My prostatitis history: Would LRP help?

[Hunter G]

Hello everyone,

I'm a 38 year old male that got a urinary tract infection/chlamydia right before basic training at the end of 1992, which turned into epididiymitis & prostatitis. So, I've been dealing with this hell for over half my life now.

I've had just about every test known to man such as: Ultrasound, CT Scan, MRI, DRE, etc. I've also had the following procedures: (1) Varicocelectomy = no relief (2) Testicles tacked (idiots thought it was torsion after about 2 years of suffering) = no relief & hell to recover (3) Cystoscopy (had to ask for this test) that showed prostate was restricting/squeezing urethra at bladder, so (4) TUIP was performed = offered some relief from buring urination but I now have dribble & weaker/split stream (5) Prostate massages performed in Tucson (2000) = the first couple of drainages really seemed to help relieve some pain and give me slightly more energy but no more real relief from 20-30 massages as the years went on. (6) Inguinal cord block (test to see if microsugical denervation would help) = blocked almost all pain for a couple of hours but then came back (7) microsurgical denervation of spermatic cord = not really any difference than before the surgery (8) Spermatic cord block = complete relief for a couple hours but then came back. (9) loads & loads of different antibiotics throughout the years = messed up my immune system & caused candida infection, which is mostly under control now but never really seemed to help. (10) Trans rectal prostatic injections of antibiotics (gentomycin & steroid?) hurt like hell for days and offered no real help. (11) Epididymectomy = Very rough recovery (lost 15 lbs.) & did not help after cord block helped. (12) Acupuncture = no relief. (13) Supplements = none really helped (beta-sitasterol seemed to provide some kind of relief but nothing to write home about)

Prostate drainages (DRE) always show some type of yeast/pus (indicate infection/inflammation) when cultured & various types of bacteria. DRE's usually hurt really bad when massaged and sometimes one lobe would be larger (or hurt slightly more) than the other but now they appear to be about equal but still hurt if massaged. Also, ultrasound shows several calcifications, most fairly small but many throughout the prostate.

As you can see, the only real relief I've ever gotten is through the initial prostate massage (first 2 or 3) and cord blocks. I also take tramadol for pain once or twice a day & klonopin at night to help with periodic leg movements and teeth grinding. I believe that prostatitis is causing ALL of my symptoms because if you look at what I've had done throughout the years (through process of elimination) there really isn't anything left to cause my symptoms. Of course, I could aways be missing something I guess. My main complaint now is chronic testicular pain (mainly left side) and pain that radiates below the bladder/navel. Also, chronic fatigue, brain fog, asthma, sinus/allergy problems, some discomfort/slight pain after ejaculation & slight burning during urination (sometimes) It should be noted that when I first got sick I was 19 years old and in great shape/health but the combination of infection along with strain during boot camp was simply the end of me.

I've had this crap for so long now that I wouldn't know what it feels like to feel "normal" again, although the the spermatic cord block was a blessing while it lasted. I must admit that most of my relief came from me doing my own research & having the doctors help me along, very sad I know but such is the case with this disease. Even after all of the procedures & hell that I've been through, I'm really scared to death of having the laparoscopic prostate removal. I've read the website and read some of the articles, even most of the forum posts & it seems like it might help me. I just want to be damn sure that it is my prostate (don't really know what else it could be) & not something else before I sign up to have my prostate removed. If anyone reads this biography & you've had the procedure performed or even if you just know a lot about prostatitis, please respond so we can compare notes.

 

Thanks for listening,

 

Hunter

[Dennis Taylor]

You should talk to Dr K offline about this.

[Hunter G]

Yes, I plan on discussing my situation with him but I'm also interested in gaining some perspective from other prostatitis sufferers. Has anyone else had LRP performed with similar symptoms & if so, how much did it help/harm?   

