Levator ani syndrome and pudental spontaneous neuritis

First time posting on this website. I am Rocky 68. I have had difficulty sitting due to rectal pain for six years.

I had office job which required sitting. By time I arrived home I would lie on my stomach and rectal area felt like a boil. Clothing felt as though I was having wedgie. My problem was not only sitting but laying as well. Every time I laid down I felt urge to have bowel movement.

I have had many procedures: colonoscopy, two MRIs, ganglion impar shots, cold laser treatment, trips to Chiropractor and PT which included internal massage.

In 2012 I had my coccyx removed as MRI showed it was dangling and inverted. I was excited to have surgery as I thought it would clear up all my symptoms. And fortunately it did not.

I take two tramadol 50 during the day and ,5 mg clonazepam at night in order to sleep. I tried gabapentin but could not take that medication. I also tried 25 mg of amitriptyline for 2 1/2 weeks with no success. Anal valium suppositories made it worse.

This problem causes not only physical pain but affects me emotionally.

Has anyone found Drs in Nirth Carolina who treat this condition.

Has anyone gone to Dr Anyolak in Minnesota? I do not think nerve is entrapped however. Dr Antilak has short video on PNE which everyone may find helpful.

Please respond. I know this us long post but I am so discouraged not being able to do things I used to do so easily. This disorder came from nowhere - has anyone been cured?

21 Replies

  • You poor thing. All of that is so awful. And I thought I had problems. My only suggestion is Stanford, in California, which I know is a long way, but maybe if you made some calls you could get them interested and then fly out and see what they could do. Or a medical university near you? I am so sorry for what you are going through... I hope you feel better soon. Try some medical universities. Good luck.

  • You poor thing! I guess we can all relate to a point. Have you tried getting Botox injections to pelvic floor muscles, Valium suppositories, diff nerve blocks ie: pudendal blocks or perineal blocks, belladonna and opium recital suppositories, medical marihuana, stronger pain med ie: Percocet, methadone. Tramodol is very weak for pain, I think. Others will have good idea I'm sure. Please stay strong, this pain is very difficult but you will find something that will help you. Keep trying and be sure you have A pain doctor, urologist, gynecologist and gastro that will work with you and be patient until you have some relief. Take care.

  • I see someone suggested Stanford in Cali, I have been there as I only live minutes from there. dr. Chris Payne, whom I saw has opened his own practice in Los Gatos, Ca. So, if you're coming out of see him. Maybe you can get a phone consult with him before flying out.?

  • Hi rocky sorry to hear ur still in so much pain I too have,a problem sitting standing walking my tailbone is inverted but I have not seen a specialist as yet even after painkillers I still have the discomfort it never leave me so I know the pain ur in i hope someone can help you take care

  • I went to Dr. Hadley at Charlotte Medical Center. There are few Drs. who actually remove tailbone and removing mine did not cure my problem. I heard someone had a TENS Unit inserted to help with pain. Rocky68

  • I think my problems started in childbirth 20 years ago as I had so many epidural s that I was told my body was rejecting them when they done the needle test I have worked over the years though the discomfort and pain with painkillers but now hitting 50 my body cant take it anymore so I am still in early stages of getting professional help

  • Get ready for a roller coaster ride. I went to my primary care physician who referred me to a Gastro doctor. Had colonoscopy and CT scan. Both required cleaning of the colon.

    Was then referred to an orthopedic doctor. He gave me two shots before doing an MRI. He gave me a nerve block and when I ask if it did not work what should I do he said live with it.

    Ended up at Charlotte having tailbone removed which was completely unnecessary.

    Next to my gynecologist who put me in touch with a physical therapist. Did that for nine weeks.

    Have gone to two different chiropractors.

    No one in North Carolina wants to touch pelvic disorders. Just trying to cope and decide whether to go out of state.

  • Funny you said about your colon at the start when I was off sick my doctor said my colon was swollen I suffer from terrible stomach pain and swelling is this also a system

  • I have some stomach pain but most of mine is rectal and pudental nerve pain which shows as burning tight pain going Dow buttocks into thigh. I suggest you have a complete colonoscopy to rule out any abnormalities in your colon.

    If that is clear check for pelvic prolapse. Your gynecologist can do that. Then request an MRI which specifically shows sacrum. Just at the time these are very normal MRIs.

    Call the doctors I have consulted with our basing their diagnoses strictly on my symptoms. Nerve and trapment is very Rayor. They cannot Ashley determine if they nerd is entrapped unless they do surgery.

    Are you in North Carolina or elsewhere? Google dr Anyolak in Minnesota and listen to his video which is brief and concise

  • I am in northern Ireland so the health service is very slow here with appointment ect I did have an ultrasound to check my ovaries it was clear

  • Glad ovaries were okay. It is Dr Antolak video which you should view

  • I still have chronic pain but find it fluctuates with extreme stress. It stated after a diagnosis of PTSD. I am now doing breathwork t see if it will help. My appt at at a pain clinic was disappointing. I have read an as yet unpublished paper by Dr Jaak Paanskepp , a neuroscientist advising the use of a minimal dose img of bruprenorphine to alleviate treratmernt resistant depression experienced as pain. I hope to find a consultant who would be willing to try this.

  • I think my problem worsens as I have a lot of stress. Husband suffers from anxiety issues and everything is now left up to me to handle. Plus my Mom is 92 and I take care of her. I am trying stretching, relaxation exercises. I try not to strain when having a BM as this makes it much worse. Rocky68

  • Look up pudendal hope closed Facebook group. It could be Tarlov cysts in sacrum you'll need MRI of sacrum to detect

  • I had PRP into ligaments near coccyx and it healed my issues in that area

  • Sorry but what is PRP and how was it detected? Rocky68

  • Platelet rich plasma and xray

  • i find that sacrocranial therapy and shiatsu helps when the pain is accentuated by stress. though not the answerit helps.

  • HI i have had levator for over nine years i have tried all the same treatment as yourself plus biofeedback and botox but no success,but i have tried a sacral nerve stimulator implant on a two week trial the results were amazing i now waiting to see if i can get funding for the permanent implant from NHS UK , it is made by an american company called Medtronic it is about the size of a pacemaker which is inserted into the buttocks with an external remote to increase or decrease the stimulation. I felt better during the trial than i have in the last nine years i could not believe the difference

  • I will check into the implant. Did an orthopedic Dr recommend device and perform procedure. Very embarrassing question but when you lay down did you feel urge to defecate? I don't know which is worse trying to sit or lay.

  • It was a colorectal surgeon who did the procedure , i do bowel irrigation daily to relieve the pressure using a system called peristeen by coloplast , i understand and know how painful this condition is i can't remember the last time i had a decent nights sleep, i find it better to lie on my right side with a pillow between my knees, if you need anymore info just ask

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