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 opinions, suggestions, self diagnosis -seminal vesiculitis 
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Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post opinions, suggestions, self diagnosis -seminal vesiculitis
Hello everyone, this will be my first posting and just looking for suggestions to fix my problem...Long story short, I have been suffering for around 13 years now.. pain in my lower left groin/pelvic area..years of countless doctors, antibiotics and LOTS of reading/learning , I am suspecting that its my left seminal vesicle...started asking for ways to get antibiotic into it about three years ago. Hense, what led me to this urologist plain told me he couldnt do it...I was hoping to get zithromax injections into the vas deferns since he does perform vasectomy's.

I will save my lengthy symptom/ yearly progression list for a second posting, but just tell about my initial symptoms. what i did and now realizing after reading posts on this forum what I / doctors SHOULD HAVE DONE. in 2001 about 20 minutes After i finished Masturbating one night got a very hot feeling against my bladder.. left side . didn't have to go pee, just like somebody heated up a paper clip with a lighter and held it against my bladder. it lasted for 30 minutes.

Next ejaculation event same thing, just lasted 35 minutes.. this pattern continued, each time a little longer. i kept referring to this as something swells up and gets hot. no burning in my penis or urethra when I pee'd and I was still able to fill my bladder up at this point. found out if I ejaculated with a full/ near full bladder and THEN went and pee'd afterwards, never got the hot paper-clip feeling at all.

could tell something was swollen up but it wasn't pressing up against my unconcerned and sent me on my way with sulfamethoxazole pills(1st mistake, should have been tested extensively for chlamydia,e-coli, staph),

over the next two years swelling lasted longer and longer between ejaculations and I think at the two week period it never went down again(since i could never last longer than two weeks with out masturbating). also 3/4 to full bladder was getting uncomfortable, like something hard poking the side of it. next phase -left scrotum sack became hot and swollen up slightly, almost a tickle tingle throughout my urethra.this actually was arousing me.

went to urologist this time, said I had a swollen epididymitis he could remove it but would leave more scar tissue than anything. again, no tests done, seems unconcerned and sent me on my way(mistake 2, should have done semen analysis at this time). heat and swelling went down but large epididymitis remains to this day... left side double size of right.

Next phase.. was still able to push pee out using my bladder (detrusor muscle) and with decent force, but could tell something was starting to block this muscle.. and two ejaculations later I couldnt use this muscle anymore.. only my pelvic floor muscle.. still pee'd decent just couldnt push it out with force.. just a steady flow now. I think my semen changed a little yellow at this point, no blood, no clots.

Next phase MOST IMPORTANT.. about three and half years in got ear infection in left ear..(first one of many) doctor gave me Zithromax..z-pack (6 day). well on the fourth day of treatment whatever was swollen in my groin started to go down and continued each day to get better.. (FIRST TIME EVER SOMETHING WAS WORKING) but zithro was for my ear??.. called doctor and told him it was fixing my bladder infection and needed alot more zithromax..

he said that no way the zithromax has anything to do with treating bladder infection and refused to give me any more, quoting (antibiotic resistance or insurance wont cover) I can't remember.( MISTAKE THREE!!! and looking back I wish I had done what ever I could to get it).. apparently antibiotic only works the first time on seminal vesicle.. nothing has worked since... and a few days later my swollen pelvic returned to the same as when i started zithro.. ear infections have continued to this day...

I cant seem to find a correlation between ear and seminal vesicle except maybe staph, apparently it can appear anywhere in the body....I dont know!! I am at a loss what to do. Ten years later and now chronic, life has gotten pretty bad... constant pain in back,pelvic,groin and about six ounce bladder capacity... life sucks... I am considering going to see Toth in NY but i dont want to approach him like i know whats wrong.

Tue Nov 11, 2014 12:27 am

Joined: Thu Nov 29, 2012 1:46 pm
Posts: 345
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
Dr, Kaploun in Toronto always give zythro for prostatitis he believe mycoplasma and ureaplasma are responsible for many pristatitis cases. Ear infection and prostatitis does bake sense since immune system affected.

