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 My Story - Need Help Please! 
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Joined: Sun Jan 01, 2012 8:00 pm
Posts: 16
Post My Story - Need Help Please!
Hello everyone,

I am a 23 year old male and have been diagnosed with multiple things but the majority of urologists have said nonbacterial prostatitis. It started in July of 2010 when I had to have surgery on my left lung for a spontaneous pneumothorax (collapsed lung). I had a foley catheter inserted in me for about a day and a half while recovering after the surgery. Throughout this day and a half I was complaining to the nurses constantly that my penis was hurting me very badly and was begging for them to take it out. They kept telling me that it needed to stay in. I was released from the hospital on July 16th, 2010 and right away I noticed something was wrong. I had very frequent urination, dribbling after urination, and my penis felt very sensitive. A week and a half later the symptoms were starting to subside somewhat and I was feeling somewhat better. On around the 2nd week my girlfriend performed oral sex on me and all of the feelings came back but this time with pain. Ever since then I have been trying to fight this and figure out what exactly is going on.
I have seen 4 urologists and none of them have been able to help me. I've had a PSA test done, UTI test (urine culture), sonogram of bladder and scrotum, and digital rectal examination. All of which came up negative. I have also taken antibiotics for a few weeks and it didn't seem to help me at all so the urologist(s) told me it was useless to keep taking them. I have tried herbal methods (quercetin) as well which didn't help. Most urologists have said that it will go away on its own but that has not happened whatsoever. The most recent urologist I saw said I didn't have prostatitis but rather glandular hypospadias. This diagnosis made no sense as I've looked into this condition and my symptoms are not associated with this disorder. My main symptoms are as follows:
• Frequent Urination
• Dribbling after urination
• Pain in the lower rectal area (comes and goes and after ejaculation)
• Pain after ejaculation in lower rectal area and or throughout penis
• Pain throughout penis (randomly comes and goes).
• Pain around the meatus area.
• Pain during urination (sometimes)
• Pain while erection (random)

As stated above a lot of these symptoms are random and comes and goes but this has been very depressing and I feel hopeless as of this point. The pain/discomfort is not 24/7 but I do feel pain/discomfort every single day from this. Before I had this surgery and a foley catheter inserted in me I was 100% fine and had no problems at all. It is very frustrating that no one can help or offer assistance. I have not yet had a cystoscope (nor do I want to) but I have mentioned it to every urologist I've seen and they haven't thought it was necessary and said it could potentially make things worse. Another symptom I forgot to add is a sort of tingly/itchy sensation through my penis, it is very annoying.

If anyone has some sort of advice please let me know. This has ruined my life and I just want to be happy and healthy again. I know this was obviously caused from the catheter since I have had no other problems or pain in this area until after I was catheterized. I just wanted to mention as well this was my FIRST time having a foley catheter inside me. I am at the point where I am ready to give up but I just hope that someone out there can give some assistance or advice. Even if anyone has had a similar experience due to cathertization that would be helpful to know. I was told by most urologists and have seen on forums that prostatitis generally comes out of nowhere, this was right after the catheter. So if anyone has any feedback or a similar story, please share as well.

To whoever reads this post thank you very much for taking the time, I sincerely appreciate it.


Sun Jan 01, 2012 8:22 pm
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Joined: Fri Jan 07, 2011 8:58 pm
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Post Re: My Story - Need Help Please!
Hello,sorry to hear of all that you have have been through and i know how you feel and how frustrated you are.I have been suffering with chronic prostatitis for now over 4 years and i know how it has effected my life and to the point where basically i have none so i know where your coming from and it's not pleasant.
I have had similar test done and the urine cultures and all that is know to the medical field and for the most part mine is normal and no infection.What you have mentioned of your symptoms you have prostatitis and no rhmye or reason why someone gets it and someone doesn't.There is no why someone can say how and when it will come and go and beacuse there is no cure the doctors say it will get better in time as they hope so and want to keep you from being alarmed and depressed.
To me you can run to 1,2 or 20 urologist and no one has the real answer except many will want to try this or that to try and hope you feel better but mostly help their pockets as they is no cure and it's all about prescribing meds that more or less are not going to work.The same goes for all the supplements as they do are no magic bullet just someone to take as many might find relief in their head but no actually proof that they are going to take away your symptoms.

Hope this helps you in some way and i do hope you feel much better soon.


