UCPPS - Prostatitis, Interstitial Cystitis Forum

Hello all, just wanted to make a quick update.

I mentioned I had an ultrasound of my prostate and everything was found well, just A LOT of inflammation *around* the prostate. In the arteries and muscles and whatnot. This was in the prostate -> perineum -> penis area which caused my penis to sorta "tighten" up or just be very hard while in it's flaccid state. Kinda like a turtled up thing, or like someone was pulling on my penis from the inside.

Well, I had a cystoscopy a while ago, and afterwards, I couldn't pee! Also, it burned a lot. The doctor said the burning was normal and said I could get Pyridium over the counter, but the unable to pee thing could be a dangerous side effect of the "surgery". Well, 2 days later and a lot of pain in the pelvis, lower back, and penis, I (once again) get sent howling in pain to the hospital.

Luckily, I had my papers that said I had just had "surgery" and if I had any of those symptoms, to be treated RIGHT AWAY. So they put me ahead and did everything they could but found nothing. I should have told them to check my prostate.

When I went to my uro the next day, he said it was definitely my prostate probably had inflammation or was irritated from the cystoscopy and gave me Uroxatral or "old mans drugs for the prostate" to increase blood flow and help shrink the prostate to let me pee.

Well... they worked! Uroxatral are Alpha Blockers and I've seen some people talk about Alpha Blockers around here, but they really worked. When I took them, my penis just stopped being shrunk and wrinkled and tightened. Usually it's like that and sometimes it gets so bad my penis feels cold and I start getting scared. My first doctor dismissed it as anxiety even though I never had anxiety before in my life, but when I got sent to a shrink, he told me I was not a tense guy and that I probably never had anxiety problems and that if anything I had acute anxiety onset by acute illness. Which basically means an illness like this affecting an area that important coming OUT OF NOWHERE causes a bit of anxiety but I'm strong enough to handle it.

Now that I'm on Uroxatral, my penis feels a lot warmer, and hangs normally like it used to. Instead of poking straight forward all hard, and tiny like it used.

I asked my doctor what the Uroxatral does, and he said it relaxes the muscles in the prostate and bladder neck, and opens up the arteries improving blood flow or something like that so that my prostate can get more blood/"attention".

All I know, is that while I still have pelvic pain(always in the left side, I remember reading a post around here where someone asked if it was always in the left side, yeah mines always in my left side, sometimes center), the fact that this made my penis "normal" again makes me so happy! I can finally urinate without having to rub and relax my penis and stretch it to make it squishy. And it finally hangs and swings like all the other dangly parts down there heh, making me feel normal and I've always been an athletic guy and I've taken many falls while running/biking so I know how to handle pain. I just don't know how to handle my penis doing strange things and not being able to get an erection because it keeps tightening and it hurts when it does.

... only one problem. It's starting to hurt. A lot. Not just in my penis, but in center pelvis near the base of the penis.

I have an appointment with my uro today, I think something is just plain wrong with my penis/prostate/muscles because the Uroxatral may be helping relax those muscles and improve blood flow, but I think it's pushing open the inflammation and tightness causing me pain. So like, I have a lot of inflammation and tightness; but when the Uroxatral relaxes everything and opens up the arteries to improve blood flow, it starts pressing up against my hugely inflamed muscles which cause me pain or something. I don't know.

Point is, this worked, and now my case is wide open again. My pain specialist has been working very hard since the day I met him to try to figure out what this is and this is something new so I'm getting more ultrasounds of everything and we're going to see how to deal with the inflammation and tightness problem and maybe some Uroxatral too. Point is again, penis is normal. Penis is not shrunk and tight and shrivelled and turtled up, it is now hanging and not tight. I like this, it doesn't make me panic and think that I'll never be able to use it to have kids or have a relationship(I am a virgin).

I think what makes the anxiety worse is that, I am 24 now. I am not trying to brag, but I dated a lot of girls all the time. Usually one every two months. I never had sex with them. I am a Christian and I was taught no sex before marriage, but now I feel like I've thrown that away and I'll never be able to enjoy a relationship or have kids(the normal way) so I feel like a complete idiot and I should have slept with them all to at least have had SOMETHING before this ruined my penis/pelvis. It's also really bad because it feels like I'm losing my faith, my religion, my Christianity, my God, so that's why it causes me a lot of anxiety and stress.

It's not the other way around, anxiety doesn't cause this to my penis. It's those stupid muscles down there all inflamed and tight. But hopefully with this new information, my uro and my pain specialist(who doesn't just want to manage my pain, he wants to remove it completely since he's done it before for some very weird cases and he's a very smart doctor) can work on some way to at least restore function to my penis.

