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Prostatitis - Looking for Advice & Recovery & Treatment Options that have worked!

Posted , 13 users are following.

ian33423
ian33423

Glad to have found this forum. Sort of reassuring to find so many others suffering with similar symptoms, and also shared experiences & frustrations at what seems to be a lack of knowledge & understanding from doctors & specialists.

Am 52, in the UK, and my problems (I believe) started or at least came to light after a sexual encounter. I know, I should know better at my age but after a long fallow period, a night of (unprotected) sex seems to have sparked problems. A few days later and feel good factor turned into discomfort and a fear that I may have picked something up.

I've copied in a sort of timeline . I'd be very interested to know if anybody else experienced any of the same or similar symptoms, especially those less frequently described such as low grade fever or swinging temperature

12th Jan: New partner. Unprotected sex.

20th Jan: Hives type rash on body, arms, groin. Feeling not 100%.

22nd Jan: GP re (genito-urinary discomfort )Urine dip test & sent off. Trimethroprim prescribed for possible UTI infection. Bad reaction (hot, racing pulse, anxious) reported to GP following day. Anti-histamine helped. Stopped taking Trim.

21st Jan & Jan 28th - STI walk in: 28th Jan: walk in STI clinic tests – full screen. Believe that symptoms (weeing a lot with some burning and discomfort, but also some discomfort & pain around the pereneum area and also penis tip) and could be non specific urethrtitis & prescribe 1 week Doxycline to cover all options incl. Chlamydia. New partner also tested (full screen).

31st Jan: Saw GP as symptoms worse prescribed a month of Cipro as he believed it could be prostatitis based on symptoms (but no urine or blood tests done). Having had previous issues (bad side effects) with antibiotics I didn't take these straight away.

5th Feb – New partner diagnosed with Chlamydia – so began Doxycline (as opposed to Cipro - that I hadn't started as had been waiting for STI test results). Felt sure this must be what was ailing me. But ...

8th Feb - my results back and all clear! No Chlamydia or anything else. Puzzled.

13th Feb. Still concerned about no improvement in symptoms so returned to STI clinic to discuss. Told that Doxy would’ve dealt with the Chlamydia so couldn’t be that. Prostrate exam at clinic and said that was enlarged. Wasn't that painful an examination. Said could be age related. & therefore may not need a long course of antibiotics but to see GP again.

15th Feb: Back to GPs who said that better to try Cipro as probably was (inflamed) prostrate & prostatitis but to return if couldn’t tolerate or bad reaction.

18th Feb: Sure enough, bad side effects after Cipro (first tablet – within 1 hour – heart racing, hot, bad anxiety, panicky, shaky, visual disturbances, weakness – similar to Trimethropin reaction but worse – Benadryl helped)

GPs informed & prescribed Doxycycline again instead (as tolerated previously). 2 week initially then longer if necessary.

18th Feb – 8th March – Varying degree of severity with symptoms over the period, but with increasing levels of anxiety, panic, worry, paresthesis (hands, feet, skin crawl), swinging low grade temperature; concentration issues; extreme tiredness – attributed largely to a Doxycycline (especially Paresthesia) side effect – BUT …. 10 days after coming off Doxy – those symptoms remain, and possibly have got worse (especially abdominal discomfort & tightness).

8th March – Bit the bullet and made a private appt to see a urologist. Did urine flow & bladder scan. Prostrate examination (tender & sore - more so than last time). Told to stop Doxy & Cipro suggested again! Explained tolerance problem. He suggested nitrofurantoin as an alternative option. Semen sample & PSA test

Genito urinary symptoms variable, but overall far less urinating & discomfort & tolerable. However, other symptoms much worse. Muscle weakness, fatigue, concentration issues, panic& anxiety feeling. Hands (and feet) swing from hot to cold and tingle, pins & needles feeling; sinus congestion, tingly/sore lips and tongue; temp up and down (35.8 to 37.1 - my normal approx 36.3)

Overall Symptoms

• needing to urinate more often or urgently

• pain, stinging, burning during or after urinating

• discomfort, aching in testicles (right mainly), perineum, and penis (urethra) & tip of penis

• discomfort, aching (tightness) in lower abdomen, and groin.