Sun Jan 01, 2012 11:47 pm
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Post Re: My Story - Need Help Please!
Thank you for your response. What would you recommend I do as of this point? It does seem like my diagnosis is prostatitis but it seems that no urologists are even 100% positive. Will a cystoscope help that much, is it possible I have a urethral stricture? The thing that frustrates me the most is that this occurred right after catheterization, whereas it seems that most people who get this have it come from masturbating too much or out of nowhere. This is very strange and frustrating to me. Have you had any relief from prostatits? If so, what did you do or what doctor did you go and see?


Mon Jan 02, 2012 10:39 pm
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Joined: Tue Jan 03, 2012 1:31 am
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Post Re: My Story - Need Help Please!
Buckalou,
I too have a wide range of symptoms similar to yours. I've had several urine cultures, bloodwork, testicular ultrasound, and a pelvis mri all of which came back normal. The third urologists i visited basically pushed me out the door stating "finish your antibiotic (cipro)" and if i still didnt feel better, i would be sent to muscular/skeletal specialist. At first i thought he was crazy but i began to study the stanford protocol and their book, "a headache in the pelvis." Im starting to believe my condition (non-bacterial prostatitus) may in fact be due pelvic floor muscle retention. However, I believe that tension was brought on by panic/anxiety (fear of not knowing what was wrong with my body and not having any control over it) and caused my symptoms to escalate drastically. Point im making is that you sound extremely upset and stressed out, which in turn can make your symptoms much worse. Please, Please, please try to keep your mind at ease. You will find some kind of resolution out there. This is a tough disease to beat (focus more on minimizing your symptoms)
. However, your young, as am i (31 yrs old) and you care about your body. Keep up the persistence! Keep me updated bro!


Tue Jan 03, 2012 1:59 am
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Joined: Sun Jan 01, 2012 8:00 pm
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Post Re: My Story - Need Help Please!
Bbb15,

Thank you for your response and motivation. If you don't mind me asking how did your prostatitis come about? Was it out of nowhere? Do you know the cause? I have been trying to relax and keep my mind calm but as you know it is very hard and stressful. I have seen a psychologist as well but it's not seeming to help much since it's hard to know what I'm going through unless someone has it themselves.


Tue Jan 03, 2012 11:43 pm
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Joined: Tue Jan 03, 2012 1:31 am
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Post Re: My Story - Need Help Please!
Buckalou
To be honest with you, im really not that sure how my prostatitus began. I can tell you this, Im 31 and extremely fit. Hadnt been to a doctor for 7 years until this crap started late october. I will say this, ive always urinated several times a night for years (maybe this was an early sign that i gave no real thought to) In late october i did a testicular exam and found what i thought was a lump. (Because of my insurance, I had to wait quite a awhile before i could get ultrasound and mri) So, during this time frame (about 4 weeks) i couldnt keep my hands off my left testicle, constantly checking it and convinced myself i had cancer. (turned out the lump was natural part of anatomy called "epididimis." Reason im telling you this story is becasue my "stress" and "anxiety" (similar to yours) got the best of me and turned frequent urination at night for years into pain and burning throughout genitals and pelvic region. Once again, i highly believe that if you stress enough, symptoms can be intensified. Finally, after ultra sound and mri came back negative (realizing i didnt have cancer) my stress levels subsided and so did my symptoms, greatly. Im not symptom free, however, everyday life has become much easier for me. I did not see a psychologist but i did go on an antidepressant and meds for anxiety. I recommend you talk to your doctor about these options. They may help with easing your symptoms. One more thing, I agree you got this from your catheterization and even though your tests arent showing bacteria, you could still have a bacterial infection that doesnt show up. Its too ironic that you get "non bacterial prostatitus" right after a catheter. Sounds to me like theres bacteria going on. May be trial and error with antibiotics (even though they suck) Good luck! Feel free to chat any time bro. I do feel your pain. I really mean that.


Thu Jan 05, 2012 12:45 am
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Joined: Sun Jan 01, 2012 8:00 pm
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Post Re: My Story - Need Help Please!
bbb15,

Your advice is very helpful. I wasn't aware that a urologist can prescribe antidepressants and meds for anxiety, I will definately look into that. I don't know if you know much about this but do you think there's a chance that I have a urethral stricture? I keep thinking about what it can and can't be and it's driving me nuts. I agree with you 100% it seems VERY odd that this all happened after a catheter and that it is non bacterial prostatitis. However, a while ago I read an article that states that even if diagnosed with nonbacterial prostatitis there is indeed some bacteria but very small amount. I can't find the article but I've done EXTENSIVE research. I am going to see a new urologist next week. Hopefully a new set of eyes and ears will help. I just need a ray of hope.


