My story of the road to CPPS - MajorSky

[webslave]

It is. But that page explains why

[SoothingSpaces]

My ejacate is watery and not white like the days of yore. Less viscous.

[MajorSky1]

I got the why, completely. What I'm trying to ask is do the white blood cells enter the seminal fluid at the point of inflammation whether it be the prostate, urethra, bladder, etc. as if it were an infection sight, or are the WBCs more widely systemic upon inflammation and enter anywhere along genitourinary tract from accumulating in the surrounding inflamed muscle tissue? Or maybe both? So would less pain mean less WBCs in semen?

[webslave]

Enter at point of inflammation (lower GU tract epithelium). Yes, less pain means less WBCs, usually.

But since you have asked this question, I still don't think you have carefully read and understood the linked page

[MajorSky1]

I did and I understood it.

[Mountainmac]

Hi MajorSky,

You're like us searching for answers and Internet isn't the best place to be when suffering in my experience.

When my symptoms started in October I did create an extensive mindmap of all my symptoms and possible causes (Cancer just about anywhere, Tarlov cysts, Hernia, PN, PNE, CPPS, Labral tears, IBS, IC, Prostatitis, B12, Diabetes, Lyme, Yeast, etc etc.) in the early stages of my CPPS. I had a lot of tests done, which all turned out negative, but they did find a distasis recti and one Dr. said possibly my hip was worn due to radiation therapy for cancer 20 years ago. So that got me worrying more than before.The hip turned out to be ok and the diastasis recti was there since my birth so hey why would that be a problem all of a sudden.

Continuing my search; Swollen lympnodes in my thigh, Lumbs in semen, color, how does my penis look, etc everything is suspect. The point is you never take very much notion of these things when you are healthy so everything is disturbing when looking. Even started to have itching on my back all the time (gone now). Google it and you find 70+ reasons for itching on your back, perhaps even lethal ones.

Still very upset I was getting ready to travel abroad to get a full body scan and all the blood-work scans I could get to find out what the hell was going on.

At that point I realized myself once again that it isn't very logical that I would have multiple diseases at once. And I clearly do have a nerve/muscle issue in the buttocks and pelvis so that's what I focus on with searching for/getting treatments. The point is with all these syndromes the symptoms lists only grow and are very broad interpretable, so when looking for it your symptoms will match with just about everything.

Now I am 80% better than in October, but CPPS it is still very hard to deal with, for me mainly due to the all day (not at night) penile irritation. However, knowing the direction of treatment gives me peace of mind. Still I do have the occasional Internet scan evening but far less than before.

Just wanted to give some insight in my steps dealing with CPPS...

[MajorSky1]

Hi Mountainmac,

Thanks for sharing that information. I gave up trying to figure out what's going on a long time ago. I know the basic structure of CPPS, and a lot of the details, and I know that's what I have. It is after all a very complex condition. Probably like you it took a long period of ruling things out because CPPS is not something most doctors know much about.

I'm just trying to learn some of the details as they relate to my symptoms. Sometimes it's to try to gauge where I'm at, to see if there's a progression - and I tend to do that usually when I'm having more intense pain, or a pain has changed drastically, or changed location. I ask questions on here and I guess I'm subconsciously hoping someone will say something like "oh, yeah, that means it's starting to go away and you're healing. " I know that's not going to happen here, so I'll give that up too.

Thing is, some areas have improved while it seems like maybe a couple new pains have come along. It's like SO close to feeling better, but can't quite get over that hump. I look forward to the day when all this is just a memory of a crappy period of my life that I all but forget about. Thanks again.

I had penile irritation at the beginning really bad. The whole urethra burned and ached, and the tip hurt and was very sensitive. Sometime in January, the top pain faded away. Then I still had intermittent urethral burning, more often there than not. But like you, no problems at night while sleeping. Probably for the past two or three weeks it's been consistently 98% gone. It doesn't burn anymore at all really. I do have a very very mild ache after urinating that I think is just some left over muscle tension.

I was taking hydroxyzine for about six weeks or so - once in a while I'd miss a dose or two, and for a lot of that time, I took a half dose because 10mg knocked me out. 5mg. did not. I do think it helped, possibly. I have also been taking quercetin (recently Quercetin) for a month, and that might have helped too. It's hard to tell if it would have gradually subsided on its own anyway. I say that because before I started either of those substances, there was a very very slow improvement over months on its own.

