UCPPS - Prostatitis, Interstitial Cystitis Forum

ok my horror story all started 3 months ago when I got a bladder problem, I then started to get palpitations and the shakes this then developed into a fever and flu like symptoms. It was then that I started to get pelvic pain burning in the anus and penis shrinkage, it was like I had jumped into cold water. the fever went away but I was left with tender glands cellulite in my abdominal tissue the burning feeling, a very cold shrunk penis and burning when I urinated, over time my penis started to get painful and felt like the tissue was now more lumpy and hardened than before.

I have been to the doctor had blood tests for over 30 different things many many urine tests, I have spent a night in hospital and I am now seeing a private urologist at great expense

I have been told I have got prostatitis. I feel that is not the biggest of my problems that's ok it can be fixed over time but my main concern is my penis shrinkage, the head of the penis is now very red and the tissue in the penis feels lumpy, I can't get an erection without stimulation and even then its hit and miss if it gets there. In the flaccid state it's harder like there is no sponginess to it. When it is erect it feels like the tissue is lumpier and there is a bend to it that was not there before all this, the urologist does not seem at all concerned about this and says that it looks normal. I have had an ultrasound that shows nothing abnormal.

The urologist can't explain to me why it should be like this but says it will get back to normal once all the other problems are sorted

I have searched the web and can't find any answer as to what could have caused this any help would be so useful at the moment

Is this a side effect of prostatitis that has been experienced by any of you here and has it got better or worse over time? I really need some help as its driving me mad not knowing what is going on any glint of help would be good as I have nothing no answers and no ideas

please help if you can this is the only place I have found so far that may give me some answers

edit

just to add a bit more info to this I still get pelvic pain, it comes and goes and feels like carpet burn across the abdomen. I also have difficulty in urinating sometimes but not other and I also am having the same effect on my gut, sometimes its fine other times if feels like I'm going to poo my guts out. Apparently my prostate is not enlarged but there is obviously something up with it

First off, relax and read this website, all of it you can. You will find a lot of answers and possible some relief for your problems. Uros generally do not help us. PTs and relaxation therapy do. I wouldn't continue to pay big money to a Uro. Your problem is more than likely muscular. Your prostate probably has nothing to do with it, or at least is no more than a minor issue in the big picture.

My prostate is fine too, but it started similiar to yours, with my bladder. You can get better. Like I said, read all you can on this site and figure out what avenue you want to take to provide yourself some relief.

Unheard wrote:my main concern is my penis shrinkage

The penis can become smaller and harder in the flaccid state if there are muscular spasms in the lower abdomen due to anxiety or panic attack. It is known as koro in the East and as hyperinvolution in the West. Google it up.

thanks that could explain a bit but the strange thing is its the normal flaccid length now but the girth is non existant.

i found a site last night that said that lack of blood flow to the penis can form hard collagen so it makes me wonder if all the time it was not getting blood it has effected the tissue this is a bit scary as I dont know if there is any way of revercing this process but its the only good explanation I have found so far, the urol did mention viagra but I'm not sure I'm too keen on that idea

isn't penis shrinkage pretty common though? Obviously, all the time would be a bit worrisome, but I know from personal experience that I go through several "sizes" each day, depending on temperature, recent ejaculation or urination, etc. My uro also said that redness and shrinkage can be caused by (of course) stress, nervousness and excitability.

yes penis shrinkage is normal to a certain extent but this is very unusual, it is like the penis is its normal length but not the girth. when I have a shower instead of relaxing and getting bigger as it use to it shrinks up and gets hard like as if the water is cold when it does inflate a little bit I can feel it feels very lumpy down the shaft

This all can be very scary. I agree that you should search this web site. You will find stories that you can relate to. I have read a few in the past. And remember, the relaxation techniques that some of us practice, that are described on this site, don't cost anything, can be done while you are doing whatever medical processes you are undergoing, and have helped some of us.

I wasted years of my life convinced that there was something very wrong with my penis.
It was very shrunk as you describe in the flaccid state, it has a slight bend when errect.
I was constantly aware of it, hated undressing in front of anyone and truely believed that it would never be normal.
For a few years now I've started to forget about it and have come to accept my body a bit more and subsequently its "come out of hiding" so to speak.
I often catch myself in the mirror in the bathroom and think "yeah not bad", something I neve believed I would do.

