rectal pain is from stress and bowel movements!!!! I feel like I have to poo even when I just went which is the incomplete evacuation from ibs. A vicious cycle!!! I've been on amitryptiline for a week and a half with no change!!!! I've been spending a fortune on rxs as I'm in the donuthole of my plan!! $700 in one week!!!! It effn sucks and is depressing!!! How did your rectal pain start? Something has to work for u if u can work. I've even thought of going to ucsf or once again to Stanford but not sure if anything will work!!! I just don't know anymore!!!! I can't seem to get out of the dumps!!! How do u push forward as I'm tired of pushing through the pain!!!! I can't help but hate my stressful job for my ibs and my pcp for doing a rectal exam with the anuscope which started this pain!!!!! Anyway I hope u feel better soon and enjoy the fun time with your son!!! I miss those days!!! Please take care and keep us posted on everything!!! Hugs!!!!

VeroMom profile image
VeroMom in reply to Karen1954

I pray and cry a lot. I take tramadol most of the day. I haven’t started the amitryptiline yet. The only thing that helps is the tramadol. I have to work because I need money and insurance. I really don’t have ibs (I don’t think). So it’s really just pain. I know it’s so depressing. I just keep praying that one day I’ll figure something out but I sort of feel hopeless a lot. I’m trying to keep the faith 🙏

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi VeroMom!!!! God I hear u!!!! I was on tramadol years ago but did nothing but I was also in norco!!! I take nucynta but doesn't seem to help too much!!! My ibs makes it worse!!! The burning is SO intense I feel like my ass is on fire!!!! Sometimes I try to push through the pain and other times I just sit on my heating pad and cry!!!! I blame my old job for the ibs and my pcp for my headache in the butt!!!! I can't imagine having had this when I was raising kids!!! I couldn't have been involved at all!!! I applaud u for pushing through and being a teacher!!! U r the unsung heroes of the world!!!! I wish I could blink my eyes or nose and make all of this go away!!! I have so much time on my hands that my brain goes into overload regarding everything!!!! I can't work or volunteer cuz I'm not sure I would ever make it. It's hard to keep appts as it is. God bless u for pushing through!!! I'm thinking of u all the time and only wish the best for u!!! Have u tried muscle relaxers? I'm actually going to talk to my uro-gyne about Botox again. Those muscles need to stop working!!!!!! I'll keep u posted!!! Happy Easter my friend!!! Try and take care and u r in my prayers!!! Talk to u soon!!!

AlexA810 profile image
AlexA810 in reply to Karen1954

Hi Karen,

Im sorry the elavil hasnt kicked in sooner. I am experiencing some Vulvodynia symptoms since my UTI (or quite possibly interstitial cystitis; i need to see a urologist). Im reading on the nva.org site about peoples experience with Vulvodynia. There is a lady who said elavil at 50mg worked for her but took 3 months to fully kick in. Hang in there. Ill always keep a lookout for new things to try to help us.

Best, Alex

Karen1954 profile image
Karen1954 in reply to AlexA810

Hi Alex: sorry to hear about the vulvodynia!!! That's awful!! Geez u can't catch a break!!! I hope u can see a urologist soon so u can get some relief!!!! I'm just SO frustrated with all this shit!!! I can go poop but the burning after is insane! I've tried everything!!! Then if I stress about something the pelvic floor tightens up in a knot!!!!! Elavil still hasn't kicked in though I know u said it can take time!!! I read about the ibs tx center which sounds great but costs $2500!! I'm just sick and tired of mornings being hell!! Sometimes it gets better and of course other times it doesn't!!! I give up!!! So worn out after 7 years of ibs and 4 years of pelvic pain with no end in sight. Thank u for thinking of me and please let me know if anything that might help!!!! I wish u nothing but the best!!! Take care!!!!

VeroMom profile image
VeroMom in reply to AlexA810

Hi Alex and Karen,

Sorry about the vulvodania Alex. I’ve often wondered about that, too. I still haven’t tried the amitryptiline. I’m a little scared about constipation and pushing. May start this weekend. Have either of you done the Botox injections or CBD ? Something has to work! 😩

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi VeroMom!! I have tried Botox and it didn't seem to work so then I did trigger point injections. Not much better. I'm going to try Botox again! I need the levator muscle on my left side to stop!!!! It's killing me!!!! I haven't had constipation yet with the amitryptiline. Thank god!!! I tried CBD awhile ago but not much relief. I just started it again so I will let u know. The pot people told me pain pills r good for bone pain and CBD is better for muscles and nerves so we will see. I'm SO tired of the ibs and levator pain. I found an ibs doctor but it's $2500 for everything!!! Going to read this doctors book first!!!! I'll let u know how the pot works and the Botox!!! So great to hear from u!!! Please stay in touch. U ladies r my lifeline!!!!! Take care.

VeroMom profile image
VeroMom in reply to Karen1954

Will do! Good luck and God bless! 🙏 lmk how the amitryptiline is going.

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi VeroMom. Thank u for your continued posts. I so look forward to those!!! Still the amitryptiline hasn't kicked in!! Don't know if it will!!! I've been thinking about trying the ibs tx center!!! I'm not sure if the ibs is really related to my colon and rectal problems. I'm sure they r to a point. Today has been awful!!! So much pain and burning!!!! I've been crying all morning it hurts so bad!! But the tx center is 2500 for four months with video appts and testing done remotely. I bought the doctors book but not sure if that will help with everything!!!! Any thoughts? Anyway I hope u have a great weekend with your family!!! Try and enjoy it!!! I know it's hard but u r strong!!! God bless and take care!!! Can't wait to hear from u!!!

VeroMom profile image
VeroMom in reply to Karen1954

Hi Karen,

Two things I have done which help a little are taking magnesium at dinner. This is supposed to help relax muscles in the morning. I am posting the link to the one I buy from amazon. Second is LGlutamine powder from the Vitamin Shoppe (their brand). It’s supposed to help with IBS. I don’t think I have IBS but this is supposed to help leaky gut. Lmk if you try either. Take care!! 😃

Karen1954 profile image
Karen1954 in reply to VeroMom

Maybe I'll try those again!! My rectum hurts soooooooo bad from going off and on all day!!! It feels raw!!! No clue what to do!!!! So I'll let u know if I try them!!!!

Karen1954 profile image
Karen1954 in reply to Karen1954

Hi VeroMom: sorry to bother u but yesterday was SO awful!!!!! Today's a little better but still so much pain!!!! I can't do this anymore!!!!!! God why do we have this!!!!! Feel like I have to poo and have the urge but nothing!!!! God damn it hurts!!!!! I've tried everything!!!! Sorry to bother u!!! Knew u would understand!! Take care my friend!!!

olivedog profile image
olivedog in reply to Karen1954

Hi...hate to say this, but I have exactly what you guys do! It is absolutely horrid, and has ruined my entire life! After poo, I can barely go as it is, it is so painful I calling a rat inside biting my ass all day! I have been through everything too. I am on my 7th colorectal surgeon. Mine started with a hemerrhoid banding. My son tore me 28 years ago, 4th degree lacerations, every thing was formed areound the tiny nurses finger. Well this arse of a doctor obviously did not remember this, and over dilated me ...without even being checked internally, he just spouted off...u have any levator syndrome! Well now my poo comes out very thin. This year in January I started seeing the head colorectal surgeon at Loma Linda University. He felt my canal, actually left his finger in there! How amazing! Then deduced I was very narrow, I have been working on dilation since, that has helped the poo come out better. I do have to take MagO7 or cape aloe 450 every night.

