Recently Diagnosed

[Futwox]

I am 34 and have been recently diagnosed with Prostatitis. I am a computer system admin and played online games quite a bit at night. I live in Ontario so seeing a Urologist can take some time. I first felt my symptoms on March 3rd, 2006.

When I first got the symptoms they came on very fast. Within 1 week of me feeling that something was wrong I had pain in my penis 24 hours a day and it was preventing me from sleeping. The pain was a shooting pain at the tip, a burning pain just below the head on the urethra side and pain at the sides at the base of the penis. I was sitting a lot when I had initially felt my symptoms. I also felt a dull ache in the testicles on occasion. I used to sleep on my stomach but switched to my side. I would feel a dull ache in my hips as well. I urinate a little more frequently, about 6 times a day.

After realizing that when I am not sitting but lying down things felt a little better I stayed in bed for 4 weeks. At then end of about 2 weeks I felt a lot less pain in my penis, but I started feeling a tingling in my prostate. I basically substituted pain in the penis for the tingling discomfort in my rectum. Occasionally I would feel pain in the prostate.

I got lucky and was able to get an appointment with a Urologist on Aprl 12th. The Urologist went through a checklist of questions and performed a rectal exam of the prostate. He told me then that I had prostatitis and put me on 6 weeks of Cipro. They found microscopic blood in my urine on my first urine test but not in the second. The cytology report only showed inflamed cells. One thing I didn't like was that I had written down a diary of my symptoms and their progression, but the Uro didn't seem to want to hear it. I would have thought the more you knew the better.

I went and saw the Uro 3 weeks later since the Cipro didn't seem to be doing anything and my next appointment was scheduled for July and I didn't want to wait 6 weeks to try the next thing. He put me on alpha blockers. I have been on them 3 weeks now with no noticable change. According to my Uro anti-inflammatories are next. I have a cysto scheduled for August along with a pelvic ultrasound, but no prostate ultrasound.

At the moment I rarely/never sit. I treid to go back to work and sit. When I did this the pain symptoms in the penis came back over the 3 days I tried until they were getting very bad again. At the moment I am trying standing at work all day, but even that sometimes leaves me sore.

A coupple of things I notice. Even when pain in the penis is less it is ALWAYS inflamed. If I'm not thinking about thiings and put a pillow on my groin I will notice it within a few minutes. When things aren't as quiet underwear/blankets aggravate things. Basically it seems as though everything is hypersensitive. I have also noticed that many times a day I will feel like my prostate is farting. Like air or something is being forced out. Sometimes I get prostatic fluid discharge, usually if I haven't masturbated in a few days. Sometimes I will actually feel a shooting pain down to the tip of my penis and there will be discharge. I'm not sure if this is common or not and if it means anything. I have never seen anyone post that their prostate does this.

One other thing I should mention is that I have had IBS since I was about 12. It makes me very susceptible to diarrhea. I take Metamucil every day which helps but is not a fix. Week to week I can't tell you how often I was irregular since it is common. Over the last 4 years I have rarely exercised (I used to quite a bit) and when I did I had hemerrhoid flareups which have only started over the last 3 years. In that time vomitting and nausea have also become a part of my life with flareups lasting a day about 5 times a year. With all the talk of pelvic floor disorders I'm not sure if my IBS may be contributing.

At this point I'm not really sure what I may be able to do. There are so many theories out there and I find it hard to say that my constant symptoms sound like any of them. I am trying to stay positive but it is difficult when you have contant discomfort/pain for almost 3 months and sleeping 3+3 hours a night is considered a good night's sleep. At this point I don't really have a life. I can only hope that someone is able to find something to cure or at least make my symptoms liveable.

Trevor

[webslave]

Word from the wise: computer games are an absolute no-no for people with this condition! Nothing is more sure to tense up the pelvic muscles and inflame the genitourinary system.

