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 New member greetings, and my story 
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Joined: Fri Jan 10, 2020 10:31 pm
Posts: 5
Post New member greetings, and my story
I'm glad to have found a forum with other guys who share this problem, and I hope we can get through this together. I have been suffering from CPPS?? / Prostatitis?? for 6 years since around my 22nd birthday. One day while studying for my final semester of college exams it just gradually started getting more and more painful to sit and pretty soon I was really struggling to pee and I was having painful ejaculations. The pain has always been directly at the base of my penis on the underside and inwards (penile bulb). I was about to go on a 1-year trip to England when this happened and I did not know how their healthcare system worked for foreigners and so I was rushing to get a urology appointment. Antibiotics / cipro did nothing for me but make me make orange pee artwork in the toilet bowl. So I got a cystoscopy in 2015 and the doc said he "didn't see anything" in terms of strictures but dilated my urethra anyways. This also did nothing to help, but it caused the pain to change from a dull, constant pain at the base of the penis to more of a stinging pain.

So I went to England for a year and basically gave up pursuing help because I had no more information than when I started. I also had a period during graduate school when I came back to the USA where I had no insurance since I turned 26 and couldn't afford to go, but thankfully I have a job now so I'm insured. I am wondering whether the cystoscopy caused a stricture, so I scheduled another appointment with a reconstructive robotic urologist who treats urethral strictures and I am going to ask her to do a Retrograde Urethrogram to see if I have a stricture (i doubt that I do but I want proof).

I have no incidents / trauma that I can correlate the initial onset to (I am still a virgin, largely due to this problem). My suspicion is that this is CPPS but I want to rule everything else out. I would actually be happy to know that it is CPPS because that would mean there isn't anything seriously wrong, just annoying.

I have two things unique about my case that I haven't seen many other guys mention.

1) I have CAM-type femeroacetabular (hip) impingement in both hips. I have theorized that maybe this bone spur on top of the femoral head can cause inflammation / pain to spread into the prostate region? No one seems to believe me but this is one of my theories.

2) I have extreme dry eye / dry mouth, very similar to Sjögren's Syndrome. I was tested by a rheumatologist who says that I do not have Sjögren's, but regardless of what she says I still have the symptoms. I consistently score a 1 to 2 on the Schirmer's test for eye wetness (a test which people with normal eye lubrication score a 16 to 20 on). My ophthalmologist says that this could be the result of my usage of Accutane when I was a teenager. There was a class action lawsuit against Roche (Accutane mfr.) for irritable bowel syndrome. Sometimes I suspect that if Accutane f'ed up my lacrimal and salivary glands, maybe it f'ed up other glandular tissues in my body as well such as the prostate? Have any of you with Prostatitis / CPPS taken Accutane in your life and do you have Irritable Bowel Syndrome (IBS) and suspect it is related?

Anyways, I found this forum while searching online because I'm having a flare-up now. Today was the first time my kidney actually hurt while peeing, but the urology wait times are so long I have to wait a month to get in just so they can tell me I have "referred pain".

I am glad there is a forum like this for all of us and while I do become depressed at times over this issue I won't let it bring me down as I have been suicidal in years past and I know what it is like to be in that place mentally and I resolved to never let myself get to that point again. We just have to keep pushing and find a cure.

I'll summarize my symptoms in case anyone else can relate to this: Stinging pain at base of penis on the underside when urinating. Stinging pain when flexing Kegel Muscles in the same place. Cannot sit down for more than a few minutes (I am supposed to sit at work at my computer). Start and stop urination, it starts and stops probably 5-10 times every time I pee. I have a splayed urine stream, one which is a weak "straight" stream and another one which drips straight down. Painful ejaculations, like the semen is being pushed through a small opening. I have both ED and PE. Pre-ejaculate contains visible semen in it, and this comes out almost immediately upon reaching a full erection. Sometimes I get a burning sensation in lower front abdomen when peeing, which is probably caused by urine backup. Pee leaks out after urination for 5 minutes.

Anyways hopefully someone else can relate to these symptoms and maybe even have a success story. Otherwise I'm going to proceed with the urethrogram and update later. Thanks for letting me get this off my chest and mainly this was a way for me to organize my thoughts for the doc visit. I really hope it is not a stricture as that would require urethroplasty surgery which knocks you out for 6 weeks and they have to cut your urethra in half and sew it back together. But honestly at this point I don't even care what it takes I just want this to go away.