The pain, I can deal with Tramadol. But for now, they put my on Vicodin for post-op pain and for this new pain from the Uroxatral(which I've stopped taking). My pain specialist said I could stop taking Vicodin and start taking Tramadol when I feel I don't need Vicodin anymore and that was about a day or two ago, Tramadol and willpower were enough to help with the pain because I didn't want to take Vicodin.


But, that's my story, that's the new news. Uroxatrol works on me and makes my penis normal and "function", but it's messing with my inflamed/tight muscles causing me worse pain than Tramadol at max dosage can handle.

Hopefully today at the Uro appointment, we can get started on some new diagnostic tests, all ultrasound since that seems to be what works to find what's wrong with me.

P.S. - Oh yeah, I've seen some people on this site post about a problem just like this. Penis shrinking and tightening up and just "turtling" and point straightforward and getting cold and really, some of you guys are pretty harsh on them. They're panicking and don't know what to do and people just say "deal with it, you have this now" and leave them on their own. I ask for permission to put up this story on the General forum because I think this is a whole 'nother deal that's new and most people don't have. The penile pain yes, but the penis shrinking and blood flow decreasing and cold feeling like it's a numb phantom limb no. I think it could help them when they come running here when this happens to them out of nowhere.

I've also found a couple websites about people talking about this and that was where people were talking about Uroxatral to help with the penis scrunching up and hard-while-flaccid issue. It was only luck that I found this a day before my cystoscopy.

So again, ask your doctors about Uroxatral if you are having this particular problem with your penis!! But if you're tightness and inflammation is especially bad like mine, it might hurt those muscles(and arteries/nerves) by opening up the arteries.

P.P.S - Oh yeah, I think this penis shrinking issue is different from the pelvic pain altogether. Some people on these sites, their penis hard-while-flaccid issue comes from a pinched nerve IN THEIR BACK/SPINE. I think maybe all the tightness in the pelvis, and I know some of you have it in your lower back too, is pulling(or pushing, inflammation) on their lumbar spine causing this problem. I had a MRI of my spine and they found a lumbar spine sprain but no herniated disc or bulge/tumor compressing the spine like some of these people on this help site. The doctor who did this MRI told me that a lumbar spine sprain is a path that usually always leads to a herniated disc so this may be my problem on the penis.

If I can get this fixed, I can deal with the pain from the pelvis with hot/cold baths, Tramadol, stretching, Yoga, therapy like the rest of you guys and finally stop taking benzos and GET ON WITH MY LIFE because I am 2 years away from my degree and if I have to live with this then dammit I will. But I cannot be dealing with constant attacks of anxiety being flooded into my brain when my penis is fine!(health-wise). It's not going to fall off, it's not going to die, it still works to pee because I am on benzos to help relax it, but it's just the flooding of the anxiety I can't take when YES I KNOW something is "wrong" down there, but no I'm not going to die so I tell my body, stop telling me I'm in danger!! Ugh. I can't study or go to school in this state. So hopefully with the Uroxatral and some anti-inflammatory treatment and some therapy for tightness and if this leads to my back, then that can get fixed so I can deal with the pelvic pain and get on with my life.

Here are the help sites (I am not a jelqer BTW, some people just got it that way, others by wrestling or doing exercise which I think I got it like that).

(One guy figures out what happens to him, look at the date, same person.)
http://www.medhelp.org/posts/Mens-Healt ... how/500581
http://www.medhelp.org/posts/Mens-Healt ... how/501773
http://www.medhelp.org/posts/Mens-Healt ... how/537139

(And the rest of the help sites where everyone has this penis issue. May be a compressed nerve related, but not always in the spine. Talks of Uroxatral helping, but since I have this "headache in the pelvis" issue tacked along with it, the Uroxatral helps for the penis issue, but it hurts me for the chronic pelvic pain. Ugh.) :*(

http://www.medhelp.org/posts/Mens-Healt ... how/452831

http://www.medhelp.org/posts/Mens-Healt ... ow/1122440

Once again, I think this is a problem most people on here don't have. I haven't read many cases of the penis acting this weird way on here. Just a lot of penile pain. I think this may be something different, that may or may not be caused by CPPS. Maybe it's just people with back problems that made this happen to their penis that happen to have CPPS, or maybe the chronic prostatitis / chronic pelvic pain syndrome caused their back problem and caused this to their penis.

Either way, I think it may be "slightly" connected to CPPS, or just not at all since some people have this problem, but no CPPS. I have this problem, AND CPPS. I've read at most 2 cases on here where people have this problem and CPPS. So hopefully those help sites I posted help and talk to your doctor about Uroxatral but mind you if you have bad chronic prostatitis / chronic pelvic pain syndrome it can hurt. If you just have the penile problem, then it could be a compressed nerve, sometimes the spine, or maybe not always the spine.

