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I'm a 33 year old male with a very frustrating issue that I'm hoping y'all can help me diagnose. I've been to several urologists who have not helped me very much (the list of things that have been done is included below).
History
Not sure when it started (at least a year ago)
possibly after riding bike after a long time
Symptoms
General
- frequent clenching of pelvic muscules (kegels). have to consciously relax them, frequently
- tip of urethra is often tender
- also feels like the urethral sphincter is not letting fluid out completely, (not opening all the way to let everything out?)
- occasional "burning" sensation after bladder is emptied (as i'm "finishing up"
Urinary
frequent urination (more than before... 4-5 times a day?), small amounts of fluid (other than standard urination), sometimes clear, but always watery consistency
Frequent need for urination, sometimes unconsciously "holding it in"... doesn't seem to be as much of a 'urgency requirement' as before
Sexual:
Ejaculatory difficulty - muscles out of sync, not everything comes out (have to "milk" it out afterward), generally uncomfortable and painful, feels like i have a cock ring on or something.
Feels like the muscles are out of sync / not doing their correct thing during the orgasm/ejaculation cycle, or being blocked by the urethral sphincter somehow.
Diagnostic Procedures i've had done
Cystoscopy: clean bladder, clean urethra
Prostate check (2x): normal
UTI test (2x): clean
Voiding test: bladder gets emptied (apparently)
Things that seem to help:
Heat/Hot water (muscles relax more in the shower), but not 100%
Things i've been told it is
Non-Bacterial Prostatitis
Chronic Prostatitis
Pelvic Floor Syndrome
Treatments that have been suggested:
Anti-inflammatories
Alpha blockers (with the caveat that it would cause retrograde ejaculation...not an ideal solution)
Lifestyle: geek. mostly sedentary .a lot of sititng.
First I should say I'm not a Doctor but I may be able to help you with getting the proper diagnosis/diagnosis's from your Urologist.
When I read what was going on with you it was almost exactly what happened to me in 2002. So I'll tell you a little about my story and then try and pinpoint some "real" helpful steps to take.
What happened to me in 2002 that caused me concern, was all of the sudden my penis was in some severe pain that I couldn't explain. And over the next few month's I started noticeing some other changes, "down their" too. I started going to the bathroom a lot especially at night. Sometimes between 5-10 times I would get up to go but that caused problem's too. My urine stream became abnormal. It was stopping and starting and generally I couldn't empty my bladder all the way. (unless I stood their for like a half hour trying to piss.) It just felt like something was blocking my flow. And sometimes I would feel like I had to go really bad, but when I urinated only a very small amount trickled out.
Other symptom's were happening to, (over the span of 9 months) the "problems" started in Feb. and aside from 2 ER visits it took me until October to see an actual urologist. I was very scared and I felt like a Dr. would think I was crazy if I told him all the things that were happening to me.
But like you I was having kegal like spasm's. I remember saying to one doctor it's like my anus muscle's were spasming over 500-1,000 time's a day, and that it would happen with the muscles in my penis too but not as much. And like I said he thought I was crazy. Well he didn't say that but he said, huh I've never heard of that happening. I should tell you that driven a lot by my pain and then a lot by my disfuction I saw Dr. after Dr. for 4 and a 1/2 years until I finally recieved a diagnosis that made sense. I am from Ohio and I saw Urologist's from OSU medical center, and the other major hospitol's Urologist's too many time's to count. I also saw my share of family practice, or internal medicine Dr.'s. And between seeing those guy's I would often have to go to the E.R. to help with my pain. Like you I had pain near the tip of my penis, and then i had pain generally in my urethra.
But back to the Doc's. They were about as helpful as dropping a bowling ball on my foot. The first thing they tried was STD's. They tested me for every STD under the sun based on the fact that I was having pain at the tip of my penis. That's it. No puss, no warts, red spots, crabs, anything else to lead to that being the problem. So i went through 4 seperate swabs (AVOID at all costs) to prove it wasn't an STD. Then they gave me a cystostopy and said their was nothing wrong. Then I saw another Urologist who wanted to do another cysto. and i agreed and he said their was nothing wrong except I had a high bladder neck. He explained to me what that was and said it was common and not a serious condition. Back to the drawing board. Like you they also said to take anti-inflammitories, beta blocker's which i took and yes it did cause retro-ejaculation which was a very strange expieriance. But after staying on it for 2 months and not having any of my symptom's change, i quit taking them. Then they gave me a bunch of garbage diagnosis's. They would say this "could be" the problem but were not sure. I figured they didn't want to mis-diagnois me and get sued or something. But they used Prostatitis, which has to do with your prostate only and could not be causing all of my symptoms. Then one Dr. said it could be Interstycial Cystitis or I.C.. Which gave me false hope for a while because it was the only thing that was remotley close. But after a lot of self-study, I relized all the pieces of the puzzle just didn't fit. It was a while ago so I can't remember all the differance's... Im going to hve to cont. out of letters..
