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 6 Year sufferer with no end in sight. Please help. 
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Joined: Sat Dec 22, 2018 7:28 pm
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Post 6 Year sufferer with no end in sight. Please help.
Hello.

Six years ago I had unprotected sex with another male and subsequently began experiencing prostatitis symptoms.

The main one with me is this discharge. A milky white, very sticky discharge so thick I have to "pump" my pelvic floor muscles to get it out, and it burns a lot as well. Sometimes it clings to the top of the toilet water and drips down in these long strings; or its like stringy spiders web that suspends in the water or clings to the side of the toilet bowl. That, along with depression, lowered libido, and pelvic floor muscle spasms/hypertension.

I've been to over a dozen doctors over the past six years. I've had urine tests, semen tests, prostate fluid test, MRI, ultrasound, all of which has found NOTHING.

I've been on several rounds of Levaquin, and Doxy & Cipro. All of which had the same results, it lowered the symptoms for a bit but didn't kill it.

My most recent doctor, an infectious disease specialist, put me on Bactrim and then Monurol. The Monurol actually had the most effect out of anything I've taken, getting rid of any and all burning pain with urination and discharge, but again, it didn't kill it and now that I'm off it the discharge came roaring back.

I'm at a complete loss here. The infectious disease specialist has mentioned IV antibiotics (the one with the pics line), but, because no bacteria has been cultured he's hesitant.

Maybe I'm naive, but, I am 100% certain that it's bacterial. I don't know why nothing has been found, but, with this much discharge, and with the effects the antibiotics had on it, I don't think its just inflammation.

Should I try to ask the doctor to do the IV antibiotics? Has anyone had any luck with them?

Are there any tests I could do to try and culture bacteria?

Does anyone have any clue what this could be?

Please, I'm losing my mind here. I can't take another doctor telling me "I don't know what's wrong with you."

I'm so angry all the time, and all I can think about is suicide. I know that sounds like a bit much, but, I just don't see any way out of this.

If anyone has any tips or insight I would be really thankful.

If not, just some support from others who know what this is like. Usually when I tell people its either "that sucks" or "at least you don't have cancer." They don't get what this does, mentally, to someone.

Thank you,
wally


Sat Dec 22, 2018 8:06 pm
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Joined: Sat Nov 10, 2018 1:21 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
Sorry for your pain.

Couple of questions:
-were you tested for STIs after the initial encounter? If so , what were the results?
-do you jave constant pain? If so, where?
-has any doctor examined this discharge under a microscope? If not, this must be done...you need to know what the discharge is...it almost sounds like semen...either way, ask a doctor to examine it.
-Have you had unprotected sex with anyone else? If so, did they get any symptoms?
-hows your ejaculation strength?

I would stay away from the IV, you said you were on levaquin, and levaquin reaches the exact same concentrations orally vs IV. Normally, i would say its for sure not bacterial, but your discharge is concerning, which is why you need to know what it is.

The most accurate bacterial test you could do would be a PCR of your semen.
If its not bacterial, then its most likely a autoimmune disorder, but 6 years seems like a long time for this. It could be nueral windyp and your nerves are going haywire.

I know, i hate when people say that too, i always tell them yes its mot like threatening but it is life changing.


Sun Dec 23, 2018 12:18 pm
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Joined: Fri Apr 13, 2018 4:05 pm
Posts: 47
Post Re: 6 Year sufferer with no end in sight. Please help.
For sure don't take anymore antibiotics you are going to make it more resistant. You are shooting darts. Interesting you said Fofsomycin (monourol worked) I had klebsiella as one of my bacteria the fofso instantly killed it. This is a stomach bacteria.So ya anal sex lol. You need to go somewhere that will fully drain your prostate and test during the process. Most people say I got tested but "no bacteria found. The infection is usually towards the back of the prostate if you have had it for a while or its multiple strains in different parts of the prostate. So just cause they do EPS test and it doesn't show on the first time when your prostate is full doesn't mean you are clean. For example I had staph which was the major one then klebsiella and like 3 other stomach bacteria's but they didn't come out towards the end. Staph seemed to be the dominate one. All the antibiotics created yeast problem. That's what I'm battling now. I wouldn't be surprised if you got some yeast in there also from all the antibiotics.