So yeah, now if people come to this forum crazy panicking about this, if it's just the penis shrinking and tightening and turning cold, maybe it's not CPPS? Maybe it's a spine problem or a compressed nerve problem, and this can help them fix it and not just be in pain and misery all the time.

Good luck!

Your anxiety about the state of your penis may indicate an obsessive condition that needs to be properly treated.

In the Orient, this condition, at its worst, is called "Koro"
http://en.wikipedia.org/wiki/Koro_%28medicine%29

Hi,

I would note that I do occasionally have this symptom of the penis 'tightening' and getting cold. It passes, has never done me harm. We have always believed that it's related to the muscular spasm in my pelvic floor.

It's worth noting that I have had detailed X-rays, as well as pelvic and lumbar spine MRIs with and w/o contrast. These revealed only some very mild issues, mostly a single area of disk degeneration. Unrelated to my symptoms, or certainly to this one in particular.

I'm not denying that there can be certain alternate causes for specific issues, but when all known suspects are weeded out, you are left with CPPS. Don't allow yourself to panic over this. The condition can cause all sorts of freaky (but harmless) sensations from time to time, which is just the reality of it.

Yes, I know that maybe they are not related, but many of these people who had this problem with their penis, the area that was causing this was in their back. Not always a disc herniation, sometimes just a bit of a bent or inflammation compressing or a muscle pulling it. My doctor is now going to properly look into this issue and send me to an orthopedist, while at the same time, my friends and family are sending me to a Chiropractor. I wonder if there are any "spinal cord" doctors or something, hmm.

But yes! It is because of muscular spasms on the pelvic floor (could it be a nerve causing these spasms?). Mine are particularly nasty and no matter what, they have not gotten them to relax, only with benzos with I hate and sometimes try to ween myself off them on my own, generally being a bad patient.

Jay, did you get yours to relax in some way? Because I would really like to get off the benzos or at least enough to just do "benzo weekend" like many on here do.

Also, yeah I do know it's harmless but it just hurts all the time and feels terrible and being bombarded by anxiety 24/7 is terrible. Especially when I KNOW that it's not going to do me harm and will pass when I take my med (one benzo at night, one in morning). But still, I can't stop the stupid anxiety. It's like, in some primal animalistic way, my body cares more about my penis than I (my brain) does! And they're constantly arguing so that's what I would like most, is to get rid of the constant arguing and anxiety. So far, the Alpha Blockers are doing me good.

And Webslave, yeah that sounds really bad, wow. I'm not that over the top. I already told all of this to every single doctor and mental health expert and yeah they admit that I'm very freaky and get a lot of anxiety over this to my penis, but they are hesitant to give me meds so they just work with me on talk therapy and other relaxation exercises to take my mind off it and relieve anxiety. They say I'm a very strong individual and my attending doctor lets me roam free on the Internet and bring him back articles for me to ask and for him to look and explore. So if doing this is causing maybe MORE anxiety, then I should stop. But according to him and the shrink, it is harmless and the doctor says anything could help with "fixing" this issue.

Though I don't think I will find a fix, since no one has, except for that Wise-Anderson Clinic. I do think maybe I can find some other ways to help this. Thanks again.

I think this penis shrinking issue is different from the pelvic pain altogether

The other possibility is a form of body dysmorphic disorder. Treatment is usually high-dose SSRIs + CBT.

One of the symptoms is a "resistance to psychological intervention", so check yourself for that.

Hi,

Sorry for responding a bit late. Been an atypically busy week.

As far as relaxation of the pelvic floor is concerned, I have good and bad days, but I've found a personal regimen which allows me to keep things tolerable. Hydrotherapy with hot water, in baths or a pool (such as at your local medical center) does awesome things for me. I also continue to perform regular manual therapy on myself, external and internal. Even if I happen to not find any trigger points, I've found it beneficial to regularly give those spasming muscles a little bit of a stretch. Speaking of, keeping up a nightly stretching regimen has also been of great benefit.

I'm on pain management, and have accepted that I likely will be for life, so I can't really give you advice concerning the benzos. My opinion is that there's little danger or shame in the appropriate use of medication, so long as you remain under the care and supervision of a responsible pain management physician.

I know it sounds cliched and corny, but acceptance probably helped me more than anything else. I had come to a point where I was obsessing over my symptoms, the possibilities of the future, and what I felt that I'd lost. Many hours were spent scouring the web for information, and more often than not, what I found did nothing but heighten my anxiety and fear (most always after reading about things I don't have). It wasn't healthy, and it was doing far more psychological harm than the condition itself. The fact it, this is the hand we were dealt, and we must play it as best we can.