I know you said you had some ejactulatory issues as well and I did too. Mine wasn't so much as having to sqeeze it out, but my amount of ejaculation seemed to go down a lot. And with all my muscles going out of control, or like you said just being out of sync it caused me problems. That mixed with the pain and also feeling like I wasn't able to get a full erection, (about 75-85%) or so, I could still have sex but it just wasn't full. But that made sex a big obstacle for me, and I pretty much went celibate by choice. I'm not sure if your sysmptom's were that extreme or not, but all of this happening to my manly parts and Dr.'s telling me they were basically clueless caused me a lot of emotional junk as well. I was always a normal guy, but now i felt unnormal so I went through a lot of depression, hopelessness, and feeling like I was never going to get better. And a lot of the Dr.'s would seem like they didn't even believe me, and told me I was too young to have anything wrong, and it was probably physco-symatic. (All in my head) Wich is complete bull , I was expieriancing physical problem's that had nothing to do with my head. I'm just telling you this b/c I'm not sure if you've been through this or not. But just some advise, when a Urologist is asking about your mood or your feeling's he's setting you up to say it could be all in your head.
Sorry I guess I should really move on to what finally happened and where I'm at now. Like i said after 4 1/2 brutal years of going though all these symptoms and still not being any closer to getting help, someone finally referred me to Clevland Clinic. Which is like a mayo clinic, their supposed to be top notch. And I agee and disagree.
Well my first appointment was with a Urologist, and he was a blessing and a curse. He put me through all types of testing, including Urodynamic's, a Penile injection to see my penis fully erect, to look for disformation's, etc. anyway after a few visit's and a lot of answering his question's he gave me a split Diagnosis. He said what had happened to me was most likley caused by my penis being injured during rough sex, or a sport's injury, or something happening to injure my penis causing it to "fracture." He said this is called Peyronie's Diesease by Injury. But he also said it could also just be hereditary and sometime's it just happen's and most likley in that case someone in your family has Dyfison's Contracture in their hands or feet. But he also said that however the injury came about that all your Urologic Muscle's, especially your Pelvic Floor Muscles start to try and protect that area. So the muscles are constantly trying and retrying to cover over the injury causing the spasming and cliching. And he said the Diagnosis for that was, Chronic Pelvic Pain Syndrome. Even though my pelvic muscles were fine, this Diagnosis has to do with ur pelvic floor muscle's. And the Peyronie's Diesease, since it causes a deformation in your penis, mostly in the form of a curvature, that's what causes pressure on ur urethra causing all of the bladder problem's. Frequency, emptying the bladder, erection and ejacultion dysfuction, etc. Wow. Finally it made sense. I was so flipping relived to finally know what was wrong. But unfourtunatly it was short lived. Here's the curse. I believe strictly b/c I didn't have insurance this is what happened.
He said the fix for this was surgical, and their were four differant methods used... Sorry I'm out of space again i really want to tell you the rest of my story so e-mail me at bdouble1919@yahoo.com
This can be from anxiety. It can also be from a nerve issue related to your chronic sitting. Since we can't see you, we can only guess whether you are overweight (which could contribute). And there can also be dietary influences (like caffeine intake) or structural issues (posture) or other factors that might be more obvious in person, but not part of the description above.
Were there any significant events in your life that occurred around the time these symptoms began? A move to a new house, a new job, something else?
I've never heard of any of these things causing urinary issue's. And Urinary flow problem's are Urological, as well as all the other symptoms listed.
Now I'm not a Doctor and I don't claim to know everything about the complex issue's of male urology. I just know from my expieriance and what I've been through, and that's all I'm offering. I wrote my comments b/c his story had a lot of simiaritie's to mine, (I thought) But it's up to him to say if my diagnosis's sound similar to his, and discuss that with his Dr.. Or he can say it's similar but he doesn't think it matche's up for him.
That's it. And I'm not one to say someone else is wrong, beacause I think to solve any problem it's best to have all the information possible.
But I guess what I'm trying to say is, where did you get this information that the reason's you listed could be the cause of these symptom's? If you found it here on Web MD or wikipedia or something I would love to know so I could read up on the subject. Because like I said I've never heard of those facts being contributor's to uriary problems. And I like to know everything possible b/c I have same symptom's.
Sorry so long. Thanks for your time. bdouble
There are many things that can result in SYMPTOMS located in the genito-urinary system, but that does not mean they have a root cause that is urologic.
Simply from your writing style alone we can tell that you have significant anxiety issues (at least around your symptoms) and this can significantly contribute as a root cause to many urologic symptoms such as those you describe. If you want to understand the connection, you'll need an education in traditional Chinese medicine, which would be too long to cover adequately here.