But I do think physical therapy, internal massage helped for certain.

Have you tried hydroxyzine? Quercetin? Sorry if I don't remember you mentioning it before.

About a month ago or more, I remember having that pain and feeling like it was never going to go away. It's horrible, it nags, and it was so bad sometimes it would make me feel sick. I am very glad now that it's pretty much gone. Once in a great while, after I void, when I milk the urethra I can still feel a very faint burn, but definitely not like it was. It goes away, just keep trying.

I definitely don't do internet searches anymore. I've learned they are just about pointless. When you do find something possibly accurate, it's usually vague, or just not detailed.

[webslave]

I guess I'm subconsciously hoping someone will say something like "oh, yeah, that means it's starting to go away and you're healing." I know that's not going to happen here, so I'll give that up too.

You're not paying attention
viewtopic.php?p=49289#p49289

Thing is, some areas have improved while it seems like maybe a couple new pains have come along. It's like SO close to feeling better, but can't quite get over that hump.

You are hypervigilant, as evidenced by your numerous posts showing attention to every small symptom or change in symptoms. That usually delays progress, in my experience. You're also needy and panicky about getting progress, a sign of elevated anxiety.

These aspects of your psyche, which you are ignoring but which are very significant parts of your condition, are obstacles you need to think about. I hope this gives you some insight as to how others honestly see you. If you work more on the mental side of things, and worry less about the minutiae of the physical side, you may see more progress.

[MajorSky1]

Dude, totally uncalled for. I thought this was a support and information forum. I must have been mistaken, and my apologies.

So far, you have told me I'm hypervigilant many times. I'm aware that I have anxiety, and a desire to understand this condition. Yes, I have anxiety. Yes, I'm trying to get a spectrum from other people about their symptoms. But calling me needy? Seriously? Who has this and doesn't have moments of panic.

You don't know me. I've held back from addressing these things from you out of respect that you know a lot, and have seen a lot of guys have this. I'm doing everything in my power to fix my anxiety. It is impossible for me to ignore these aspects of my psyche. One of the things that helps is asking questions.

I suspect this is your way of honestly trying to help. But making me feel like a fool for posting questions and explaining my situation is not cool. It's gotten to the point that no matter what I post on here, I know there's an 80% chance you're going to respond in a terse and irritated way. So thanks for the help thus far.

I'll just read from now on. No more posts from me.

[webslave]

This forum gets a couple of members like you joining each year. Never satisfied with the answers they get, asking the same questions over and over in different ways, posting obsessively about every manifestation of their pain. And whenever this is pointed out to them, and they are told that this behavior in itself is a part of the syndrome and indeed makes it worse, it gets their backs up.

[MajorSky1]

It's definitely part of the syndrome.

[Mountainmac]

I can totally relate to the need to get an as best as possible understanding of this syndrome. Comparing symptoms is one of the things most of us do to get some mental assurance I recon. But it still is a syndrome so there is a lot of variety in each individuals case, it's up to us to interpret them for our situation.

The admin must has seen many cases and probably sees some meta-types in members and common recovery paths and responds based on that knowledge. We only have our own situation and the forum, so its a lot harder to get the confirmation by just reading topics in the forum, or the website. They are great, but do they apply to my situation? This calibration process requires interaction via questions and answers. A different process for everyone. I do agree that finding peace of mind with it and trying to focus on doing the things that aid recovery are key.

So I don't mind questions and if I think I can add something I will respond to topics.

[SoothingSpaces]

Webslave, why am I essentially in a constant flare state. I just had one this afternoon during which I could hardly breathe. Then it just passes. The anxiety ramps up with the flare...and I am in AGONY. All of it centered in the perineum. No burning urination. No penile shaft pain. Just in the perineum. I try to stretch and went for a walk today -- but I am most comfortable lying down -- and even then I can feel it. Any suggestions?

[webslave]

Have you tried a heating pad? Does this happen at work?

[SoothingSpaces]

I have to take more time off from work. I am in agony and flaring constantly. In my car. At my desk. It's all in the perineum. When I sleep it goes away but kicks in. I chew a lot of nicotine gum. Could this be an irritant?