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Diagnosed with Chronic Non Bactrtial Prostatits, Need Advice

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Matt7077
Matt7077

Hello all,

Been dealing with frequent urination and urge to urinate, and weird back and pelvic pains that came out of nowhere on July 1st. Long story short, I ended up at my GP who said my prostate was "soggy" and gave me a 30 day run of Bactrim. I initially tried cipro prescribed from an urgent care (was out of town) and after an allergic reaction to that, doxycycline. Four days into the doxy is when the GP put me on the sulfer drug.

Since this is the first time in my life (I'm 29) that I've ever had any medical issues, I began researching my symptoms and came across this site. While waiting for my urologist appointment, I began doing acupuncture with chiropractic work, and Pelvic Floor PT along with a long list of herbal supplements.

Urologist was useless. Didn't order any tests, told me I had CNBP, and prescribed a seat cushion, advil, and hot Epsom salt soaks.

So far I feel like the pelvic floor PT is helping, as is acupuncture because the random pains are few and far between now, but the constant urge to p**s won't go away. It hasn't been as bad the past two weeks, but today it was almost as bad as when this stuff started out of nowhere.

Since the never ending urge to pee is my main symptom, could this be something else besides CNBP?? I'm not having issues with much else. It just feels like there is something stuck in the tip of my penis, and 15 to 45 mins after I pee it comes back. I can normally wait a few hours and then take a leak, but this feeling is not going away.

Thank you guys for any help you can provide.

0 likes, 35 replies

35 Replies

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  • joe98530
    joe98530 Matt7077

    Posted

    Matt, I have been dealing with something similar to what you’re describing off and on for 25 years. If there is an acute infection it has to be addressed.., it seems unusual your first occurrence would get categorized as non-bacterial. Anyway, my recommendation is a tremendous amount of water and possibly low dose Valium. When my situation got out of hand by urologist prescribed a 2mg Valium which i would split in half. Made a world of difference. Must be careful... that’s not a drug to abuse or take any longer than necessary. Best of luck!
    • Matt7077
      Matt7077 joe98530

      Posted

      Thanks, Joe. I've always drank a lot of water, especially once I started the keto diet. 80 to 100 oz a day. I spent 30 days on sulfamethoxazole/trimethoprim, but didnt feel like it did anything. I've read about having some different kind of cultures done, so I may find a new urologist who will work with me and not just tell me to take advil. I'd rather rule out bacteria/fungus than just sit here and wait for the Pelvic Floor PT to maybe work. What did the valium do?

    • joe98530
      joe98530 Matt7077

      Posted

      Low dose Valium can relax some of those spasms you are having down there. It just calms things down so your immune system can help. Won’t work if you have active bacterial infection, but that might not be likely if you are already took a few course of antibiotics
    • Matt7077
      Matt7077 joe98530

      Posted

      Thanks, Joe. I really only had one course of Antibiotics- the other two were stopped after just a few days.

      I'm also not sure if I can take valium...I work in law enforcement and do a lot of driving. My dad was in law enforcement as well, and I know at one point he was told he couldnt take anything like that due to work.

  • miriam65408
    miriam65408 Matt7077

    Posted

    Hi guys,

    I see Cipro has been mentioned a couple of times and I'll just throw in a warning that this drug can cause you a lot more problems than just the pain you've got now.

    Cipro and the other fluoroquinolne drugs come with a lot of warnings (black box in the US) and they are being reviewed by the European medicines agency at the moment.  Just because a doctor gives you them doesn't mean they won't harm you - please the the fluoroquinolone antibiotic discussions on this site for some idea of what I mean.

    If you've taken one course with no adverse symptoms I strongly advise that you never take an FQ again.  Their toxicity builds up inside you (they damage your own cells at the same time as they're killing bugs) and  the very first pill gets a few people while most can take a couple of courses - some get away with 9 or 10 courses then BAM - it hits them!

    Pelvic pain such as is described here is very often a symptom of stress, especially in younger men.  Following a special exercise regime will get rid of the pain much more efficiently than any antibiotic (if there's no infection why is an antibitoic prescribed??).  Serious cyclists seem to get the problem a lot for some reason.

    Hope this helps.

    • Matt7077
      Matt7077 miriam65408

      Posted

      Thanks, Miriam. I took four Cirpo pills, and immediately stopped after my hear rate increased and I began to feel a tingling in my left arm along with joint pain. I was out of town for work at the time, and a different urgent care prescribed me doxy. I took that until I got home and saw my GP.

