I’m sorry you have to deal with this. Is there anything in your diet that may be contributing to this? Things like cinnamon, citrus, chocolate, nuts, dairy and more can exacerbate this problem. It may help after a bowel movement, to put a little water on your toilet tissue before you wipe. You’ll need to use a thicker brand as the real cheap stuff won’t hold up when you wet it. Several times a day, do some deep relaxing abdominal breathing. As long as doctors don’t see any physical problem, a good physical therapist (preferably one who specializes in pelvic floor problems) will be able to help you. There is hope and help out there. Best wishes,
I had PNE. I used capsicum pain patches put directly on my anus and lower buttock to equilibrate the burning pain for over ten years. No medicine I was given helped me.I’ve had decompression surgery and now I prefer icy pan patches when I get flares.
I have found that turmeric helps with inflammation, magnesium helps with keeping muscles relaxed, passionflower calms the nervous system and soothes anxiousness, Boswellia helps pain and valerian pills help with sleep. Melatonin helps with sleep to.
Have you been offered a nerve block into your pudendal nerve roots via your buttock? Guided blocks using bath anaesthetic and steroid might help.
Yes, the inferior rectal nerve portion of my pudendal nerve had been stretched by a foreign object ( migrated titanium metal Filshie clip ). It was stuck onto ligaments and fascia and it needed to be released with decompression surgery. The rectal pain was intractable, I felt electrocuted, it burned and I didn't sleep normally for years.
I didn’t have proper pain control. I was gas lighted and purposely misdiagnosed, neglected and left to suffer.I lost normal cognitive function within two years from severe sleep deprivation. I started losing whole bowel movements without feeling it. I was in utter agony.
Surgery helped me but it was done 3.5 years too late.
Decompression surgery was done in Minnesota in 2011. I’m Canadian and no one at the time was able to do decompression surgery in Canada.
I had to hire and pay a registered nurse consultant to help advocate for my decompression surgery as no specialist I saw in Canada would help me. They just didn’t care. They were covering up that titanium metal Filshie clips had migrated.
A clip was in my rectum and another had lodged in ileum bowel behind the neck of my bladder.
The clips were eventually removed but again years too late. I have a neurogenic bowel and bladder and many other difficulties with sitting, lying down, lifting, moving and sleeping. I’m lucky to be alive. I almost died in 2010.
You're brave man manage to arrange to get help you needed.I'm in UK and think decompression surgery not carried out on the NHS, hospitals in France do it but cost £20,000 which lots of us cannot do.
I am in process of getting some tests carried out by my GP and then hopefully be referred to specialist in hospital and see what happens after that.
Yes gabapentin 300mg at night has helped me enormously and I use recticare in rectal area as needed since it has an anethetic and it helps a lot for the burning
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