Hopeless: I'm going to try to type... - Pelvic Pain Suppo...

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Hopeless

Kathcat64
Kathcat64
45 Replies

I'm going to try to type through all these tears. I stumbled upon this site by accident. After 2 years of the most horrible Anil pain and seeing 6 different Dr I was j7st diagnosed with Levitor Ani Syndrome. I have been treated for fissure and this Dr says it's this. Every single morning when I open my eyes, I just want to scream NO NOT ANOTHER DAY. This Dr put me on a muscle relaxer, but been 4 days and no relief. The pain is unbearable. I feel so hopeless and worthless. I am 64 and went from an active happy woman to a woman who cries every single day and barely gets out of bed. I've felt so very alone and that nobody listening to me. I am not a goid wife, mother, grandma, friend, I have nothing to give. Mornings are terrible, simply terrible.

45 Replies
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kalecolbe12

Okay so I got diagnosed with levator ani the colorectal doc said that it was a fissure and I was sitting waiting to get the sphincterotomy and I just decided it was wrong so I walked out of the hospital.... Made an appointment with a physical pelvic floor physical therapist got headache in the pelvis and healing pelvic pain books read them doing the stretching and breathing from those and the pelvic drops.. took the muscle relaxer a few weeks to work for me and it did work really helped went to a pain doctor got some rectal suppositories made from me which are lidocaine and Valium and also on oral muscle relaxants if I need them so it's about 20% of this 15% of that 30% of the other but it will reverse you have to really be proactive if it's pudendal nerve which can happen then my physical therapist does pudendal nerve glides which releases the pudendal nerve which causes a lot of pain if you don't release it and you may need an MRN which is a nerve MRI so you may need a neurologist too.. X-rays and regular MRIs don't show anything as I've learned.... Maybe we can help get you on the right track so where do you live?

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Kathcat64

I live in Washington State. TY for replying, have felt so very alone. Friends no longer call or stop by, busy going on vacations and enjoying life. It's a distant memory to me. This Dr said Botox injections next step , but from what I've read I don't think injecting that into me will help. I'm afraid it will only bring more pain. Where I live they frown or jyst plain won't prescribe pain pills. I eat Tylenol and ibruprofin like candy, does nothing. Heating pad my only friend. My poor husband, he's lost 30 lbs due to a wife who no longer cooks. I don't know what I'd do without him. We be married 40 years in November, we were going to take an Alaskan Cruise, but that's not going to happen. Today was just a really bad day, I long for my old life.

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kalecolbe12

Actually Botox has a really good chance of working I think it's worth a shot I'm definitely going to try it if the things I'm doing now don't work.... I'm speaking to several people on this site that it has the Botox and it's working for them I feel like you just giving up and you need some support right now.... Please read a headache in the pelvis and do what they tell you in there because you can get it from your library I'm sure it won't cost you anything I got mine from my library and you may be also to try the DCT the David McCoid on you tube They all will speak to you on Skype if you want to speak to them.... I am 65 and I'm going through this so if I can do it I know you can do it

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Kathcat64

Thank you so very much for taking the time to talk to me. Yes I've so felt like giving up. I love my family so much, if it were not the fact that leaving them would cause them so much pain, I would leave today. My mind has gone to such dark places due to this endless pain and lack of sleep. I don't think you know what your kindness has done for me. I will go to library and see if I can find this book. I'm 64, retired and had dreams of traveling with my husband. Our Motor home hasn't left driveway in 2 years. Thank you for your kindness and understanding to a stranger, bless you♡♡

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kalecolbe12

Of course ...I am off to work now but let's stay in touch...you can reach out anytime you need to...I have honestly gone from emergency room pain and dark thoughts to feeling quite functional now

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Kathcat64

You have given me light in this darkness. When you said off to work, I thought OH my she can work. The hardest part besides endless pain is Doctors who spend 5 minutes with you and you can see in face THEY DONT GET IT and THEY DONT GET ME. Unfortunately I get very emotional when I try to explain my symptoms. Treated for a fissure for 9 months and I knew it couldn't be a fissure because the pain up inside rectum and the creams were for external use. They would just refer me on to get rid of me. This Dr I believe has diagnosed me correctly, but when I begged for pain relief he said ibruprofin and these muscle relaxers. So I am now on a mission to educate myself in every aspect if this syndrome. I Thank God for this site and for people like you. Thank you

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Kathcat64
Kathcat64
in reply to Kathcat64

Did you try the Botox injections and did they work for you if you did.

