I have been to so many doctors, one said it could be
Levator syndrome, all others no idea. Tried everything suggested, I mean everything. Pain pills no help, latest Gabapentin, no help!!! Don’t know where to go next! Ruining my whole life. All day pain mostly sitting...
Me too...do you get pain after bowel movement? I got diagnosed with Levitt and I pelvic floor dysfunction and I've been to PT for a year and a half and I'm on gabapentin and cyclobenzaprine low dose however and I am doing stretches breathing everything I should do however one girl I spoke to ended up getting a sphincterotomy which relieves pressure in the rectal area and I'm about ready to ask for that or a colostomy bag so I don't have to feel the pressure of the bowel movement and the pain afterwards.. have you tried Botox yet? You may have some pudental neuralgia too.I am soooo done with this...also ruining my life! Was doing ok for a couple of months and now it's back ugh!where do you live ?
Don’t do sphincterotomy as it didn’t help! I had one of those too!!!! As u know I’ve tried EVERYTHING! Just had a transforaminal L1 epidural and it WORKED!!!!! I found a doctor in New York whom my pain doc was friends with and this is what they came up with!!!! Worth a shot!!!! Read my post to the other person who wrote about rectal pain! I only had two days of being pain free but going to do another stimulator with the leads placed there!!!!
Hi Karen, it's me...your buddy in Ca...I'm at a loss. There does not seem to be any answersI know u have tried everything..more than me!!! This pudendal nerve block has made me worse. I'm at a loss. Much love...olivedog❤❤🙋🏻♀️❤❤
Hi!!!! Sooooo nice to hear from u!!!! Yes I have tried EVERYTHING! I did have a bilateral transforaminal L1 epidural and it WORKED!!!!! Only lasted two days!!!! The best days I’ve had in 7 years!!!!! Now my doctor is going to try the DRG stimulator again with the leads in those areas! I pray to god it works! If not I’ll be doing a diverting colostomy! I hurt every time I poo!!!! I still also have levator ani which kills me every morning!!! Wtf!!! But that epidural took away that pain too! I know I clench my butt while I sleep even though I take Valium. I’m SO sick of this shit!!!! How r u doing? I also had two pudendal blocks and did nothing!!!! I don’t understand why we all get this shit!!!! It’s beyond any pain I’ve ever had and I’ve had a lot!!! What have u tried? This is all so heartbreaking! I can’t go anywhere or do anything!!!!! I have another month to wait for my procedure unless he gets a cx! He only does it twice a month!!! Good lord!!! I’m ready to shove a knife up my ass!!! I hope u keep in touch! Not many people understand our pain!!!! Rectal pain is unlike every other pain!!!! No one gets it!!!! I’m SO glad to hear from u!!!! Take care my friend!!!! Hugs!!!!
Thought u would at least think this kinda funny...at this point in our dilemma...we met on here...lol
Have they tried injection botox into the levitor ani? Recommend it is done under sedation if possible.
It takes about 2 weeks for the full effect, but can last up to 8 weeks. When repeated it often lasts a bit longer each time.
While it is "working" try 1) pelvic floor pt or 2) myofascial massage while the muscle is more relaxed until botox...
Hi!!! Thank u for your response!!!! I have tried EVERYTHING there is and NOTHING has worked!!!! I’m talking to a neuroradiologist Wednesday to see what he says!!! All my doctors think it’s a nerve problem which I agree but they can’t find the nerves!!! This has been going on for 10 years and I’m worn out!!! I hope u r finding relief!!! Have a nice day!!!!
In case you do not know... Botox stops muscle spasms, but it ALSO kills the ends of the nerve cells that pass the pain signals (for 6 to 8 weeks)...
After my obturator and levator ani injections, I had my first fart in years. I guess the levator ani was so tight that I did not fart (sorry - TMI)...
Hi hope you are doing well
I wanted to ask with levator Ani did you notice any issues/ changes to your bowel movement?
To the appearance of it?