Other than that, your case is very typical. The IBS may suggest a problem with gluten. I had that and it went away when I eliminated all wheat, oats, barley and rye. Give it a try for a few weeks; see if the consistency and frequency of your stool changes. If gluten isn't the problem, you could try serially eliminating other known problem foods, like milk and milk products, etc.

Finally, for treatment look to trigger point therapy and phytopharms like Quercetin.

Also, a career in computers is another known risk factor for CPPS/pelvic myoneuropathy. Sitting all day concentrating promotes pelvic muscle spasm. You may have to look to another career if all else fails.

[LightningTree]

I am 34 and have been recently diagnosed with Prostatitis. I am a computer system admin and played online games quite a bit at night.

I do computer research and used to play video games until late into the night (often online games with competitive stress.) Welcome to the club! In my case, the worst game was BF1942, but other more casual games, EQ, UO, etc, were also an issue.

When I first got the symptoms they came on very fast. Within 1 week of me feeling that something was wrong I had pain in my penis 24 hours a day and it was preventing me from sleeping. The pain was a shooting pain at the tip, a burning pain just below the head on the urethra side and pain at the sides at the base of the penis.

Yep. I had the same sudden onset, as did my twin brother (we both do the computer thing.) I did have sime dribbling of urine in the minutes after urinating in the month before pain, and some testicular ache, but I had ignored it at the time. But the pain came on suddenly, virtually over night.

I was sitting a lot when I had initially felt my symptoms. I also felt a dull ache in the testicles on occasion. I used to sleep on my stomach but switched to my side. I would feel a dull ache in my hips as well. I urinate a little more frequently, about 6 times a day.

Exactly, see so far your symptoms are exactly as expected.

After realizing that when I am not sitting but lying down things felt a little
better I stayed in bed for 4 weeks. At then end of about 2 weeks I felt a lot less pain in my penis, but I started feeling a tingling in my prostate. I basically substituted pain in the penis for the tingling discomfort in my rectum. Occasionally I would feel pain in the prostate.

This is the natural migration of the pain. For me, the pain moved to the rectum after about 2 months, and stayed largely there and in the perineum for the next year.

Ending your sitting was a smart move, in my opinion.

I got lucky and was able to get an appointment with a Urologist on Aprl 12th. The Urologist went through a checklist of questions and performed a rectal exam of the prostate. He told me then that I had prostatitis and put me on 6 weeks of Cipro. They found microscopic blood in my urine on my first urine test but not in the second. The cytology report only showed inflamed cells. One thing I didn't like was that I had written down a diary of my symptoms and their progression, but the Uro didn't seem to want to hear it. I would have thought the more you knew the better.

You just experienced what happens when Modern Medicine meets the unknown. Fairly dissappointing, isn't it? This is the experience most of us have with Urologists. No offense to those Urologists out there that have the unusual property of giving a crap.

I went and saw the Uro 3 weeks later since the Cipro didn't seem to be doing anything and my next appointment was scheduled for July and I didn't want to wait 6 weeks to try the next thing. He put me on alpha blockers. I have been on them 3 weeks now with no noticable change. According to my Uro anti-inflammatories are next. I have a cysto scheduled for August along with a pelvic ultrasound, but no prostate ultrasound.

That's good. The urologist is running through all of the possibilities for things they know how to treat. Anti-inflammatories can help some, but not as much as you would like.

At the moment I rarely/never sit. I treid to go back to work and sit. When I did this the pain symptoms in the penis came back over the 3 days I tried until they were getting very bad again. At the moment I am trying standing at work all day, but even that sometimes leaves me sore.

The good news is you are on the right track in avoiding sitting.
I've got some rough news for you, though. Based on statistical evidence from Nordic government studies, its going to take probably about a year to a year and a half for you to be abole to sit for long periods again. You could get lucky and it could go away quicker, but this is unlikely.