Fast forward to April, ER gall bladder removal!!! I had actually been doing better...now because I cannot do my stretching, my low back is out terribly! I am continuing on my dilation, trying cbd oil ( syringing it in there, it kinda hurts?) I did find one oil, by Amoils, it completely took away the pain, so get this! Two tiny drops on the outside...it works it's way up there, but it does take the pain away. It is their fissure formula, their number is 1 866 445-5433, they are real nice, and this does work! Amoils.com

Now i am dealing with the adjustment to bile coming in willy nilly,

But pain, back pain,.....I eat no dairy or gluten for five years, drink only water and decaf green tea, slippery elm tea with manuka honey....I just can not believe no one really knows what to do. I think I need LIS surgery, but I think some of these docs are morbid and like to see people in pain at this point. Gabapentin I can not take. I can not take much drugs. I have been on Xanax for 26 years, and I stay at 4mgs per day, and tenormin for way over 40 years. I also use a tens unit on either side of rear hole...helps alot when in spasm tens 7000, great buy on Amazon, used it for 2 years. Just ordered a long tens anal probe??? I will try anything at this point. Do not do Jini Patel's stricture protocol!!!! Once, I was vomiting, and sick for over 3 days, just 15 drops of the mixture...very scary! I do know it's okay to put a tens probe up there, my therapist uses one...mine is just too short.

Well as you can see this has taken up my whole life! I've called that person in Florida, I'm in California. I'm just gonna keep praying! It's so awful!!! I told my husband about finding you guys,

As I think a lot of doctors think it's in my head!!! The surgeon that took my gallbladder out said biofeedback back...well what in the hell is that going to do? This is definitely nerve, and functional.

I retrained jaw muscles for 50 years in my own private practice. You can not tell an involuntary muscle what to do, you have to get to the root cause, plus I think I have scar tissue....I could go on and on...you get it, please take my email, and let me know of any thing more you learn of, I would more than appreciate your kindness! Thank you,

Cheri😘

Email: c.fether@yahoo.com

Karen1954 profile image
Karen1954 in reply to olivedog

Hi Cheri!!! So sorry to hear of everything u have been going through!!! It really does suck getting old! I don't know how old u r but I'm 64! Never in my wildest dreams did I think my life would be like this!!! The hurting after going poo just sucks. I hate going poo!!!!! Does that amoil really work by putting the drops on the outside? Is it a prescription? I'd LOVE to try that!!!! I'm sick and tired of doctors saying "it's all in your head!" Like hell!!!! It's a true physical condition u idiotic morons!!! I had a tens unit but never used it on my butt. Gabapentic doesn't work. CBD doesn't work!!! I take Valium at night but my doctor only gave me 10 since I use a suppository sometimes during the day with a muscle relaxer which doesn't work that great either. I'm surprised the doctors at Loma Linda can't do more. We only have two private practice colorectal doctors in Sacramento but now going to UCD to see another one. Do u get burning after u poo? Yesterday I had the stomach flu with diarrhea and by the end of the day I was done!!!! Burning all damn day!!! Excruciating pain!!! I just tried Hypnosis again. Not sure how it's going to work. Have to listen to a tape everyday!!!! What the hell r we suppose to do? I can't live like this!!! I'm sure u can't either!!! What is the name of the oil u use on your butt? I will always be here when u need to talk!!!! Thanks for listening to me too!!! It's hard to talk to people about this!!! They don't get it!!!! I hope we can both find some answers and I'll keep u posted if I hear of any other treatment!!! Take care!!!! Can't wait to hear from u!!!!

olivedog profile image
olivedog in reply to Karen1954

Hi Karen,

Sounds like you have left no stone unturned either...u know it would be easier to write me directly to my email...

c.fether@yahoo.com

My phone number I will give you when you email.

I believe you are the one I read that lives in Sacramento? I think this is a UK site.

Yes this oil does work for me, I had used it early on, and decided to try it again...I was amazed, only two drops on the external anus, and it gets up there! Call them, their # 1 866 445-5433

HealingNaturalOils

amoils.com

Fissure Formula

I do not have fissures, but this is helped, gone days without pain.

I rinse myself out after morning bm. Do you use a stool softener I have to use laxitive every nite. MagO7, or cape aloe. 450 by Ortho molecular. I just told my husband about you, now he knows this is not a made up deal...why would I want to live like this!!!! I am 66. All caused by overdilation of banding. Plus not probably getting enough bile for lots of years??? My stool goes from thin to normal girth does yours?

Any how gonna eat my lunch, just started on Lypo gold digestive

enzymes? For fat digestion. I am trying not to lose weight! So I must eat!!!

My best!

Hugs Cheri😘. I just seem to need the oil after rinsing out after bm, and no pain. I also am dilating, and adjusting to no gallbladder. Funzies!!!!!!!!!!!

kalecolbe12 profile image
kalecolbe12 in reply to olivedog

Hi Cheri..I will email you as I am in the same boat...I am going to order the cbd oil from Armoils.thanks for that as I need something for internal pain

Karen1954 profile image
Karen1954 in reply to VeroMom

How do u feel when u take them? Any side effects? Going poo too much or a lot?

VeroMom profile image
VeroMom in reply to Karen1954

No side effects from either. The magnesium makes you a little tired. ☺️

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi!!!! No diarrhea or anything? When I took the glutamine I went all day!!!!!! Magnesium made me just have loose stool!!! I'll try my ibs solution and take it from there!!!! Like I said still thinking about the ibs tx center but still the cost is kinda expensive!!!!! Keep me posted on the meds and supplements!! How long have u been on the magnesium and glutamine? Take my friend!!!!

VeroMom profile image
VeroMom in reply to Karen1954

The magnesium is chelated so doesn’t do anything to my stomach. The L glut powder I only do a couple times a week first thing in the morning. Supposed to help with leaky gut and IBS. I hope you find something that helps you! I started the amitryptiline Friday but haven’t felt any different ☹️ Good luck!

Karen1954 profile image
Karen1954 in reply to VeroMom

Hi!!! Omg Saturday was awful!!!! Then yesterday I went poo and was really good!!! Today I went and I've been in pain all day!!! What the hell!!! I have to take care of my grandkids after school the three days!!!! God help me!!!! I asked my doctor today about what to do and she suggested integrative doctors. Going to do an allergy test to see what my stomach can't handle!!! I'm SO tired of this!!! Not a way to live!! I'm sorry I'm laying this on u. Just needed a friendly ear!!! Hope u r having a great day!!! Take care!!!