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SunflowerGypsy1

Oh girl I am so very sorry to read this. Let's start with how did all this come on? So, maybe we all can guide you!❤

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Skye22

I so feel your pain!!!! I was diagnosed with levator-ani 4yrs ago after a haemmorage from mybowel. It is the worst pain in vagina round to my rectum and down my legs. My pelvic floor goes into horrendous spasms lasting weeks, I can't wee or poo properly, I can't sit on my bottom and as you say you open your eyes in the morning and you know it's going to be a bad day.

Up until 4yrs ago I was in my dream job, had a fairly active life going on holidays and days out with my friends I'm only in my early 50's!!!!

HOWEVER!!!!! DON'T DESPAIR!!

Kalecolbe gives sound advice. First hurdle find a medical professional who will listen!!! Step 1- you need a specialist physio who is trained to do trigger point therapy which involves the physio finding the trigger points in vagina which are in spasm and pressing on them to try to release spasms. For me it definitely gives relief and lessens the intensity of pain (lasts a couple of wks), it doesn't take it away but it's at a level where you can try to do the things you want to.

At present trying botox into pubirectalis muscle again lessens intensity of pain (lasts about 3 mths), I was so excited to be able to sit on my bottom!! Step2- BEING REALISTIC- my consultants were very honest (have multiple health issues) with me and informed me that there is no cure and condition management is key. Reading a lot of posts on this forum it's getting the right treatment, therapies and medication that will WORK FOR YOU!!! It does involve tears and tantrums and trying lots of things before you get to the point of managing your condition!!!

STEP 3- DETERMINATION!!!!! Don't give up!! You can and will find a way through this!!! Instead of me saying that's it I can't do "that", I find a way of adapting things Eg; instead of a 2hr lunch go out for coffee. I have to take my doughnut cushion every where I go so I can sit in reasonable comfort, I plan my route out depending on where toilets are, I order a child's meal cause I can't eat much and try taking an extra painkiller when you are going out.

Being on this forum has definitely helped me because I am no longer on my own!! People understand and just "get you".

Sorry for the long post, I so hope you find what works for you and we are all here cheering you on!!! Wish you good health and we are all only a txt away!!!

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Kathcat64
Kathcat64
in reply to Skye22

Your post was wonderful and I Thank you. If I can get one kernel that will help, I'll certainly try. Went through phone book today looking for Physical Therapist who specializes in Pelvic Disorders and MUST be a woman. Didn't find one, but tomorrow a new day and many more numbers to call. I didn't cry today, still hurt but I didn't cry today. That's huge for me. For the first time in 2 years I didn't feel alone.♡♡♡♡♡♡

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Skye22
Skye22
in reply to Kathcat64

Stay strong kathcat we are all in this together we laugh, we cry, we CONQUER!!!!!☺

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peters1

Good morning and thank God for the beautiful people who have responded to you. Kegal exercises may as well help the rectal spasms, along with bridge exercises.

i am on a combination of gabapentin/Cymbalta and when it was really bad a tramadol that when taken with the other two meds offered much relief. I use a squatty potty when i need a bowel movement and it works excellently. My biggest relief has been the grace of God who gives wisdom and understanding as well will place in your life those who love Him as well and will help you. My prayer is that you will feel the manifestation of God's grace and mercy on your life. I speak healing and life to you. That motor home will be on the road soon and you will have a testimony to share, using your suffering as medicine for others. God bless you

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Kathcat64
Kathcat64
in reply to peters1

I've written those medications down and have appointment with Dr end of month. Knowledge is power and instead of crying I'm going to ask about these medications, can we try to see if they give me some pain relief. I had never heard if Levitor Ani Syndrome as I thought I was dealing with a fissure. I Thank you so very much♡♡♡