Fri Jan 06, 2012 12:01 am
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Post Re: My Story - Need Help Please!
Update: Saw a new urologist last night, same stuff. He agreed with my other 3 previous urologists and said he is leaning towards non bacterial prostatitits. He suggested that since I have had almost every test done except a cystoscope, he wants me to get that done. Problem is I am very scared and nervous to have this procedure done. He wants to have it done in his office but I NEED to have it done in a hospital setting so I can be relaxed. I have anxiety and the fact that this all happened after a catheter was inserted in me makes me even more skeptical about things being inserted up my penis. He said that he has a flexible scope. Has anyone ever had this procedure done, if so does it hurt and what could it possibly show?

Thanks


Tue Jan 10, 2012 11:05 pm
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Joined: Sun Nov 28, 2010 12:52 pm
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Post Re: My Story - Need Help Please!
The medical magazines and Urology Journals carry many ads about cathaters that may help prevent Urinary Tract Infections (UTI). it seems logical to me your prostatiitis was a direct or indirect result of the cathaterization.

I think it makes the caregivers very cautious but if you cannot empty your bladder there is no choice probably.


Wed Jan 11, 2012 7:10 pm
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Post Re: My Story - Need Help Please!
I can empty my bladder, that is not my main problem.


Thu Jan 12, 2012 10:15 pm
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Post Re: My Story - Need Help Please!
Update: So before having a cystoscope since my urologist said he thought it was non bacterial prostatitis we are treating it like that for now. He prescribed me Amitriuptyline HCL 25 MG (brand name Elavil) and I take one a night right before I go to sleep. Has anyone taken this medication I believe he said it is a tricyclic and should help to inhibit the conduction of c fibers.

Thanks


Mon Jan 16, 2012 1:47 pm
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Joined: Sun Oct 09, 2011 2:57 pm
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Post Re: My Story - Need Help Please!
hi.
My Doctor prescribed Amitriptilene to help me cope and to help with sleep , mine is a lot better now and only have occasional attack, personally i believe that it goes on its own and no amount of drugs seem to work.
stress seems to aggrevate it , but ive found prostate draining (milking) seems to help
good luck.


Mon Jan 23, 2012 10:20 pm
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Joined: Tue Jan 24, 2012 12:51 am
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Post Re: My Story - Need Help Please!
Sorry you are having so many problems. I started having problems at your age. It started when I received a digital exam for the first time when my prostate started to bother me. (lower pelvic pain). After the exam, the doctor pressed so hard it started to become irritated in my scrottum area and throughout my urethea. This lasted for a year and a half. I tried everything. It will eventually heal over time. I had the scope up my penis. They didn't find anything. It was only painful when they got to my prostate area. Once they clear that. It goes into the bladder rather quickly. They will fill the penis full of the numbing jel before the insert the scope. That will help ease the pain. Just realize what their doing and raise above pain with deep breaths and try not to let fear overtake you. You may be experiencing a growth in your prostate at a young age. It will keep growing every five to seven years. I am 62 and have dealth with lower muscle pelvic pain off and on all my life since I was your age. Hot sitz bath will relax the lower pelvic muscle and help ease the discomfort. Watch what you eat. Coffee and alcohol is a negative. watch your intake of these items. Eat right, not a lot of spicy foods. Try to be as stress free as you can. I know it's hard in these times. Take care.


Tue Jan 24, 2012 1:18 am
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Joined: Sun Jan 29, 2012 1:48 pm
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Post Re: My Story - Need Help Please!
Buck

I had the up the penis scope done - frankly, it was pretty pain free except the point around the prostate as the other poster mentioned - and very quick - and very messy. I actually cleaned up afterwards.

My cause of what has now become a 3 mo prostatitis was definitely some kind of STD - however, apparently, none of the standard ones since they presumably have been tested and come back negative. I had unprotected oral sex and had a small burning in my penis the next morning that went away and I forgot about it until Monday when it came back like a rage plus white puss oozing out of my penis. Yeah - pretty disturbing at best... I did not even know I could get an STD from oral sex but I have since done research on the web and it is absolutely the case.