When I first got this, any extended sitting would cause a severe flare-up.
Also, during this time, defication was painful, my perineum hurt most of the time, rectal pain in the evenings was common, and when I sat down, it felt like there was a numb balloon inside my pelvis.

In the first year I often had the sensation that a heavy bowling ball was inside my pelvis and pushing down on my perineum and rectum. God, that hurt so bad!

I remember going out with some friends after about 9 months of this, and we wandered around NYC streets. My wife and everyone felt great, but this bowling ball in my pelvis was pushing down on my perineum, and it ached and tingled and felt cold and hot,etc, and it hurt so bad. I just held it all in. It was a nightmare.

I now have none of these symptoms.

After avoiding sitting for 2 years, and practicing the Stanford/Wise-Anderson Protocol to help things calm down and stay that way, I can sit for several days with the resulting symptoms being only mild afferent sensationsi nthe penis. Still, I avoid sitting as it causes new damage.

My opinion is that your condition will not be compatible with sitting like others do for many many years, at the least. Others may disagree with me on that, but I have avoided sitting for two years and am now pain free except for when I go back to sitting too much. I still avoid sitting. This is not as traumatic as it might seem at first, we can discuss this later if you like. Trust me, once you are pain free and have lived with an adjusted life style for more than a year, its just a bit quirky is all. THere are also tricks and tools you can buy to make sitting easier (but message me on that, many things commonly sold don't work so well. The best solutions are home made.)

What many of us do agree on is the importance of all three key parts of the Stanford/Wise-Anderson Protocol. Muscle relaxation, moment to moment relaxation, and psycho-physical tension reduction.

A coupple of things I notice. Even when pain in the penis is less it is ALWAYS inflamed. If I'm not thinking about thiings and put a pillow on my groin I will notice it within a few minutes. When things aren't as quiet underwear/blankets aggravate things. Basically it seems as though everything is hypersensitive. I have also noticed that many times a day I will feel like my prostate is farting. Like air or something is being forced out. Sometimes I get prostatic fluid discharge, usually if I haven't masturbated in a few days. Sometimes I will actually feel a shooting pain down to the tip of my penis and there will be discharge. I'm not sure if this is common or not and if it means anything. I have never seen anyone post that their prostate does this.

I did not experience this symptom. I have read about discharge here, but it is not always present.

One other thing I should mention is that I have had IBS since I was about 12. It makes me very susceptible to diarrhea. I take Metamucil every day which helps but is not a fix. Week to week I can't tell you how often I was irregular since it is common.

Yes, me too. And my twin brother (who also has this.) Many of us on here have hypothesized that there is an important link between IBS and this condition, although we can't prove it. But there is enough anecdotal evidence for the common layman to think about it seriously.

Your IBS is, in my opinion, related, on multiple levels fromt he physical level up through layers involving your reflexivee responses to pain and anxiety. But lets not get ahead of ourselves. At the moment you are looking for a causal relationship. Take a deep breath, some of the best doctors in the world have been stumped by CPPS. There is no simple answer that anyone has found yet. But that being said, you may want to search posts on this site for other posters who complain of IBS.

For example,. I no longer get IBS so long as I avoid Garlic. It turns out I am reactively intollerant (severe pain and diareagh, followed by weeks of constipation) to garlic. As long as I avoid garlic (and Italian restaurants in general) I am IBS free. But for many people finding a simple cause is unlikely, and the best thing you can do now is start to monitor your diet (things doctors tell your to do anyways,etc.) We've had discussions about that on this board, and can start another one if you like.

At this point I'm not really sure what I may be able to do. There are so many theories out there and I find it hard to say that my constant symptoms sound like any of them. I am trying to stay positive but it is difficult when you have contant discomfort/pain for almost 3 months and sleeping 3+3 hours a night is considered a good night's sleep. At this point I don't really have a life. I can only hope that someone is able to find something to cure or at least make my symptoms liveable.

