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 Asking again for input and thoughts. 
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Joined: Mon Oct 30, 2017 8:20 pm
Posts: 11
Post Asking again for input and thoughts.
I'm looking for input and thoughts from fellow members here on what could possibly be wrong here.

I've seen 3 urologists and 1 pelvic floor therapist. The first two urologists diagnosed prostatitis, prostadynia, and the third interstitial cystitis who immediately recommended and scheduled me for a bladder cysto-hydro-distension. I'm probably going to cancel that procedure because I've found the efficacy to be hit or miss and it seems like an unnecessarily invasive procedure based on little actual examination. The first diagnosis was based on my description of symptoms, the second was based on my description of symptoms again + a DRE, the third was based on my description of symptoms, uroflowmetry, and DRE.

The first and third urologist + pelvic floor therapist said that my prostate feels fine. The second said it seems tender/inflamed HOWEVER he was the only Dx where the DRE hurt like hell, he was seriously mashing on that thing hard. I don't agree with his take on the state of the prostate considering 3 other professionals said it feels fine.

I've had complete blood counts, lipid/metabolic panels, STD panels, lyme disease test, urine culture, semen culture and PCR.

The only things of note were the PCR showed some random bacteria that if you google doesn't return many personal, if any, accounts of having run into it. The sequencing revealed 41% prevotella amnii, 19% sneathla sanuingens, 18% lactobacillus iners, 7% streptococcus mitis, 3% straphylococcus epidermidis. Dx prescribed 30 days of 100mg doxycycline, took it, nothing really improved in any significant way.

The 3rd uro took my urine for a culture that I wasn't aware he was doing, he said it revealed some random bacteria, if I recall it was some random staph or strep but it was one of the common strains that is often found as a contaminant. Dx prescribed amox / clav and said "take this just in case". I was kind of lazy with taking it since it hadn't showed up on any of the other countless cultures that had been done.

I haven't been on a super long dose of any of the ABX, however I got some levaquin and bactrim. Only 21 days worth of each, only took levaquin for 3 days and bactrim for 2 weeks or so. I did take the full 30 days of doxy. Honestly, I'm not trying to give myself C.diff here. The bacterial results have been hit or miss at best, with the only real significant findings being from that PCR which after I took the doxy for 30 days my symptoms didn't dissipate, which is why my usage of ABX has been relatively spotty.

I did about 4-5 weeks of pelvic floor stuff and I wasn't finding that it was helping. But maybe I hadn't gone long enough. I wasn't confident in it because the therapist had not found anything significant that was pointing to anything that was easily fixable, she just said that was some slight incoordination which after 1 session I had made "amazing improvement" in. It just seemed to believe that it's pelvic floor related since I wasn't really that far off from a "normal" person's pelvic floor baseline, if that makes sense. She said I had some pelvic floor spasms and incoordination in an email but hadn't mentioned it in person.

Based on my symptoms, I am actually thinking I have a bladder neck obstruction or neurogenic bladder, the latter of which, if being the case, really sucks. But when I bring these up doctors are quick to refute my opinion based on their limited time with my symptoms, which are:

- constant feeling that I need to urinate
- voiding volume not very much unless I've drank copious amounts of water (to give an example, after I wake in the morning I have to pee but I'm not releasing that much urine)
- very weird weakness and straining feeling about 3 inches up from the base of the penile shaft (I asked about this, doctor said "no evidence of stricture or bladder neck obstruction based on uroflowmetry", nurse or whoever also replied when he was out of the office and said "likely abdominal muscles, seek therapy"). The feeling comes if I try to expel or push more urine out. It definitely doesn't feel like abs, but seriously these doctors are worthless.
- I've started getting pretty annoying back pain when waking up in the morning, pretty sure it's up in the kidneys probably from urine backing up into them, and it subsides slightly after I get up, start moving around, and urinate in the morning.

I'm just getting really worried here that long term this will be hard for the body to handle later in life. I'm only 27. It feels like I can no longer detect when my bladder is full, all I get is the senstation at the end of the penis that I have to go to the bathroom. My blood work doesn't show any signs of diabetes however my diet has been relatively low-quality and sprinkled with some bad decisions over the last year (random sugar binges when dealing with depression, alcohol use, but not diabetic), because of the test results docs won't consider something that requires critical thinking. My symptoms started out differently back in last October, about 5 months after I started a new job where I sit on my ass 12 hours a day (1 hour commute into work, 10 hours at work, 1 hour commuting home). LOTS of sitting due to the nature of work (IT). And a lot of stress from work that I historically keep in my pelvis. My initial symptoms were some burning at the tip of the penis, frequency, testicular aching randomly, lower back pain, pelvic pain, and some inner thigh pain. This slowly transitioned to the symptoms above which have been -constant- for the last 5 months.