Sun Dec 23, 2018 12:54 pm
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Joined: Sat Dec 22, 2018 7:28 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
Cam3roni wrote:
Sorry for your pain.

Couple of questions:
-were you tested for STIs after the initial encounter? If so , what were the results?
-do you jave constant pain? If so, where?
-has any doctor examined this discharge under a microscope? If not, this must be done...you need to know what the discharge is...it almost sounds like semen...either way, ask a doctor to examine it.
-Have you had unprotected sex with anyone else? If so, did they get any symptoms?
-hows your ejaculation strength?

I would stay away from the IV, you said you were on levaquin, and levaquin reaches the exact same concentrations orally vs IV. Normally, i would say its for sure not bacterial, but your discharge is concerning, which is why you need to know what it is.

The most accurate bacterial test you could do would be a PCR of your semen.
If its not bacterial, then its most likely a autoimmune disorder, but 6 years seems like a long time for this. It could be nueral windyp and your nerves are going haywire.

I know, i hate when people say that too, i always tell them yes its mot like threatening but it is life changing.


Yup. Tested for HIV, Chlamydia, etc.... nothing
Got some pain right now cause my pelvic floor muscle is tight, gotta go to a PT or acupuncture to relieve that pain.
I'll make sure to ask my doctor to examine the discharge under a microscope.
I haven't been sexually active for a while, so, no.
Ejaculation strength is fine. Its literally just the discharge. Again, pelvic floor is too tight so ejaculation comes too soon.

I'll ask my doctor to do a PCR test. I don't think its an autoimmune disorder as I'm in fine health apart from this stuff.

Thank you for your response. I really appreciate it.
-Wally


Mon Dec 24, 2018 9:14 pm
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Joined: Sat Dec 22, 2018 7:28 pm
Posts: 8
Post Re: 6 Year sufferer with no end in sight. Please help.
tehdude789 wrote:
For sure don't take anymore antibiotics you are going to make it more resistant. You are shooting darts. Interesting you said Fofsomycin (monourol worked) I had klebsiella as one of my bacteria the fofso instantly killed it. This is a stomach bacteria.So ya anal sex lol. You need to go somewhere that will fully drain your prostate and test during the process. Most people say I got tested but "no bacteria found. The infection is usually towards the back of the prostate if you have had it for a while or its multiple strains in different parts of the prostate. So just cause they do EPS test and it doesn't show on the first time when your prostate is full doesn't mean you are clean. For example I had staph which was the major one then klebsiella and like 3 other stomach bacteria's but they didn't come out towards the end. Staph seemed to be the dominate one. All the antibiotics created yeast problem. That's what I'm battling now. I wouldn't be surprised if you got some yeast in there also from all the antibiotics.


Yeah! The primary bacteria cultured from the semen test was Staph Epidermidis. The infectious disease doctor thought it was a fluke, but, if your saying that it could be a part of the bacteria sludge currently infecting my prostate that could explain a lot.

I'm not on an antibiotics right now. When I go to my doctor again I'll have him drain the .... out of my prostate. Last time he got literally one drop of fluid, so, I'm not surprised they didn't find anything.

Thank you for your response.
-wally


Mon Dec 24, 2018 9:17 pm
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Joined: Fri Apr 13, 2018 4:05 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
I've heard mixed things about staph myself. Some people say its part of normal flora I don't know but for sure the whole time I had growth it was staph. Staphs seems to be a dominate type of bacteria. There's a lot of different forms of it. I have no clue to be honest if its bad or good lol


Tue Dec 25, 2018 2:10 am
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Joined: Fri May 08, 2015 2:59 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
If you've exhausted medical doctors and aren't getting anywhere I'd suggest potentially trying herbalism. Like a TCM doctor, American herbalist guild practitioner, or even some naturopaths are OK. It is just the naturopaths that are obsessed with vitamins for no reason I worry about. May need to try a few different people before you get anywhere, it is annoying, expensive, and time consuming I know, but the answers are out there somewhere.

Also, so sounds like it could be an infection. I have tried a few herb combinations over the years that can assist these things, but it is a bit of a stab in the dark.

Reishi and astragalus: Together boost the immune system, reishi also is relaxing. May help get of an infection over a month or so.
Reishi and ashwagandha: Reishi boosts the immune system, ashwagandha will relax you and reduce inflammation.