I know exeactly how you feel. Its tough because you are alone in this, too. But you should know that many of us here have this condition and conquer it for long enough to get a life back.

Two years ago I was lying on the floor of an apartment, in terrible pain all of the time, not eating most days, just sort of in a terrible limbo. A kind of nightmare. Myt brother had this two years earlier. He started to improve with physical therapy and relaxation, and now, two years later, I am pain free and my brother is pain free, working out at the gym, and throwing dinner parties. So as you can see, the nightmare has an end, and you will wake up victorious in the end.

You are currently deep in that nightmare. But understand that you will work your way out of it. Not the way modern medicine operates with a pill and a weeks bedrest.

You are going to have to do this the hard, old fashioned way. The Victorian way, with a year or two of recovering your "constitution" as they used to say. Its not an easy path, and it is one that few other people will ever understand. But it is one that you can walk and you will conquer your pain. Until modern medicine understand our problem, there will be no quick fix. But keep your mind focused on the good news: there is a way out of this problem where you get your life back.

First, it is very important to avoid sitting. Second, I suggest that you start the Stanford/Wise-Anderson Protocol immediately. Buy the book A Headache in the Pelvis (this is not a sales pitch) and then start to apply the stretching and relaxation.

Keep in mind that for many months yet, you may see very little improvement, but you will be beginning the process of understanding your pelvis that you have to go through to conquer this.

You are a sys admin. I'm sure you are highly analytical, highly skeptical (so that you can quickly track down bugs and problems) as well as highly conservative in the actions you take (so as to avoid making things worse.) But you are probably also open minded and know not to just sit on your butt and pray that it goes away. It was very good thinking to get off of your butt when you did.

1) practice relaxation and stretching
2) start learning the anatomy of the male pelvis
3) continue to see your urologist
4) continue to communicate here
5) I'm sorry, but the video game sessions are out for now. I know its tough, especially if you are in a clan or a guild, but it is critical for your health. In a year or so (or less) you will be able to return, but only after you learn the tricks you will need to stop clenching your pelvis (which you are doing without realizing it.)

We can help you along.

p.s. I wrote a message here much like yours (but more despondant and less coherent than yours) 2.5 years ago.

[DavidinLA]

Also, a career in computers is another known risk factor for CPPS/pelvic myoneuropathy. Sitting all day concentrating promotes pelvic muscle spasm. You may have to look to another career if all else fails.

I've thought about leaving my job as a computer programmer. Just thinking about keeping up with the ever-changing technology brings a lot of stress on me. I'm not sure what I'd get into though. It's very tough to make ends meet here in California.

[Futwox]

Thanks to those that have replied so far. It is good to know that what I am going through is very similar to other experiences of people who are at least feeling somewhat better now.

After many weeks of partial depression and being terrified of this problem I decided I needed to make a change. I also needed to buy a new wardrobe since I had dropped 20lbs in the first month and a total of 26 in the first 2.

A few comments:

I ordered AHIP about 2 weeks ago. When I first started reading about this problem I thought the muscle problem might fit me best based on me having IBS (more strain on the pelvic floor) and the fact that I sat all day and played EQ at night.

I am considering going to California. If pelvic floor muscles are my problem I think it would be best to be diagnosed by the best since it seems that finding a good qualified person is hard to do.

I have ordered one of the IC friendly chair cushions since the donut cushion was horrible to sit on.

Trevor

[LightningTree]

Hey, keep in mind that at this stage, some of us believe you are experiencing neuropathic symptoms. As a result, it takes about 6 months to calm down the whole system to the point where you can start to feel recovery.

Also, I'm not 'sort of better', I'm basically 99% better. That last 1% is just a reminder that I need to be careful with sitting too much.

Hang in there.