The struggles been real and I'm thinking I have neurogenic bladder or some kind of bladder neck obstruction, or some problem of the detrusor muscle not properly activating the internal bladder sphincter, but getting doctors to hear me out has been difficult. Even asking about my kidneys simply gets me a shake of their head, where they follow up by saying "You don't need to worry about it".

I need more conclusive testing done but feel like it's impossible thing to get docs to do. Likely an ultrasound for my kidneys and bladder. I've scheduled an appointment with a neurologist to discuss the possibility of neurogenic issues and to see if I can have my lower back scanned to search for pinched or compressed nerves/discs that could be contributing to urinary dysfunction.

I'm kind of at a loss here as for what to make of this and honestly I don't think the problem is related to the prostate at this point.

Any thoughts or inputs?


Sun May 06, 2018 4:47 pm
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Joined: Tue Apr 12, 2016 11:55 am
Posts: 287
Post Re: Asking again for input and thoughts.
My first suggestion is to stop getting DREs. Another is to not allow the worry to sway or influence your decisions about what to do too much. I think urologists are more familiar with quick diagnoses than physiotherapists and primary care doctors. Yet the third uro you went to had something. I think those urinary issues you have are partly bladder problems. Even if something else is causing it. I've had similar symptoms for around 2-3 years, and now have pain after (sometimes during) urination, weak flow and need to push it out often, frequency issue of going more in a day than is normal, feeling the urge in my urethra rather than bladder, leaking, and slow to start.

I think the problems are chemical and nerve-based, in summary. If holding stress and anxiety in the gut/pelvis were the primary issue or source, then these problems would've occurred a long time ago most likely. Chemical reactions and nerve signals have a much more affecting role than is commonly ascribed and known. Why else would Flomax (an alpha-blocker) be so effective in numerous, different cases? Why else would myofascial release and other alternative forms of physical therapy be so helpful? Steroids and anti-depressants are also prescribed for these problems, with or without the pain aspect. My input is to look into herbs, but research the chemistry involved in your problems, and not simply ask doctors for a cure. You wouldn't go to the doctor and ask them to cure your headache, would you? In most cases it doesn't call for it, and not only because there's Tylenol / Ibuprofen, etc. There are lots of different causes of headaches. Why are other countries more knowledgeable and pragmatic about curing illnesses and conditions, even mysterious ones such as ours, than the U.S.? I think it has to do with the lack of basic knowledge of chemistry by the doctors we most often visit. Not only the chemistry of pills, but of my body and herbs or other natural and alternative healing.

However, I think your 3rd doctor and the nurse may be giving you a lead regarding where your specific problems are coming from. Not in terms of pelvic floor stress retention, but in terms of the connection between the gut and the problems. Same for me. This is something not well-understood by modern, Western hemisphere science and medicine. It's like a catch-22. Perhaps something similar to a hydro-distension yet less invasive would be a solution. Something that derives a change in chemistry as opposed to a forced structural change directly to the bladder. Even cancer patients often don't require such invasive procedures. What do you think?


Wed May 09, 2018 12:18 pm
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Joined: Mon Oct 30, 2017 8:20 pm
Posts: 11
Post Re: Asking again for input and thoughts.
presto423 wrote:
My first suggestion is to stop getting DREs. Another is to not allow the worry to sway or influence your decisions about what to do too much. I think urologists are more familiar with quick diagnoses than physiotherapists and primary care doctors. Yet the third uro you went to had something. I think those urinary issues you have are partly bladder problems. Even if something else is causing it. I've had similar symptoms for around 2-3 years, and now have pain after (sometimes during) urination, weak flow and need to push it out often, frequency issue of going more in a day than is normal, feeling the urge in my urethra rather than bladder, leaking, and slow to start.

I think the problems are chemical and nerve-based, in summary. If holding stress and anxiety in the gut/pelvis were the primary issue or source, then these problems would've occurred a long time ago most likely. Chemical reactions and nerve signals have a much more affecting role than is commonly ascribed and known. Why else would Flomax (an alpha-blocker) be so effective in numerous, different cases? Why else would myofascial release and other alternative forms of physical therapy be so helpful? Steroids and anti-depressants are also prescribed for these problems, with or without the pain aspect. My input is to look into herbs, but research the chemistry involved in your problems, and not simply ask doctors for a cure. You wouldn't go to the doctor and ask them to cure your headache, would you? In most cases it doesn't call for it, and not only because there's Tylenol / Ibuprofen, etc. There are lots of different causes of headaches. Why are other countries more knowledgeable and pragmatic about curing illnesses and conditions, even mysterious ones such as ours, than the U.S.? I think it has to do with the lack of basic knowledge of chemistry by the doctors we most often visit. Not only the chemistry of pills, but of my body and herbs or other natural and alternative healing.

