It's back..

[Concerned2]

Hi everyone..
I posted here well over a year ago after I had suffered terribly from what was claimed after TONS of investigation to be sore pelvic muscles and the like.
After a while I actually got 99% better, and I have lived my life to the fullest for the past 14 months or so and had the best time of my life and had almost forgotten about this godforsaken crap. It went away when I STOPPED taking antibiotics and stopped seeing doctors which I thought was funny. They said it was my own stress that caused this.

Then one day I was in the shower...I felt the feeling of discomfort in the urethera hit me and then there it was again.
I didn't bother going to some doctor again I just sucked it up and it was HELL but after 2 and a half weeks, it was almost all gone again and I was very happy.

For 2 weeks I was all better, then a week ago BOOM there it was again but this time worse then ever. It burns when I urinate and this time its not just a constatn uretheral and perinieal discomfort its also a PAIN in the base of the urethera..

I actually went to a doc, and what do you know "YOU have prostatitis, its so obvious!" Me : But I have been checked with all kinds of treatment and they say my prostate isnst the problem..
The general practitioner says she is 99.9% sure I have it and blah blah I didn't even listen.

She gave me Cipro for 6 weeks, whopdedoo.
I took it for two days and I feel worse then I did before taking them..

I think I should just go off them ..

I dont know..I amsure it will go its just so BAD!

[Gegatso]

Don't feel alone...I'm on 6 weeks of Cipro as well, but I had a hell of a discharge going on along with the burning. If I only had the burning, I dunno what I would think to do. I guess it is a tricky situation. It's hard to think about relaxing and even trying the Stanford/Wise-Anderson Protocol when you have pain that's about a 7 or 8!

Not medical advice, just my experience.

[Concerned2]

Yes it is so frustrating!
I was just fighting it again and it had gone away and iwas okay for 2 weeks then POW back. This time its worse casue now I feel a burning discomfort in the urethera I pee and its horrible for the longest time then sometimes its somewhat "manageble" and then as soon as I pee its right back to that.
I dont think I am going to keep taking my Cipro since this PAIN came with that, it wasn't there before just the discomfort and slight burning.

I am thinking itll go away though. I got it 5 weeks ago and after 3 weeks it went, then it flared up now again and I am sure it will go I am just going through hell again and its killing me I though this was all behind me..

[CppsDad]

Were you doing anything during that year while the pain was gone? Any stretching or PT on your pelvic muscles? In my case, my progression was similar to you; I got it BAD for 4 months about 4 years ago, then it generally went away for 2-3 years before coming back worse than ever. I think I was at the stage where my muscle dysfunction hand't fully kicked in yet, so the pain was manageable and sometimes gone altogether. But during this time, the conditions that caused my chronic prostatitis / chronic pelvic pain syndrome pain got worse, until one day, it came back for good. My pain was VERY bad, but after 6 months of rehab, things are looking better. I am not pain free by any extend, but the pain is manageable. It waxes and wanes like most chronic prostatitis / chronic pelvic pain syndrome pain, but it doesn't come back to full strength much any more.

I've said this many times before: before you let this thing get a hold of you, take control of IT. When chronic prostatitis / chronic pelvic pain syndrome pain starts, you, like many of us, felt helpless, ignored by doctors, and the pain just controlled us. But things got a lot better for me when I started actively helping myself; be it stretching, relaxation, or getting PT. Then at least I was doing something about it and I didn't feel like a victim so much any more.

I wish I had been turned on to the SP before my second bout of chronic prostatitis / chronic pelvic pain syndrome came back, but like many of us here, we hoped when the pain subsided it was gone forever. Now I know, the pursuit of health must be a life-long habit.

Mike

[Concerned2]

Thanks for your reply.
I didn't do anything this year it was gone. I just lived my life to the fullest. I traveled,worked and played proffessional sports.
I still had slight discomfort in my uretheranow and then and perinieal disomfort but it went away almost completely.

I was fully checked when I got this, cystoscopies cystometries, NO test to ruleout inflammation etc etc.
I was actually sent to bio feedback and then uro physio therapy where my PT diagnosed me with CPPS. She said she felt my muscles where cramped up hardcore, and my bio feed back curve the first time was spasming off the chart.

I was going to her for months and months but at this point I only had the perinial pain. I didn't feel it get better and after that the symptoms passed when I stopped worrying and stopped going to docs.

I had problems for prolly 6 months, but only this "leaky discomfort" in the penis itself is what drives me nuts. I got that first and it stayed for maybe a month, with a hampered urinary stream.

When that passed I could live my life normally with some painand that only took a month or so the firsttime.

This time I ONLYwish for that feeling to go away.
I got it exactly 5 weeks ago it came back and I got super depressed.
After 3 weeks of hell, it was gone the leaky discomforty feeling the perinieal pain I could live with so I started living my life again!