[GP2]

Lighting Tree,

I had a great day of no pain yesterday & I'm having a bad one day despite being less stressed about my condition & de-stressing now in all areas of my life. I often get pain when working on my house but I can go weeks without sitting pain at work. Although today it is really bad - you think I should do something about the sitting pain I bet? Just can't really work out why it can be good at work for weeks!

thanks

Greg

[DavidB]

wow, there seems to be a lot of computer people here. I sit at comp all day too as a web designer.

[LightningTree]

The neuromuscular hypothesis, is, like many other hypotheses about this condition, just that. There is some data to back it up, but it isn't enough yet and there are many other possibilities.

For example, I believe another possiblity is that it is an endocrine and/or metabolic disorder of some kind. A disease, like many others of this kind, that triggers failed metabolisis during periods of stress. (An example would be a region-specific ATP disease (these exist)). Mind you, there is no solid evidence for this at all.

In any case, the key is to consistantly relax and stretch and avoid sitting, in my opionion. No offense, but you are a N00B when it comes to relaxing your pelvis!I p0wz you when it comes to pelvic relaxation!

I bet you many dollars that your pelvis is not as relaxed as you think it is. For most of us, it takes months and YEARS of practice to really learn how to relax it.

Yes, I believe that sitting is a contributing factor and you should do everything in your power to remove direct sitting pressure from your tailbone, perineum etc. A cushion isn't good enough. No weight from sitting should be on these areas.

The reason I give this layman's advice is because this applies the three modalities that appear to have been succesful in treatment approaches. Since I have no scientific approach, I take a breadth first, cost free holistic approach.

If you are going weeks at a time without symptoms, then that is a good sign. But I would advise you that I often feel great when sitting for long periods. It is only afterwards that the symptoms flare. Of course, it is always possible that my condition and yours differ in some fundamental way.

But if you want to follow my brother and I in our treatment approach, the keys are:

• deep meditative relaxation,
• true pelvic muscle relaxation (lik€ learning to unlearn riding a bicycle, as someone here aptly pointed out),
• avoid sitting every day,
• try eliminating foods that exacerbate your IBS. I avoid milk, wheat, and garlic.

[CppsDad]

Word from the wise: computer games are an absolute no-no for people with this condition! Nothing is more sure to tense up the pelvic muscles and inflame the genitourinary system.

Computer games are my favorite pasttime. There is no way I could give them up!

[Futwox]

Well, I saw my regular Urologist in mid July for the last time. He had tried me on Cipro, celebrex (anti-inflammatory) and alpha blockers. He pretty much told me there was nothing more he could do. He did refer me to a pelvic pain physiotherapist and to Dr Curtis Nickel in Kingston.

I saw Dr. Nickel at the end of August. They took 3 urine samples and a prostate fluid sample. The urine sample taken after the prostate sample contained too many inflammatory cells to count. I never heard back about the urine or prostate fluid culture but I was expecting them to come back clean anyways. I was pretty much told by Dr Nickel that I was doing everything I could and that there was nothing more he could recommend. He was surprised that at this point I still feel very little to no pain in the perineum and that all my pain is in the penis. At this point I am taking any accredited quercetin product and no other medication.

So in early September I saw the pelvic pain physiotherapist. The first visit was spent discussing my symptoms and she did an external and internal evaluation of my muscles. She didn't find anything externally and she said my pelvic floor felt asymmetrical. She told me this is not normal and a healthy pelvic floor will feel the same on both sides. She found that some muscles would relax only hesitantly and that with some she felt no release at all. She did not find any trigger points.
The next visit she massaged/stretched my internal iliopsas since I get hip pain when I sleep on my side at night. She hooked me up to the computer to take readings. The readings showed my relaxed tension to be at around 7. When I had to do 2 minutes of 10 seconds tensed followed by 10 seconds relaxed it showed some muscle fatigue. The first 2 contractions and releases were OK but not perfect but as things went on from there the contractions became less effective and the relaxation took a lot longer to achieve. So at this point she is focusing on relaxing tensed muscles and is not looking to increase their strength. I'm disappointed we didn't find any trigger points.