I would appreciate your help
I was in the same situation a few years back and I periodically post here what helped me. I’m essentially pain free now and live a normal life, exactly like before the pain started. It’s amazing and I’m very grateful. I was diagnosed with levator syndrome, pelvic floor dysfunction, pudendal neuralgia, ibs, etc. Every vague diagnosis. Spent lots of money on every test, endless appointments with specialists. This went on for around 8 years and essentially ruined my life. I tried everything, physical therapy, various meds, etc. I was desperate and considered things like Botox. Luckily, my pt recommended a doctor at UCLA named Joshua Preager who does Botox injections among many other things. He met with me and suggested starting with amitriptyline, 10mg building up to 25mg, which I stayed on for like 5 or 6 years. This cured 80 percent of my pain. It had side effects, like increased drowsiness and lowered libido, but it was worth it. Completely changed my life. But I wanted to get off the meds and past that remaining 20 percent. I had heard of the wise Anderson clinic. After years of debating attending, largely because of the cost, I went and it completely changed my POV on the condition. I realized the mental component of the pain and the program really helped me. And now I’m off all meds. While attending the clinic, which had a mixture of women and men, I recognized certain attendees who probably wouldn’t beat the condition because they had negative attitudes and refused to accept that they possess the tools to conquer it. It’s not a pill or procedure; it’s a readjustment of your perspective.
Thank you Lucas that has been so helpful I googled Wise Anderson & requested more details. I am so desperate to find help. I have had rectal discomfort for 3 years which in the past 12 months has been getting worse. Rectum is constantly moving can’t remember when I had a comfortable nights sleep. Been on Amitriptyline gabapentin pregabalin recently duloxetine no help. The specialists tell me I have pudendal nerve damage due to scarring and removal of some pelvic floor muscles following surgery to remove a cancerous tumour in my pelvis which meant I had to have a full frontal pelvic clearance. I just want to live my life and be there for my family my beautiful grand children an friends. The pain management team has told me the only other thing they can offer me is a steroid injection so far I have yet hear of a positive experience from somebody about these Would be grateful to hear from anybody whose had a steroid injection. Sorry to go on a bit but feeling a bit down at the moment but not giving up the fight. Hope you all find a solution to your pain.
Hello. I have similar pain. Been diagnosed with pelvic dyssynergia. I have a BM, incomplete evacuation and then pressure. I will go again, straining. This has created other problems. Rectocele, cystocele, hemorrhoids. I also have stomach cramping later.I have literally tried everything, not Botox as no one here does this yet. I had a bilateral steroid injection in the pudendal nerve. This did not help at all. I took gabapentin very briefly, could not take amytriptyline. I am seriously considering a colostomy. My quality of life is none. I've had this for over three years and it was gotten worse.
I'm in similar situation....have tried nerve block, have also tried injection into coccyx area with manipulation and neither worked and I'm over £2000 down.....because of where pain is located the only thing I think it can be is the Rectal branch of the Pundendal nerve, so seeing the consultant on 21st July to discuss further. Fingers crossed 🤞
Where is your pain located?
Just about an inch inside my bottom....then press on left hand side....I'm convinced it's nerve pain, it burns so much...it even affects right up to back of my neck and gives me terrible tension headaches...definitely pressure on a nerve....
What kind of Specialist are you seeing and please keep me posted as I think you have same... Pudental rectal branch
I was originally referred to muskoskelatal surgeon who did the last procedure (Coccyx injection & manipulation) I'm seeing him privately on 21st July so will see if he can do it...or if he can refer me to neurology specialist in Spire...Will let you know how I get on.
Hi, i have this also, painful spasms can come suddenly and it is agony. The only thing that stops mine is diazepam just a small dose, I only take it when I can’t bare the pain any longer and it stops it straight away. I only need to take it once a month, twice a week if bad. Buscopan sometimes helps if a take 2 tablets
I have had the same issues for years. And have the same story of multiple medications and therapies. Gabapentin has been the only medication that works. It takes the edge off. But I had to go to the maximum daily dosage which I think is 2400 mg.
The down side is that my mind is foggy all day so it's a trade off.
Gabapentin does allow me to sleep though.
I've traced the source of the pain back to three herniated discs ( L4/5-S1) and I'm hoping to have a cortisone injection soon. I'm somewhat confident this will provide some relief however temporary.
