Levator Ani Syndrome

[sandy365]

New here, Positive I have Lavator ani syndrome x 2 yrs . “Currently” on ice packs and Valium suppositories 2x a day for rectal spasms. Have tried 800 mg ibuprofen, Lyrica, Gabapentin with no relief. Have had 2 Pudendal Nerve blocks. 2nd one was directly into nerve by CT scan, with No relief. So many exams, doctors, “tests” and meds and can’t seem to get an actual name from any of them. I am certain of what it is because of all “MY” research. After bm’s, increased pain and spasms and burning pain down the back of both legs. I believe it’s because “going” stretches the Sphincter and perhaps aggravates the nerves. I have read lots posts here and I feel for everyone going through their own painful journey, and pray for answers and relief soon.

[Martinre]

Hey,have you tried hydrocortisone suppositories.Drink green smoothies and get a vibrator(put it on or in your buttocks)It will get the muscle to stop spasm.It worked for me.

[Karen1954]

Hi sandy!!!! I have had the exact same thing for three years!! I too have tried Everything u have and more!! Even went to Stanford with no results!!! I too have the problem after the bowel movement. It does stretch the sphincter and causes more pain. I talked to my pain management doctor and he can't inject and other nerves than he already has. I know the only solution would be doing an epidural like when u have a baby but then u can't walk. I sit on a heating pad a lot!!!!! My pelvic therapist has tried balloon manometry which has helped just not enough. I do deep breathing with kegels which helps but not enough. I know a lot of my pain revolves around bms. It just sucks to live like this. The mornings r hell. Can't go anywhere or do much other than sitting on my heating pad. Every symptom u mentioned I have!!!!! We could be twins!!!! I hope u will keep in touch. It's nice to talk to someone who understands!!!! I also know that stress can affect my pelvic floor. I just hate living like this!!! God help us both!!! I'm here if u need to talk!!!!

[stubb in reply to Karen1954]

Hi Karen Ive been suffering for about the same time as you and its so frustrating. Yes I agree after a bowel movement it hurts so much more and I still feel like I need to go again, which I don't. I also have realised that stress makes my pain worse but its a real vicious circle because the pain makes me stressed and the stress makes the pain worse!! I also use heatin the form of a wheat bag which helps a little bit. I have been referred to a pain clinic which I start in 2 weeks goodness knows if it will be of any use but I feel i am at the edge of my tether s0 will try it. Ive just had so many meds and injections and surgeries including a Ketamine infusion over 10 days in hospital that I think I've run out of options. Good luck and hope you get some relief.

[Cardinal]

I have something similar. I dont call it LA syndrome, but it seems to be the same - pelvic pain, trigger points in my LA, OI, and all other pelvic floor muscles, pain when sitting, BM making it worse. What I've done that has helped a lot is first getting my pelvis into alignment, and also taking Miralax for softer BMs, and small dose methadone for the burning. nerve and muscle pain when I sit. Also had years of internal physiotherapy which helped somewhat. I dont use ice or heat. Valium suppositories and oral valium did not help, neither did gabapentin. Only methadone, and xanax actually helps a little too when it was really bad. I also sit in a special chair. I'm much better now. Have been working 70 hours per week after not being able to work for years. Saw this topic in my email in ox and thought I'd just share.

[stubb]

Oh boy!! your story is like reading my own. It must be one of the most uncomfortable complaints anyone can have and until you suffer with it as lots of us seem to you just can't understand how it must feel and its such a hard feeling to describe to anyone and somewhat embarrassing . Im really fed up as I have had it now for nearly 4 years and had soooooo many tests and treatments that I felt like a freek until I f0und this site and now realise I'm not alone. I have even got a Boston neuromodulator inserted to help to confuse the pain signals to my pelvis but it only helps minimally. I use a heat bag a lot which helps a bit but the only real relief is walking, standing and sleeping, which seems weird but true, hope you can find an answer for yourself.