Please can someone read this and help me out..

Male pelvic pain, prostatitis, IC
concerned

Please can someone read this and help me out..

Post by concerned »

My girlfriend has posed here for me before. I have had one hell of a time dealing with all of this..

Please can anyone take their time and read this, I really need to vent... Get some help from more experienced people. :sad:

After dry rough sex, the skin started "peeling" on the penis glans. The day after I had a little red rash and some burning urination and just a general "tight" feeling when I urinated.

Went to doctors and they ruled out UTI, all STDS etc etc. Said it was probably just some form of irritation. They checked my prostate and it was fine.

I was given some fungal cream (had a fungal infection on my thigh they figured it might have rubbed) It didn't help. Tried some other creams too to no avail.

The redness got worse, it never really burnt a lot just a bit. My testicles where a bit sore too. I was put on antibiotics for a week or so. Anyway, I walked around with the redness for 3 months, saw more doctors but no one really bothered, they just said it was nothing to worry about and it would go away.

Then after 3 months of this, I had a weird sensation in the penis, like there was urine built up that wanted to come out it was just PLAIN discomfort that was killing me.

I saw an urologist Diagnosis prostatitis, he claimed I had white blood cells and blood in the prostate fluid. Antibiotics for 4 weeks, after 3 days I got WAY WORSE, I got a burning pain on and off on my pubic bone and just bladder discomfort too.

Came back to him after 4 weeks, and he said, no you do have an infection, all prostatitis are infections there are no non bacterial ones.

More antibiotics No help. EVEN MORE AFTER THAT. Nothing.

New Urologist. You clearly don't have bacteria, only 5 percent are bacteria. It might be an inflammation just take it easy and it should settle down with a bit of time.

Months passed by. New Uro at a really big hospital in Europe. Cystoscopy done, everything clear. Diagnosis, probably a prostate inflammation, prostate feels normal to the touch. More antiinflammatories given. Nothing

Back to Uro 2 days after cystoscopy, they are doing a study involving nitric oxide tests that are used to determine whether or not you have an inflammatory condition in your urinary tract and they wanted me to attend.

I did and after it he said my levels are very low and normal and that he certainly don't believe I have any form of inflammation or infection with these low values, they measure the air in the urine bladder with a special catheter and then check the levels.

I was told that there is a lack of knowledge about this, but that one theory is muscle tension and he sent me to biofeedback. Attended biofeed back, the first time they couldn't do a thing because I had NO control over my pelvic floor muscles. They where spasming like crazy.

After some training now, I completed biofeedback in 2 months and have good control of my pelvic muscles again they claim, at least the ones I have voluntary control over.

I was told to try a tens unit and did, no help.

I went to see a 4th urologist, he tells me he doesn't need to do a cystoscopy again because my bladder isn't the problem. If I try to hold it in, I can hold over 5 decilitres, he said that's all he needs to know. He said STRESS is something he believes in firmly, and that stress has caused my problems, and that they will fade away as my stress does. This was an older very nice doctor who talked to me for 45 minutes.

I went to a physio therapist who is doing some form of massage through my rectum, its pretty nasty but I gave it a shot, I have been going there 10 times now without much results, she does tell me I am VERY tense and that my redness is probably due to poor blood flow.

I also had a cystometry done, my bladder worked fine, I had an MRI done everything was clear. Several bladder scans show I empty my bladder fully. I have had so many urine cultures done its not even funny.

Had a Urethral swab by the head doctor, and he looked in a microscope and said he found nothing.

After that I have developed a slight feeling of heaviness in the perineum, but that comes and goes and a day to day basis. The redness on my penis is still there. It also burns when I urinate especially when I drink very little, or maybe when I drink pop it makes it burn more I don't know. With water it doesn't burn that much.

I did drink NOTHING but water for 3 months, and I am not worse now then I was then. So it might be in my head.