The next step is surgery ( laminectomy) but I don't have high expectation the doctor would try that. Although, what do I have to lose as I'm essentially paralyzed laying in bed in the fetal position all damn day.
The short answer is Gabapentin is a good medication for treating pain with the only side effect being the foggy mind.
Best of luck to you.
Frank
Hi everyone!!! I have tried everything u all have and more including two implanted stimulators that didn’t work. Have had two pudendal blocks and nothing has worked!!! Going on 8 years. I found a doctor in New York at the ainsworth institute and my pain doc ended up knowing that doctor so decided to try a transforaminal L1 epidural and IT WORKED!!!!! Only lasted two days but I had NO pain especially after a bowel movement!!!!! So he wants to use the DRG stimulator again with the leads at the L1 sites! I’m going to ask if he can do RFA!!! Burn the shit out of those nerves!!!! Now I’m back to excruciating pain especially after a bowel movement!!!!! It’s insane!!!! I was ready to do a diverting colostomy!!!!!! Hopefully I can get this done soon cuz the burning is insane! Feels like I’m sitting on a HOT heating pad but I’m NOT!!!! This is the only thing that has worked after all these years!!! Tried ketamine suppositories but didn’t work! Still seeing my pelvic therapist but everyone has determined my nerves r shot in the rectum and perineal area!!!! It sucks!!!!! I hope this can help a lot of people!!!! I’ve tried SO many things and meds and treatments and this is it!!!!! Keep in touch!!!! Take care!!!
Hi, I haven’t been on in a long time. I sitting here crying because every story and most treatments have not worked either! 5 yrs of complete misery! Same words have left my mouth .. this is ruining my life! Sorry but so grateful to hear I’m not alone!! Me thinking I was crazy. I will research each response to see what I may ask my Dr about. He is supposed to be the best leading Colorectal Dr and surgeon. Doing the third Colonoscopy next week. It makes me feel my life is over. Thanks for all your honesty xo
I started out with the Levator syndrome which progressed a year later into pudendal neuralgia diagnosed by Dr. Hibner in Phoenix. I eventually got better for a year although had to sit on a cushion, then went into debilitating rectal and perineum pain end of 2018. Had pelvic Botox, multiple blocks, and other treatments with no relief. I had been diagnosed with sacral nerve compression as a result of six Tarlov cysts from S1-S4. Finally had the Tarlov Cyst surgery in Nov 2019. I have improved since but I need to give it 3 years to fully heal. There could be permanent nerve damage since I waited over 6 years to have surgery . I still take opioids for pain but it is much more manageable compared to almost suicidal for a year. My MRN showed also some pudendal nerve entrapment at the ischial spine. These rectal issues are not simple to fix,. Make sure you get good imaging to see the whole picture. BTW, Dr. Feigenbaum and Dr. Long use transforaminal blocks as diagnostic tools to identify if the pain is coming from a spinal cyst. If there is relief, it confirms the cyst is the source. Good luck and don't give up!
I had a pain block 5 weeks ago and still recovering from a flare, would not recommend this.
I have a diagnosis of levator-ani syndrome and it has taken a few years to find a treatment that helps with the constant painful spasms.What works for me is vaginal internal /external trigger point therapy from my specialist womens physio. Also receive botox injections into pelvic floor specifically into pubirectalis muscles.
I also take a variety of pain meds and anti spasm meds.
Although we all have similar issues it's finding out what treatment /meds works best for us.
Has taken me about 4yrs of trying different things to help alleviate symptoms.
Treatments are effective in reducing the severity of symptoms for a short period but definitely worth it.
Hope you find a treatment that works for you. Stay strong and wish you good health.
So sorry anyone has to endure this pain and how itsteals your life. I also have done everything without even temp results. As they say God doesn’t give you more than you can handle. Can’t believe in that anymore. 6yrs now. God help us all xo
Rectum pain & cortisone stereod shots 
Physical Therapy Made my Pain Worse
Severe pelvic pain for over 2 years, please help!
Help - my myofascial pain is becoming unbearable due to years of PN pain. Has anyone tried Baclofen with good results?