I'm not suggesting that your problem is related in the same way by your mental self-image. However you should know that my penis was permanently shrunk and withdrawn for years (and I mean right through puberty and beyond for about 7 years of so) due to some kind of muscular tension and disorder down there.

Today my penis is normal, I have no sexual problems at all to speak of.

So don't worry that any permanent damage is happening, it won't be, you just need to deal with the tension/anxiety issue and this website can help you with that.

See! Ginty's story is a good example. I agree with him that you probably don't need to worry.

Despite this, I still think you should see medical doctors to make sure something worse isn't happening. That doesn't mean that I think something worse is happening, its just important to check in with doctors to make sure you aren't having some necrosis with ischemia, or something like that. (I know you fear that possibility.)

Furthermore, you suggested possible ischemia so it is important to recognize that to address your fear, one rational approach is to rule this out by seeing a few doctors, and then move on.

Over the past few years (just before I got CPPS) my penis started retreating into my body when I was joggin or walking up a hill. Personally, I think blood flow and tight fascia to my cable-taught legs, combined with a relatively rigid tailbone, are the cause for me. But I ain't no doctor of medicine.

See your doctors. But at the same time, stretch and relax. These things will improve blood flow anyways.

i went to see a private specialist but he had no explanation for the problem, he was very confused about the lumpiness, I am being referred to a specialist in London.

I woke up the other night and had an erection of sorts but it was very very deformed I'm not just talking a bit, it was like it was fully erect and lumpy at my normal maximum flaccid size at this size it would usualy not even begin to get erect it would still be hanging. the only way I can decribe it is that the tissue in the penis is no longer soft and spongy but hard and lumpy, this restricts the penis from erecting to even half its normal size, when I get turned on by my girlfriend all I get now is a funny sensation that feels like it shoots from the penis down the legs

:cry

Unheard,

Do you have access to professional psychological counseling? If I were you, I would need it right now.

Can you talk to your doctor about that? I think it is important.

psychological counseling no I dont!

are you saying you think this is all in my head??

The urol even admited that my penis was lumpy and could not explain this so there is something going on other than in the brain

it is taking its tole on me though but I have come to terms with the fact things may never be the same, I have been doing all I can to help I have made a lot of progress with the pain I was getting to the point it is just back pain and the odd burning feelin in the bum. I go to HSP classes every day that is a great help in relaxation and there is no part of the body that does not get relaxed or streched

i have come up agains a lot of problems because the doc I was seeing had been putting everything down to stress he knows now that this is not the case and admits he does not know what could be going on. the urol I went to see was very concerned about what may be the problem and admited that he did not know what the problem could be that is why he has refered me to some one else. If he thought it was in my head he sure would have told me so and would have straight away because it is not in his interest to refer me to somone else for a problem that does not exist

No, I don't think it is in your head. Believe me, after all I have been through I would never suggest that.

I was suggesting that you are going through a traumatic event, and the medical doctors will be spending most of their time focusing on your physical condition. I thought it might help you cope to have a doctor who cared about how you were dealing with this very intimate and troubling event.

I say this because when I was having my worst problems, I really needed counseling to help deal with the anxiety of this terrible physical predicament I was in.

p.s. Have the doctors discussed Peyronie's Disease or Psoriasis?

To be honest I have not got the money to pay to go see one, The HSP classes are helping and the guy there says that you can heal your body through the mind. He tells me he was told by docs he could never be healed and so he got into it as relaxation then he found he got better, he totaly re grew his knee cartalage in a year, I dont know if this is true but it gives me hope and thats what I need.

the main problem at the moment is that I am getting what feels like nerve pain, I get like a electric currrent fealing in my penis and this runs down my legs I'm not sure what is best to stop this sometimes its not there but that just feels like my penis is not there all together

its all very odd and I just can't seem to get my head round it what happened

You should also investigate the possibility of having trigger points in the rectum muscles. I have a bad trigger point about half an inch inside the rectum and if I press on it or even a stool presses on it, the penis shrinks.