ChgoGuy thread

[cam3roni]

Typical doctor responses...
Maybe masturbating before bed would deter night time erections? But doing that every night would be exhausting.

For me, the whole diet change thing doesnt really seem to do much. I feel like my efforts are better focused elsewhere. Besides staying away from caffeine and spicy foods, i dont discriminate. It iust doesnt seem to help, especially since this all really comes down to tight muscles, hence i put all my effort into PT type work.

[ChgoGuy]

My thinking is that ejaculating, regardless how your doing it isn't going to help some people. It only makes matters worse for me.

[cam3roni]

I agree, ejaculating too frequently probly isn't smart. Would just like to know how to get rid of failessly waking up with an erection during the night...

[ChgoGuy]

Same here Cam3roni!

I've mentioned this before in this forum, but I have high blood pressure and have been on meds for years. For the longest time it was hard getting an erection some times. Now I can't get rid of them. Now I suffer from the exact opposite. Are you taking any supplements for the weak stream at all? It seemed to get worse on a specific supplement I took. 3 yrs of waking up with this and it does really suck.

[webslave]

Constant erections (priapism) is a very unusual problem with CPPS, and I feel is probably related to alpha blockers.
https://www.sciencedirect.com/science/a ... 9506006030

Food problems can be combated by an exclusion diet, discussed elsewhere here. This has also been one of my biggest problems, but after years of trial and error, I now eat a limited diet without pain or discomfort. I keep an Excel sheet listing my forbidden foods to help my wife keep on track with the food prep.

[ChgoGuy]

Sometimes while doing internal work, I'm either real successful or I cause more problems. Usually the problems are caused at 1 and 11 oclock. Yesterday my issues were in the perineum area. Today its also progressed to the penis trouble Strangely the **left** side of the penis. This is a rather new one. Usually its centered. Generally the left side internally is tighter than the right and last night was no exception. I some what expect some negative responses to the work, but does this mean at all that I came to close to midnight? I feel like I must have done something wrong, and the pain is getting worse by the hour. Sometimes I question whether I'm doing it all wrong.

[webslave]

Wait and see. This is why training is really required, even a few sessions.

[ChgoGuy]

I want so bad to fall into some remission with this that I feel I am getting overly aggressive doing it. Sadly I used to go a week or so between flares that weren't so bad. That all seemed to change in late Nov. or early Dec. of 2017. I might get a day or 2 each month now where I am okay, but I want and need more to feel I'm making progress.

[webslave]

Your hypervigilance + obsessiveness is one of your obstacles. This resolution of this condition cannot be hurried or forced in any way.

[ChgoGuy]

I figured I would update what's going on. I've been on Alfuzosin for about a week, and am being reminded why I hated Tamsulosin so much and couldn't take it. I feel like I can't breathe on the stuff. It's not just that it causes bad congestion for me, but it makes me feel like somebody is sitting on my chest making breathing difficult. I remember when I took the Tamsulosin that first time, it made me feel like a bomb went off inside of me and I could never adjust. I made 3 attempts with Tamsulosin, and now Alfuzosin, and I can honestly say I am ready to wrap it up and end taking it. I've never taken a class of drugs that made me feel this @#$%ing shitty in my life.

I saw my PCP yesterday, and his only suggestion was to either go with Gabapentin or Cymbalta or Lyrica. Gabapeentin? Been their done that. Would be willing to try it again, but it just added to the constipation woes that don't help with pelvic floor tension. Of course the shit has other side effects I have seen with others I care not to share. I never took Lyrica before, and I am sitting on 2 months of Cymbalta anyway. I am not a fan of anti depressants, so I am not looking forward to Cymbalta. On another note, my dad developed Dementia and Alzheimers, and I am not feeling to cool about taking any anticholinergic drug. I'm not too sure my PCP is going to be able to help much with this. He's pretty honest about the whole thing being difficult for doctors to help their patients with.

I so would love to conquer this shit without any of these medications. What's really f__ed up is that PT cost less every month than all these medications. As far as my urge goes, lately the urge has been horrible at about 1am. It happens when I doze off and it awakens me from my dull sleep. It will aggravate the piss out of me the minute I try to lay back down.