They keep telling me it is stress and that it will go away. I can honestly say that prior to getting the redness, I was more STRESSED out then I have ever been in my life. The past two years have been HELL for me.

Last summer I developed a muscle tension in my throat. It made it VERY hard to breathe and swallow and I had aaaall checkups done no findings. After 6 months, it just went away on its own. I have had this now for 9 months. The ONE thing that I can't take is the feeling of having to pee all the time. I just pee maybe 4-8 times a day but I make myself hold it in. I can pee quite a bit and I just have a weakened stream and dribbling and I feel like I have to pee within 5-45 minutes. Sometimes I get no relief at all. I do not know what to do anymore. I really want to get better for my fiancée's sake, she is with me all the time through all of this and I want to be better for her... I am fighting everyday My bladder burns on and off, I have a pressure on the pubic bone, perineal discomfort, penis discomfort on and off, and feeling I have to pee all the time...what can I do? I am a professional basketball player and it KILLS me. The past week I have been trying to play as much as possible, and as I play...its not all that bad.

Please I'd just like to get some input. I know the redness on the penis is the cause of this. It came and then it's stayed for 9 months now. I just need to get better. I am 23 years old by the way.

Thank you very much
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scotsman
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Re: Please can someone read this and help me out..

Post by scotsman »

concerned wrote:After some training now, I completed biofeedback in 2 months and have good control of my pelvic muscles again they claim, at least the ones I have voluntary control over.
You need to see a specialised physio as I can almost guarantee that your pelvic floor is full of triggerpoints. Biofeedback does not treat or remove triggerpoints.

Please have a careful read through this page: https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition.

Also look through the FAQ on this forum and the success stories.
concerned wrote:Last summer I developed a muscle tension in my throat. It made it VERY hard to breathe and swallow and I had aaaall checkups done no findings.
I've suffered from this as well (it comes and goes). I also had tests done in the early days, however, once nothing is found it's usually diagnosed as Globus Hystericus.

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
concerned

Post by concerned »

Thank you
I was tested for mycoplasma and it came back negative.

Yes I try, my physio therapist only works with urology patients and she mentioned triggerpoints but she said she wasn't good at them just described what they were kinda...
She gave me a little sheet about chronic prostatitis / chronic pelvic pain syndrome and said thats what you have so at least I got some kind of diagnosis finally..

Its just so damn hard...is redness of the penis common? like the skin texture has even changed from smooth to kinda rough and cracked.

Its just frustrating like hell....
concerned

Post by concerned »

"I've suffered from this as well (it comes and goes). I also had tests done in the early days, however, once nothing is found it's usually diagnosed as Globus Hystericus. "

Sorry did not see that part
Yes, thats what I had exactly I even had a gastroscopy done when they wentinto my throat to have it checked...my stress eased up late last summer, I was very happy and then BANG it was gone in a week...then I go stressed again and then I got this..jsut 3 weeks after!!!

So I am quite sure its stress related
I still feel my throat sometimes, but anow I know what it is and it always goes away in a day

So Iknow what muscle tension can do to you, thats what I am a ltitle more prone to believing this is just stres,s but its hard when you have real symptoms, like weaker stream burning urination when its concentrated and this damn REDNESS
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Post by hodologica »

Hearken unto the Scotsman. I have limited knowledge/experience with this, but it seems the trigger points are the glaring possibility, and you'd be crazy not to get evaluated for them. They can be quite tricky to locate in the pelvic floor, so the hard part is to find the right PT. You are definitely going to want someone who has found them in the pelvic floor before, if at all possible - everyone agrees on that. But further, David Wise of Stanford, co-author of "A Headache in the Pelvis," has stated that he thinks the PTs really qualified to deal with this stuff are precious few in number. By the way, I really recommend you read that book, which is short/sweet/inexpensive. Sorry youre lifes so outta whack, I can sure sympathise.
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concerned

Post by concerned »