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Karen1954

Hi Kathcat64. I understand completely as I'm in the exact same boat! No one and I mean no one understands the pain we feel. It's every damn day!!! Nothing works!!! I too don't feel like I'm a good wife or mother or grandma!!! I miss being that person!!! Most levator ani is stress induced!!! I know when I'm stressed it flares. Have tried everything under the sun! I had a fissure for five months and just had LIS sx!!! It sucks!!! Next Friday I am having a hysterectomy plus meshes and bladder and rectum lifts. I don't understand any of this!!! I use to workout and garden and meet a couple friends for lunch but no more!!! This is an awful problem!! I have seen every doctor under the sun!!! Tried everything there is! Try doing pelvic floor exercises or walking if u can. I know it's hard but just do your best. I take 2mg of Valium at night and chlorzoxazone 3x a day which helps. U might want to see a uro-gyne and see what they say. They can do trigger point injections for the levator ani problem or try a therawand over the muscle. It helps! I know it helps to talk to people who understand and I do!!! I'm 64 soon to be 65! I'm here whenever u need to talk ! I get it cuz I'm u!!! Hugs to u!!

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Kathcat64
Kathcat64
in reply to Karen1954

Do you know how it feels to know you are not alone♡ I can't explain it but today I did not cry, I still hurt, but refused to cry, I didn't feel alone. I got out of my sweat pants for 2 hours hours and put something pretty on. I picked up the phone and called a friend who long ago quit calling me. She wasn't home but I left her a message and told her I loved her. I'm going to educate myself in this horrible syndrome so I know the right questions to ask and the medications that perhaps could help me. For some reason and it could just be today, I don't feel hopeless. Bless you Karen and THANK you♡♡

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Karen1954
Karen1954
in reply to Kathcat64

Hi!!! I'm so glad u could get up and not cry and told your friend u loved her!!! Good job!! I've always figured if u care about someone u tell them cuz life is too short!!! Pelvic floor and rectal problems r the worst!!! No one gets it not even doctors!!! They don't live it we do!!! Mornings r the most awful for me!!! I'm like u. I cry everyday!! I just want to get up and go!!! I can't!!! I also have ibs which causes a lot of rectal pain and burning!!! My fissure was causing the burning too and still does!! It takes 4-6 weeks to heal!!! Well after my hysterectomy and everything they r going to do it's an 8 week recovery!!! I'm SO tired of sitting on my heating pad!!!! I've seen 7 gi and 4 colorectal doctors and tried pt twice, once with balloon manometry. I have seen a dietitian and nutritionist and tried hypnosis and acupuncture and also saw pain management who tried numerous injections that didn't work. Have tried Botox and trigger point injections that didn't work. Even went to Stanford. Nothing has helped!!! Now with all my prolapses it causes incomplete bowel movements and more pain!!! I tried an ibs med that screwed me up royally and then caused the fissure which lasted five months!! Still have it since I just had the LIS sx. I just want to live life and have fun and watch my grandkids and workout. U name it, I want to do it and can't!!! Now my dog whom I adore is ill which upsets me plus losing my mom last year has about done me in!! I've thought about not being around but my family would be devastated!!! I love my family so very much!!! I miss being that loving mom who loved raising her kids!!! I miss that!!! Sorry to rant. Just tired of all this!! I've been having problems since May and I'm sick of it!!! I know how u feel!! It was nice to see all the posts to u!!! We all get it!! It's nice to know there r people like us even though it sucks!!! We'll take care and I hope to talk to u soon!! Wishing u nothing but the best!!!!

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Kathcat64
Kathcat64
in reply to Karen1954

No you were not ranting, actually summing up my life in so many ways. I've been to so many Docters and ER several times just out of desperation. The ER thinks you are there trying to get opioid, they don't care, they don't get it. My best friends are right now on an Alaskan Cruise my husband and I were suppose to be on, there simply no way. My darkest times and please don't hold this against me, I researched suicide, how many days can you live if you quit drinking water, many other sites through my tears while listening to my husband snore. At that very time my beautiful granddaughter sent me a text that simply said I LOVE YOU♡. I realized how selfish my actions would be to my precious family, so that is out if my mind for now. I just want the pain to stop, I hurt every day. Like you MORNINGS ARE PURE HELL!IM SCHEDULED FOR Botox end of month, I'm scared what if it makes it worse. I think I'm depressed, what do you think my friend?????