VeroMom profile image
VeroMom in reply to Karen1954

amazon.com/Country-Life-Che...

VeroMom profile image
VeroMom in reply to Karen1954

goodbyeleakygut.com/l-gluta...

Hi Karen... have Levator Ani too and I am on cyclobenzaprine and getting pelvic floor therapy. It's like three steps forward one step back with all the time I've had some days where I didn't have to take any pain pills or muscle relaxers but it's always a different symptom that comes up then I have to start on them again... I need other people to speak with who understand this as you say regular people don't understand it..

Hi!!!! So sorry to hear that u have this awful problem too!!!! It's great u have some good days!!!! My good days r few and far between!!!!! I hope u have found a good pelvic therapist who can help u!!! My first one was ok. We just did exercises!!! My second therapist did balloon manometry and biofeedback but after a year and a half we had reached our limit!!!! Exercise is suppose to help so I try to go to the gym but can't always make it!!! I'm SO tired of all this. I also have ibs which doesn't help matters!!! If u have read my posts I have tried everything!!!! I'm seeing a new colorectal in July that being the soonest appointment!! How did yours start? It's just an awful problem that debilitates people!!! I hope u can get some answers and being on the path to recovery!!!! Take care and talk soon!!!!!

Hi Karen...sorry it took so long to reply but one of my best friends just passed away with lung cancer and I was busy with that and of course this just made my pain flare...well I am 65 and I think mine started because I lost three good friends last year and then I lost my fourteen-year-old dog which was like my soul mate and I hold all of my tension in my pelvic floor so my physical therapist said that it takes a long time to get those muscles back to a normal position because they're used to being tensed up and the tenser they get the less blood can get to them and that's when the pain starts...ugh!!...so I think I will try the Botox,although the Flexeril has helped a lot as long as I take stool softener and drink a bit of prune juice so I don't get constipated.i am so glad to have found people to talk to!! I am going to s ND for that cbd oil for fissure and see how that goes...I may try elavil.....also my niece in the UK is sending me some buscopan oral and rectal which is for spasms of IBS but worth a shot!!!hugs ,Audrey

olivedog profile image
olivedog in reply to kalecolbe12

Hi, Karen and I are friends now, if you are on any blood pressure meds please read up on CBD, and do not take it, it could be dangerous, as it uses the same liver enzymes or something of that nature, and can mess with your heart rate big-time. I took only 10 mg. It took away the pain, but I went into bradycardia.

I feel my heart is more important! Read up, it has drug interactions.

Best wishes!

Hi Audrey!!! I'm so very sorry to hear about your losses!!! That's awful and terribly sad!!! I hate losing dogs!!! Or any animal!!!!! My heart goes out to u!!! What is the nerve flossing? Sounds like what I need. I have tried nortryptiline and amitryptiline and gabapentin and nothing helped!!! I have tried Botox and it didn't work. Have gotten trigger point injections and they really don't either!!! My pain started after a scope exam of my rectum. She did something and I've never been the same since. Then trying to find a good med lead me to constipation and diarrhea!!! If I didn't have to poop I'd be happy!!!! It burns and I always feel like there is more and if I strain thinking I have to go it gets worse!!!!! I too carry tension and stress in my pelvic area and I hate it!!!!!! I can sit here on my heating pad which I do a lot of and then bam the headache in the butt hits!!!!! Why do we have this?!!!!!!!! I've had it for four years now and I'm just so over this!!!! I can't function!!!!!! I have tried everything!!!!!!!!!! I don't want to live my life like this!!!!!! I want to enjoy my kids and grandkids and husband but that's not happening!!! What r the meds u r getting from the U.K.? I hope u can have a great day!!! I'll be here whenever u need me!!! It is nice to know we have people to talk to and understand!!! Take care and talk to u soon I hope!!!!

I am glad I’ve found you! I have these issues and they won’t go away. My long-term insurance carrier wants me to apply for SSDI. I keep hoping it’s going to get better. In the past seven months I’ve had six major surgeries starting with a bowel resection for diverticulitis and I’ve had many complications since. They say that did not cause the syndrome but coincidentally this is what I’m left with. I can’t possibly work because I don’t know on the spasm will begin, and as you know, I can’t sit or stand when it happens. Ativan definitely helps but I can’t live on that and work. Is anyone working while they have this?

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.

Yacoub profile image
Yacoub in reply to Karen1954

Hi Karen I see you post is old so I don't know if your still involved with this blog or not. Everything you say I have said. Cant leave the house early can't sit or stand. On SSD for several yrs now starting because of a 360 lumbar fusion, total right hip replacement 2nd upper back surgery knee replacement. Then I somehow got a bacterial infection, found with a vaginial swab Actinomycetes Israeli. For that I was 8weeks intravenous Amoxicillin 800mg 4 times a day, that I had to learn my self and then continued that for 12 months thru an infectious disease Dr. I have degenerative Disc Disease. Now and for 4 yrs I have had Levator Ani. My luck has not been good. I have had a colonoscopy (that was the Drthatgave methe diagnosis), 5 weekly treatments of with a Urogyno and a machine inserted Pt internally and externally. I takepain meds which cause constipation .. I don't know where to turn or what to do next. Colorectal Dr did Botox nothing has worked. I feel my life is over and that I may live in pain till I die. Have you had any relief, what worked for you? Please any advice you have would be gratefully accepted. I hope you are well thanks

Karen1954 profile image
Karen1954 in reply to Yacoub

Hi!!! Boy u have been through the wringer with all your surgeries!!! That's crazy!!! Believe me I understand totally what u live with!!!! As u have read I have tried everything!!! My pain doc has tried numerous types of injections of which nothing has worked for my rectal pain. I think my levator ani has gotten better but I have problems with a burning rectum which is excruciating!!!! The heating pad is my best friend!!!! Colorectal has done shit to help!!! I think what has helped r the ganglion blocks of impar for the levator problem!!! Have had quite a few!!! I do understand your feelings of frustration!!!! I've had a cervical neck fusion and have lumbar and sacral pain because of degenerative disc disease. I get migraines more often so we r trying to deal with that. I've been trying to get my ibs stabilized. Again have tried everything!!!!! Can't really enjoy life to the fullest as I have pain or burning or both which as u know when pain occurs it detracts from having fun or a life!!!! No one gets it!!!! It's like just deal with it!!!! U try living with this shit and tell me how u feel!!! I feel your pain and of course wish I could give u some help but just know I am here if u want to talk!!! Take care and keep in touch!!!!

