Levator ani and ibs

[Karen1954]

Haven't written in awhile but my pain and symptoms r getting worse!!! My ibs wakes me up every morning with churning of the stomach. Once I get up the pressure in my rectum goes crazy!!!!!! Sometimes I have a bm and other times I have to manually evacuate!!!! Then there is more pressure near the internal anal sphincter and it is excruciating!!!!! I am on five norco a day along with chlorzoxozone and methocarbamol and sometimes that doesn't even touch the pain. Found out I had anismus where my muscles for a bm don't work. Had Botox three months ago and nothing!!!!!! Like I mentioned before have seen five gi, colorectal, nutritionist which destroyed me , acupuncture, dietician, pelvic floor therapist and three shrinks. Going to see a new colorectal and going to have rectal manometry. Also seeing another pelvic floor therapist. I can't take much more between the two. If I take miralax or milk of magnesia my rectum burns like crazy!!!!!!! It hurts so bad!!!! If I wasn't on the norco I wouldn't have constipation but the butt pain is sooo bad I can't get off!!!! Vicious cycle!!!! Have tried every over the counter laxatives and softeners and have been on linzess for three years!!! I also have degenerative disk disease throughout my entire spine. My one doctor thinks my lower back is so messed up after looking at the MRI that it could be affecting my rectal problems. I just have no idea what to do anymore!!!!! I can't live like this!!!! I can't do anything but sit on my heating pad. I have to help my mom as she is 91 but that too is hard considering all the pain I feel. I can't enjoy my grandkids either. I do nothing and hate it!!!!!! The burning and pain is slowly killing me!!!! All of this after working at a very stressful job almost five years ago where I was fired after being off a week with constipation and testing!!!!! This is insane that stress caused all this!!!! Have no idea what to do anymore!!!!!! Depressed and sad!!!! Not a good way to live!!! Mornings r hell as that is when it's the worst!!!! I'm glad I wake up but not to what lies ahead for the day!!!! Found a new gi that seems to care and heard the new colorectal is good too!! We will see. Oh. Tried dr schulzes intestinal formula #1 and it destroyed me!!!!!! Anyway thanks for listening!!!!

[anne77]

WOW, I can relate to all of this! Have you had an MRI Defecography? It was determined that I have a moderately prolapsed rectocele. I am still trying to figure out whether the rectocele surgery would be beneficial to me or not? ! I go through the same thing as you do every morning, and by the end of the afternoon, the pain is unbearable and I survive by sitting on a heating pad! The GI told me to take fiber supplements & use miralax as well, but it has created a vicious cycle for me as well! I also tried Linzess, but it made me have horrible diarreah/burning. Another Urogynecologist recommended Phillips tablets (Magnesium), but I read where that is really irritating to the colon! I don't know who to believe, or what to try next either I am at least thankful that I am not in pain when I go completely horizontal and go to sleep. I had botox injections ( 2 in the rectum) in early Dec. at the Cleveland Clinic with a Neurologist. I think it actually made things worse! I also had pelvic floor therapy for 3 months along with "dry needling" and stim treatments (didn't help). I am not taking anything except using suppositories prescribed by a urologist made up of: Gabapentin, Amitriptyline, Benzocaine and Diazepam. It definitely takes the edge off, but they knock me out! NO quality of life there!! I feel for you with having to care for a 91 year old mother along at this horrible time in your life My mom had Alzheimer's when my kids were young, and I thought that was bad! What state do you live in? I am in SC and there are not very many specialists nearby. I thought I had Levator Syndrome, but now my symptoms seem more in line with Pudendal Neuralgia. I feel for you, and hope that we can continue to share what is going on in our journey. What narco are you taking?? Good luck & keep posting

[Karen1954 in reply to anne77]