I too have been really disappointed by the urologists I have been to - they don't have an answer.

There is a lot more - I can add some more later re: specifics. I will mention that I have been using doxycycline and have found that has significantly reduced the body fever that I was getting - and when I stopped that fever returned, etc.

I am at a complete loss as to whether even have sex again because I worry that I would infect someone else with an unknown bug and I would not want to wish this on anyone - obviously I will use condoms in the short-term.

BTW - the term "prostatitis" in my book now simply means the Dr's don't know WTF is going on with you and so they provide a convenient label - nothing more meaningful than that....


Sun Jan 29, 2012 1:56 pm
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Post Re: My Story - Need Help Please!
Thank you very much for your response guys. I have an update: After taking ONE Amitriptyline pill caused me to not be able to get erect the following day. I immediately stopped taking it. My urologist now recommended that I do something called Pelvic Floor Therapy which is a physical therapy that apparantly can help relieve symptoms of prostatitis (so he says). I found a great deal on Prosta-Q for a 30 day amount. I am going to start taking them tomorrow I heard that that can help as well. I don't know what to do anymore besides that.

Aner: What else have you done or tried to reduce symptoms?


Tue Mar 06, 2012 12:30 am
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Post Re: My Story - Need Help Please!
Buckalou,
I believe your urologist was correct in referring you to physical therapy. Particularly a pelvic floor specialist as they can do internal trigger point therapy (through your rectum not fun, but effective) I've had this nightmare going on four months and have done extensive research on it bro. There is no infection. Were you an athlete? Do you lift weights, or frequently exericse. Reason im asking is there has been a lot more evidence latley in pudendal nerve agitation causing all these crazy various symptoms. Look into bro. That nerve activates the anal sphincter, urinary sphrincter and the muscles during ejactulation. Hence, when these nerves get stretched or compressed by a tight pelvic floor, they manifest a ton of pelvic pain symptoms. My pt has helped but im far from being cured. Unfortunatley, ive had to cut out heavy lifting and strenuous exercise in order for that nerve to recover. It takes a long time. One more thing to consider, I know it sounds crazy, but everytime you have a bowel movement, particularly a strenous one, you aggravate that pudendal nerve. Theres a great website called natures miracle about squatting during defecation instead of sitting. Basically, the modern toilet is not properly designed for pooping without strain (valsalva manuever). Its all about the pelvic floor and nerves bro. Dont let anybody else tell you otherwise. Good luck. And instead of prosta q, try q urol (same company but 68 percent more potent and much more effectice. Keep me posted
bbb15


Tue Mar 06, 2012 8:32 pm
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Joined: Sun Jan 01, 2012 8:00 pm
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Post Re: My Story - Need Help Please!
bbb15 wrote:
Buckalou,
I believe your urologist was correct in referring you to physical therapy. Particularly a pelvic floor specialist as they can do internal trigger point therapy (through your rectum not fun, but effective) I've had this nightmare going on four months and have done extensive research on it bro. There is no infection. Were you an athlete? Do you lift weights, or frequently exericse. Reason im asking is there has been a lot more evidence latley in pudendal nerve agitation causing all these crazy various symptoms. Look into bro. That nerve activates the anal sphincter, urinary sphrincter and the muscles during ejactulation. Hence, when these nerves get stretched or compressed by a tight pelvic floor, they manifest a ton of pelvic pain symptoms. My pt has helped but im far from being cured. Unfortunatley, ive had to cut out heavy lifting and strenuous exercise in order for that nerve to recover. It takes a long time. One more thing to consider, I know it sounds crazy, but everytime you have a bowel movement, particularly a strenous one, you aggravate that pudendal nerve. Theres a great website called natures miracle about squatting during defecation instead of sitting. Basically, the modern toilet is not properly designed for pooping without strain (valsalva manuever). Its all about the pelvic floor and nerves bro. Dont let anybody else tell you otherwise. Good luck. And instead of prosta q, try q urol (same company but 68 percent more potent and much more effectice. Keep me posted
bbb15

I appreciate your response. With regards to being an athlete I do sports such as skateboard and surf. However these activites are totally unrelated to my prostatitis. I do not do any lifting or even go to the gym to work out. As I mentioned in my first post this all happened AFTER being catheterized, it is no doubt that that caused some sort of irritation. It has been about 2 years and unfortunately I still have symptoms. By the way what is the difference between Q Urol and Prosta-Q? (how much does Q Urol cost?) Also what type of exercises do you do at physical therapy for pelvic floor? What is an internal trigger point?