Thanks,

Hunter

[Dave]

Hi Hunter.  Ultimately, the biggest problem with this condition - as I am sure you are aware - is in pinpointing where it is coming from i.e. if they can see a structural problem then there is a good likelihood that they can tell you it is causing the problem, however where nothing is obvious then it will be difficult for you to ever be "damn sure" it is your prostate. It becomes a process of elimination, as you say, but that is a process limited by our current medical knowledge. e.g. if they see bacteria in you expressed prostate fluids then does that mean that is the cause or not? - urologists don't even seem to be in agreement.  I think LRP in many cases is a gamble some people consider worth taking as the only means of ruling the prostate in/out of the equation. There are other potential elements - bladder, bulbourethral glands etc.  Unfortunately there seems to be little data on how big a gamble LRP actually is.  Also I'm not sure if Dr Krongrad's long study is asking about other positive/negative effects of the LRP or just measuring CPSI scores.

Out of interest, although you say you've had loads of antibiotics, did they ever bring temporary relief?   And is your pain bilateral or more on one side than the other?

I think there are a few people now that have had benefit from LRP in terms of ceasing their pain, though some continue to report testicular discomfort but to a much lesser degree than before; it would be interesting to understand why.  Obviously that doesn't say what it will do for you as this whole nerve system seems to be so complex, but I guess if the prostate and seminal vesicles get removed, then there is a chance that the problem will get removed along with them.

[Hunter G]

Hello Dave,

Thanks for the response. Antibiotics never seemed to really do anything except maybe give me slightly more energy (never seemed to help with the pain though) I have spoken with Dr. Krongrad & he seems to think that I would be an excellent candidate for the procedure. For some reason the whole thing just scares me, as I guess it should. Considering that I'm 38, not worried about kids, completely healthy (besides my prostate problems) have a slim build (6'1" & 175 lbs.) & have tried just about everything else, I believe that it's worth a shot.

I'm just concerned about erection problems, incontinence & orgasm but since it's nerve-sparing (leaving lymth nodes too) & because of everything listed above, Dr. Krongrad believes that everything should eventually revert back to the way it was after the LRP. I'm thinking seriously about getting it done in the near future but I'd love to hear some stories from other people that have already had the procedure.

The LRP success rate is around 90% (out of 40 prostatitis patients) & the other 10% are at least better than before the surgery. Basically, no one has gotten worse to my knowledge, so the odds are in my favor.

Oh, the pain is worse mainly on the left side but it hurts on both sides. My last urologist stated that my left side was almost double the size of my right during his first massage (but it got smaller as he did the drainages) He thought that it was one of the most extreme cases he had seen at the time.

You're correct when you say that it's hard to pinpoint the exact cause but I'm leaning heavily on my problems being prostate related now. After all, the first prostate drainage I had actually helped with the pain & gave me more energy but other drainages haven't really helped since then. I believe that the infection/inflammation gets too deep (within acini) for anything to penetrate or exit the gland & it's simply posssible to get cured completely. I'm pretty much out of options & besides it being the actual bladder or cowper's gland, I'm at a loss at what could be causing my pain and discomfort. Do you have prostatitis & if so, what are your symptoms & what have you had done to correct it?

[Dave]

Yes unfortunately I do and have had it for past 13 years... not as long as you but still waaay too long. I'm 41 now.  Symptoms have varied over time - first 8 years were primarily pain or discomfort - some right-sided perineum , some abdomen, some right-sided epidydimus/testicle. Sitting for long periods was sometimes uncomfortable and I would go through periods where it became quite difficult. No issues with urination or ejaculation. Antibiotics did affect it - I was clear for 18 months at one stage (except for one harmless symptom of prostatic fluid being expressed from the urethra during bowel movements).  

I'd thought it was bad but then in 2007 it suddenly went like ten fold worse .. antibiotics got it under control but each ejaculation sent it right back to square one and brought all symptoms back. It was mostly ill-defined yet intense abdominal discomfort rather than pain, however at some stages my balls hurt so much that I daren't go near the kitchen drawer what with all those sharp knives ;-).  At this stage I had no urinary symptoms but then one day I woke up with horrible urgency etc. .... but the pain was gone! Well weird but it eventually settled somewhere between pain and urinary. Anyway, since 2007 I've not done much sitting... because I can't  without risking either abdominal/perineum discomfort or urinary symptoms.