Yacoub profile image
Yacoub in reply to Karen1954

Thanks so much for your reply. Just like everyone we're said to hear of all the numerous problems, same time nice to know you have someone to talk to who really understands. Sorry you still haven't found relief. I have permanently discolored my skin from heating pads and ice packs! My ass lols like one of those baboons! Embarrassing to say the least. At this point no one sees it besides the Dr.'s and me. 2 yrs ago my husband of 37 yrs told me it wasn't my fault or his but he wanted a divorce. We didn't fight, we had great communication no apparent reason. Except I guess for sickness and in health didn't mean shit to him. I knew after looking at his texts that he was talking to someone else. He persuade her. I couldn't have sex. I guess he saw no end to my different illnesses. So 2 weeks after our divorce was final he went overseas and married his second cousin whom I had also known since the 80's! She was always at all of "our" family functions for years because of course she was family. Sound like backwoods BS to you? Anyway I see him everyday for morning coffee, calls to see what I want to eat from one of 3 restaurants we own and eats here and watches Netflix till 10:00p?? Sleeps there. He pays all of my bills, House pymnts etc, drives me to Dr if needed, grocery shopping. Gave me diamond earrings for our "anniversary ".!! Tells me he loves me everyday. Soo we all know how stress causes Levator to feel worse. I believe in God, but wonder how He thought this could be a good story for mine. Still pray, still cry and just feel broken inside and out. I'm 63 think like I'm 40 and my body feels much older. Sorry to hear all the pain you suffer and the degenerative disease as well. I almost feel like asking my Colorectal Dr to give me a bag to get rid of the pain! I'm sure you may have had desperate thoughts as well, I shouldn't assume. What will we do. OPIODS are not really even taking the edge of anymore, except causing more problems with constipation. Cervical pain is no joke either!! Plus IBS. IF I find anything that helps I will certainly let you know. I hate the thought and couldn't leave my 2 grown children or my grandkids and new granddaughter or I might consider moving to Co. to get medicinal marijuana, but from what my holistic friends research tells me the THC in it would be the help. I can't stand weed! Makes me so paranoid, and after all I have been through, I'm sometimes feel like I'm barely hanging on to my sanity. Sorry to unload on you, that's how it makes you feel. No one understands except for people like us. Wishing the best for you! Sorry to know about the migraine s. That must be so hard. We just have to keep trying and enduring until we can get the help we need. Thanks again, ther just has to be a way out of this! Take the best care you can. Also here for you whenever you want to talk! Sincerely

Karen1954 profile image
Karen1954 in reply to Yacoub

Wow!!! That's a lot!! I'm 64 and have been married for 37 years and I thank god for my husband. He hasn't left after not having sex for four years!!! He said in sickness and in health. I'm working on it. I see a therapist who tried to help. Last year my mom was diagnosed with non Hodgkin's lymphoma and lived with us until her death last March. Thought the problems stemmed from the stress which it did but didn't let up after her passing. Just heightened everything!!!! It was so hard taking care of her when I felt like shit!!!! But I miss her like crazy and still cry a lot!!! I have a son and daughter both married. My daughter has three kids and my son just had his first. Want to be a great grandma to hang with but this effn problem causes me to miss things or be short tempered. My daughter is my rock!!!!! She always listens to me even when I know she's probably tired of it. I thought the same to my colorectal doctor. He wouldn't remove anything!!! I don't want a bag. I too believe in God and ask everyday for his guidance to help me deal with this or take it away!!! I don't get it either!!! What the hell!!!!!! I don't get it!!! I'm a good loving person as I'm sure u r so why us and everyone else who have this shit!!!!! U have been through so much shit!!! I know it's hard believe me!!!!! I wish there was something I could say or do to make u feel better!!! I know I'm all over the place but so much going through my head!!! Please keep in touch!!! I'm looking forward to your next post!!!!!

Karen1954 profile image
Karen1954 in reply to Yacoub

Oh!!! Pot doesn't help. I have it. Helps me sleep that's it!!!!! Yeah I was on norco for nine years. Got off that and went on nucynta and butrans patch. Stopped nucynta on my own. Doc said keep on butrans for now.

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 am a 45 year old male and have been dealing with ani levator syndrome for about 8 years. I would like to know more about DR. Kahn. Do i need to make a GI appointment first in the Cleveland clinic in weston Florida before i see her? Or any GI doctor would do? I

My husband is suffering from this. Please is there anyone you can recommend that can help us. The colorectal surgeon we've been seeing basically said he he thinks my husband has protalgia fugax but doesn't know the cause or anything to do to fix it. It's destroying out lives.

Are you still on here? Been to the Cleveland Clinic in Ohio twice for shots would really like to talk to you.

Hi Dragonfly90! Yes I am. I've heard the Cleveland clinic is the best. What kind of shots? I've had numerous injections from epidural to ganglion block of impar and vaginal shots to the puborectalus muscle. My problems also happen with bowel movements where my tissues burn like a fire!!!! It seems like it's getting worse!!! I really wish I could enjoy life more!!! It's been a tough four years for the levator ani problem and my ibs. What problems do u have and how was the Cleveland clinic? Can't wait to hear from u!!!!

I have a 26 year okd son whose life has been turned upside down by las. He saw numerous Doctors and did finally get the diagnosis from the surgeon at Cleveland Clinic but we are still dealing with people who have no knowledge of the diagnosis. The surgeon does not believe the intensity and made him lose his short term disability. He wont tell us how hes determining where to put the botox shots. He done 2 already with no relief. Looking for another doctor...

I'm so sorry your son is going through this. I would be devastated if I had had this in my younger years. I can't handle it now but to be a young man or woman with this shit!!! A lot of doctors have no clue what levator ani is which is hard to believe. Duh u r in medicine!!! The doctor should be able to figure out where the shots go. I can see how it would be hard for a male as obviously they don't have a vagina. That might be hard to inject into the rectum. Have u looked into a Therawand? It's like an acrylic wand that u insert into the rectum and pulse it over the puborectalis and it relieves some of the pulsating muscle. I have used many meds and suppositories to help relieve the pain and pressure. My pain only goes away when I sleep. As soon as I get up the pressure starts along with the urgency to poop. It's so intense. That is ridiculous to take away disability!!! They have no clue what this feels right. When I got on permanent disabity I wrote a letter explicitly telling them what happens and how I feel and how I could never work at this point in time. U might try it!!! If u have any questions just ask. I've done and tried everything!!!!! U name it I've tried it!!!! Hope to hear from u soon!!!!

Cyclobenzaprine has saved me ....he may want to try it..I have last and going to a pelvic floor physical therapist but the combination of both the muscle relaxer which is also an antidepressant by the way and the physical therapy seems to be working

I was wondering if the Botox shots work?,I am on cyclobenzaprine and going for pt but my colorectal doc said Botox should work if the pt doesn't help

I have been suffering for three years the pain has become intolerable I take 39mg oxicodone every six hours helps a little not like when I first began. I went to Dr Kahn at c c she offered injections with botox but She want very convincing she said one could become incontinent. R u still getting treatment and r u much better please contact me if u can Roz Loomis @gmail.com