Possibly try the Keto diet. Or at least anti-inflammatory diet without refined sugar and processed foods, excess bread and dairy.


Tue Dec 25, 2018 8:56 am
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Joined: Sat Dec 22, 2018 7:28 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
chris85 wrote:
If you've exhausted medical doctors and aren't getting anywhere I'd suggest potentially trying herbalism. Like a TCM doctor, American herbalist guild practitioner, or even some naturopaths are OK. It is just the naturopaths that are obsessed with vitamins for no reason I worry about. May need to try a few different people before you get anywhere, it is annoying, expensive, and time consuming I know, but the answers are out there somewhere.

Also, so sounds like it could be an infection. I have tried a few herb combinations over the years that can assist these things, but it is a bit of a stab in the dark.

Reishi and astragalus: Together boost the immune system, reishi also is relaxing. May help get of an infection over a month or so.
Reishi and ashwagandha: Reishi boosts the immune system, ashwagandha will relax you and reduce inflammation.

Possibly try the Keto diet. Or at least anti-inflammatory diet without refined sugar and processed foods, excess bread and dairy.


I'm changing my diet and have completely cut out alcohol.

I'll definitely try out those herbal combinations. Western medicine has done squat, so let's head to the East.

Thank you so much for your recommendations and your response, it really does mean a lot.
-wally


Fri Jan 04, 2019 12:40 am
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Joined: Sat Aug 04, 2018 10:19 am
Posts: 8
Post Re: 6 Year sufferer with no end in sight. Please help.
wally2.0 wrote:
chris85 wrote:
If you've exhausted medical doctors and aren't getting anywhere I'd suggest potentially trying herbalism. Like a TCM doctor, American herbalist guild practitioner, or even some naturopaths are OK. It is just the naturopaths that are obsessed with vitamins for no reason I worry about. May need to try a few different people before you get anywhere, it is annoying, expensive, and time consuming I know, but the answers are out there somewhere.

Also, so sounds like it could be an infection. I have tried a few herb combinations over the years that can assist these things, but it is a bit of a stab in the dark.

Reishi and astragalus: Together boost the immune system, reishi also is relaxing. May help get of an infection over a month or so.
Reishi and ashwagandha: Reishi boosts the immune system, ashwagandha will relax you and reduce inflammation.

Possibly try the Keto diet. Or at least anti-inflammatory diet without refined sugar and processed foods, excess bread and dairy.


I'm changing my diet and have completely cut out alcohol.
I'll definitely try out those herbal combinations. Western medicine has done squat, so let's head to the East.

Thank you so much for your recommendations and your response, it really does mean a lot.
-wally



I'm from France.
So please excuse my mistakes.
I understand what you feel every day.
I've suffered since 2010 !

In my opinion, your prostatitis has infectious origin.

Have you been tested for gonococcus ?
Have you ever heard about bacterial biofilms ? (germs may be hidden into biofilms and not be flushed out by labs)
Have you been tested after a prostate massage ? (Stamey Meares test)

Please let me know about your condition

Good luck


Fri Jan 04, 2019 1:20 pm
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Joined: Wed Apr 04, 2018 8:43 am
Posts: 97
Post Re: 6 Year sufferer with no end in sight. Please help.
Have you had a PCR test?


Sat Jan 12, 2019 11:22 am
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Joined: Sat Dec 22, 2018 7:28 pm
Posts: 8
Post Re: 6 Year sufferer with no end in sight. Please help.
Bastian7694* wrote:
wally2.0 wrote:
chris85 wrote:
If you've exhausted medical doctors and aren't getting anywhere I'd suggest potentially trying herbalism. Like a TCM doctor, American herbalist guild practitioner, or even some naturopaths are OK. It is just the naturopaths that are obsessed with vitamins for no reason I worry about. May need to try a few different people before you get anywhere, it is annoying, expensive, and time consuming I know, but the answers are out there somewhere.

Also, so sounds like it could be an infection. I have tried a few herb combinations over the years that can assist these things, but it is a bit of a stab in the dark.

Reishi and astragalus: Together boost the immune system, reishi also is relaxing. May help get of an infection over a month or so.
Reishi and ashwagandha: Reishi boosts the immune system, ashwagandha will relax you and reduce inflammation.