Then one day, pow back again after 2 weeks of feeling better...and now its been a week of this "leaky feeling and pain" so I just want this to pass this one feeling and ill be manageble again. As it is now I am completely disabled.

As I said I was given Cipro for 6 weeks but idont know if I should take them,yet again all my cultures where negative for the 10th time.
Aslo I was given antiinflammatories and painkillers, this was from my general practisioner.

So here it is now, its beenone week and its bad but I do hope and believe somehow that againit will ease up in a few more days.

I try to take it easy but its ridiculousy bad.
I can sleep for 8 hours with discomfort but then when I urinate in the morning, it gets WAY worse..

Thank you

[webslave]

... played proffessional sports.

Did you take any performance-enhancing drugs? These drugs can trigger CPPS-PM.

[Concerned2]

Nope I didn't take any performance enhancing drugs.

Its just so hard going back from practicing 6 times a week to being virtually bedridden.
Bah.

Oh well last time it only lasted for 3 weeks I hope it will last for even shorter this time.

I HATE the word prostatitis.
Every doctor in the world told me I had it so many times, and now even when its PROVEN I do not have it when they have found the reason, they KEEP insiting on prostatitis and infections, making me STRESS about that again. Its just...bah why can't they just realize I have muscle spasm and cramps and that it just flared up?

The thing htat bothers me is the pain/ discomfort in the urethera, the other things like the perinial pressure I can live with even pains.

[CppsDad]

Start doing the appropriate stretches, self-massage, and physical therapy as soon as you can. Don't let it get worse. Hopefully, you'll be back to full strength in no time. My pain is not nearly gone after 6 months of work, but I am not bedridden any more, after having had many many weekends in bed in pain. Better to start working on the problem as soon as possible.

Michael

[Concerned2]

Thank you
I do not really now where to start...
My perinial pain is gone completely I dont have that at all the ONLY thing I have that kills me is this pain and discomfort in the base of the urehtera in this one spot, and it makes me feel like I have to pee all the time eventhough I know I dont have to.
That is manageble too what isn't is the discomforty feeling.

I still dont know whether I should take my Cipro or not that the docs gave me since it made me feel worse after just hours.


I am wondering if I should let it go by itself. I was this desperate too when it came back 5 weeks ago but then after just 2 and 1/2 weeks it was ALL gone almost and for 2weeks I was painfree and now its been back for a week..I do hope it will be gone in no time...

The thing is last time I got better when I saw this Uro who was younger and told me not to give in to what the older urologists say when they say prostatitis, he said I can drink coffee and coke, I dont really have to worry about getting cold, I should just go on and rest assured it will go away.
He was the one who sent me for biofeedback and PT as well and perfromed the Cystoscopy and Cystometry.

That is when I got better last time when IS tarted doing what I WANTED to do and didn't feel limited.

I know as long as the leaky feeling goes I can be all good agin it just makes me climb walls.

I am a little emotional this is so hard as you all know, when you have been painfree and boom there it is.
Its been very hard for me and also for my wife who helped me go throuh hell last time.

It just sucks, I am only 24 and I managed to do my sports again full time and then now, bam it was there again, I even forced myself to try and practice woith this last monday and I did it but it was beyond bad.

I think it will pass though within the week like last time that its just a little flareup like the last I had. This time I can't keep calm though and I am more bedridden cause it is more painfull this time.

[CppsDad]

I don't think letting it go by itself is going to help in the long term. Maybe this flare up will quiet down, but whatever condition exists that is causing the problem probably won't go away, thereby causing more flare-ups in the future. Furthermore, you run the risk of having the problem worsen, and start causing other problems.

I DO care, and I know that many others on this board have your exact pain symptoms. Heck, you might not even have CPPS, as there are lots of reasons for pain in the urethra.

But still, doing some minor things to help yourself can't hurt. If you don't know where to start, try this:

1) Go to the main page of this site and read the "new to this site" section. It details how muscles can refer pain and irritate nerves, thereby causing all kinds of symptoms imaginable, from pain during urination, to a golf ball in the rectum sensation, to pain in the perineum, testicles, scrotum, and rectum, as well as erectile dysfuntion if the muscle constriction is such that it reduces blood flow, and this is only a partial list.

2) Starting doing a comprehensive set of stretches for your pelvic floor. This involves squats, stretches for your groin, abdomen, and lower back.

3) Do some self massage of your abdomen, buttocks, and perineum.

4) Have your PT evaluate you for internal trigger points and/or muscle constriction; you need to work these muscles out. Many of us on this board have spouses that do the work for us, but this only works after a) you've had a number of sessions so you feel comfortable with what needs to be done, and b) your spouse has a few training sessions.