Thank you
I just can't wait til when this starts to subside its been there for so long now and well, I jsut want my life back and I believe stress can sure be the problem, I've been so stressed for the past 2 years...
Its just frustrtating and I sure would like to know why its red and all that but I get no answers, just that with all the latest tests I do not have an inflammatory condition, they say the redness is from it being tense so the blood flow is restricted.
The redness, annoying as it is...is nothing compared to the discomfort I have, and the feeling of having to pee, and discomfort int he pubic area and penis, and perineum somedays..
I just dont know aynmore I want to get better for my fiancee
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Post by hodologica »

The redness is common, see viewtopic.php?t=953

Here's the bad news: it is quite possible, but not really likely that this will subside just thru the measures youve used. Your chances of recovery are excellent, but it will be a lot of work. Again, what you really want to keep in mind is what Scotsman told you. You are gonna need to find a more specialized PT, unless you want to bet on whether your current PT can learn to do trigger point stuff well (if he/she is willing) - personally, based on my knowledge of certain people's authoritative opinions, I myself would definitely not make that bet.

Intrarectal PT that does not specifically addressing trigger points may be helpful, but in most cases is quite inadequate. And even if you don't have trigger points (which is rare but possible in chronic prostatitis / chronic pelvic pain syndrome w/PFD), it would still be the case that pretty much the only kind of PTs knowledgable enough to definitely help you would be the chronic prostatitis / chronic pelvic pain syndrome specialists who do trigger point work.

And then there's skilled relaxation, a simple twice-daily home practice which seems to be very synergetic with PT. Then there's the attempt to relax the PF on a minute-to-minute basis. You reeally need to read the book, "A Headache in the Pelvis," for details on all this. The "Stanford/Wise-Anderson Protocol" outlined in that book has not healed every person who used it but it is far more successful than anything else; no formal studies have been completed but it has worked for most whove tried it for chronic prostatitis / chronic pelvic pain syndrome w/PFD. You can read about it all over this forum.
Last edited by hodologica on Sun May 23, 2004 8:47 pm, edited 2 times in total.
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Post by scotsman »

Good advice hodologica. There is a treatment protocol that can give us our quality of life back again but it does take a long time.

However, it only takes a long time to get rid of all your symptoms, you will start getting benefits from the advice/treatment protocols given on this forum and Marks site pretty quickly. From my first PT session (with a trained myofascial release physio) I had my pain reduce by about 20%.

The relaxation componet really is key as well.

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
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Post by hodologica »

However, it only takes a long time to get rid of all your symptoms, you will start getting benefits from the advice/treatment protocols given on this forum and Marks site pretty quickly. From my first PT session (with a trained myofascial release physio) I had my pain reduce by about 20%.
I've heard of many getting improvement that quickly, tho I'd add that I've heard some people say that the benefits of their treatment didn't become totally clear till 3 months after starting (i dont know, but perhaps many of the latter found really definite progress hard to discern because they were among the set who have highly fluctuating symptoms).

Finding the right PT can be a lengthy and frustrating process, so one would want to start ASAP. I've already seen two PTs who "do pelvic floor stuff" and I'm still trying to get a trigger point evaluation, tho at least I got my PFD confirmed by EMG/biofeedback (which, it should always be noted, can give a false negative for PFD). If the new PT I'm now waiting to see doesnt work out, I will relocate to be treated by a PT recommended by Wise.
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concerned

Post by concerned »

Pain isn't a concern of mine really, its just bothersome
Right now, there is no pain at all. I have discomfort sometimes, and sometimes burning in the bladder area but I can take that, its the discomfort in the penis and bladder that gets me, feeling I have to pee, and it does burn wheni pee, not when drinking just water though then it is usually fine.

I have hade so many urine tests, before and after massage and they have done pretty mcuh everything. Thank you very much for answering.
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Post by scotsman »

If you find burning when you urinate then it's worth trying prelief.

btw - my urinary symptoms were resolved with PT (see my sig for progress).

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation