Hey everyone,

I've been sufferring for 9 months everyday. I had constipation and i strained then i started to feel burning, pulsing sensation and stinging.. about 3 or 4 cm inside the anus at 5 & 7 o'clock, the burning radiates to my genital area. Sometimes i have a feeling of incomplete evacuation, and bloating because the gases don't come out (maybe because the muscle spasms). 2 months ago i had a few slightly hard bm's which made the burning worse and i started to have a feeling of wetness inside the anus which radiates to my genitals but with no obvious dishcharge, and i feel there is something small moving inside.

I just lay on my side in pain until the muscles spasm and then the burning decreases, this is strange.. i read in other posts that spasms increase the burning and not the opposite. When i lay on my back on the floor and raise my legs on the bed for a few minutes the burning decreases then i start to feel something moving to 6 o'clock deep inside and i start to feel burning at this location.

I visited 6 doctors, no one used anoscope, they gave me different diagnosis: fissure, inflammation, hemorrhoids or muscle problems. I did colonscopy and it showed small hems grade 2 with inflammation of the mucosa where the hems are located. They gave me hydrocortisone, gtn, prep h, daflon, antibiotics, oral anti inflammatory and muscle relaxants but nothing really worked, i hardly got 10% better in the first few months. I tried sitz bath but it increased the burning, cold ice packs give me temporary relief. The dr who did the colonscopy didn't take a tissue sample to check if i have infection or crohn's, he said he didn't see anything wrong, can an infection or crohn's be seen without taking a sample?

I've been trying to learn about anal disorders, i read that the dentate line is located about 2 cm from the anal verge and the area above it should be insensate, so why do i have burning above the dentate line? The dr.'s said that hems don't cause this burning, so what's wrong? They seemed like they don't know and they are not giving me any solution.

The burning in my anus that radiates to my genitals is unbearable.. it hurts all these months to sit, stand, walk, lie down and bend, and now it's more painful especially walking. I'm terrified it's pudendal nerve damage, there are no specialists in this field where i live. I don't know what to do.. this pain has destroyed my soul, i never thought that such sadness could even exist.

If anyone have similar symptoms or have any ideas please let me know. Thanks.

Longing to heal
How are you getting on? Have you had any success with any further investigations? I can recognise some of your symptoms, which vary in intensity from day to day but have never had any diagnosis either.

Hugs.. I'm sorry to hear that you have no diagnosis either. I went to a specialist in pain management and he told MAYBE it's pudendal neuralgia, but it is very hard to diagnose. He advised me to try lyrica (pregabalin) and tryptizol (amitriptyline), I took them but with no improvement maybe because I took low doses - high doses made me constipated. He told me that if the meds don't work then he will do pudendal nerve block + ganglion impar block + caudal epidural block, but it's expensive and it's success rate is 80%. I don't know what to do.. I'm not even sure that I really need these nerve blocks.

How are you doing these days? Have you had any diagnosis? Any improvement?

I’m sorry to hear you are still suffering and no further forward with a diagnosis or subsequent treatment. It is truly a nightmare isn’t it? I haven’t had the mental energy for many months to tackle my problems of undiagnosed pain with any doctor. I can’t face them looking at me blankly and referring back to my notes with puzzlement. The last doctor I saw, requesting some information about my issues and how I could best manage them myself, made me feel such a fool. I believe my hope of being taken seriously was quashed right at the beginning when my first colorectal surgeon passed me to pain management with no obvious physical diagnosis. It doesn’t mean there isn’t one. Since that time a thrombosed peri rectal vein has been excised but if “you had one of those you would be in a lot of pain” I was told! Yes I was!! I can only speak for myself but I refuse to accept that there isn’t a physical reason for my pain and personally covering up the pain with nerve blockers isn’t for me, yet. It is my experience that if it isn’t “text book” then you fall into a black hole. I would be interested to hear what you decide to do. I too had constipation on a low dose of amitriptyline. Stay strong and keep fighting Longing2heal

I'm sorry you are going through all this. How are you dealing with the pain? do you take meds to relieve or decrease it?

You're right.. it is a nightmare, I just don't understand why doctors can't give us any explanation, I wish we know what we are dealing with, we need a lot of energy to keep fighting an unknown enemy.

Thank you for your encouragement. I think we have to try again and again to see what other doctors or specialists think - although this takes a lot of mental energy and time - until we find a good doctor who can give us the right diagnosis and hopfully a cure.

I am still thinking about the nerve blockers.. I will let you know if I decide to try them, I just want to give the meds more time, and I think I may go to other doctors.. not sure yet what to do.