5) Start focussing on keeping your pelvic muscles (abdomen, perineum, rectum, etc...) relaxed, through moment to moment relaxation. The point here is to not overstress these muscles when they don't need to be stressed.

These above starting points are good habits for life, and they won't hurt you; even if you don't need them. But if doing any of these things causes worse flare-ups, it probably means you are hitting the right notes and need to dig in and keep working on it.

The odds are that your current flare-up will go away. chronic prostatitis / chronic pelvic pain syndrome waxes and wanes like that. But when it does, don't waste the good time and ignore your need for loosening up the pelvic region and keeping the blood flow going.

Webslave mentioned performance enhancing drugs; I think a lot of the issues with these drugs occur not because of the drug itself, but because people take them and then go and work out for 20 hours a week, lifting harder and longer than ever before. This can put a lot of stress on pelvic muscles that are not capable of handling it, hence increasing the chances of chronic prostatitis / chronic pelvic pain syndrome kicking in. So, if you are working out hard, pay attention to your pelvic muscles, and what they are doing and how they are being used.


Michael

[Concerned2]

Thank you for your reply.

Yes I have been down this road, read every page on this site and other, seen probably 6-7 urologists and well it was my physio therapist who told me about trigger points and stuff, and that my muscles in there where super tense and she was streching them 2 times a week for me, for 2 months.
Then my worst symptoms where gone though and I havent had it since.
I have had the golf ball in the rectum feeling I guess, it is more like a pressure and it comes and goes and I can manage it. I have testicle pain on and off too but I can take that too.
I have had thigh burning and bladder burning as well, pain on ejaculation, weakend stream etc etc.

When this came back now I saw the stream weakend as well.
I can take the pains though that is the annoying bit, what I cannot take is this burning irretable feeling in the penis itself it really drives me crazy I can't enjoy anything.
If that passes and it will soon enough, I will be able to do more stretches etc etc etc.

My PT gave me a sheet about chronic prostatitis / chronic pelvic pain syndrome and said that is what she thinks is my problem. That was before I had heard about it.

They checked my bladder for IC like symptoms too when I asked them too jsut to make sure, and there was a new test they where working on with NO gas that they fill the bladder with and see if there is any inflammations and the like but that was all clear.

Also my bladder can hold 5 deciliters or more of urine without bladder pain so they said that wasn't the problem.
My prostate has not once felt swollen or sore acording to any of the urologists.

I know this will go down its just so hard and blah everything feels down in the dumps. As soon as it does ease up, just this burning leaky feeling I will go to my physio again, as it stands now its just too bad to even think about a trip there.

Today wasn't too bad I sucked it up but everytime I go to the bathroom it burns more and it comes back again for an hour or so then it stays at the same level.

I really appreciate you guys supporting us people. This site made all the difference to me last time I had it.

On a side note, I hade a problem with stress before I always stress and stress and stress. Before I got this even a muscle in my throat spasmed and stay clenched for 6 motnhs making it hard to breahte and swallow.
That eased up too but comes now and then.
However I am sure this will go down, burning in the urethera is just so annoying as I am sure you guys know.

I just dont lik ebeing on antibiotics when I feel that the problem isn't that.
I have been on them for so long before and there has never been a bacterial find in any of my urine or prostate samples, there has never been blood or white bloodcells or any sign of inflammation.

The only problem that has been noticed is that my pelvic muscles where screwy on biofeedback especially the first time I went plus the PT said they where tense like crazy.

It actually started getting better last time when I started practicing basketball agian that was my turning point, but again, then I did NOT have this cripplign leaky feeling. That feeling has never stayed for more then a few weeks though and I am sure it will go soon this time too...

I have a wonderful wife who is very supportive when things are hard and I am luck I dont know what I would do without her. I feel bad for her though cause I want to get back to myself again. I will its just a little longer I know it.
Last time it started hurting I was so depressed and said it was back and was going to stay for years but she wouldnt have it and kept reassuring me 10 times a day it will leave and it did.. :)

This got super long sorry but I just had to get some of it out.

[Concerned2]

I found these, my old post(s)
viewtopic.php?t=1853

[CppsDad]

A few things from your post:

my physio therapist who told me about trigger points and stuff, and that my muscles in there where super tense and she was streching them 2 times a week for me, for 2 months.
Then my worst symptoms where gone though and I havent had it since.

This is a good thing. That means your problems respond to PT.

I have had the golf ball in the rectum feeling I guess, it is more like a pressure and it comes and goes and I can manage it. I have testicle pain on and off too but I can take that too.
I have had thigh burning and bladder burning as well, pain on ejaculation, weakend stream etc etc.

These are all classic chronic prostatitis / chronic pelvic pain syndrome signs, and will require treatment as described on this board.