Karen1954 profile image
Karen1954 in reply to rozamond

Hi roz!!!! I'm sorry u r having a lot of pain!!! Me too!!!! I'm surprised u got oxycodone for this!! I'm shocked it doesn't help much!! I know the pain is awful. Mine starts as soon as I get out of bed. Gravity takes over!!!! I also have pain after bms. It just sucks!!! I haven't heard about becoming incontinent!! Botox didn't seem to help me!! I've had soooooo many injections from my pain doctor. Nothing has touched it!! Not even pain pills! Stress does it to me!!! Just throbs!!! I try to do deep breathing techniques. Need to get back to doing my pelvic exercises!!!! After I had a scope my pain started. I blame that!!! I can't live my life like this!!!! It just kills me!!! I've heard that doctor is really good!!! I even went to Stanford!!! That didn't help. Said I had narcotic bowel syndrome!!!! Gods not listening to me!!! Keep me posted on how u r doing!!! I'm always here if u need to talk. It helps to talk to people who understand the pain!!!! No one gets it!!! Please take care and can't wait to hear from u!!!!

rozamond profile image
rozamond in reply to Karen1954

So happy to hear from u. Pudendal neuropathy started4yearsago after dr removing 5hemroids. right after the first pain began he hit a nerve but would never admit it. I have done everything injections botox on the bum not internally. I am at my wits end . I mainly stay in the hous asgoing in car is excruciating pain yes I take oxicodone under the care of pain MGM remains it takes the edge off it I cry myself to sleep at night my husband feels terrible no one understands thinking going back to Cleveland clinic infl even though she said it could cause incontinence I am so desperate probably anothe failed procedure.my dear we must keep on keepin on what else can we do keep in touch it is comforting to know we r not alone

Karen1954 profile image
Karen1954 in reply to rozamond

Hi rozamond!! Sorry to hear about all of the pain and problems!!! I know how hard it is for u!!! I totally understand!!!! Of course the doctors never acknowledge that they did something wrong!!!! I told my doctor that wasn't normal when I felt a pop. She never said a word!!! Feeling a pop in my butt certainly wasn't normal!!! I know it's hard on our spouses but again they don't quite get how much pain we r in!!!!! U can try and explain to people but most think just suck it up it can't be that bad!!! Like hell!!!! I've had Botox internally and it did nothing!!! I use to have some "good" days here and there but now everyday sucks!!!!! God help us!!!! I don't understand why we have these awful pains!!!! No reason for it!!!!! It makes no sense!!! I pray that something helps u!!! I know about feeling at your wits end!!!! I've tried absolutely everything!!!! I know a lot of mine stems from my bowel movements!!! Wish I didn't have to poop!!!! I'm so glad we have each other to talk to cuz we understand!!!! Keep me posted on how u r feeling and let me know if there is anything new to try!!! Please take care and talk to u soon!!!!

rozamond profile image
rozamond in reply to Karen1954

Everything u wrote is exactly what I am enduring. gastro dr suggested a colostomy no no trading one problem for another but she says no pain I have heard otherwise seems to drastic. getting ready to go food shops that will mean landing in bed soon afterpain has become relentless 24 7. Thanh g d for oxicodone at least I get a little relief please keep in touch no one understands they keep saying but u look so good at

Karen1954 profile image
Karen1954 in reply to rozamond

Hi rozamond!!! I too have looked into an alternative. Even asked my gi about removing the rectum. He said nope. I mean I don't want a bag but I don't want pain!!! I had a big poop this morning but it feels like there's something still there per usual. There isn't!!! I hate this feeling!!! Of course here comes the heating pad!!! No one gets this pain except for people like us!!! I cry every morning asking god to take this away!!! I've had this pain for four years!!!! Seems like no end in sight!!! We can't live the rest of our lives like this!!!! My therapist says volunteer. U can't with shit like this cuz people depend on u to be there and as u know I can't guarantee I'll be there when scheduled!!! She doesn't get it!! I know I have too much time on my hands but I have no control of how I'm feeling!!! As u do I look forward to sleep cuz there is no pain!!!! Not a great way to live!!! I'd love to get away but won't go anywhere if I won't feel good!!! Now with the insomnia it all sucks!!! What triggers your pain? Obviously running errands!!! What do u do for it? I've been told the only way to see if there's any inflammation is through a colonoscopy!!! Just great!!! I've tried gabapentin with nothing positive coming out of it!!! I just want to poop and be on my way!!! To think the stress of a job I loved resulted in this shit!!!! I never thought my life would turn out like this!!!! Let's just say life isn't turning out like I planned!!! I'm very family oriented but it hurts when your son just doesn't have time for u anymore!!! We were always so close!!! Life sure does change!!! I hope u can feel free of pain soon!!! I keep u in my prayers!!! Please take care and I can't wait to hear from u again!!!!

rozamond profile image
rozamond in reply to Karen1954

Karen dear I too have grand children and weddings I have had to miss great friends that give me crazy advice they have no idea. Karen please let go of the heat and try ice packs I buy rectal ice packs keep them in the freezer wrap them in cotton cloth , I use old napkins pack yourself in them. Use them all day and night I wear tight jeans it keeps them in place it is my only salvation please try it I even get up in night and place it yes I have a constant feeling or urge to poop but it is usually false but u never know can't take chances I did have colonoscopy it showed nothing I too cry myself to sleep many a night I too cannot make definite plans we were taking family out for our anniversary and last minute I had to cancel I thought for sure I would die from pain. However we r here and we have all our marbles I think talk to u soon 🌈🙏

Karen1954 profile image
Karen1954 in reply to rozamond

Where do u find rectal ice packs? I have an acrylic thing I'm able to place in my butt fir a few minutes which helps but only for a few minutes!!! I know there r other people that have serious illnesses or problems but still our problems r still awful!!! I'm so tired of pushing through to make it through the day!!! For awhile I would have a few good hours but not recently!!! It's been constant!!! Like u I'm tired of all this!!! Freezing of the butt sounds great!!! Hope u r having a good day!!! Always love hearing from u!!!!

rozamond profile image
rozamond in reply to Karen1954

Gentle pack flexible reusable oerinealice pack,sleeves there are several kinds find these the best last forever in freezer I get them on Amazon for 34.99$ I would pay 100cant b without them give some relief have them on more than off . Above should say perineal very bad at typing just learning if u dint have Amazon try a medical supply good luck

Karen1954 profile image
Karen1954 in reply to rozamond

Hi!!! Looking them up right after talking to u. Lol. Yeah I figured it was perineal. Lol. Thank u so much!!! Do u use any lubricant? I have slippery stuff I use with me "rectal popsicle". Going to try cuz I've always said I could shove ice up there!!! Lol. Just curious how old u r and where do u live? U just put one up your butt and off u go? Sorry so many questions. Off to go to Amazon. Talk to u soon!!!

Karen1954 profile image
Karen1954 in reply to rozamond

I can't seem to find what u told me or maybe I have. R they ice packs? They have vagi-cool packs or perineal packs but r $16.99 or $24.99. Want to get the right ones!!!!

rozamond profile image
rozamond in reply to Karen1954

Hang in I will get correct info they come 3in a pack u lay them on outside of rectum secure with wrapped cotton napkins . I leave them on for hours I will b back shortly I will get more info for u

Karen1954 profile image
Karen1954 in reply to rozamond

I think I found what u use. R they black with a pink can of something?

As I have said in another reply cyclobenzaprine muscle relaxer is helping me along with pelvic floor physical therapy

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

Karen1954 profile image
Karen1954 in reply to Carolee62

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!!!!!