Possibly try the Keto diet. Or at least anti-inflammatory diet without refined sugar and processed foods, excess bread and dairy.


I'm changing my diet and have completely cut out alcohol.
I'll definitely try out those herbal combinations. Western medicine has done squat, so let's head to the East.

Thank you so much for your recommendations and your response, it really does mean a lot.
-wally



I'm from France.
So please excuse my mistakes.
I understand what you feel every day.
I've suffered since 2010 !

In my opinion, your prostatitis has infectious origin.

Have you been tested for gonococcus ?
Have you ever heard about bacterial biofilms ? (germs may be hidden into biofilms and not be flushed out by labs)
Have you been tested after a prostate massage ? (Stamey Meares test)

Please let me know about your condition

Good luck


Your english reads great to me.
Thanks for understanding. It get get absolutely maddening to be suffering from this, you get in your own head so much.

I got a PCR and the majority bacteria was a Staph infection, forget which kind.
I HAVE heard about bacterial biofilms. Read it on a website that actually listed from supplements (Saw Palmetto, Nettles, and others) that are supposed to help break up the biofilm. I'm taking those along with a new antibiotic (Cephalexin) I'm hoping will target the Staph infection.

Thank you, I'll keep everyone updated.


Wed Jan 16, 2019 11:42 pm
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Joined: Sat Dec 22, 2018 7:28 pm
Posts: 8
Post Re: 6 Year sufferer with no end in sight. Please help.
AC1972 wrote:
Have you had a PCR test?


I know I got a semen culture done, but, I don't know if it was a PCR test. I got a ESP test which grew a host of Staph Epidermidis. Tried Bactrim, which, the doctor i'm seeing was shocked that didn't help, but, which I also read on this site is the worst antibiotic to take for Staph Epidermidis (pretty much sums up the mess that is this stupid infection). I'm on a new antibiotic (Cephalexin) which I suggested to my doctor after reading a medical journal that it could help with Staph infections of the prostate, that, alone with supplements (Saw Palmetto, Quercetin, Nettles) which I read are supposed to help break up the biofilm. We'll see...


Wed Jan 16, 2019 11:46 pm
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Joined: Sat Nov 10, 2018 1:21 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
You dont have a biofilm.dont give yourself uneeded anxiety over thinking your problems stem from bacteria.


Thu Jan 17, 2019 6:18 pm
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Joined: Sat Dec 22, 2018 7:28 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
Cam3roni wrote:
You dont have a biofilm.dont give yourself uneeded anxiety over thinking your problems stem from bacteria.


The ESP test I got cultured Staph Epidermidis. Isn't that bacteria that produces biofilms?


Fri Jan 18, 2019 3:20 am
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Joined: Sat Nov 10, 2018 1:21 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
wally2.0 wrote:
Cam3roni wrote:
You dont have a biofilm.dont give yourself uneeded anxiety over thinking your problems stem from bacteria.


The ESP test I got cultured Staph Epidermidis. Isn't that bacteria that produces biofilms?


The biofilm in the prostate theory is shaky at best. If it does it occur, it would be exceedenly rare. Also, your symptoms dont line up with a biofilm. You would have symptom resolution after being on antibiotics. Your symptoms would only return when the biofilm “burst” and the bacteria started multiplying.

Furthermore staph is a completey normal bacteria to find in the prostate. The prostates of healthy controls contain just as much if not more staph bacteria.

Have you still not gotten that discharge investigated?


Fri Jan 18, 2019 11:03 am
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Joined: Sat Dec 22, 2018 7:28 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
Cam3roni wrote:
wally2.0 wrote:
Cam3roni wrote:
You dont have a biofilm.dont give yourself uneeded anxiety over thinking your problems stem from bacteria.


The ESP test I got cultured Staph Epidermidis. Isn't that bacteria that produces biofilms?


The biofilm in the prostate theory is shaky at best. If it does it occur, it would be exceedenly rare. Also, your symptoms dont line up with a biofilm. You would have symptom resolution after being on antibiotics. Your symptoms would only return when the biofilm “burst” and the bacteria started multiplying.

Furthermore staph is a completey normal bacteria to find in the prostate. The prostates of healthy controls contain just as much if not more staph bacteria.

Have you still not gotten that discharge investigated?


No. I’m hoping to get it done on Monday, seeing a new urologist.