      I've been reading past posts on this entire forum, and one that stood out was where the gentleman obtained a DNA sequencing test. While this may be stress and musclerelated, I would rather have bacteria ruled out for sure, and apparently these tests find way more bacteria than the standard culture. I thought I was seeing improvement after a month of PT and acupuncture, but today and yesterday the urinary symptoms are waaaaay worse than they've been in a few weeks. Still no pain, but just constant feeling like i have to urinate maybe 10-30 mins after going. So frustrating.

  • miktek
    miktek Matt7077

    Posted

    I think Scott04743 has the best advice. I had the excate symptoms you have and stretches were the key to loosen the muscles in the bladder and pelvic region. In most cases, penis pain is referred pain from tight muscles in the bladder. Amy Stein or Headache in the Pelvis have some good stretches. you can also youtube for stretches. Uptown Mike is a good start. First and foremost get on top of the mental health and anxiety even if this means going on antidepressants. The more you panic and spiral with this the worst it will get. Get medically tested to rule out any physical causes like strictures. Get a donut cushion to relieve pressure. If you do all this and give it time - up to 6 months - it will get better. 
  • hank1953
    hank1953 Matt7077

    Posted

    Matt, have you been checked for UTI ? You can buy some dipsticks and do test at home. Hank
    • Matt7077
      Matt7077 hank1953

      Posted

      Hank,

      I went to two different urgent cares when this started and had urine tests done, as well as one by my GP. No bacteria was found.

      I've been doing some research on this and other forums, and am going to try to get a DNA sequencing test done to just rule out any bacteria. Apparantly the urine tests don't find possible bacteria/fungus which can cause this stuff.

      In the event it truly is CNBP, it would definitely take some stress away knowing it's not a bacteria or fungus causing it, and I can just do these stretches and PT until it heals.

  • michael805
    michael805 Matt7077

    Posted

    Matt & Scott,

    You both seem to be seeing some improvement from your PT sessions. Would you mind detailing your PT routines with us? I think it would be really helpful. There are lots of videos on YouTube about pelvic floor stretches and exercises but it would be nice to get first hand accounts of which ones are actually helping men who have been diagnosed with prostatitis.

    -Michael

    • scott04743
      scott04743 michael805

      Posted

      Sure. First I do the 10 exercises from Amy Steins book called you can heal pelvic pain. I skip the 10th one it hurts my back but I do the other 9 going in the same order as the book. 30 second reps 3 sets for each exercise. I do this in the morning and afternoon. I also do foam rolling, starting with sitting on the roller crossing my right leg over my left knee, leaning to the right rolling for 2 minutes. Switch to the other side. Then both legs on top of the roller hoi g from my waist to my knees rolling for 2 minutes, then rolling the underside of each thigh for 2 minutes. The foam rolling 2x a day.

      I do a yoga routine but its mostly stretching. 20 minutes once a day.

      I use the Calm app once a day doing the daily meditations.

      I go the Pelvic Pain Clinic 1x a week. They have a location near me.

      Feel free to message me happy to help anyone here. I'm not good yet but my u better. Also stopped biking

      Good luck

    • Matt7077
      Matt7077 michael805

      Posted

      Hey Michael-

      What I've been doing so far is acupuncture twice a week, with pelvic floor PT sandwiched in the middle. On my own time, I've just been doing the two stretches my PT gave me:

      3 sets of 30 seconds in a frog pose (kind of a squat but your hands touch the inside of your feet and elbows apply pressure to the inner thigh)

      3 sets of 30 seconds laying down, keeping your shoulders on the ground, and bringing one leg over your body and pulling down slightly on the knee until you feel a stretch. 3 times for each leg.

      I normally do these two to three times a day.

      She also told me I could do some foam rolling similar to Scott, except I have a hand held roller and she told me to put a few tennis balls in a sock and use that to hit the pelvic floor muscles in the butt area. The hand held roller I use for my thighs and upper pelvic area. Havent done that too much though, since I had a bad day the last time I did it. Look on Soflete website for the roller I'm talking about.

      My PT told me to do kegels during the frog stretch, but I quit doing those because I read kegels just make things worse. I bought the book Scott recommended, and started doing the deep breathing with the "pelvic drop" during it instead.

      I sit in a car all day at work, and started doing the pelvic drops when the urinary urge started getting bad. Just in the past few days, this has helped TREMENDOUSLY. Instead of the inflammation and kind of burning urge to pee, I've felt a tingling sensation and the urge dissipates for a little bit.