I've had quite a few courses of antibiotics which give me horrible side effects (fungal I think) ... seems that 8 weeks was a good duration to settle issues, though cipro did nothing, and whatever I've had it eventually comes back.  I've tried acupuncture too but no joy.  Urologists here just aren't interested.   Pregabalin/Lyrica has helped alot over the last few years but that does have side effects too.  I have had MRI scans, ultrasounds, cystoscopy and a 'significant' prostate massage for which he wanted me put to sleep for (!) - bled for days afterwards. Also pudendal nerve checks etc.   Unfortunately nothing ever really finds anything useful - other than some bacteria which they can't decide if they should be there or not.

I've seen some things saying that nerve sparing LRP is so much better than non-nerve sparing, but that still you should not expect that things would be the way they were before.  I too share the concerns about those things and also wonder what 'continent'/'dry' actually means... if you sneeze will you leak?  Will you leak urine during sexual climax?  Will I find that it has left me with  long term urinary discomfort/urgency?  Would my penis be shortened? Would I wake up with all those problems and still have the symptoms?.....(right now I am suffering with the effects of phosphaturia - where your pee turns briefly milky as excess phosphates are dumped by the body - if it comes out of the bladder last and is not washed through, it 'burns' the sphincter muscles and the prostate and leaves everything highly irritated for days.. with almost exact same symptoms as my 'chronic prostatitis' including difficulty sitting!).

I have a good feeling that removing the prostate and seminal vesicles might well resolve things for me and if it were not for these questions I've no doubt I would get it removed asap.  I guess this is where weighing up the risks comes in vs hope of success. 

Interesting that 90% success rate ... sounds good. I wonder what the criteria for 'success' is though - was that explained?

[Dennis Taylor]

I was really lucky on continence. Within a couple of weeks of getting the catheter out, I was about 98% continent. I just have the odd leak now but probably no worse than I did after peeing b4 surgery. Quite thrilled about that.

[Dave]

Oh and forgot to say, there seem to be people who defo feel they have got their lives back with the LRP.  And I guess statistically we are in the age range that should fare best.  The thing that concerns me is when other urologists say not to even think of it for a second, as it could wreck things even further. How can we judge what is right?

Dave

[Dennis Taylor]

My opinion is that, considering the lack of effective therapies for CP, it's practically inhumane for urologists to not consider the operation.

I wish every male doctor could have CP for 3 months. I think you'd see them change their tunes.

[Hunter G]

Dave, you've got to weigh all available options. In my case, I've had just about every other procedure done, other than LRP, so I'm pretty well able to narrow it down to my prostate (about 90% certain) In my situation, a few things stand out (1) First series of prostate massages (about 10 years ago) really helped some with the pain & fatigue, but future drainages haven't really made much of a difference & nothing else has helped me besides getting cord blocks, which blocked just about all the pain. Also, during this series of drainages, a couple of different bacteria were cultured from my EPS & there were calcifications found on untrasound (even though Dr. K. doesn't believe that really means anything but I do) (2) Cystoscopy (about 6 years ago) showed my prostate restricting urine flow at the bladder & TUIP helped with the burning on urination (still happens from time to time but better since the operation) (3) My newest urologist always performs prostate massages & constantly finds pus (inflammation) & yeast, although last time he only found pus. It also hurts really bad whenever I have just a decent amount of pressure applied for the prostate massages.

I've asked a few urologits if it should hurt really bad while having a massage (including Dr. Krongrad) & they all say that it's hard to tell. I for one don't think it should hurt like hell whenever you have your prostate massaged with just a slight amount of pressure as opposed to someone with no prostate issues. So, I'm pretty well convinced that it's my prostate & I don't really know where else to turn right now.