Fri Jan 18, 2019 12:59 pm
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Joined: Sun Jan 20, 2019 3:25 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
I have a similar problem. Had unprotected vaginal sex in November 2016. Shortly after I felt sick, white- yellowish discharge and burning while peeing.

Tested at the urologist, had Staph epidermidis in my urine culture and high WBC.

Got Doxycline and Cefixime, but didn't help.

Then Cipro got rid of it, but shortly after everything came back. Fast forward, my semen/urine/urethral swabs either came back negative or showed Enterococcus faecalis. One time in August 2017 I had a positive mycoplasma, but as I was surprised as I had done many negative tests for it before, I did another one and it was negative again.
Have been to over 10 different urologist, and all of them send me off as they wouldn't know what else to do after treating it with antibiotics and then it wouldn't help.
Discharge went away by itself after a couple of months, but burning still persisted.

In February 2018, one urologist performed a cystoscopy, which didn't show anything unusual, but it turned out to be the worst mistake of my life... Since the cystoscopy I have the problem in the prostate now, pain in bladder, having to pee often and during nighttimes, less sperm, etc.

Have taken another couple of Antibiotics since (Doxycline, Trimethoprim, Amoxicilin), but nothing helped. Currently in at the end of my 3rd week of Moxifloxacin, and symptoms are only a little better.

Some urologist say that it's the Enterococcus faecalis that keeps reappearing, others say that it can't be the Enterococcus but must be an STD like Mycoplasma that has been tested falsely negative throughout the time.

Totally desperate to find a cure, as my whole life is put on hold because of this at the moment. Currently on my 12th c(o)urse of antibiotics, herbal tees, broccoli,supplements, etc. but nothing would help. Have totally stopped drinking coffee and alcohol, eating meat and gluten.

As I the WBC and the reason how it all started and developed into the prostate, I'm sure it's bacterial, so I keep spending all my effort researching how to get rid of this horrible disease.

Unfortunately, so far nothing seems to help and no end in sight. :(


Wed Jan 30, 2019 2:33 am
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Post Re: 6 Year sufferer with no end in sight. Please help.
Quick note- Hang in there!

I had it for about 2 years, tried everything, couldn't get rid of it. I had a moment of extreme stress that precipitated the first flare up, then all kinds of meds and therapies didn't work. I went to a seminar in NYC with about 30 other sufferers and most seemed to have some sort of stress or anxiety trigger, similar to yours. I read "Headache of the Pelvis" and, for me, it all came together for me. I used stretching of the perineum, a kind PT worked on Rectal Pressure points, and with much better stress management it slowly subsided and went away after about 4 months. I have been free from pain for 8 years, and although I occasionally get the pressure in the rectum (like a golf ball), which was associated with all of the other symptoms, I haven't had a flare-up. It's like a hard knot in your neck, except down there. Also, too many orgasms in a short time frame will bring it on, which is funny since my one urologist actually wrote of a prescription pad "Orgasm 2-4 times daily" to get "it" out. OK, that didn't help, but I did what I was told!

Anyway, hang in there, you will get rid of this!! Read that book!

K


Sun Feb 03, 2019 7:21 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
KMan..what were your symptoms?


Sun Feb 03, 2019 10:57 pm
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Joined: Sun Feb 03, 2019 7:10 pm
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Post Re: 6 Year sufferer with no end in sight. Please help.
Need for frequent urination, even after just going to the bathroom, horrible pain in the perineum and head of the penis, pain/congestion in the rectum. Couldn't sleep, struggled mightily. Horrible.

The book and the local pt who used trigger points saved my life. Because I get really bad muscle 'knots" in my neck and back sometimes, and that the endless and ineffective rounds of Antibiotics even though there we no abnormal test results, it made sense. First, knowing that you will get out of this is important, and all of these other things that you are doing are good for you anyway. For me, it's stress management. Better this than a heart attack to wake you up to the need for stress management.

I gave the book to doctors, who wanted nothing to do with it.

I gave the book to two local guys I met on the message board years ago. Both got rid of it, one hugged me 5 months later and told me I saved him.

Hang in there and give yourself a break. It will go away but you need to see if this proposed solution makes sense. What the well-intentioned doctors were doing with me made no sense and produced no results.


Mon Feb 04, 2019 8:53 am
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