I suffer from levator syndrome had a botox injection no relief more or less been told that i will have to put up with it don"t know what

[rugby13]

to do now as i am in constant pain

[helenlegs11 Volunteer]

Have you tried physiotherapy with a specialised pelvic therapist at all?

[rugby13 in reply to helenlegs11]

tried biofeedback last year with a pelvic floor dysfunction specialist nurse who referred me to try botox

[helenlegs11 Volunteer]

I haven't any great experience of levator syndrome but have suffered Proctalgia fugax a couple of times, it was dreadful at the time but thankfully the problem didn't persist for me.

Did the biofeedback work at all? I just wonder was the pelvic floor dysfunction nurse on the right track in thinking that the botox would work if the biofeedback hadn't.

What are your symptoms any typical nerve pain as in burning stinging or shooting pains or numbness?

Helen

[rugby13 in reply to helenlegs11]

burning and feels like you are sat on a golf ball i have just been told they are going to try biofeedback again and let an orthapedic surgeon have a look as the mri scan as it shows displacent of the tailbone and that could be sending the muscle into spasms

[helenlegs11 Volunteer]

I would get the physio to evaluate your pudendal nerve too. Any burning pain and/or feeling of a foreign object (golf ball) may be associated with nerve pain and the pudendal nerve is responsible for sensory and motor (bladder and bowel) function in that area. This nerve originates from S2-S4 and will not show up on an MRI scan. Still worth checking tail bone of course.

Helen

[rugby13 in reply to helenlegs11]

thanks for the info, i do have bowels problems , i have to do bowel irrigation daily i will mention to the nurse about the pudendal nerve

[jackie12]

I have the same problem and found that if i put a portion of a lidocaine patch in the rectal area it really helps stop the pain. I am going to try the lidocaine gel next time because the patches are very expensive. my dr also mentioned Botox injections but did not want to go that route. my pain can last for hours so i have tried all kinds of things. iam going to ask my pain dr about a new medication called rectiv which is suppose to help with fissure pain which i do not have but thought after seeing the ad for it ,look it up i would try that also. try the lidocaine patch or gel. hope it helps you. jackie 12

[rugby13 in reply to jackie12]

i have tried it before no luck , my pain can last for hours or days i never have a day without pain some days it is unbearable , from what i have read some people have had relief from botox , have you tried biofeedback ?

[JessH]

Hi, I also suffer from constant chronic pain so I really can sympathise with you. I have recently spoken to someone who is also a sufferer but her symptoms were different to mine. However the symptoms she had sound just like what you describe. After many investigations she was eventually diagnosed with trapped pudenual nerves. Shd has since had surgery and things are improving for her.

She saw a pelvic physio specialist who was the first to diagnose her and then recommended other specialists.

I hope this helps you & hope that you can find a cure very soon.

Jess xx

[rugby13 in reply to JessH]

HI Thanks for the info saw a different consultant yesterday who said he is going to have a good look at the mri scan to make sure there are no tumours around the tailbone and then he will refer me to a spinal consultant at another hospital so i have to wait now

[mikette in reply to JessH]

hi Jess, I'm from italy and I do have this kind of issues, too.

may I ask where she had surgery? I'm entrapped at perineal and perianal branches.