ChgoGuy thread

[webslave]

Yes, urge is an element but it's rare to see it as extreme as in your case.

After working 26 hrs within a 35 hr window leading up to this morning

That's part of the problem. Your body is telling you No to this punishing schedule.

[ChgoGuy]

You're a 100% correct and I know it. I wasn't working this type of schedule when it all began. I did my 40 and that was it. Somewhere in the past year and a half, I made a change. 1) I needed the extra money to make up for what I was taking out of my pocket to pay for things insurance wasn't paying, plus the copays and deductible. 2) I can't sleep. So I figured why not make money if I'm not sleeping anyway. Believe it or not, actually working either makes the pain of it all stop, or I somehow block it out. Something that's impossible to do at 2am when I can't sleep and I'm at home staring into the dark in bed. There is another aspect to why I push myself. That is to prove to my coworkers I can still work as hard or even harder than them. I feel I need to prove myself since I got blessed with this $#!+.

I do find it coincidental that this episode began with the use the Therawand. The first few days were meh! The next few days were really good. Then it went downhill and its even worse. I know I'm hitting some triggers, because I can recreate most of the pain in the penis, perineum and urethra. But for some reason, the closer I get to the prostate, the more tender it is, and the more the sense of urge increased and is lingering.

[webslave]

Neuromuscular symptoms often get worse, not better, when you start treating them. It's an unfortunate feature of this condition, and it discourages many from continuing.

[ChgoGuy]

Neuromuscular symptoms often get worse, not better, when you start treating them. It's an unfortunate feature of this condition, and it discourages many from continuing.

Believe it or not, that's what I wanted you to say. I need to see or hear this from somebody so as to know for myself - "Hey this is quite normal so stay the course!" I don't expect it to be easy, but I don't know what to expect treating this myself. I also think I'm doing it right at 1 and 11 oclock, but unsure about whether I am hitting the triggers right everywhere else or just aggravating the wrong tissue (IDK does that make sense?) I'm willing to stay the course Webslave to treat the CPPS aspect of my problem. The only uncertainty I fear is how treating it will affect days at work. I can't make them understand what I am dealing with. Their answer is always the same - "Try another Dr.!"

Let me clarify something about the urge aspect of this. Just because I have urge, doesn't mean I actually have to urinate. Trying to urinate when I have it, is more psychological because the normal response to urge is trying to pee. Even if it only means 100ml or less. Myrbetriq should take away the urge. But I am really unclear about the actual urge I feel. The urge I feel is typically only there along with the different degrees of pain or discomfort I feel coming from the perineum. So I don't feel the urge is a true urge. I feel its only a secondary feeling feeding from other pain going on in the same area. That being said, I have doubts about my expectations from Myrbetriq. I am experimenting by cutting the dose. So did that change the so called urge factor? Well not really. I have had days where I felt the same on a full dose. This is how I feel about Myrbetriq. It will cut down the amounts of times I can ACTUALLY pee. That's a given. But that urge I feel? Not so fast. I still feel an urge. So IMHO, the urge Myrbetriq is attempting to cut should be coming from the bladder. I don't think the feeling of urge I feel is originating from the bladder at all. In fact, sometimes that urge I feel, also feels like the urge to ejaculate or similar to what I at least feel afterwards. Of course this is just dismissed by my urologist or they don't want to hear it, because they have no answer. So back to Myrbetriq. I think the Myrbetriq could be doing me more harm than good. If it makes me retain urine for longer periods, now I have to worry about stones. And lately I feel like my flow had gotten worse. Which is something I will discuss on Mon. with my urologist. But just a reminder. In my case, alpha blockers and me don't work well together. So if its not stones, what am I going to do about it if its my prostate? The usual options are not appealing. If for some reason I need a procedure that involves a catheter, the one time I had one, they couldn't get my bladder to calm down and quit spasming, so it had to be removed after a few hours of excruciating hell. A Urolift sounds interesting, but there are unanswered questions about that, even on this forum.