Hi Anne!! Aren't we a pair!!!! I tried magnesium and it really made things worse!!! Burning was unbearable. I take 10-325 norco and chlorzoxozone and methocarbamol and diazepam. Sometimes I take baclofen too. Used diazepam and cortisone suppositories but now take lidocaine and baclofen ones. Doesn't help much. I had a regular defacography about a year and a half ago and they said it was normal!!!! How in the hell can it be normal when I can't poop regularly!!!! Hoping the manometry might show something or will push for the MRI or anal ultrasound. I'm glad I didn't have this until I was older cuz my kids wouldn't have been taken care of very well. I feel for the younger people who have this shit!!! Nobody understands what we go through every day!!!! I hate that my butt burns everyday or the pelvic floor hurts everyday!!!!! These roller coasters we r on suck!!! R u going to have the surgery? They thought I might have one but the defacography as I said was normal. What part of the rectum did u have Botox? I know mine seemed to get worse too. I was counting on it working!!! Do u work? I'm lucky I got on permanent disability!!!! There is no way I could work!!! U and I don't have a life!!!! I hate it!!!! Do u have any fun? Like what's your life like? I live in California. I really hope u will stay in touch cuz I'm sure my family is tired of me complaining. My mom just ignores me now which hurts my feelings. My daughter and close friend listen and sometimes my husband but that's about it. I'm even tired of it but it helps to talk about it. My shrink listens but she has to!!! Lol. No she's really a very caring person and she helps with imagery to make me relax. So please keep in touch and we can support each other as there r so many times I feel alone and just break down and cry. I keep praying that god will help but he's not listening. I'm not super religious but I believe in god and keep hoping that one day he will just get rid of this butt pain. U and I deserve a good life!!!! Stay in touch Anne!!!!!!! Great sharing with u!!!!!! I'll always be here for u!!!!!!

[anne77 in reply to Karen1954]

It sure does sound like it! I live in South Carolina and I was hoping to see a specialist in Phoenix, AZ, but as of 2017 my insurance (and every other insurance company I researched) do not allow you to get treatment in other states unless it is an emergency. I am so discouraged, because my sister lives there, and if it was determined that I need surgery, she would help me. I am still searching for good specialists here in South Carolina. I will keep you informed. I also try my best not to constantly complain to family and friends about what pain I am in, but it really is hard to put a smile on my face when the pain is si intense and relentless! I find myself breaking down when I am alone a lot more lately. This certainly is no quality of life I do not work, but I try to keep my mind as busy as possible reading, "binging" on Netflix, little projects around the house etc.. I enjoy walking on a really pretty trail that runs through downtown Greenville, but then I pay for it later! I am almost 2 years into this pain, and it all started when I bought a bike. Initially I thought it caused an internal hemorrhoid, but after several tests, scans and doctor's appointments (which ruled everything else out) it was diagnosed as "Levator Syndrome". As time goes on, I am having just as much pain in the vaginal area and have the urgency to urinate (wnd burning) all of the time, pressure in the pelvis etc.. I went in 2x now thinking I had a urinary tract infection (very similar symptoms), but the tests were negative. As I have been researching on the computer, that's why I believe that I really have Pudenda Neuralgia, so many symptoms overlap and even specialists have a hard time diagnosing it. This doctor in AZ (Dr. Michael Hibner) has written a couple of really good articles about it. One thing that I've read is that Lyrica (Pregabilin) is something that they prescribe--have you ever tried that? I am going to call my doctor today to ask about this. I do try to listen to music, do my belly breathing and stretches that my physical therapist recommended. As you said, nothing really helps all that much, but I will try anything! Let's definitely keep in touch, Karen!! I will be praying for you too

[Karen1954 in reply to anne77]

