Is this what I have? (detailed description of symptoms)

[Misanthropy]

Gender - Male
Age - 26

Weird sensations - No real pain as such. Virtually constant slight burning sensation (I say burning sensation rather than pain, I am not in pain) on my lower left abdomen at the front (sort of in waistband area). To describe the exact location, I draw imaginary vertical line from the base of my penis to my belly button. Half way along this line, go out at right angles to left side for about 4-5 ''. Here is a small, vague area of weird sensation. Changes in intensity, but almost always present. I am able to ignore it because it is not pain. Sometimes also same sensation (but less) on my lower back, as if a direct line had been passed from the front area to my lower back. This comes and goes. Sometimes slight numbness feeling on left inner thigh, buttocks, perineum and anal canal. Twitching of individual muscles in lower limbs, buttocks, perineum and anal canal, especially experienced when lying down after sitting for a long time. Sometimes sharp needle pain for a second in any of these places, inc feet. Often these symptoms are more pronounced after sitting for a long time. I just ordered a "coccyx cushion" to see if this will help. I am sitting on a donut of rolled up towel right now to take pressure off coccyx. I *think* is is better, but not sure. I will be able to assess this better when cushion arrives in a few days.

Bladder - for as long as I can remember: slight burning, urgent+ sudden need to urinate which send shivers. Then quickly sensation is gone. Over last few years, urgency has got worse, I am not incontinent, but for a few moments it is very uncomfortable while the urge to urinate is so strong. The muscles are strong because of TENS exercises. Often, despite very strong need to urinate, only a half bladder amount is passed. Sometimes I need to go several times per day and each time only passing a less than full amount. Caffeine is not good for this, I don't drink any.

Bowel - About 3 years ago, all this started... I never really cared about my health before this, just had a good time like everyone else. Gradually, many people started saying I smelt of feces, and eventually there was often small yellow stain in my underwear. This period destroyed my confidence, I am still in total shock about how all my colleagues, so-called friends and family turned on me. Work was very bad. I had no idea the people I previously thought were just normal people could be capable of such cruelty. I was too cowardly to commit suicide several times, but now I feel like I should have done so. They all get to carry one with their life and I have nothing but the bitter memories. They should know that you should not treat people like that. I have had no quality of life, no job, no friends and no hope since that time. I've had this operation done twice http://www.solestainfo.com/hcp/administ ... lesta.aspx and there is no longer any stains in my underwear. I have this strange sensation of wetness in my anus when I am walking around sometimes, but if I go to the bathroom to wipe, there is nothing to wipe and it is perfectly dry and clean. I do not understand it. I am sure that my smell symptom is either much reduced or possibly even gone, but my mindset has become very paranoid in public. This condition describes perfectly what my mind is now https://en.wikipedia.org/wiki/Olfactory ... e_syndrome Sounds stupid, but I hear every few moments people saying comments related to feces, odor or toilet. I know these comments are not what my brain tells me. I went to see a MD for first time in a long while (I feel like many before were implying that I was wasting their time, and that there was nothing wrong and I wanted attention). Dr said I didn't have schizophrenia, but that I needed therapy and pills for hearing these comments and anxiety all the time. He said I didn't smell at all, but I noted that he and his assistant both sniffed when I first walked in the room. Maybe was my deoderant, hope so.

Sometimes it feels like the left side of my anal canal is numb. I use TENS to keep the strength of my anal sphincter up. On the left side of my anal canal there is sharp pain during TENS, and also the front area of burning sensation on my lower abdomen becomes much more noticeable.
I don't see this colorectal surgeon anymore because I can't afford it. He said he thought the pain was "neuropathic pain", that maybe I didn't have any IBS, but that I "may never get any diagnosis". By end of treatment he said I didn't smell, but I am not sure about this. I used to strain a lot on the toilet. This was because of constipation from IBS (or so I was told). I have learned the potential damage from chronic straining, and now I use a squatting position and avoid straining as much as possible. If I behave with my diet and take fibre supplement, only need to have one bowel movement per day. If I eat junk food and caffeine, sometimes up to 3 amounts per day, I feel maybe they are incomplete BM each time.

Sexual - no sexual symptoms, not that it matters anyway

General health - I'm in pretty poor cardiovascular shape probably. I used to love running every few days, but I don't want to see neighbors anymore, they just talk and gossip. I lift weights in my room every other day (like prison, because nothing else to do).