Barbara9 profile image
Barbara9 in reply to Carolee62

I am not sure either,I have PN ..vaginal,piriformis,I thought rectal pain was inferior rectal now I'm thinking levator ani as burning lump 4 cm up left side rectum.the lyrica doesn't help it so maybe not nerve.i have bowel dysfunction too.all after mesh surgery

Barbara9 profile image
Barbara9 in reply to Barbara9

Also I have sciatica radiating from back of rectum down back legs

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.

Sandra

.

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.

Karen1954 profile image
Karen1954 in reply to Rmoretz

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!!!

Rmoretz profile image
Rmoretz in reply to Karen1954

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.

Hi Karen - I'm sorry to hear of your situation and everyone else that is here reading. I'm new to this board because I have felt like I'm the only one. I suffered a complete levator ani tear during the delivery of baby in 2013. I saw 8 docs before someone agreed that something was wrong. They surgically reattached the muscle in Dec. 2016 and it's helping to provide a bit of support but I am still living with a major disability and chronic pain. I have had Botox, and it didn't help for me.

What helps a bit, and only for a couple of days, is IMS needles to the surrounding muscles that seem to always be super tight. (Glutes, Hamstrings, and around the hip area). I also have a chiropractor that does ART (Active Release Techniques) which can help a bit too.

On top of the pain, the mental aspect for me is the most difficult. I've lost so much. I can't do what I want all the way down to the simple things like picking up my son, or going grocery shopping. :-(

I'd love to hear a success story from someone.

Karen1954 profile image
Karen1954 in reply to Treens

Hi treens!!!! Thank u for your concern. Oh I know a lot about the mental aspect!!! It's hard to get through the day!!!! I wake up everyday with my ibs problem which leads to the levator problem. I have seen five gi, two colorectal, two pelvic floor therapists, nutritionist, dietician, two shrinks, hypnotherapy and have done Botox. My new pelvic floor therapist has given me hope as she does biofeedback and an internal tens unit and balloon manometry that might help with sensations in the rectum along with the levator. I'm soooo sorry to hear about your tear!!!!! That's awful!!!!! What a nightmare!!! I'm just tired of being on meds!!!! I know that doesn't help. Trying to get off of them but in order to get through the day I have to take them. I will always be here for u if u need to talk. I understand it all!!!! I will keep u in my thoughts and prayers. I'm not super religious but believe there is someone listening but obviously not listening enough!!!! I can't deal with this much longer!!! I can't go anywhere for at least four hours after getting up as I need to be near a bathroom and my rectum hurts so bad!!!! I've been walking two miles a day as much as I can even forcing myself to do it!!! Gets the bowels going. I miss being able to work or go and do and especially watch my grandkids. It's almost impossible and it breaks my heart!!!! I feel like a failure in every way!!!!! And to think this all started with neck surgery and a super stressful job!!!! It's been five years of ibs and two years of levator problems. Sorry to rant. I don't have many people in my life that get this!!!! U have to have it to understand!!!! Please stay in touch!!! I look forward to talking to u!!!!!!!

Treens profile image
Treens in reply to Karen1954

Thank you Karen1954. I'm sad there are more people that are struggling with what I deal with everyday. It is nice, however, sometimes to know you are not alone. I was afraid to google for a long time for fear of what I would find about my condition. I finally did the other day and found this board. I think it's a good place. Thank you for keeping me in your thoughts and prayers. You will be with mine too :)

Karen1954 profile image
Karen1954 in reply to Treens

Hi treens!!!! It is nice to know there r other people like us but sad at the same time!!! How r u doing? I saw my new pelvic floor therapist and we did the balloon manometry and I think it's going to help. It stretches out the rectum so u don't feel as much inside. I'm looking forward to my appts for the next four months. I'm still having the ibs problem in the mornings which sucks!!! It lasts about 2-3 hours every morning, sometimes longer. I just don't get it!!!! So discouraging !!!! I pray that at some point it changes!!!! Can't take much more!!! Of course I will keep pushing forward but want to enjoy my kids and grandkids!!!! It breaks my heart when I can't do stuff with them!!!!! Going to see my gi doctor in the morning so hopefully he can give me some insight. I hope things r getting better for u. Please keep me posted on how u r doing!!! I enjoy our talks. Please take care!!!! Talk to u soon!!!

Treens profile image
Treens in reply to Karen1954

Hello - I wanted to share something that has been helping me a little to get through the day and be able to do more before the pain starts. It is using kinesio tape/physio tape. It's that stretchy tape that athletes use on their muscles.

I do two strips of tape, one that extends from just to the right of the the midline of my body and I pull that one up and anchor it on my hip. The second one I do the same but in another direction, so the tape comes from underneith, (near the vagina, but obviously don't stick the tape on any sensitive skin because you will have to rip it off!) This second one comes up and I anchor it on my lower back.

Basically you can try different formations until you find some support in the tape to take the pressure off of your weak, or non existent levator ani muscle. Since I haven't found a brace for this condition I made my own. I will leave my tape on for one or two days and give my skin a rest for a day. Good luck!

kamals profile image
kamals in reply to Treens

Hi Treens, how did you know you had a levator ani tear? What diagnostic test was done or what symptoms correlate to a levator and tear?

Treens profile image
Treens in reply to kamals

Hi Kamals - a doctor diagnosed me with a pelvic exam - he could feel the defect. An MRI revealed a clear picture of a complete tear :( as well as damage to my obturator muscle.

The tear was from the forceps at delivery of my son, however he ended up being delivered by cesarean anyway. Avoidable accident. I have had surgery to sew the muscle back to the mid line of my body and am still recovering so not sure how I will end up. Are you still searching for a diagnosis?

Treens profile image
Treens in reply to kamals

And sorry - as for symptoms :

-extreme pain on the side with the tear

- prolapse of (not sure what) through the defect /hole created by the missing muscle

-pain with bowel movement

-difficulty walking and using the leg on the side of the tear

-sacroiliac pain on the side of the tear

-tightening of other muscles like glutes, hips, hamstrings and other pelvic floor muscles causing pain and mobility issues

kamals profile image
kamals in reply to Treens

Hi Treens, I am sorry you are suffering. I still don't have a clear diagnosis. Colorectal surgeon called it proctalgia fugax, my urologist called it prostatitis, my physio calls it levator ani syndrome and my GP calls it CPPS. I have had three pelvic MRIs done but no mention of the levator ani muscle. I am thinking it's Levator ani syndrome for me because the physio therapy has helped me. My stools are not compressed and narrow as they were when I first started and the pain with bowel movements is gone. Moreover, my MRIs and MRN were negative for pudendal neuralgia. I read about applying castor oil to the area of the levator ani muscle and applying heat afterwards. Have you tried that?

Were your MRIs pelvic? Was there any specific MRI protocol or just a pelvic MRI?