However, I think your 3rd doctor and the nurse may be giving you a lead regarding where your specific problems are coming from. Not in terms of pelvic floor stress retention, but in terms of the connection between the gut and the problems. Same for me. This is something not well-understood by modern, Western hemisphere science and medicine. It's like a catch-22. Perhaps something similar to a hydro-distension yet less invasive would be a solution. Something that derives a change in chemistry as opposed to a forced structural change directly to the bladder. Even cancer patients often don't require such invasive procedures. What do you think?


Honestly, I tend to agree with you, and I'm not just saying that for the sake of confirmation bias. The third uro that I saw, well, I wouldn't say he's been a jerk but he seems rather impatient with me already. So, for me I think it's bladder or neurological. Some kind of nerve damage or something wrong with the bladder itself. For me the alpha blockers actually don't seem to make that much of a difference if any that I can see.

I couldn't even begin to know of anything that is similar to the hydro-distension but is somehow still less invasive. My understanding is the hydro-distension uses fluid to expand the bladder; in the office the doc used my arm to demonstrate what it does basically. He basically held me at the wrist and said relax your arm, after doing this he basically compared the "floppiness" of a relaxed limb to somehow being the problem of the bladder and then told me to make my arm rigid, and use the example of the rigidity of the arm in movement to demonstrate how it should be and what the procedure does. I don't think I need anything that expands the structure of the bladder.

I understand what you're saying, when you say they are pointing towards a link between the gut and the problems however I don't think they were intending it in the way that I think you are talking about. To me, it seems like you are vaguely referring to something like leaky gut or some other bacterial imbalance that would cause regular bodily chemicals or other bacteria to leak through to the bladder and cause neurological damage. If you are, I agree this probably has a link mostly because modern bacterial research is beginning to show tremendous causality between bodily flora and the less understood neurological diseases like parkinsons, MS, etc.

For me, amitriptyline seems to help out relatively more than I expected. It curbs the frequency to a moderate degree but doesn't fully negate it. However it makes me drowsy AF. I would also like to try oxybutynin. I've got a doc here in my area (Houston) who uses botox for OAB, but at this point I'm not sure if he would go for that given OAB tends to be a more singularly-symptomatic ailment rather than a blend of moderate to severe LUTS.

For me, my guessing is sitting on my butt for so long this past year has some kind of number on my lower spine in a way that's causing symptoms, an inflamed colon is pushing against everything, or my bladder was damaged from a bad diet despite not being diabetic. My best hunch is on the third option. Thoughts?


Sun May 13, 2018 2:51 am
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Joined: Tue Apr 12, 2016 11:55 am
Posts: 287
Post Re: Asking again for input and thoughts.
I wasn't sure what exactly they we're getting at with the gut connection. I was simply saying there's a hypothesis or a basis to inquire further about. I wasn't trying to insinuate it's a specific issue since these problems are so various in their causes and effects. I understand how you could suspect that though.

Diet is a probable cause. In your case, I don't know obviously. The second one you said is another highly probable one. I know that when I get too much high-acid foods, I get acid reflux sometimes. But if I don't eat high-acid foods, it doesn't happen mostly. Though I think the acid isn't the cause of the reflux. Perhaps drinking more milk would help you. I've read it soothes bladder pain and decreases urinary issues. Some people point to fruits and vegetables being foods to increase, but they have lots of sugars and simple carbs, which are easier to digest and may feed the bacteria more resulting in higher acid levels and more for the bladder to store and faster digestion. Spicy foods: depends what spices I think. Hot spices are loaded with anti-inflammatories, and sweet or bitter spices I'm not sure. Perhaps a bit of research is in order.

Do you think you're not getting enough of certain nutrients?


Sun May 13, 2018 9:34 am
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1050
Post Re: Asking again for input and thoughts.
I'd be curious to see what your psa value is. It can go high if it's an actual infection. You have a few options: seriously clean up your diet, make sure you get up and out of your chair at work for at least 5-10 minutes every hour, start some very light cardio as well, then slowly increase.

Have you tried alpha blockers? Flomax really helps me, I only have to take 1/2 the standard dose.


Thu May 17, 2018 11:12 pm
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Joined: Tue Apr 12, 2016 11:55 am
Posts: 287
Post Re: Asking again for input and thoughts.
The hydro-distension might relieve the bad pressure gradient of the bladder, resulting in a more normal gradient that solves the urinary problems. I don't think you should consider it until you've gone through other options.

Drinking more water and fresh, whole juice would probably help. Cranberry juice is known to help with urinary problems. I've had relief from blueberries, strawberries, and raspberries too.


Fri May 18, 2018 10:28 am
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