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Karen1954
Karen1954
in reply to Kathcat64

Hi my friend!!! I think there's some depression. Our lives r hell!! According to my therapist if we can still laugh through all the hurt at times then we need no medication!! My son thinks I should be on an antidepressant but even my pcp said she was hesitant!! I don't want to be on meds!!! I knew that if I went to the ER they would do nothing!!! I've been told they don't have anuscopes there so what would they do? Nothing!! I was on norco for 9 years!!! Finally got off!! My pain management doctor put me on a milder opiate which did nothing!!! Now off of that too but my uro-gyne is putting me back on norco after my upcoming sx!!! We can't and don't live life like normal people!!! Drives me insane!!! I get mad at commercials that show people having fun cuz I want that!!! I'm praying that my fissure gets better since I had the sx for it. I know it takes 4-6 weeks but damn I want it fixed now!!!! I hope Botox works for u!!! It might!!! It won't get worse!!! Doesn't feel too good but not bad!!! I would never hold anything against u!!! I've thought the same thing!!!! I even told God to take me now if I have to live the rest of my life like this!!! I don't want to die but sometimes the pain is excruciating so our minds just want the pain gone!! I haven't really had problems with my levator just all the bowel stuff and the prolapses!!! I'm trying to stay positive that life will change even though I'm having to do sxs. I keep praying that all of us with these problems will get better!!! I still cry but why not!!! Our pain is awful!! Anyway I'm always here for u!!! Hugs and love coming your way!!!!

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Kathcat64
Kathcat64
in reply to Karen1954

I started an antidepressant one month ago when my mind went to those dark places. So this is the Happy me.....................I don't think it's helping, but my husband disagrees and insists I stay on it. I believe in God as well, I pray every day. I've prayed that if this is as good as it gets, please take me. I have a precious sister in heaven and I miss her so, she was my best friend and confidant. She died in 2015 from Ovarian Cancer, she was only 50 years old. Her picture next to my bed, I'm looking at it now. Like you I have 2 children and 5 grandchildren and the most wonderful husband a woman could ask for. It is me who has taken care of this family and now they take care of me. I feel like a burden, I don't want them to take care if me and worry about me. I just want to be momma grandma again and plan vacations and decorate for holidays. Last Christmas my husband did the shopping, I made him a list, didn't turn out to swell but he tried. Christmas be here soon, I will give money this year. It's like you woke up one day and your life was unrecognizable. I'm tired, I would give anything to sleep all night. My husband's snoring annoys me, but he has snored for 40 years, it never bothered me before. Honestly I thought it was a fissure and was ready to have surgery and FIX IT. This diagnosis along with NO CURE only treat symptoms really has affected me. It's so nice to talk to someone. Thank you♡♡♡♡♡♡♡

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Karen1954
Karen1954
in reply to Kathcat64

Good morning!!! Everything u said sounds just like me!!! I want to be a good mother and grandmother and wife and I don't feel like I'm any of those things!! I try and push through the pain to make dinner or sometimes cookies for my husband but most of the time I sit on my heating pad Day in and day out. Don't go anywhere or do anything!!!! I hate it!!! I have two kids and four grandchildren!!! I use to see my daughters three kids a lot but I'm not able to go over there and she rarely brings them here. I know she's busy but I've always been an involved grandma!!! My sons son I have seen 3x in 9 months!! They just like being by themselves!!! Not like my son at all but I can't change any of that!!! Breaks my heart!!! I'm a very sensitive and emotional person and it just hurts!!! How did your levator start? What have u tried? Mine started with a rectal exam with a scope and she hit something cuz after that all the pain and pounding in the butt started. I tried numerous meds which didn't gel with my ibs so it created chaos!!! I hate all this cuz like u said u feel like a burden!! It sounds like u r the caregiver to your family like me and having this crap destroys are sanity and our lives!! With the fissure I feel everything in my rectum!!! It's so sensitive!!! I hate it!! Having another sx next friday scares the crap out of me but I'm hoping with everything being done I feel better in a couple of months and that the rectal pain feels better!!! It's been 5 years of all this!!! I'm so tired of it all!! My granddaughters both play soccer and I've seen a few games in pain but now I'm going to be missing them after sx. I just don't know what we can do!! It's awful!!! I ask god why? Have I been such a bad person? When I lost my mom last year I lost my best friend!! I know she was ill and was 92 and couldn't last forever but taking care of her and watching her die about did me in!!! It will always hurt!!!! I'm very sorry for the loss of your sister!!! It's devastating!!! Well I've rattled on long enough!! Talk to u soon!!! It's so nice talking to u!!! Take care!!!🌺😘🙏❤️