I like my current Urologist. He's young and thinks outside the box. He truly believes the major part of my problems are muscular related. But even he admits that as interested that he is in pelvic pain, the current state of medicine knows nothing about fixing it. I respect his honesty. But I still need to figure out whether I truly have OAB, and why the flow is so bad. I do know if I drank a 16 or 20oz coffee, I would piss 4-5 times like a normal human being. So if I had stones or a flow issue related to my prostate, how would that explain they don't exist with coffee (with or without caffeine), soda or even beer? I avoid them, but there is no flow problem with either of them. Which confuses me more. So last night I knocked everything down with .5 of Lorazapam and a Topster supository and do what I need to do to make it to the Dr. Mon afternoon.

[rjdemarx]

Chgo- why so difficult to sleep? This is a sure sign of stress or anxiety which is likely related to your condition. Sleep heals. Have you tried any sleep aids? I use CBD Oil, Valerian root, and other herbs as needed. If that doesn't work a Xanax will send me to lala land.

[ChgoGuy]

I haven't been able to sleep since 1988. I remember the date and event of that day. I should be paralyzed or dead. That day haunts me because I sometimes wonder if somehow it is related to my symptoms 20 yrs later. Its a long story after a long fight that put a lot of stress on me for 20yrs.

I have access to Xanax although it no longer helps much. I stated in this forum elsewhere that this happened to me shortly after weaning myself off of Xanax over the course of many months. I only use it when needed. I take Melatonin, but generally feel more tired later than sooner. Like when I have to go to work 8 hrs later it seems like its in high gear.

As far as what I can or can't take. I don't want to say what my job is on here for public view. Lets just say I have a job where I can't allow myself to be under the influence of certain things.I work in a setting that is under the control of many Federal rules and regulations. Public safety could be a concern. Its a risk I cannot afford to take. At my age, I can't afford to give up my job. After years of stressful conditions at work, In finally in a good place. However the damage of stress and anxiety has done its harm.

[webslave]

The problem with jobs like that, for example an air traffic controller, is that many hours of tense sitting are required. Tense sitting is well known to be a trigger for CPPS. Truck driving is another one, where you sit tensely for long periods. Prostatitis used to be known as "the truck driver's disease".

[ChgoGuy]

The problem with jobs like that, for example an air traffic controller, is that many hours of tense sitting are required. Tense sitting is well known as a trigger for CPPS. Truck driving is another one, where you sit tensely for long periods. Prostatitis used to be known as "the truck driver's disease".

Although I am not an ATC, an airport is where I work. Before I landed at the current job, my job was extremely physical. I thought after the accident 20 yrs earlier, putting myself in a less labor intensive setting would have been just what I needed. I think that was a big mistake. I truly believe that change didn't help what was brewing. Before the change, I put up with a lot of BS at work that was very stressful and didn't need to be. So when a new door opened, I took advantage of it to relieve the stress and rid myself of poor managers. But it didn't help me physically. I think it didn't cause the problem, but may have contributed to it. There are quite a few possibilities that helped lead me to this condition. Another big change, was that I saw more time behind the wheel at the job, although I don't drive a truck per se. I was using a piece of equipment with hard suspension and little if any support or cushioning, days before the flare up that kicked this off. So last year I made another change. I got myself in a position where I am physically busier at work. As long as I stay busy, the pain level calms down or temporarily ceases. But now I am working longer hours. It appears that working the long hours cuts the pain, that is until it's time to go home and rest up. This is when the pain returns, when I am inactive. Since I don't sleep, the reduction of pain by working longer hours is bittersweet, but I will pay for it later. I feel like if I can keep working, I'll be okay or better. But in my heart, I know that ultimately that is some f__ked up thinking. It's like working all those hours became a temporary placebo effect. I guess I get that desperate just to feel good. But yesterday, it took an ugly turn. I didn't get that feel good feeling. It got gradually worse.

What's interesting about my case, is that at first, I couldn't sit down at all. I bought a cushion to drive - not quite a doughnut style, but hollow in the center. It helps. But over time, sitting remains a problem, however now I am more comfortable on an un-cushioned hardwood chair. I bought new furniture to sit on and it isn't comfortable at all. It's a trigger. But I can sit 2 hrs on a hard wooden chair with little if any pain and my urge issues either calm down or disappear on a hard chair. I would think, the opposite should be true. It would be interesting to hear that other people got the same results from a hard chair. The only drawback is that the chair will eventually wreak havoc on my spine after awhile. And sitting in a chair for more than 2 hrs, will eventually cause a flare up of pain, especially in the urethra, penis tip and or the perineum.