Hi Anne!!!! Yeah I break down a lot too!!! I use to be a very productive person but now feel like a slug. It's sooo hard to do stuff when u don't feel good or r in pain!!!! Like I said no one understands this unless they have it!!! Mine I think started with a rectal exam with a scope. Kinda felt a pop and from that point on the headache in the butt started. Have tried bentyl and flexeril and Valium and baclofen but u aren't suppose to take Valium if u use an opiate even though it works the best. I had three neck surgeries in 2009 and 2010 and that's when I started the norco. I have tried lyrica and it knocked me out!!!! I just want to be normal!!!! I want to be able to watch my grandkids but that doesn't happen cuz I'm uncomfortable or in pain and three under the age of 5 is hard to handle. I'd love to watch my 5 year old granddaughter when she has days off but I can't!!!! Mornings r hell as I've told u. I'm sorry to hear about your vagjnal and burning. That's awful too!! God in both areas!!!! That sucks!!! I also listen to music and do my exercises but I'd really like to join a gym but I never know when I can go if ever. It's just hard to live like this!!! I don't know how it got this bad!!!! I saw a nutritionist who put me on supplements and one of those did me in!!!! I had diarrhea for six hours!!!!! Cleaned me out needless to say!!!!! Never been the same!!!! I know people say god can't give u what u can't take but I can't take this!!!!!! Everyday is a struggle!!!! I'm glad u r able to walk on the trails. It sounds perfect!!!!!! I guess we will have to keep each other strong!!!! I sound like Debbie downer but I'm so tired of this!!!! Just want a sense of normalcy or a good day here and there which I don't get. I try to stay positive but it's hard!!!! I've read about mindfulness and have tried that but not much help. I've read books and articles and gone on the web for everything. Just lost!!!! Waiting for the balloon manometry and asking about an anal ultrasound. Something has to change for both of us!!!! And soon!!!! I will keep u in my prayers and I'm so thankful for u listening and being there!!! I will talk to u soon!!!!

[Susan1-2]

After researching and reading so many posts I started to wonder what has caused all the painful symptoms with people. Is it really stress or is it the food and what's in the food. Pesticides, GMO's, and more. Have you thought about anal stenosis or stricture? You can order a pediatric dialator on line. The physiotherapists use these after surgery. Similar to a vaginal dialator. Then maybe after using this a couple times a day and eating plenty of fiber the area will start to relax and not spasm. I am not a doctor but listen to your body. What is your body telling you to do.

[Karen1954 in reply to Susan1-2]

Hi Susan!!!! Thanks for the info on anal stenosis!!! I read up on it and sounds familiar. I called my colorectal doctor and am asking about that along with an anal ultrasound. I try to eat healthy and drink lots of water. The only stress I have is not feeling well!!! I use to be productive and active but now it's hard to do when u don't feel good or need to be near a bathroom. What would the dilator do? I just found out that an associate in my colorectal office does the anal manometry and he never told me that. Been seeing him for two years!!!! Kinda upset about that!!! Also had asked about Botox and he said he didn't know anyone but when I saw the doc who does it he said he did work with my doctor!!!!! Frustrating as hell!!! Oh well. Trying to stay on top of this!!! Thank u so much for that info. I really appreciate it!!!! I know my body really well but any new info is always appreciated!!!!

[anne77 in reply to Susan1-2]

My Gastrointerologist told me to take Benefiber. After actually feeling even worse after a bm, I finally googled Benefiber and it is Wheat Dextrin! I obviously have an intolerance of wheat (as do my 2 sisters). The point is be careful of over the counter fibers, meds etc. even if your doctor recommends it! I also believe stress is a huge factor!

[Karen1954 in reply to anne77]

Hi Anne!!! Yeah I take benefiber and thankfully have no problems. I've gone dairy and gluten free with no change. I did try dulcogas and gas x as I thought that was why I had a problem in the morning. They made everything worse!!! This last week I started walking and it has helped me with my ibs!!!!! Even when I'm in pelvic pain I force myself to go walk!!! I'm walking about 1 1/2 miles a day so far!!! What a novel concept!!!! Lol. I see my new pelvic floor therapist this week and hope they do the manometry soon. My problem is that I can feel stool in my rectum which irritates me and when I use an enema or manually evacuate it makes the pelvic floor pain worse. I also have a lot of burning so I don't know if my stool is acidic or my rectum sensitive!!!!! I read a great article from a Jessica or Jennifer rose from another pain website. She talked about chronic pain and what to do in your life. I'll try and find it. So eye opening and so true!!! I do think of the positive in my life and know other people have it worse but pelvic pain sucks!! So does ibs!!!! I see my new colorectal next week!!! I'm tired of mornings being so bad!!! Just don't understand!! Takes me about three hours to feel ok!!! Would like to be able to get up and go!!! Can't do that!!! My stomach and bowels don't allow that!!!! I hope u find something that can help u and not the benefiber. Not sure what else u can try but I wish u good luck!!! I hope things will get better for u!!! I think about u often as I know what u r going through!!!! Please keep in touch!!! I really enjoy our talks!!!! My thoughts and prayers r with u!!!!