Tue Mar 06, 2012 11:10 pm
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Joined: Tue Jan 03, 2012 1:31 am
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Post Re: My Story - Need Help Please!
Buckalou,
Any hip flexion sports, especially basketball and surfing could indeed cause pudendal irritation and manifest or exacebate your symptoms. I do agree it may have started from catheter, but at least look into the pudendal irritation stuff. At this point you have nothing to lose beings no bacteria is showing up in cultures. The difference between prosta q and q urol is that q urol also contains bee pollen which has been clinically proven to help with urinary frequency, urgency, and even for inflamation. (its an added bonus besides just the querceten found in prosta) It also contains pumpkin seed oil. No lie bro, its good stuff. I've tried prosta q and q urol is way more effective. Urologists in my area are even suggesting it due to its effectiveness. Internal trigger point therapy is when they put lubricated rubber glove finger into your butt and press and hold and theile (stretch)the different internal muscles. The thoery here is that these muscles get shortened and tightened from physical activity. Thus, pulling on your bladder/prostate causing urinary and sexual symptoms. Relieving this pressure=relieving symptoms. Good luck bro. Keep me posted


Wed Mar 07, 2012 8:25 pm
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Post Re: My Story - Need Help Please!
Just thought I'd mention this as well. NONE of my urologists have taken a culture of my semen yet (Expressed prostate secretions). Is that a big deal and is that something that should definately be done? I have seen about 5 to 6 urologists and none have suggested that. Any thoughts?


Wed Mar 07, 2012 11:38 pm
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Post Re: My Story - Need Help Please!
Buck
They didnt take mine either. I went to four urologists. I think they're too cheap to. Someone previously in this forum mentioned that there is an in-home kit you can purchase and send the culture off to a lab. Not sure how much this costs. Look at previous topic discussions. I know i saw it in here.


Thu Mar 08, 2012 4:58 pm
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Post Re: My Story - Need Help Please!
bbb15,

If you can help me find the post I'd greatly appreciate it. My questions is is it worth mentioning that test to my urologist to have them do it? I never thought about it and am just trying to see if that can really help diagnose what kind of prostatitis I have or bacteria I have if any. I have also read that it may be inaccurate or unhelpful as well?

Thanks!


Sun Mar 25, 2012 12:33 pm
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Joined: Tue Mar 27, 2012 11:13 pm
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Post Re: My Story - Need Help Please!
Sorry I'm a little late to post. I also had a stethoscope and started having symptoms immediately. I looked for the nature's miracle website and couldn't find it. Does someone have the address? Also, has anyone had any luck with medications????


Wed Mar 28, 2012 12:05 am
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Joined: Tue Apr 17, 2012 8:42 am
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Post Re: My Story - Need Help Please!
buckalou wrote:
...... Another symptom I forgot to add is a sort of tingly/itchy sensation through my penis, it is very annoying.

To whoever reads this post thank you very much for taking the time, I sincerely appreciate it.


Hi Buck,

That itchy feeling you experienced was one of the symptoms I get when I have prostatitis. Two years ago when I had my first bout of it, when I peed, it was a hot (not burning) sensation and then the itchy sensation in my penis would occur for a few minutes. I am going through it again (2nd time in 2 months) and am seeing the doctor tomorrow. IMHO, prostatitis is a scourge. Not only has Paxil ruined my sex life, now I have to deal with prostatitus which makes having sex a thing of the past. :( Good luck! I hope things get better for you and everyone else suffering from this crap!!


Wed Apr 18, 2012 9:46 am
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Post Re: My Story - Need Help Please!
Go see Dr. Bahn! He is a hero to those of us he has treated that suffered from this horrible disease. I went from borderline suicidal to feeling great! Sex life is better than ever as well. Hopefully it will last, I know of people that are going on four years symptom free after several years of suffering thanks to him. I am only a month out from his treatments but so far so good. I figure the worst case scenario is that it will be no less than a very effective treatment for me. Beats the h*$@ out of suffering.


Wed Apr 18, 2012 11:36 am
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Post Re: My Story - Need Help Please!
Where is Dr. Bahn located?


Wed Apr 18, 2012 8:56 pm
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