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Kathcat64
Kathcat64
in reply to Karen1954

Mine started 2 years ago. I began having a hard time going to the bathroom, constipation. Went to Dr and had a colonoscopy which was normal, but that's when I started going downhill. Laxatives, still softness and pain. Diagnosed with fissure they said, prescribed special cream to be applied externally, but I kept saying feels like it is inside. Nobody listened. This Dr says Levitor Ani Syndrome which after reading sure makes sense. What if he us wrong too??????? My only comfort is my heating pad. None if them will, prescribe any pain medication and some days the pain unbearable. My son and grandson coming over today. He only 6, I must get up and figure out what to feed them. I'm tired, I don't sleep well. TY it's so nice to talk to you, I appreciate you. I must get off heating pad and get this long day going.........

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Kathcat64
Kathcat64
in reply to Karen1954

I read that stress can cause these symptoms. My sister died in 2015, my daddy and my precious dog in 2017 and last year my brother died in car accident. That's a little bit of stress♡♡♡♡♡♡♡♡perhaps.

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Karen1954
Karen1954
in reply to Kathcat64

Oh my lord!!!!! That's crazy!!! I'm SO very sorry for your losses!!! That's a huge stressor!!!! As I mentioned before when I got stressed my puborectalis muscle would spasm like crazy!!! Botox might help u if they inject that muscle. Unfortunately it didn't help me!!! Maybe it'll be different for u!!!! Also pelvic floor exercises!!! Valium can help with the spasms or chlorzoxazone!!! I hope u were able to have some fun with your son and grandson!! I pushed through and made it to both my granddaughters soccer games this morning!!! Took a norco to get through!!! After I see my grandkids and my daughter I break down crying because I want to do this all the time!!! My heart just breaks!!! Of course now my rectum is burning from the fissure!!! Afraid to poo!!! A colonoscopy won't tell u about the levator ani problem but seeing colorectal sx can do an exam and tell u!!! I just had a colonoscopy in August and as I was coming out of anesthesia I heard "big fissure"! I was praying it wasn't me but damn it was so had the LIS sx!! After reading about it it said it can take up to 6 months to heal!!! Jesus!! I can't live with this burning and pain!!!!!! I'm SO glad we have each other!!! It really helps as we can run thoughts past one another!!! I pray every morning and night that we heal and can live our lives!!! I can't do this much longer!! I know we can continue but I will hate my life!!! Please take care my friend!!! God bless and much love!!!

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Kathcat64
Kathcat64
in reply to Karen1954

Karen y3s I pushed through my day, I love my son and grandson so much. Such a loving little boy. He asked me once GRANDMA WHY ARE YOU IN BED ALL THE TIME? Broke my heart. Honestly I'm so afraid of this Botox, I've read on this site about woman who Botox made pain worse. I couldn't take any worse. I only have Tylenol and ibruprofin, they won't give mype anything for pain. Today is Sunday, the sun is shining and I'm lying in bed with my cat. I appreciate you Thank you and so glad you got to go to soccer game-that's big♡♡♡♡♡♡

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Karen1954
Karen1954
in reply to Kathcat64

Hi!!! I know how u feel about everything u r going through!!! It's hard to have to push through life when u should be enjoying life!!! I love being with my family. Just don't see them enough!!! I miss being a mom with family and doing stuff!!! My one granddaughter wanted me to hang with her after soccer but they had plans!!! They r so special!!! U should be fine with the Botox. I haven't heard about more hurting after!!! Anything can happen these days!!! It's not fun our heating pads r our best friends!!! I was given pain pills from my old pain management doctor but didn't do much!!!! I'm hoping u can find a good pelvic floor therapist. That might help a little!!!! It's just so frustrating to feel this crap I guess at any age. I can't imagine trying to raise a family with this crap so we r lucky there. But I'd be happy just like u if we didn't have this at all!!!! I don't know what fun is anymore!!!! What a novel concept-fun!!!! I can only hope that god here's our prayers and helps us through!!! Take care my friend and many prayers coming your way!!!!🙏❤️😘