So I guess now I just continue to stay the course and hope for the best. Things emotionally haven't been great. I was involved in a long distance relationship that I was hoping might turn into a close relationship but unfortunately she doesn't want to move to where I am under any circumstances and with my current health I really can't afford to quit my job and move. So I've been depressed lately and it's really exacerbated my IBS which is no fun. On a side note I have been seeing an IBS physio therapist. So far it hasn't really helped much, but I haven't seen him much and with the emotional issues it probably wasn't the best time to start the IBS therapy.

Trevor

[Sleeper Service]

Hi.

First of all, don't be discouraged by the lack of trigger points as contracted muscles are just as - if not more - relevant. Fundamentally something is wrong in your pelvis and your physio will work with you to help resolve this.

Secondly, it's disappointing when one realises that conventional medical therapy will be of limited use. That is why it is important to keep up to speed with the methods others have used to cure or alleviate their condition.

Lastly, chronic prostatitis / chronic pelvic pain syndrome is generally a self limiting disease that gets better with time if one is prepared to work at it. Sadly it's not an instant fix and can take many months or even years to get to the bottom of. However, you will. I know it's depressing and you may wish to se your MD about that - I use Fluoxitine which I have found very helpful although it took about three or four weeks to kick in.

Hang in there - it will gradually get better.

[alprost]

So in early September I saw the pelvic pain physiotherapist. The first visit was spent discussing my symptoms and she did an external and internal evaluation of my muscles. She didn't find anything externally and she said my pelvic floor felt asymmetrical. She told me this is not normal and a healthy pelvic floor will feel the same on both sides. She found that some muscles would relax only hesitantly and that with some she felt no release at all. She did not find any trigger points.

I'm hesitant to give this advice, but I'm going to anyway - I would get a second opinion. I say this from the experience of seeing 2 separate PT's who held themselves out to be specialist PT's in pelvic pain, one guy here in Scotland, and another woman in Vancouver. Both checked me and were unable to find any trigger points. I was then seen by Tim Sawyer who found multiple trigger points, both internally and externally, many of which completely re-created my symptoms.

A couple of qualifying points though:
- Firstly, the PT you have seen may be excellent and you may indeed not have any trigger points. However, based on my own experience, I would at least consider the possibility that she may be missing something and, just as you would in other areas of medicine, would get a second opinion. I had some of the symptoms you describe, and they were related to trigger points in specific locations (in my case).
- Also, if it turns out that you do not have trigger points, then you just need to work on relaxing and getting treatment for your contracted pelvic floor. As stated in AHIP, some patients do not have trigger points but do have a contracted pelvic floor, and this can be helped by PT and relaxation to decrease the tone of the pelvic floor.

[healthyforlife]

I am 34 and have been recently diagnosed with Prostatitis. I am a computer system admin and played online games quite a bit at night.

I do computer research and used to play video games until late into the night (often online games with competitive stress.) Welcome to the club! In my case, the worst game was BF1942, but other more casual games, EQ, UO, etc, were also an issue.

Man, I think my onset started when I was playing too much video game too!!!
We all have similar symptoms and life styles/habits!!!

[LightningTree]

Yep. Keep in mind this is a computer forum and us computer guys tend to find this forum more often than other folks. But we have construction workers and home builders and so on in here. Also, I hear that a lot of truck drivers get chronic prostatitis. Seems like sitting is a big problem, as is lifting (a lot of weight lifters here, construction, etc.) Strong legs, tense muscles, etc, don't help.

Its really important when you have the initial flare not to panic, because the syndrome takes a fairly common course. For example, FUTWOX's is very common. First you get the penile pain, then it moves into the prostate and rectum and surrounding muscles.

I don't know how to deal with the prostate inflammation itself. There's quercetin and diet modification and the like to try to help with that. But fortunately, we can stop the muscle problems surrounding the prostate by making the muscles limber enough.