Dr. Krongrad mentioned a 90% success rate with 40 patients with prostatitis problems that had undergone LRP & I believe they were all pretty much relieved of their symptoms, whereas the other 10% only got some relief. I don't believe any got worse & he really stresses the fact that younger/healthier patients always recover much faster & usually better. I also know that he's performed 1000's of prostatectomies & is pretty much the pioneer using LRP for prostatitis. So, the surgeon's experience (as with any surgery) is very important, especially with LRP for prostatitis. I believe experience and youth are 2 very critical factors when it comes to LRP. 

As far as other urologists are concerned, I think they're just confused about prostatitis in general & don't want to admit that something may actually help, even if it means removing the prostate. I never understood why this disease isn't studied more than it is. It just blows my mind to be honest with you. Also, a lot of doctors just don't want to admit that they don't know/understand something, so they just keep you moving along to other doctors while you suffer constantly. I think there is a small chance that things could get worse but there's always a chance with any type of surgery & I like our chances of being young/healthy & in the hands of a very experienced surgeon.

Let's face it, we ultimately have 2 decisions (1) Have LRP & potentially get rid of this hell forever (2) Continue to live with this disease for the rest of our lives. We both know that holding out for a "cure" just isn't going to happen in our lifetime. I've had prostatitis for almost 20 years now & during this time I've seen NO advances in treatment, nothing. Everything is potentially still the exact same: Take antibiotcs, get drainages, take pain pills, etc. Sure there are people out there that say try this supplement or try this treatment but drastic times call for drastic measures & personally, I'm sick of this crap ruining my life. I'm tired of waiting on a magical cure & deep down, I know it's just not going to happen. For some reason, doctors just don't care about this disease & the ones that do care still are just as confused as the next one.  

Dennis, you're absolutely correct! What are your before/after symptoms?

[mr park]

Its really simple I recently got told by my gp doctor I couldn't be an expert in this condition he said that simply just doesn't happen he said if its any concillation he got awards for micro biology I was nice about every thing he's said but that facts is he's Lol how egotystical without merit hers old enough to be my dad his award is now useless when it comes to prostatitis! atleast he admited he didn't even know what biofilm is I know he didn't that why I gave him papers on it I've only had this bad a few weeks that's all it take to know more than most doctors! Why? they do not care! almost all doctors and urologists are to stupid to think they can learn from patients! as they believe there expert training makes them superior it only makes them more knowledgable in general not excusivley! they can't inderstand this because they don't have it like you said dennis and don't like to think someone could be smarter than them don't let idiots bother you hunter you know your own body if your prostate is too sore for massage its obvious you have calcification most things come easy to smart people book worms with lots of knowledge are not allways smart they think they are because they can resite information but they can't nessesarly create new information or solve problems an like I said they don't need to cos they don't care find someone that does which is hard there's many egos and money minded medical people. So far in my life ive found 6 out of 21 doctors/medical professionals were good at something and not just because they helped but because they listened and tried what they thought best the rest were lazy and didn't want to help much some have ideas like you haven't go cancer like some of my pateints ie your ok! or your young you should be fine, its in your head, others will literally tell you your a hypocondriac an say your times up now they are clock watchers almost 3 out of 4 times remember these odds don't trust them I learned the hard way I'm not money minded most are! I see the best in others, they see themselves above you. But for that 1 in 4 at least in my life they are worth keeping hold of even if they can't fix you, they will listen and there obviously the smartest doctors.

[mr park]

I think I might agree with blake in your case 20 years of this illness sounds impossible too me. Its so painful at its worst I would literally have my leg cut off in exchange to get rid of the pain if it would work! thats how bad it makes you feel, unbearable.

[Hunter G]

I had LRP almost 3 months ago & I'm slowly getting better. Testicular pain is just about gone & bladder pain is better too. I'm just waiting for the healing process to complete now. I plan on posting an update on this forum every few months. So far it has been worth it.