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kalecolbe12

Hi it's Audrey here..can you let me know how the Botox works because my pt has someone who is getting it but I want to follow people's experiences...I am in touch with a couple of people who had it but they are busy and it's difficult to stay in touch with them

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Kathcat64
Kathcat64
in reply to Karen1954

Good luck on your hysterectomy. I had one age 33 and it wasn't that bad. At least you will get some good pain medication. I will think of you♡♡♡♡♡♡♡

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Karen1954
Karen1954
in reply to Kathcat64

Hi Kathcat!!! Thank u for the kind words!! If it was just a hysterectomy I'd be ok but he is repairing pelvic floor prolapses which scares me but hopefully I'll feel better after!! It's not until Friday so hopefully we'll talk before then!!! I'll keep saying prayers for us!!!

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Kathcat64
Kathcat64
in reply to Karen1954

Just been thinking if you after your surgery, I hope pray it helps you my friend. Went back to my Dr this week and she finally relented and gave me some pain medication. So if I take muscle relaxer and pain pill I get about 3 hours of tolerable pain, which I'm Thankful for. Next week I head to Spokane for Botox injection. Still nervous about that, but maybe just maybe it will be my saving grace. Trying to stay positive. Thinking of you, write when you can Karen♡♡♡♡♡♡

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Karen1954
Karen1954
in reply to Kathcat64

Hi Kathcat!!! Sx was two weeks ago for the hysterectomy and four weeks for the rectal sx. Too much pain med screwed up my bowels once again. Been off norco since the Thursday after sx!!! Trying to get my ibs under control. Been going up and down!! Got really constipated so had to manually evacuate and felt I messed up my fissure again. That takes like 8-10 weeks to heal just like the hysterectomy!!!! So after doing the evacuation I just said no more. Just going to stop cuz I want to be with my grandkids again and live life and this is what I need to do!!!! Just going to suffer through it!!!! Please let me know how the Botox goes!!! I had no luck with it but hopefully u do!!!! Tell them to check the puborectalis muscle!!!! I'll keep saying prayers that this works for u!!! I just hope we can both live normal lives!!!! This is crazy not to!!! How do things change so much!!! I keep asking God to help and I'm trying to keep the faith but it's SO hard!!!! I'm tired of pushing through the pain!!! I don't want to live like this and u don't either!!!! Well hugs and love!!!!

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Konagirl60

I totally relate to your scenario. I was dismissed by doctors, misdiagnosed, given incorrect treatments, improperly medicated, neglected, abandoned and almost died of severe sleep deprivation. It was 3.5 years of living hell. I was a single Mom and my son starved. I had a severe nerve compression injury and I was left in chronic pain because I’m a female.

I had a tubal ligation with Filshie clips in 1998. Have you had this? These clips migrate. One of my metal clips went to my rectum. It stretched two rectal nerves and they eventually became vice gripped and stuck between ligaments in my right buttock where it meets my rectum. Make sure you have no metal hardware inside of you. Get an X - ray.

I had a colonoscopy and my diagnosis was levator ani syndrome. How could the doctor doing the procedure not have seen the clip! Don’t they have a visualizing system?

They saw it on an MRI and didn’t report it!

Describe your anal pain? Burning? Pulling? Cutting?

Are you pain free when you stand? Can you sit at all? Do you have a perineum sparing cushion?

Are you sleeping at all? Spasms in all muscle can be somewhat relaxed by taking magnesium bisglycinate. If the disorder is making you constipated, try castor oil packs on your intestines. Hard stools put pressure on the coccyx and pelvic floor nerves. A sitz bath may help to.

Anxiety can be naturally calmed using passionflower pills.

You live in Washington State. Can you try CBD oil ? It will calm down your own enndocanabinoid system. THC oil will help you sleep if taken at bedtime.

I agree, you need to see a neurologist. You might have pinched nerves to.