I know my comments have gotten longer, but I just want to enlighten people with my story. I want people to see it, and maybe learn something from it. In return my hope is that I can learn something from the rest of you that contribute. My symptoms tend to be like riding a rollercoaster. Yesterday I had huge urge problems, and today that has somewhat subsided and the pain aspect has kicked in to replace it. That's kind of the way it's always acted.

[webslave]

So to be clear, do you sit and control equipment at work?

[ChgoGuy]

No! Not necessarily.

About 5 years ago I volunteered myself (because I like staying busy as much as possible) to move and clear snow around the bldg that I worked out of. Sometimes I just like some alone time to collect my thoughts and free myself from the typical bickering between grown men at work. So they gave me a new tractor with a plow to use, which is not typical to what I normally do. Let's say I thought it would be fun. And it was! I enjoyed it immensely. Next thing I knew, I was being asked to do it at other locations near my office. But little by little, it started to feel more and more like my perineum and prostate was taking a beating. When this finally kicked in, I couldn't tolerate to use the tractor anymore. The seats are not air cushioned and every little bump felt like I was getting body slammed on my ass. I was like, "They bought this nice piece of equipment, and couldn't spend the extra money to make a more comfortable seat?" There are men and women that use the same equipment all year for snow and grass cutting duties related to their job. I can't believe other men aren't feeling the beating these vehicles are wreaking on them? What about our spines?

So I removed myself from that situation as much as possible, which was easy considering it's not really in the scope of my work. You know what Webslave, I was caught up in a perfect storm situation when this all began. As I said in another thread, I had short termed flareups over the years that lasted a couple weeks and then would just disappear for many years. A couple of times they found some bacteria in the urinalysis and gave me antibiotics and it would just go away. And maybe back then it was bacterial. I wasn't so lucky this time I guess.

[webslave]

I would not be concerned about past "infections". Do you do shift work? Shift work is linked to insomnia and lower urinary tract symptoms (LUTS).
https://pubmed.ncbi.nlm.nih.gov/29371140
https://pubmed.ncbi.nlm.nih.gov/29808235

[ChgoGuy]

Thanks for respecting that aspect of privacy.

I don't have to do shift work! I am lucky not to have to with 30 yrs on the job. Others indeed do and are not so lucky. There are 3 shifts 24/7. A major airport never closes, and the maintenance is huge. The only time to shut down a runway to do work is overnight. The shift guys do their regular shift work at night. Everything else is done by bringing people in from the day shift. When you think about it, it's the same thing when working from out of your normal shift into your regular shift. So it's not shift work, but in a way, it is if not worse. The only reason I do it, is to bank money to pay for the PT. At my age, I would rather be enjoying life outside of work, not in it. If it wasn't for the suffering, I actually love the job. I have control over how much time I have to dedicate to it. I'm not forced to do anything outside of an emergency. The stress from the job was at my earlier location from which I worked. I wasn't in the clique, so I was messed with as much as possible. I always worked hard. I have no regrets about that.

[Amonges]

Hey chgoguy, have been on vacation and will later share some stuff I been dealing with. Have you looked into getting a seat cushion that relieves pressure and pain ?

[ChgoGuy]

I have one. Check out a previous comment above....

I tend to use it in my car only. Would it really help on a sofa or recliner that isn't firm already? I guess I've never tried it because the cushion and other furniture that irritates me are soft and I would think the cushion wouldn't sit correctly, rendering it useless. I guess I never really thought of trying it.

[webslave]

One other thing I'd mention is exposure to chemicals and pollution. Several people have linked the beginning of their pelvic pain to chemical exposures. The women who runs the ICN was heavily exposed to chlorine and almost immediately came down with interstitial cystitis, several of our members have been chemical engineers, and then there is the case of Tim who was exposed to toxins.

Now airports are notoriously polluted, especially by kerosene and its byproducts. Just something to keep in mind.