• no desire for sex (lack of libido) - watery semen on ejaculation - some discomfort after

• Occasional chills, swinging (low-grade) fever

• aching limbs, weakness, fatigue, a feeling of needing sleep. Not sleeping

• anxiety, concentration problems, paresthesia

  • Sinus congestion, sore & tingly mouth & tongue

March 20th prescribed another antibiotic (Erythromycin) for 6 weeks.

Very little change in symptoms over the period but by week 5 stomach issues (bloating, gas, pain, heartburn - I have reflux & IBS and have taken Lansaprozole for the past 5 years to manage this) became far worse. Assumption being as a result of Erythromycin so advised to stop (after 6 weeks).

Now 10 days after coming off Erythromycin all the above symptoms persist varying in severity on a daily basis. GP has made a referral to a Urologist (NHS) and Immunologist (for antibiotic issues). Stomach problems persist and have had a week of palpitations that weren't being felt previously. Have attempted a very bland diet but not doing the job. Still taking Lansaprazole but feels as though they aren't working at all.

Only 4 months on and I know that many of you have experienced this condition for far longer, but am wondering what help or advice you can share? Like all of all you at some point no doubt, I am desperate to be symptom free ASAP. The pain & discomfort is tolerable and I can manage that without even pain relief. The other symptoms (fatigue, weakness, anxiety, low grade swinging temp etc) are impacting significantly on my life though and I have missed quite a lot of work and am unable to exercise.

Hopefully a case of a problem shared is a problem halved ... or eliminated completely!!

Many Thanks

Ian

1 like, 10 replies

10 Replies

  • n2506
    n2506 ian33423

    Posted

    wow. have you checked your kidney?

    • ian33423
      ian33423 n2506

      Posted

      Nobody has mentioned that - specialist or Gp . Other than urine tests.

  • dcooperxyz
    dcooperxyz ian33423

    Edited

    HI ian

    im sorry to hear about your problems.

    Most of your symptoms do indeed sound like prostatitas apart from the last one which may be a red herring and a result of the meds instead.

    Ive suffered from several bouts of this condition and can relate to your symptoms. Its very difficult to diagnose. Mine was finally diagnosed from a prostate biopsy as an MRIscan showed something suspicious, but i wouldnt recommend going down the biopsy route unless absolutely necessary. You should have an ultrasound and blood tests / urine tests should rule out kidney problems although prostatitis in my view seems far more likely, especially as you are the right age.

    A urologist will want to rule everything else out first before settling on a prostatitis diagnosis simply because there is no simple test to diagnose it.

    its possible you had a UtI which the antibiotics sorted but then that led to prostatitis and unless you have the bacterial version ( most forms are considered non bacterial ) Ab's wont help and may in fact cause other issues.

    Prostatitis is not life threatening and usually just disappears on its own. It can be very un comfortable and stress certainly makes it worse .

    Get every test done including a urodynamic study and camera to rule everything else out so that you can relax more and if it is prostatitis it will just go away by itself.

    PM me if i can help put your mind at rest about the condition and any tests u may have.

    darren

    • Kaztopher
      Kaztopher dcooperxyz

      Posted

      comforting to read this... thanks... would love to hear more about the timelines, how you managed, what helped etc. see my reply to OP for my situation if helpful. would love to connect with someone who has 'survived' this.

  • lester90053
    lester90053 ian33423

    Posted

    You went into a fantastic memory of every little detail except one. You did not indicate if your partner was male or female but had very little testing done. More testing of your partner needs to be done for their own benefit as well as yours.

    • ian33423
      ian33423 lester90053

      Posted

      Hi

      Female partner. Not partner anymore alas. Full STI screen (bloods, urine).

      Many thanks

  • arlington
    arlington ian33423

    Posted

    I usually don't tolerate antibiotics well but i'm currently on Cefuroxime. If you still think you need one and haven't tried it, you may want to give it a go.