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Kathcat64

My pain for last 2 years has been pain way up in rectum. Felt like a knife twisting up there and sitting felt like sitting on a ball. I never feel like I empty my bowels, even after a few times. I do get relief soaking in tub, but I can't spend my life in tub. Today I've been on this muscle relaxer for 5 days and while I still hurt I had brief periods with no pain, 20 minutes here or there. My husband instead of getting CBD oil got me pot for pain. I haven't smoked pot since the 70's, made me laugh so I guess I'm going to get stoned tonight. Uuuuhhhhgggg to look funny, but once again I laughed. I'm sending him back tomorrow to get the right stuff. I'd fire him, but he all I got. Who knows, maybe I will sleep. Wouldn't that be wonderful♡♡♡♡♡♡♡♡♡

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kalecolbe12

I am thrilled you have gotten more responses and are picking yourself up and going to find answers...it's the only way...be your own advocate.....I do want you to remember that when you do go to pelvic floor physical therapy you don't have to have internal... mine has mainly been external and adjustments of my hips and buttocks and sacral area she does reach my internal by the external trigger points which has worked better for me...and please don't forget to read headache in the pelvis you will just feel better as you read it because you'll realize they're talking about you....if you can get it at your library then get it on Amazon it's well worth the money ....please let me know how you get on 💜

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Kathcat64

I got book at library Thank you. Dr finally gave me pain medication so am able to sleep. Tried CBD oil and nothing. Next week I go to Spokane for Botox injection. Fingers crossed. Dr says physical therapy after Botox.

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kalecolbe12

Oh great...I may have to get it too.... So I'm waiting to see how it works for you it seems to have different results for everyone but then one guy I spoke to has it three times and then his pain was gone permanently

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kalecolbe12

Oh and also the cymbalta or gabapentin are good....and I am glad to hear the muscle relaxers are kicking in it takes about a week for them to kick in and you really feel a difference.....also don't forget about the Valium and lidocaine suppositories your doctor will order them from the compounding pharmacy

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Konagirl60

Stay off Gabapentin and Cymbalta if you can. They have nasty side effects.

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kalecolbe12

I think it depends some people do well on one of the other or even both and other people do well on amitriptyline it's all so individual

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Konagirl60

I’m just saying....be careful.

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Karen1954
Karen1954
in reply to Kathcat64

It's me again. I also felt like I was sitting on a ball which turned out to be a prolapsed rectum!! Where in Washington do u live? My mother in law lives in Bellingham and I love it there! Oh. Cbd did not help me at all!!! Just FYI

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Karen1954
Karen1954
in reply to Karen1954

Oh yeah. I have seen a therapist for years which is ok but she always says get up and go!!! I can't!!! I finally told her to back off in that respect!!! I can't!!!!

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Rxmom

Hi kathcat64 & all- I feel your pain every day for 6 years. Same story ... you are not alone. I’ve tried it all - just watch that PT doesn’t result in worsening or development of fissures & hemmeroids with internal Pt work. I’ve concluded that this chronic condition requires constant oversight by a team of pelvic floor docs, pain mgmt, primary care, PT, rectal MD, and for me a surg who implanted a retrograde stim (Abbott) which has helped. But ultimately, it’s the patient who has to seek out these professionals. There’s no one stop shop or “center” - and most hcps aren’t familiar w condition.

Welcome to private message me

I’m in nj & pa & my team spans philly, nyc, and Morris county nj.

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kalecolbe12
kalecolbe12
in reply to Rxmom

Yeah I get worse with internal because pudendal nerve involvement my she said my muscles are completely relaxed now after 10 months of having this and there's no reason to do internal we do external and mobilization pudendal nerve glides and plus it's the support for me

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willemine

Compassion i had it for two years anal / vulva pain my life was terrible and i got in a depression. Now its 30 % less i don t know because of what but i take oxycodon and amitriptaline for nerve pain.

Don t try to feel guilty toworths your loved ones and seek for menthal help i had a lot encourigment from a psycholoog to deal with it and to vent . You need menthal guidince because the path you have to tracel in inhuman and a big burden to carry.

Compassion and a hug from Holland

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willemine

You can get support from chronic pain people by " mychronicpainteam " on facebook its good to read about others how struggle and have the same problems and how they deal with it and you can vent there " they get it " i am also active there under the name @willemien

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