Treens profile image
Treens in reply to kamals

MRI was of the pelvic floor - they showed me the images and even I could see the difference and the tear with an untrained eye. Wow that's confusing to have all of those conflicting opinions. Did you have a baby with forceps involved?

kamals profile image
kamals in reply to Treens

Hi Treens,

I am male so no baby. I had a really tight pelvic floor which was causing the pain. My doctor put me on Cipro for prostatitis. The tight pelvic floor cause constipation.The doctor thought the source of my problem was constipation. He asked me to take fleet it's an oral laxative and it's very strong it's a very harsh laxative. When I took it my pelvic floor muscles went into spasm. They were contracting and expanding and I was in able to move my bowels but I was in severe pain. The pain was so bad I ended up in ER. They didn't do anything they're just gave me more antibiotics and sent me on my way and I remembered that specific event that night with the laxative as the source of most of my problems to this day. If something happened to my levator ani muscles, it would've been that night. That's why I'm suspecting a tear or something. that being said, nobody has commented on those muscles in any of the MRIs. I'm assuming they would've seen that. Mind you first MRI wasn't until five months after the incident. So if there was a tear, it would've healed or there would be scar tissue.Will be hard to detect any tears. Don't you think?

Ella327 profile image
Ella327 in reply to Treens

Hi there. Not sure if you will get this, but I hope so! I also have a levator ani tear after giving birth. Would you mind sharing what procedure they used to reattach the muscle? Also can you share doctor's name? Thank you!!

Treens profile image
Treens in reply to Ella327

Hi Ella - I saw Dr Birch at the foothills hospital in Calgary Alberta. If you are in the states there is definitely somebody who can do this procedure . Scroll down I just did a post a few minutes ago with an update on a bunch of things that I've tried lately and my status. Give that a read and feel free to reply with any questions. Inbox as well if you want and I am more than happy to share anything that I can. This is hard- you probably feel like you're the only one. I'm really sorry that you are going through this .

Maybe! I don't know if scar tissue is visible on an MRI. Mine was a complete tear so there was no healing that occurred so they could clearly see it. I go for Active Release from a chiropractor if you can find one who does that (ART). IMS needles help to relieve the other muscles that tighten as a result of compensating for the torn muscle...that is now reattached partially, but it's nothing more than a support as it no longer 'works' like a normal muscle.

I learned about two other things. One is called Z-Health. joelcsco@gmail.com is a practitioner who will work with you on skype out of the USA for pain management coming from any source in your body. He seems to be aware of pelvic pain when I spoke with him.

Another is MAT (Muscle Activation Technique). I have not tried it yet but plan to. This helps activate muscle firing patterns. Can help with pain, and strengthening in different areas.

Keep looking! Keep trying new things :-)

I too suffer from this. And, the rectal spasms are non stop every hour. I'm at my wits end. Don't know where or what to do. I need help and do not know where to go.

Karen1954 profile image
Karen1954 in reply to bswalley45

Hi bswalley45. Doesn't it just suck!!!! I have tried everything from drugs to acupuncture to trigger point injections and Botox to pelvic therapy which seems to help some. Having ibs with this makes it even worse!!! Stress seems to play a big portion of this. When I stress my muscles really spasm. I use a heating pad all the time!!!! Right now I use chlorzoxaxone and Valium and methocarbamol and gabapentin as now my nerves r involved!!!! Have u tried and meds or pelvic therapy? It really helps. My uro-gyne has been doing trigger point injections into the puborectalis muscle and levator musckes. Mine has been going on three years and I hate it!!!!! It hits especially in the morning after I get up!!!!! What have u tried! I know how hard this problem is and I'm here if u need to talk. It's nice to talk to people who know what u r going through. Most people don't understand this!!!!! Alls I know is that I hate it!!! Keep in touch!!!!

Hi, I had hemerrhoid banding last year, June, ever since then the rectal pain started, really bad in September. I am chronically constipated and use MagO7, or Ortho molecular Super Cape Aloe 450mg. I prefer the cape aloe, as it makes a formed bm. The MagO7 definitely works, however do hard to pinpoint correct dosage. My pain became debilitating, and I consider myself disabled. The thing that has saved my life, and needing no pain pills in my tens 7000, I put a patch on either side of my back hole, and it actually removes the pain. I am now seeing a very good pelvic floor therapist, (saw one prior to her who found nothing wrong, be careful and ask how long, and who their mentors are) I also just purchased a therawand, which I learned to use myself by a very good utube video by Karl Monahan, UK. Once she did her pressure, which. Mine was 1, 5, 7, 11o'clock (Karl Monahan video)...it hurts I am to do this daily with my wand, along with a tens probe inserted in rectum right after wand for 1/2hr. I then take hot daily bath with magnesium. After bath a stretching routine. I at this point am in real pain, I apply the tens patches...in a few am better. Since seeing the therapist my rectum is sore, but a different kind of pain. All I can say is this is the most horrible thing I have ever been through! Thank God for the tens unit...Ya'all must get one...I bought another just in case this breaks! It is a genuine life saver. Thank God I am retired! And for my husband and son! Tens 7000- 34$ cheap-that is with shipping. Buy extra patches. If all this does not work then I go in for the injection therapy, via my 2nd colorectal surgeon @ Loma Linda University Hospital. I hope I helped someone....this is just unbelievable, I have no life!Can not even go see my son perform, no friends ever call ...they just do not get it, this is very hard...keeping up my morale and doing my routine everyday I just pray it is getting better? It hurts real bad...I guess I have to keep going to the therapist and keep a positive tude!

My best to all of you! My email is, c.fether@yahoo.com

Tim3 profile image
Tim3 in reply to olivedog

I've seen Karl in the UK. How are you doing? I'm trying botox in the next week or two

I have these symptoms. It’s been years since some have posted. Anyone with new advice or tips?

Tim3 profile image
Tim3 in reply to Petessake

I'm trying botox in a week or 2

kalecolbe12 profile image
kalecolbe12 in reply to Tim3

Can you let us know if the botox works for you Tim

How are you doing? I have the same. People can’t understand the pain because they don’t understand. Would love to keep in touch

Hi Cheryl! Yep!!! No one understands unless they have it. Mine also coincides with ibs and bowel movements. It burns sooooooo bad that I just cry!!!!! I sit on a heating pad a lot as that seems to be the most effective!!!!! As I have stated I have tried everything!!!! My pain doc is wonderful!!! We have tried so many types of injections and the only one that would work is an epidural like when u r giving birth which they can't do cuz u couldn't walk!!! I'm pretty much out of options now!!! If I could wake up and have a normal bowel movement it would be great but that never happens!!! It's all through the day sometimes!!!! I can't enjoy life to the fullest cause I'm in pain or my ass is on fire!!!! What r your symptoms? How did yours start? I'd love to keep in touch!!!!

Hi,

51 year old Male here suffering for 7.5 years with terrible bowel and urinary issues. Extreme difficulty with bowel movements, extremely painful urination, hesitancy, urgency. Thanks for sharing. You are not alone. I've tried all the drugs. Had infusions, targeted injections, external and the lovely internal pt, hypnotherapy, acupuncture, meditation...