I can take the pains though that is the annoying bit, what I cannot take is this burning irretable feeling in the penis itself it really drives me crazy I can't enjoy anything.

There is no guarantee that the pains won't get worse. Many of us here have symptoms that change over time. In the beginning, my pain was "manageable". This seems like it was a good thing, but this was BAD. It allowed me to avoid doing the hard work to get rid of this, like using pain killers to avoid the symptoms. Don't assume that your burning urethra will continue to be the worse problem. If you don't take charge, other things can become more painful. My advice is to stop this before it goes further and causes more trigger points elsehwere in your region. If you already have had pain during ejaculation, however small, you are at risk for the kind of major flare ups that knocked my sex life on the shelf for 6 months. Prior to that, I was depressed I couldn't play tennis any more. Well, THAT depression was quickly and easily replaced by the fact that I wasn't having sex. Perhaps you like basketball more than I like tennis, but losing my sex life was devasting and kicked my depression to a whole new level. I worked HARD to help myself, and my sex life is returning more and more each month. Next month I plan on starting tennis again. Look at this for the future, and stop expecting it to just go away. It might go away, or it might not. But either way, if you are doing things to help yourself, you can be sure you are doing the right things. And continuing to do the things I suggested above is a good practice for the rest of your life.

They checked my bladder for IC like symptoms

IC and chronic prostatitis / chronic pelvic pain syndrome have a lot in common. My abdominals are by far my most painful problem; they cause more flare ups than anything. I would not be suprised if other doctors diagnosed me with IC. But he problem is still the same; trigger points and taut muscles in my abdominals.

On a side note, I hade a problem with stress before I always stress and stress and stress. Before I got this even a muscle in my throat spasmed and stay clenched for 6 motnhs making it hard to breahte and swallow.
That eased up too but comes now and then.

I don't need to say much here. Your body is TELLING you something. Whether your throat clenches, or your pelvic muscles, the results can be devastating. You can't get more clear signs than this.

Mike

[Concerned2]

Thank you.
Yes you are right I need to take care of it, it goes up and down these days.
Yesterday it wasn't too bad and I tried staying possitive but last night I couldnt sleep at all, I got super bad urgency and penile pains that I still have this morning but they will calm down I am certain.

I am quite sure I have chronic prostatitis / chronic pelvic pain syndrome and I do need to do stretches and the like, I think my number one concern is getting rid of my stress though.
It is quite frightening how it can come and go so quickly.
The pain can just jump on me in litteraly a second and that is not very nice.

I am however trying, and I am going to go to my PT as soon as the burning feeling goes away, as it stands now I can't really even leave my house which is terribly hard.

Concerning the pain on ejaculation, yes I did have that and it was terribly bad I still have it on and off sometimes and it was devastatng for me too but I have learned to manage it somewhat.

I am going to try and relax and just let the tip of the iceberg sink down, and then go to my PT it will be hell til then but I am sure it will start to ease up a little like last time.

Today is just even worse, casue yesterday I tried my best to not think of it, I kept myself busy and I didn't urinate for 5-6 hours, only went a few times yesterday.
Then when I did go in the evening it burnt and I got the terrible urgency back that kept me up all night.
Plus the pain in this one spot on the penis, at the base thats where I always get my pain.

Oh well it will start easing up.
Stress does seem to be the number one fact for me.
Which stretches are good? I know a lot of basic ones I use at basketball can I use them or does it need to be special ones? Or can I use the ones Id normally use for my lower back/abdomen tighs and groin?

[Concerned2]

Hey again,
Today has been THE worst day ever through my whole experiance of this CPPS.
I coudlnt sleep last night and it hasnt eased up at all today its been runnign to the bathroom every 10 minutes all day. Yikes, and my penis hurts in this one spot in the urethera.

Its hard, I try calling my parents and talk but its SO hard for people to grasp how bad this really is.
My kid brother though, he has seen me at my worst and he suggested going out just me and him to our summer house for the week, and take it easy. He said even if its at its worst I will be dragged there and even if I can't do much it going to be a hell of a lot better for me then just sitting around the house "moaping" as my wife calls its sometimes, tough loving.

I think I will take him up on the offer. Getting out of the city for a while even if I just sit around and do little things it can only be good for me I figure.

I started taking my Cipro today, and antiinflammatories AND painkillers, 8 pills aday, which isn't really that nice.

Does anyone know if Cipro can make it feel like you have to pee more often or if it can cause burning urination?

Also, coke and other soft drinks, are they okay to have? I know I had them through this whole year without any discomfort or pains really, I even had alcohol and coffee.

Thank you for replies and taking your time.

Also, I would like to state that during the past days my pelvic pain, perinial pain and testiclular pain has dissapeared. HOWEVER, the one prob I reall yhave that is crippling is the pain and discomort in the penis, plus now today, frequency/urgency.