      I did the 10 stretches in the book Sunday night and Monday, but I decided to cease until I talked to my PT about them. She's borrowing my book until next week so she can skim through it all. She said to just experiment with them and note which ones help/hurt. She said sometimes it depends on where the patient is tight, and that a blanket routine might not be the best idea. Although she told me to do kegels, so take that with a grain of salt.

      Based on past patients, she also recommended icy hot to the gooch area (lol) and maybe once or twice a week on days where no treatment is involved, using a massager(vibrator) on the gooch area as well. I trier the icy hot, and the second time I had a bad day symptom wise so I haven't done it again. I used the massager thing Sunday night, and Monday wasnt bad. It's hard to pinpoint what helps and hurts because I'm throwing so much at this. For example, on some days I've had coffee, the symptoms have been good. Other days it's not the case if I have a cup. I guess it just takes time and more isolation to figure it out.

      All in all, I've had some or the best days this week since this started up for me two months ago. I actually have a few seconds or a minute of complete relief, and when the feeling comes back, it's not as bad as it used to be. My acupuncture doc said it takes months to see full relief, and my PT said at least six visits. I just had my fourth today.

      One thing I've read since I started researching is that different things help different people with this condition. I'm trying to take a new job soon, so I'm in a time crunch to clear this up as soon as possible. I've also been taking a lot of herbal supplements. I dont know how to PM on this, but to avoid having the post taken down if it's not allowed to mention brands, I can give them too you off line.

      Like Scott, I havent worked out since this started. I mainly did crossfit and heavy lifting, but I'm not touching that for awhile. I will start back running and throwing some push ups and sit ups in for a fitness test I'm prepping for for my new job. My PT said those were ok. Stretching after the workout since the muscles are warm.

      Sorry for the long post- I just wanted to share everything I could think of. If you have any other questions, let me know. Hopefully we can all be cured of this ridiculous ailment quickly- especially if we combine all our our knowledge and experience.

    • miriam65408
      miriam65408 Matt7077

      Posted

      Good reply Matt, and I'm sure your description of the exercises will help many.  Anything that can help should be tried rather than just blindly going down the antibiotic route (which doctors seem very keen to take you guys down!). Believe me, Fluoroquinolone Toxicity Syndrome (that's Cipro and the other FQs) is very much worse than Pelvic Pain.

      To PM someone on this forum, look for the envelope symbol by their name.  Click on it and will it open in a message page between you and that person. (Took me a while to work this out!).

  • Matt7077
    Matt7077

    Posted

    Hello to all in this thread! I just wanted to touch base to see how everyone's symptoms are doing.

    Personally, mine have fluctuated quite a bit. I've had some days where the symptoms felt great, but the past week I feel like I have taken a few steps back. The inflammation feeling/constant urge to pee has been back most of the past two weeks, along with some stomach issues. I have been taking a lot of herbal supplements, and started flomax per my uro although I don't feel like it's doing anything.

    As I mentioned before, I was doing the ketogenic diet when this started, and i feel like that is what started it. Has anyone altered their diet to try and aid in the healing? Everything I've read says low carb is the best, but the few times I've eaten carbs for cheat meals, my urinary symptoms have felt a little better.

    Hope everyone is doing well and getting better!

    -Matt

    • hank1953
      hank1953 Matt7077

      Posted

      What are you eating for your ketogenic diet ? Perhaps your body is not used to it. Mine did not like it either when I tried it before. Solve your stomach issues first. Hank

    • Matt7077
      Matt7077 hank1953

      Posted

      Hank,

      I was eating a lot of red meat and dairy, which I have never had any issues with in the past. I think the amount I was consuming was way more than what I normally ate though, and caused some kind of chain reaction that only worsened with the ABX and all the aleve the doctors told me to take. I'm definitely going on a gut healing protocol, and will let everyone know if there is any improvement.

    • uncklefester
      uncklefester Matt7077

      Posted

      I did keto diet fall 2017. I noticed increased difficulty in urinating. I'm lucky in a sense that although I have a 125 gram prostate I pee pretty good. I did lose lots of weight though

    • hank1953
      hank1953 Matt7077

      Posted

      Matt, my brother had serious gut issues with lots of meat diet before. Now looking back, he thinks he had leaky gut syndrome. He swore that the Plant Paradox diet by Dr Gundry that he is on now had fixed his problems. It is still a low carb diet but more restricted. Hank

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