Trying botox in the next week or so. Then neuromodulation if that doesn't help. It took years to get a proper diagnosis only via my own research! Why is the medical community so uninformed about this!!!

kalecolbe12 profile image
kalecolbe12 in reply to Tim3

Hi Tim did the Botox work and or the neuromodulation?

Hello everyone, it nice to find this post. I’m so sad reading all the post but in a way it’s comforting to know I’m not alone. I have been dealing with Levator Ani for a long time. I’ve lost jobs due to it. I now have a job I’ve worked hard for but the pain comes all the time.. now I’m so close to losing my job. I’m a Single parent and begging my doctors to sign the disability papers or even fmla but they are refusing. They know I have been in and out of hospitals..does anyone have any advise? It’s bad enough dealing with this everyday. But I can’t afford to loose another job due to my illness.. I feel like I’m drowning with no one to throw me a line. Has anyone had their doctors sign any papers?

Hi!!! U need to speak with someone at disability. I'm on permanent disability and I think one of the reasons besides my health issues is I wrote a letter explaining why I can't work!!! Lay it on the line. My levator is in association with my ibs!!! It sucks!!! They like personal letters so they can basically put themselves in your shoes!! My disability attorney suggested the letter and I got on disability my first try but went through an attorney. This disease is awful!!!!! I'm so sorry u r dealing with this!!! I hate it!!! It's a waste of hardworking people's lives!!!! I would love to work or even volunteer but this stuff is so unbending!!! U never know when it's going to hit!!! My mornings r hell!!! Still after 7 years!!!! Please keep me posted!! I enjoy talking to people but some don't keep in touch!!! Talk to u soon I hope!!!

I completely understand what your going through, this has been a nightmare, I suggest when you lay down , put your rear end on a heating pad, I actually get some relief from pelvic floor therapy, but it only lasts an hour, been to the hospital 30 times over this , I want my life back just like you .

Hi yankiejoe!! Yeah it's the shits to have this crap!!! What do they do when u go to the hospital? I sit on a heating pad almost all day and I'm sick of it!! I'm so depressed right now. Rectal pain is the worst!! No one understands how we feel. I tried pelvic exercises but didn't do much! I've been to every person possible and here I sit with this awful pain!!! What is your pain like? I'm so sorry u r dealing with this too!!! Please take care and we'll talk soon!!! I hope u keep in touch!

Karen I tried Botox, it didn’t work but I also had surgery around the same time, I recently got some relief from Lyrica , which is a nerve medicine, I can’t live my life like this too

I am 85 years old I am married 68 years to the same guy yes I place them on outside of rectum and it is the only thing that gives me a little I repeat a little relief in the middle of the night there I am at the freezer door can't get the ice fast enough by the way I live in fl

Karen1954 profile image
Karen1954 in reply to rozamond

I don't want this when I'm 85!!! Lol. Congrats on being married 68 years!!! Just awesome!!! I can't believe u go through this!!!! My husband is hanging beside me through all of this!!! I've been married 37 years!!! I admire u for all u have had to endure. How did your rectal problem start? I don't like anyone suffering but especially older people!! I saw my mom suffer with her disease and it broke my heart!!! I'm still having problems with her being gone!!! I pray to god I live as long as u or my mom who was 92 when she passed. I'm going to try the sleeves!!! Hope I found the right ones. They r $34.99 like u said so these must be them.

rozamond profile image
rozamond in reply to Karen1954

correct name of ice product is TENDHER ice packs for pain relief sold by PARIDAY LLc

correct name of product Tendher ice packs for pain relief Pariday llc 39.99$

Hello, I’m new to this group but I was reading through your chat and literally am crying as I write this because I ask myself all the time will I ever be normal again it’s been 2 years June 2019 is when I was diagnosed with levator ani syndrome. I spend most of my day in the bathroom I can’t work I’m in the process of looking into state disability because my employer can no longer accommodate my modified work HRs of 5 a day. It’s been a nightmare that I cant get out it’s taken a toll on my over all well being I’m not the same person I was 2 years ago and it really sucks. But it’s nice to know I’m not alone.

Hi!!!! I’m SO very sorry I have this problem too!!! It’s AWFUL!!! Is yours constant? Mine starts from the time I stand up in the morning until I go to bed!!! Mine started from a rectal exam gone wrong and it’s been hell ever since!!! It seemed to go away right before my hysterectomy and came back after!!!! I’m wondering if he sutured my mesh near that area!!! I’ve had numerous txs. Too many to explain!!!!! It’s ridiculous and everything I’ve paid out of pocket is crazy!!!! My pelvic pain has been SO bad after bowel movements!!! I was diagnosed with out of control nerves which again I have tried SO many txs!!!! I’m still trying txs as my pain doctor thinks he can help and said he won’t give up!!!! He’s the most wonderful doctor I’ve ever had!!! My only other option is a diverting colostomy which I don’t want but if I’m out of pain I guess it would be worth it!!! I don’t know!!! Keep trying with disability! When I applied I also wrote a letter stating how my daily life is affected!!! I also have ibs which makes things worse!!!! I’m back to working with my pelvic floor therapist!! I’m sure it helps but there’s not much change!!!! How r your days? Symptoms? Treatments? I’d be really interested in seeing how your life is! If I had had this when I was raising my kids it would have been awful but even at my age it still sucks!!! It’s ruining my life!!! I can’t live life to the fullest and people don’t understand pelvic and severe rectal pain!!!! No one has a clue how excruciating this is!!!! I hope u can find a therapist or a nice doctor who can help u! Some think it’s all in our heads!!! That’s bullshit!!!! It’s in my ass u moron!!!! Anyway I’m looking forward to hearing from u!!! Thank u for reaching out!!! Do take care!!!!

Omgggg Karen! It’s such a relief to hear I can’t begin to tell you how many ER docs look at me like I’m crazy… F no I’m not crazy they just don’t listen and only want to put me in a general box with my symptoms constipation, “oh take some stool softener and eat more fiber” that should fix the problem. (As I roll my eyes) I’ve tried Botox, meds Linzess was the most recent, I started biofeedback therapy but stopped nothing helps my muscles are so tight the colorectal dr says I hold all my stress in my ass I’m 43 thankfully My daughters are older because I would not have been able to raise them my life is non existent I rarely leave the house because my body goes literally the motions of labor where I’m trying to expel stool but my muscles won’t relax so I get backed up to now I know when I’m backed up my back starts hurting I get bloated can’t pass gas, after about 2 days of that I finally can expel bits at a time then I have diarrhea for couple days until I repeat the cycle every single day I never have just a normal day I’m constantly having pressure on my rectum not to mention the internal and external hemorrhoids that this condition has brought on. I can no longer have a sex life, Which has brought me to a depressed state of mind the sex and not being able to work, just over all quality of my life has put me in this place. I have not taken any anti depressants I just feel it would do more harm to my mental state I’ve for the most part been strong minded but the last 2 yrs not so strong. But I’m hanging on hoping praying for my body to remember how to function at least that’s what the doctors say I have to retrain my pelvic floor muscles how to function.

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