[anne77 in reply to Karen1954]

Keep me posted as to how your visits go with the PF therapist and the colorectal doctor goes. I could be wrong, but I believe wheat is gluten. I was having similar bowel issues that you describe, but it actually has improved since I quit taking benefiber (wheat dextrin). I try to force myself to walk as well, and it does seem to help! Good luck this week

[Karen1954 in reply to anne77]

Hi Anne!!!! Yeah wheat is gluten. I seem to be ok with it. I know u said u walk the trails!!! Must be so nice!!!! We have a lot here too but kinda far away but I listen to my favorite songs and walk a circle in my neighborhood which is just fine with me. Joined a gym in case I can't walk outside and my health ins pays for it so no money out of my pocket. Just easier to walk out my door and go!!!! I will definitely let u know how the appointments go!!! Hoping something good comes out of them. Had a pretty good morning but had to manually evacuate a little but it was ok. Hoping that can stop!!! I just can't poop out small pieces of stool!!! Once that changes I'll be sooo much better. I hope that happens soon!!!! So I hope u have a great week and I'll keep u in my thoughts and prayers!!!! Keep walking my friend!!!!! I am!!!!!

[Karen1954]

Hi Anne!!! Saw my new pelvic floor therapist and she has given me hope!!!! Am now doing biofeedback and a rectal tens unit and starting balloon manometry the next time which is suppose to help with sensitivity inside the rectum!!!! I'm sooooo tired of the burning and pain!!!! She told me that she has had several patients like me where it took 3-4 hours in the morning before being able to go out and she helped them. One lady can go out after just 20 minutes!!!!! God I wish!!!! I'm soooo tired of the mornings!!!!!! Pain and severe burning everyday!!!!! It gets so old!!!!!! Tried to explain that to my mom hoping she will understand!!!! So anyway hoping this new tx will help!!!! Seeing my new colorectal in two days!!!! Hoping maybe he can help too or think what my therapist is going to do is enough!!!! Still walking everyday which seems to help!!!! I read that baking soda and lemon and water help with the gassy feeling in the morning!!!! I tried it last night and seemed to help so u might want to try it. Did it again this morning and it was too much!!!! Don't do it!!!! I hope things r getting better for u!!! Can't wait to hear from u!!! Please take care and I'll talk to u soon!!!!

[Karen1954 in reply to Karen1954]

Hi Anne!!!! Hope all is going better for u!!! Have missed u!!!! I'm having an awful day!!!!! Actually had an awful week!!! Saw new colorectal two weeks ago and was not impressed!!! He addressed the burning but not the levator problem. Said I have redundant tissue in my rectum but will check it next time. This last week I had the stomach flu soooo bad I had diarrhea for 8 hours!!!! Then the pelvic pain hit too!!!! Of course it did!!!!!! Seems to be getting worse!!!!! Haven't been able to walk for 9 days!!!! I don't know how much more I can take!!!!!! I know I'm strong but I don't understand why god is doing this to me!!!! I feel so unproductive and useless and can't watch my grandkids or basically do anything!!!! Today I feel like something is going to fall out my butt!!!!! Want to get off my meds but can't!!!! It's a vicious cycle that's killing me!!!!! I want to go back and work and do fun things or take my mom to lunch!!!! I do nothing!!!!! I know others have it worse but I feel so lost!!! My therapist is helping and I do imagery and relaxation techniques but this is insane!!!! The ibs is still there but after I have a bm the levator kicks in and sometimes on overdrive!!!!!! I see the new pelvic floor therapist again this week and can't wait!!!!!! God she has to help!!!!!! Otherwise I don't know what to do!!!!! Please keep me in your prayers and u definitely r in mine!!! Let me know how u r!!! I just needed someone to talk to and thought of u!!! Thank u!!!!