Your dismissal of physical symptoms caused by stress only shows an unfamiliarity with how the body/mind/spirit is interconnected. It does not invalidate the experience either from your point of view, or from the healthcare practitioner's point of view.
Peyronie's disease is a very specific condition, and is not commonly associated with the symptoms JMeyers described. And yes, if you go to see a physician, they are first going to look for physical causes for your symptoms, that's the nature of their business. It does not mean there are not other candidates for explaining the situation.
Men hardly if ever are diagnosed with interstitial cystitis, which isn't a disease anyway, it's a syndrome, a collection of symptoms, and many doctors would insist it doesn't exist because it's not a specific condition.
There are certainly potential root causes for JMeyers symptoms that I did not cover, but considering his initial description, and that your comments were not visible at the time I answered, the most likely next step in examining the circumstances is what I wrote about.
I was NOT answering you (Bdouble), I was answering JMeyers. If you want to talk about your issue separately, it should be in a separate post instead of hijacking this one. Please read my initial reply solely in the context of JMeyers original question. As I said, your post was not visible at the time I answered, probably because you starting writing the enormously long message before I quickly posted my reply, and it didn't queue in until after I had finished.
You (Bdouble) received a definitive diagnosis of Peyronie's and that should pretty much end the discussion of what happened in your case. As for your comfort level during the investigation of your reported symptoms, that's between you and the diagnostic procedures available to your urologist. Since none of us can know what was said or discussed at the time your condition was investigated, we can only assume that the urologist was following best practices based on the information available at the time, whether it was complete or incomplete.
First paragraph you say that my problem is completly unlike JMeyers and that he already had a diagnosis by a urologist that determined it was not 1 of these urological conditions.
J states, he has "frequent clentching of his pelvic muscle's and feels like he's doing kegal's frequently w/ his pelvic floor muscles." In my 1st response, ANSWER: "But like you I was having kegal like spasm's. I remember saying to one doctor it's like my anus muscle's were spasming over 500-1,000 time's a day, and that it would happen with the muscles in my penis too."
Ur second paragraph, "There are many things that can result in located in the urinary system, but that does not mean they have a root cause that is urologic."
RESPONSE: Name One
This is my personal favorite paragraph 3 you state, "Simply from your writing style alone we can tell that you have significant anxiety issues (at least around your symptoms) and this can significantly contribute as a root cause to many urologic symptoms such as those you describe."
You unknowingly completely contridict urself. It's very close too if not a great example of double-speak.
You say you can tell that I have signifigant anxiety issues, at least AROUND my symptoms. And that this can significantly contribute as a ROOT cause to many Urological symtom's.
So which is it. First you say my anxiety is found around my symptoms, or as a result of my symptoms. Then you say anxiety can significantly contribute as a root cause of uro symptom's.
So which is it. Are you saying b/c of my physical symptoms I have anxiety, or is it b/c
J states "tip of urethra is often tender." ANSWER: Also in my 1st response. "I had pain near the tip of my penis, and then i had pain generally in my urethra."
J- "frequent urination (more than before... 4-5 times a day?), small amounts of fluid (other than standard urination)" In 1st response, ANSWER: " I started going to the bathroom a lot especially at night. Sometimes between 5-10 times I would get up to go but that caused problem's too. My urine stream became abnormal. It was stopping and starting and generally I couldn't empty my bladder all the way....when I urinated only a very small amount trickled out."
J- "Ejaculatory difficulty - muscles out of sync...generally uncomfortable and painful." 2nd response,
ANSWER: "I know u saide u had some ejaculatory issues as well, and I did too." "ejaculation seemed to go down a lot. And with all my muscles going out of control, or like you said just being out of sync it caused me problems. That mixed with the pain."
Also we both had normal cystoscopy's, normal prostate exams, UTI's that came back normal, and voiding test showing that the bladder was empty.
J had been told that these were the problems; "Non-Bacterial Prostatitis,Chronic Prostatitis, Pelvic Floor Syndrome."
ANSWER: "But they used Prostatitis, which has to do with your prostate only and could not be causing all of my symptoms."
ANSWER TO Pelvic floor Syndrome, I recieved a diagnoisis on this as well, "But he also said that however the injury came about that all your Urologic Muscle's, especially your Pelvic Floor Muscles start to try and protect that area. So the muscles are constantly trying and retrying to cover over the injury causing the spasming and cliching. And he said the Diagnosis for that was, Chronic Pelvic Pain Syndrome. Even though my pelvic muscles were fine, this Diagnosis has to do with ur pelvic floor muscle's."
Both of us were put on anti-inflamatories and beta-blocker's.
And lastly J says in his title, .."Bladder Neck Obstruction? Whats happening?"
ANSWER: in my response, "and he said their was nothing wrong except I had a high bladder neck. He explained to me what that was and said it was common and not a serious condition."
So that is line for line of the same symptoms being present in J's post and in my expierance which I put in my response.
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