[ChgoGuy]

Question: What indicators or symptoms need to be present to differentiate between, CPPS or Prostate Cancer considering they share symptoms? Blood? I'm asking myself this question because how would any of the 3 Urologist I've seen guaranty that I may not have it, and draw any conclusions its BPH, OAB and or CPPS? I haven't had any biopsies and I certainly don't want cancer, but how can they come to that conclusion short of a biopsy or any advanced scan? After 3 yrs, why not? Why is it not possible there is something else going on to explain all the pain and urgency that doesn't get relieved by any of the medications? Why isn't it possible I am not being misdiagnosed? I had a decent PSA when this all began, but that dont mean crap.

[webslave]

If PSA is under 4 ng/mL and DRE reveals no nodules, then don't worry about it.

[ChgoGuy]

I'm just really frustrated Webslave!

I would love to see which doctor wrote in my charts that "I'm nuts!" because everytime I see one of my doctors, they are all starting to use the same key language to describe me. It's as if they were given a script, and they refuse to deviate from anything not in the script or think out of the box. I walk in with a lot to talk about, and walk out wondering "WTF just happened in there?" I'm trying to help them understand what is going on IN ME so that to better help me fix myself. I tell them straight forward - "You and I know you can't fix me! I'm not here for that! I'm here so that you can help me manage some symptoms while helping myself!"

It's funny that my urge issues have gotten worse over the past month, and it's all due to the frustration I have with them. Nothing else is bothering me so much in my personal life. The only thing pissing me off is that none of them are listening to me, and it's causing my nervous system to explode. Of course I would Like to rule out that there isn't anything going on neurologically causing all the urge issues. I think it's all the aggravation, but after 3 years of no improvement with the urge issues, lets rule out the facts from the friction. If it were to be neurological in anyway, well things must be treated differently. All I know, is that I am really wound up, and all this anger is focused on the doctors. And when I get like this, I need to piss constantly. For some reason when I explain this, anything like Xanax or any other Benzo to calm me down is off the table. I take meds to control my urinating and that's it. They have left me hanging for months, and refuse to manage my symptoms caused by the underlying problem. I seem to be managing the pain aspect rather okay, but having the never ending feeling to piss bad is a fucking torture.

[webslave]

Why bother with uros? I'd be done with them by now. In my own case, I wrote long detailed letters to my uro with a timeline of events, lists of all my medications, detailed descriptions of symptoms, and on and on. He just ignored it all and said something derogatory about me being over-focused or obsessed in an unhealthy way. This despite the fact that the disorder was effectively removing my career, my means of making a living, everything. The arrogance was astonishing and I've never forgotten or forgiven it.

And over the years I've heard men being treated with the same dismissive or denigrating attitude more times than I can count.

I suspect it's their way of protecting themselves from facing up to the fact that they have in front of them a patient in real pain whom they cannot help. So they blame the patient, not their own ignorance.

Do yourself a favor and walk on by

[ChgoGuy]

Well this time it was my PCP. Overall he's a great doctor. I started seeing him in the past year. He doesn't pretend to know anything about it. I know this going in. What really bothers me though is that I throw the cards on the table and say this is what it is. I know you can't fix it, but can you please help me cope with it by providing other things to help me along? I know I can beat this Webslave. However I don't sleep - EVER!! Not kidding. This only makes matters worse. When I get urgency, it's usually brought on by stress. The more stress I get, the more anxious I get, and I know you get the picture. This is all I want from the Doctor: Something to help me sleep. Something for anxiety. Something to help with the pain that actually works. If I can work on these 3, I think I can overcome the pissing. Here is the best part, I hate medications. So it's not like I'm going to be popping the shit because I have it. If I know it's there, it's like a security blanket somewhat. But if I don't have anything to fall back on in an emergency that I can see, that's when I start to get anxious. Like yourself, it is having a huge impact on my career and how I make a living. I hate what it's doing to my marriage. My wife is okay with it but worries about me, but it's not okay with me that I am causing grief for anybody else. I too tell every doctor - "This is my job, this is my life!! Without it I am ruined and finished! I lose everything I ever worked for!"

It becomes like it's not a problem. I should cope with it and treat it like a headache or a knee sprain.... WTF are they talking about? I want to tell them that there are guys like me out there, that want to blow their brains out over this. Say that to a doctor and they will have you locked up. Tell them you are in pain and your quality of life is down the tubes, and they shake you off. I would love to walk into ones office and have them tell me they aren't going to charge for a visit though because they did nothing for me! Yeah riiiight!

My Urologist appointment resembles this: https://www.youtube.com/watch?v=IGs0aDR8bhA
Can't wait to stop feeling this way about going to them.