Sat Jan 11, 2020 12:01 am
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Joined: Wed Apr 04, 2018 8:43 am
Posts: 131
Post Re: New member greetings, and my story
What state are you in? Are there any urology or prostate clinics in your area? There is one good doctor in Ohio I believe he plays the lute...you can find him via google as I can't post links here.

Your case is different from mine as it the origin is unknown - mine was caused by an STD (and so the teachable moment: never accept a blow job from a Chinese massage girl with no condom because yes, you can catch STDs from oral sex no matter what the doctors say.)

So if I were you, I would start with some non-invasive diagnostics (MRI, sonogram, EPS screen and culture, and Urine screen). I think you should focus on finding the source of the problem more now that you have insurance.

For work, get a padded cushion. If anyone asks, tell them you were in a car wreck and its for your lower back if you prefer.


Sun Jan 12, 2020 4:35 pm
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Joined: Fri Jan 10, 2020 10:31 pm
Posts: 5
Post Re: New member greetings, and my story
I am in KY, although I spend a lot of time in GA too so that would work. I know the one you are talking about and he's in Cleveland which would still be quite a drive for me. I haven't found any pelvic floor PTs in my area.

I'm assuming yours is bacterial then? All of my urine tests and one prostate fluid test came up negative (although that was back in 2015).

I've forced myself to stop sitting in the normal sitting position at least at home over the last few days. Putting less pressure on the perineum helps. I'm also quitting coffee cold turkey. I only allow myself to lay on my back or belly or stand up, no direct sitting on the perineum.

I bought one of those donut cushions but I cant imagine myself taking that to work lol. It would help though.


Sun Jan 12, 2020 8:55 pm
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Joined: Wed Apr 04, 2018 8:43 am
Posts: 131
Post Re: New member greetings, and my story
If I were you, I would start dialing every uro in KY until you find one who will do a EPS screen (culture and PCR which looks for DNA of bacteria).

KY has some good medical schools in it as I recall and so there must be some urology clinics in your state. Google is your friend.


Wed Jan 15, 2020 2:47 pm
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1138
Post Re: New member greetings, and my story
Wow, I had completely forgotten about Accutane. I took that when I was a kid, like 13, or 14 years old. It cleared up the acne but gave me wicked chapped lips that lip balm didn't even help. It basically caused all the natural body oils to slow down I guess. I was pretty ashy on that stuff. Prostatitis didn't hit until I was probably 27 though. I also have hip issues, specifically snapping hips I guess, which made martial arts difficult, having to pop my hips every time I'd kick, etc.


Sat Jan 18, 2020 3:51 pm
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Joined: Fri Jan 10, 2020 10:31 pm
Posts: 5
Post Re: New member greetings, and my story
Inflamed wrote:
Wow, I had completely forgotten about Accutane. I took that when I was a kid, like 13, or 14 years old. It cleared up the acne but gave me wicked chapped lips that lip balm didn't even help. It basically caused all the natural body oils to slow down I guess. I was pretty ashy on that stuff. Prostatitis didn't hit until I was probably 27 though. I also have hip issues, specifically snapping hips I guess, which made martial arts difficult, having to pop my hips every time I'd kick, etc.


They had a class action lawsuit about the fact that Accutane caused people Irritable Bowel Syndrome. It was several years back. I have tried to contact lawyers about my extreme dry eyes and mouth but nobody would take my case. I think this Accutane drug is a gradual long term effect. I really wonder if it f's up the glands in people's skin and eyes why wouldn't it harm the prostate gland as well. I didn't get dry eyes until probably 1-2 years after I got off the drug. I had peeling skin while I was on it though and I actually didn't complete the full course due to the side effects.

You might want to get a hip x-ray. It turned out I had CAM type impingement in both hips.


Thu Jan 23, 2020 11:33 pm
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1138
Post Re: New member greetings, and my story
Thanks man, I'll check it out and see what's up. I know that fasting heals nearly everything in the body, the longer you go, the better. Even if you could fast for 24 hours twice per week, that would be something. I saw a decent amount of prostate relief that way. There's a video on Youtube, it's called, "7 Amazing Benefits of Fasting", it's very well done, check it out. It can also help your other issues as well.


Sat Jan 25, 2020 4:11 am
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