Things are getting slowly more worse over time. If you had asked me 2 years ago if there was anything physically wrong, I would not have been sure. Now definitely something has changed, but has happened so gradually perhaps I didn't notice all these things. It is only because I spend all my time alone that I do now maybe.

My main source of health info is Wikipedia because I have no job and I rarely leave my room from anxiety now. Seems like pudendal nerve problems might be covering some of my symptoms? Does anyone have any advice about this, or suggestions what is wrong if not pudendal? Thank you,

[Lernica]

Your symptoms don't sound like PN to me. I read the Wikipedia entry on the olfactory phantom syndrome that you provided the link to. It's a very interesting syndrome; I've never heard of it before. Are you getting the psychotherapy and medications recommended in that entry for treating the condition? According to the article, the sooner you start therapy the better the prognosis for getting over it. Please get some help now. Psychotherapy would also help with the symptoms of anxiety and social isolation that you are experiencing.

[Misanthropy]

Your symptoms don't sound like PN to me. I read the Wikipedia entry on the olfactory phantom syndrome that you provided the link to. It's a very interesting syndrome; I've never heard of it before. Are you getting the psychotherapy and medications recommended in that entry for treating the condition? According to the article, the sooner you start therapy the better the prognosis for getting over it. Please get some help now. Psychotherapy would also help with the symptoms of anxiety and social isolation that you are experiencing.

Thank you for your response. I agree no neuralgia (which means pain or so I understand). I have no pain, only burning sensation. From Wikipedia, it read to me like something to do with pudendal nerve because this supplies the areas of the body. I understand there are different conditions to do with pudendal nerve: entrapment, neuralgia, and neuropathy. Possibly it is neuropathy or entrapment. I have also spent most of my life sitting down, whether reading textbooks or writing, or at laptop/PC etc etc. I don't ride a bike, which is a big cause according to some. The history of chronic straining on the toilet from IBS is also a risk factor apparently. My problems get worse from sitting down, and then they are fine when I lie flat. This is specifically mentioned. I have never read any medical condition in all my time scrawling the internet for answers that fits what I have better. I will do more reading and searching to learn about problems with the pudendal nerve I think.

To clarify, my problems I believe are 2 parts: 1. physical and 2. mental. The mental is the result of the physical, not other way around. Even if I took pills + therapy, there would still be physical left. I was mentally healthy before my life fell apart from the result of the physical symptom. I went out every day, I had friends, talked to family etc etc. To get an idea of what I went through, a person would have to do this: 1. pick up some dog mess from side walk in paper bag, 2. put paper bag in pocket and carry it around with them everyday. Work, home, friends, shopping, public transport... You have no idea how big of a taboo it is and how badly people treat you. I am not surprised I am still mentally traumatized from this time.

The colorectal surgery stopped any mucus leaking, and as I mentioned above has probably stopped the odor too (but not in my mind, if that makes sense). However, the colorectal surgery was just making the anus tighter, it was not addressing any underlying cause, and the surgeon did not look for any nerve cause. These weird sensations are very slowly getting more prominent. I need a diagnosis, and maybe if there is adiagnosis I can know how to treat it.

Peace

[nyt]

This sounds like such a difficult journey you have had. I am so sorry to hear about all of this.

You might want to consider finding a doctor that specializes in pelvic pain to see if they can help figure things out. If you go to the International Pelvic Pain Society website there is a link that you can find physicians in your area that specialize in pelvic pain. Many of these doctors are ob/gyns but not all ob/gyns will treat male patients with pelvic pain. Otherwise, you should really see a regular pain specialist. They should be able to help figure these sensations you are having. Have you had an MRI of your back to make sure the origin of your problem isn't from your back. There are a lot of people who think they have PN/PNE and then find another cause when they have an MRI such as bulging disc, tumor, Tarlov cyst, plus many other findins.

You also might want to find a physical therapist that specialize in pelvic floor evaluation. They can be a great resource and detective to figure out the root cause of what is going on with you. I am surprised they did the anal procedure on you without knowing what the physical cause for the fecal incontinence. Or did they and I just missed it in your post.

You really need to find someone to talk to about the anxiety, isolation, and emotional trauma you are dealing with. You might need some medication for the anxiety to help get you through the worst of this. If the smell thing is only imaginary now then you really need to have someone help you deal with this. It sounds like money might be an issue but there should be clinics if you can't afford to see anyone that can help you find someone to talk to. Have you looked for a local support group or asked the doctor that did the anal procedure if there is one around. Anyone attending such group would have understanding of what you have dealt with. Maybe even a local IBS support group. All this isolation is not good.

Keep us posted.