Thu Nov 13, 2014 11:34 pm

Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
Been 2 years since I have had any news to update, just dealing with pain day to day. Quality of life really poor. Pain meds, sleep as soon as I get home from work, depressed, just being a zombie, looking for ANYTHING that might fix me.. My family doctor retired and waiting 10months to get a new doctor didn't help.. but this turned out to be a positive thing... My new doctor had previously worked with a urology doctor at some point and got me in at Virginia Urology of Richmond Va. with the former colleague. Started going there mid June .

First doctor I saw listened to me and determined he didn't specialize in the field that could help me, but he ordered a MRI and connected me to a doctor who he thought would. early July Mri done(got my own copy). I did not notice much difference in previous MRI vs this one...what I did notice was MISSING pics.. apparently the time between "slices" is definitely enough to miss small anomalies.. I really wonder if the technician "chooses" what pics to save in particular run..

Met with DR Joseph H Ellen in late July to go over MRI , and He immediately said "you got a blockage". I got emotional and teary eyes. This is the first time I have EVER had a doctor give me a diagnosis that I agreed with.. He explained in detail some points on the MRI that I had misinterpreted and even though my left seminal vesicle was dilated, the point of blockage couldn't be seen. He suggested we do dye injection into my VAS Deferens (similar procedure to vasectomy) and see where it stopped. At the same time widen my ejaculatory duct. sounds good..

Late july went in for 1st outpatient procedure.. HURT like crazy to pee and lots of blood... after a few days of recovery really didn't notice any difference.. pain spot on my left side still same. nothing changed at all.. after a cysto, Dr said lets do another resurrection of the ejaculatory duct, just a little more aggressive. .ok..

August procedure was silular as before, put Catheter in this time. left office and really had my doubts.. Catheter tube gave me a reference point that I could measure every pain spot from...still hurt about 13mm left of dead center... Next day went to use #2, that was very difficult and I strained quit a bit.. well this was when the "change" came... Semen came out from around catheter tube, very white and thick. quite a bit.. then immediately followed by blood.. later that Night I could NOT find pain spot anywhere

removed catheter the next day and still pain free.. WOW!!! first time in 15 years.. could this fixed? was it this simple? well yes and no... pain came back in about 4 days but it MOVED.. about 15mm lower... follow up visit with a cysto and he was able to touch something with scope just inside ejaculatory duct. so 3rd surgery now scheduled in two weeks.. fingers crossed.. I am looking forward giving a positive update ...

Last edited by magnagreg on Mon Oct 17, 2016 10:39 pm, edited 1 time in total.

Sat Oct 15, 2016 1:48 am

Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
Magnagreg, your story is unusual. Keep us updated.

Sat Oct 15, 2016 7:41 am

Joined: Thu May 12, 2016 6:30 pm
Posts: 210
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
Very interesting. It seems to me the pain in your lower left groin would be vas deferens. Also, one of the earlier MDs thought you had epididymitis. It seems possible these areas could get irritated from a blocked ejaculatory duct further downstream. Is your groin pain history now?

Sun Oct 16, 2016 5:43 pm

Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
pain is still there, just not directly under my bladder... its about 2mm left center just under top of pubic bone. Just inside left ejaculatory duct. its actually very difficult to push on it now. if this had just started, I can imagine the difficultly I would have explaining this to doctor.. That seems to be the difficulty I've had over the years, explaining events and details that the doctor might recognize.

I swear is a stone in there.. like this link ... 840&flag=1

Urology seems to be a guessing game.. maybe due to the small delicate areas and lack of direct access to each area. systematic procedure would apply here, pills to simple in office procedures, culture tests and scans, elevating tests along the way till the problem is solved.. sounds logical, but this not the way it is.. if your doctor doesn't recognize your symptoms or just puzzled he is probably NOT GOING TO HELP YOU... and he wont tell you to go somewhere else.

That's the catch, find a doctor you connect with.. Don't assume your doctor "knows best" and do your own research. I have read books, researched sites and scoured over forums for years. some symptoms I can relate to, most I don't.. I see the same complains over and over, and ALWAYS perceived/explained differently. most information on internet is 10 years old, and filtered

it doesn't help that none of your information can be traded with other offices like in a message board, multiple inputs really help. arrogant doctors and stupid laws prevent this. this really SUCKS.. cause who is going to loose. .ME/YOU the patient. this needs to change...