    Best of luck!

  • greg73359
    greg73359 ian33423

    Posted

    Hi Ian

    My Sister put me onto HIPREX for long term uti problems like yours.Do a google search and you will see how great it is and unlike antibiotics it can be taken long term In your situation it cant hurt. let us know how it goes. Good luck

    GREG

  • Kaztopher
    Kaztopher ian33423

    Posted

    hi Ian,

    i would be fascinated to hear how the story ended (i hope).

    i am in a similar place - 4 months in, pretty sure its chronic prostatitis, have been through two rounds of antibiotics, and now in the 'wait and manage' phase.

    life is almost completely on hold thanks to symptoms:

    i am 42

    pain at end of penis and all the urinary difficulties - mostly relieved by an alpha blocker.

    perineum pain - comes and goes and meds dont help

    aching legs and fatigue - ditto

    constipation, IBS - new for me, experimenting with laxatives.

    anxious, depressed... near hopeless.

    getting desperate now... just ordered some quercetin and saw palmetto...

    not sure where to turn next. despite it being apparently so prevalent, cannot find single person who has actually had it to talk to.

    thanks,

    kaz

  • cali-mike1970
    cali-mike1970 ian33423

    Edited

    I had a similar issue starting June '22, tried LOTS of things and by Dec was getting better, really got better in 2023 and in the process my BPH was also identified as progressed. Sexual guilt, anxiety, loss of weight, extreme urinary frequency (still have it but normal BPH like not continuous or every 15 min), extreme hesitation (vs normal BPH now), dribbling (which I don't have now), some mild burn from time to time on urination, discomfort sitting although no palpable pain on touching or golf ball feeling in the perineum, loss of weight, night sweats, feeling cold or hot at times during the day, loss of 15% of body weight - 30lbs. i swear my ejaculate got a tinge of green/yellow (but some suggest quercetin)

    checked for diabetes, thyroid, STIs (urine, semen, mold, fungus, DNA, prostate massage); all negative

    according to experts, bacterial prostatitis is very rare (chronic generally repeats every so often and is cultured to be the same bug every time - Type II), acute is known as you will be in the hospital (type 1) type III is non-bacterial and attributed to pelvic floor dysfunction. I'm not sure I'm 100% in belief that there is no microbial or fungal initiation to everything but I do think the pelvic floor gets disrupted and should be treated as well when this happens (finger through the rectum and releasing triggers that develop in the pelvic floor that also cause the same symptoms).

    things that helped:

    • getting over the anxiety and sleeping a bit more, lowering hyperarousal and being kind to myself about sexual guilt - we are humans (took SSRI for a few months, the sleep coach youtube is excellent)
    • pelvic floor physical therapy - you want to make sure you are covering all bases, out of pocket, expensive but useful for the first 2 months
    • diflucan for 14 days - even though no fungus present, this improved urethral itch after time had improved things and knocked out my extreme urgency/frequency to something more manageable - worth taking even if no postiive results
    • doxy for 21 days was hard on my stomach and may have started the anxiety (gut -brain axis); in a state of anxiety - cipro was intolerable after 4 days and was imagining peripheral nerve damage - i was already having tremors and jolts and thinking I had MS from the anxiety
    • bactrim was the only one I could tolerate for 5 weeks, the extreme infection feeling went away but everything didn't clear up until time
    • sitting in warm baths or sitz baths helped relax and give me breaks from the suffering

    i suspect the orig infection goes away and your system stays out of whack. things you do can screw it up as well in getting better.

    reddit /prostatitis is good

    check for mycoplasma and ureaplasma as well and see the protocol that reddit's admins recommend

    nature walks, yoga nidra if not sleeping enough

    improve diet

    if someone will get you an MRI, sometimes that shows inflammation indicative of prostatitis but most docs won't do that unless they suspect cancer - in the end this doesn't help much

    many US docs give flomax for prostatitis flareups and some report improvement in urgency/frequency, others nothing

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