Tue Oct 18, 2016 12:07 am

Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
well, wish I had good news to report here but no. 3RD surgery and two week follow up just done and I'm no better than when I started. :| maybe worse(still healing). Doctor has done THREE resurrection of ejaculatory duct procedures along with de-roofing one utricle cyst all on my left side. He shot dye up in my seminal vesicle and vas deferens and took x-ray. didn't see any stone.

Dye flowed throughout easy and clearly seen on screen. performed cysto today and said everything open and flowing... I'm actually still sore from last procedure due to 2nd catheter in seminal vesicle so poking around with scope was quite painful, even though the spot that hurts is in same area.(2MM LEFT DEAD CENTER JUST AT TOP OF PELVIC BONE). so go back in month for repeat cysto.

This is a major blow to my hope of being pain free or stopping my general downward spiral quality of life. Doctor didn't have any explanation or plan.. I just don't know what to do now..

Wed Nov 09, 2016 1:27 am

Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
Update, Just at 2 month mark since final surgery and I must say I/doctor under estimated recovery time... .once I hit the 6 week mark, things really improved. And still getting better... Urgency, burning and urethral itching all gone.. So was the surgery successful? Yes..... and No... maybe better put, half way there.. Really have new and/or different symptoms

my Main complaint (pain spot I can push on externally, diminished bladder capacity,nocturia) are still there but not as bad.. Since the pain spot has moved, I now believe it is in my Prostate. when the doctor scoped me last month, there was a spot between the ejaculatory duct and bladder opening which was VERY sore. nothing was visible on scope, so I believe this is in the prostate?

even though output has definitely increased, my semen is very watery and clear now.. has no lubricity whatsoever ..I'm thinking the acini sacks are stopped up now? still researching on this...

but MOST important thing here is ..pain .its not getting worse.... 2-3 days of fullness and bloated feeling I use to feel on my left side after ejaculation is GONE... back pain is subsiding...all around feeling a little normal again... so recap current symptoms:

pain spot left off center below bladder( can push externally just above pubic bone), diminished bladder capacity( much better that before surgery), left testicle hydrocele , very watery semen( more output though).. loss of lubricity in semen... pre-cum still ok though..

I'm still waking up too much at night and can pretty much go to the bathroom anytime I want to... sometime I don't need to, just habit I guess....I need to figure out how to give myself a prostate massage.. not excited... :( But I'm in a better place than I was a month ago and probably in a long time... so there is a light at the end of the tunnel...:)))))))

Wed Jan 11, 2017 1:13 am

Joined: Mon Sep 08, 2014 12:05 pm
Posts: 16
Post Re: opinions, suggestions, self diagnosis -seminal vesiculit
6 month update, with positive improvements along with a new medical condition. I'm now a Type 2 Diabetic. Extreme symptoms came on right at the two month mark after final EDO surgery. Don't know what exactly made the full symptoms appear(extreme thirst, weight loss, clear urine) but I was taking dietary supplement VIDAL REDS everyday along with Vitamin water.

I'm NOT overweight(150lbs) so my regular doctor ordered blood test and glucose was high. Started on metformin and WOW, what a difference. Bathroom visits dropped from 20+ times a day to maybe 8. :shock: I'm still in disbelief but just HAPPY for the relief. :D :D :D

Urology doctor scoped me out and is still happy with his work. Only noted the left ejaculatory duct was slightly narrowed. Offered to do another MRI but I declined. I'll wait till a 3-d ultrasound is available or something that with be able to see acini sacks within prostate. I still believe I have several stopped up on my left side. Also stopped finasteride at this time(wasn't doing anything).

Chiropractor Visits have been a work in progress with very positive results.. I actually look forward to them. :D I was talking to him about pudendal neuralgi(PN) and pudendal nerve entrapment(PNE) after he hit on a nerve on my left side that "tingled" THE spot between my bladder and prostate. This got me reading a lot on this and what do ya know.. same symptoms as prostatitis and pelvic floor dysfunction. Maybe part of my problem all along...

Fri Jul 14, 2017 12:13 am
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