What Is Your International Prostate Sympton Score?

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Thought it would be interesting and educational for us to share our International Prostate Symptom Score (I-PSS), as well as our Quality of Life (QL) score  both currently and prior to any operation, procedure or drug intervention you may have had. . Feel free to include as little or as much background as possible. 

You can compute your I-PSS here –

http://www.urospec.com/uro/Forms/ipss.pdf

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I'll start --

I-PSS Score pror to being scheduled for TURP: 33 (severe)

QL Score: 6   (age 64)

Current I-PSS Score: 9 (mild/moderate) (age 66)

QL Score 1-2

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Discussion:  Looking back, with a score of 33 (severe), I definitely waited too long before doing anything.

I was probably retaining upwards of 500cc of urine at all times (I have a bladder diverticulum so that didn’t help). My kidney scan at that point showed Hydronephrosis (water in the kidney) in both kidneys due to fluid back up because of my retention and resulting back pressure.

The only drug I took was Flomax (tamsulosin) which helped only minimally for a short period of time. I discontinued it because the positive effects seem to have worn off and I didn’t like the sfx including retrograde ejaculation.

I ended up deciding to postpone my TURP operation and instead started a program of self-catherization (CIC).  Recently, I have been able to decrease the frequency of my catherizations from 6 a day (two years ago) to maybe only once every week or so. It’s hard to say if this improvement is permanent or not, as very little if no data.

Overall, I am extremely pleased, although as typical with CIC, my bladder is usually colonized which means positive for bacteria, however asymptomatic. I also frequently have mild hematuria (blood in urine) which again is common both with CIC and an enlarged prostate. My urologist is not concerned with either the colonization or hematuria.

Unlike with some operations, my improvement has been very gradual over a 2 year time period. During that time,  I was doing CIC 3-6 times a day so it would be impossible to compute an accurate I-PSS score during that period. I will say, however, that once I got used to CIC, it was really no big deal. 

My intent was to continue with CIC for life or until a new operation came around that I liked. Honestly, I am surprised that I have been able to almost discontinue the CIC, because the doctors told me this hardly ever happens. Because I don’t believe in miracles, my guess if I could rehabilitate my bladder though CIC,  so can others, it’s just that the dotors rarely prescribe it for so long, so when they say “it hardly ever happens” I don’t think it’s based on science but simply conjecture.

Jim

 

 

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  • Posted

    Hi Jim,

    Nice idea. My present I-PSS is 1 (age 79)

    QoL is 2

    I had my laser TURP a year ago. By and large, things are OK. But I still get up at least once in the night; often twice. I still have leukocytes; some microhaematuria.

    My stream is OK. And in the day-time I often go 4 - 5 hours without any problem.

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    • Posted

      Hi Ian,

      That's great things went so well!  

      Could you also share your I-PSS and QQL score  prior to your TURP?

      It will be interesting to see not just how much people improvred from their given procedures, but also at what symptomtic juncture they decided to make the decision. Thanks.

      Jim

      Jim

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    • Posted

      Ummm  ... my memory isn't what it was.

      I'd guess: I-PSS at 11; QoL at 4

      My situation is compounded by 8 years of bladder cancer, three TURB (bladder ops), and & off tamsolusin, etc. I generally felt OK, except around the time the cancer was recurring. But it became increasingly clear I had increasing retention - eventually, when it got to over one litre, they decided it was time to sort it ou. So apart from the upset at getting up 2 -3 times/night and peeing perhaps every 2 - 3 hours, I could live with it (compared with the bladder cancer).

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  • Posted

    Hi Jim,

    My I-PSS score was 22.

    I have not yet had a procedure.

    Did you ever go in to acute urinary retention where you couldn't pee at all for days?  I did - and have been self-catheterizing (ave. 3 times a day) for almost a year now.  My biggest concern is infection/colonization).  I am considering the PAE.

    My prostate is 40-50 and is really pressing in to the outside of the bladder right next to the opening - thus decreasing flow.

    Was there a number associated with your hematuria?  Was this done through a urine test by your urologist?  The reason I'm asking is my insurance doesn't cover it for BPH but they do for hematuria.  I think that's insane but we have to play by their rules.

    Thanks a lot. 

     

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    • Posted

      Hi Arlington,

      I'm not sure if you meant this comment for me or Jim, but I'll give my answer anyway.

      I never retained for any long time; on the contrary, I just had increasing frequency. I suspect that, as I didn't empy, my bladder registered as full quicker. I only couldn't pee once or twice, when the blood clots from my bladder tumour were blocking my urethra. So straining against that generally cleared it, but once I did get scared enough to go to hospital to be catheterised.

      As to hematuria, between when it was frank, I get/got readings on the urine reagent test strips I use daily. For what it's worth, the GP & urologist would get the same result when I did have it checked by them.

      I hope that helps.

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    • Posted

      Hi Arlington,

      I never had acute urinary retention but probably as close as you can come. Just before I started self cathing, the only way I could urinate was to push down hard on my abdomen with the palm of my hand (crede manuever).

      You mention a concern about infections/colonizations. Colonization (an asymptomatic UTI) is OK, and nothing to worry about and does not need antibiotics. However, a symptomatic UTI (burning, fever, etc) requires antibiotics. Have you had many symptomtic UTI's (positive urine culture and symptons) since you started self cathing? There are ways to reduce that I could go into at another time and probably better in the self cathing thread.

      My flow is not great either but the important thing is really not flow but post void volume (PVR). Right now my PVR with a natural void is usually below 50cc, which means I can empty my bladder on my own pretty well. That's why I have been able to stop self cathing most of the time. Apparently over a two year period my bladder has healed itself and regained a lot of its lost elasticity.

      Not sure if they did a "number" for my hematuria other than what you see on the dip stick which by memory is "slight", moderate", "gross", etc., I most often have one or the other, but apparently this is quite normal both with CIC and BPH an my uroloigst is not concerned. I use the urine sticks at home but so does my urologist so its documented. 

      I'm surprised your insurance doesn't cover catheters if you have BPH and especially if you went into urinary retention. They certainly are a lot less expensivre than an operation!  Medicare, here in the U.S. pays for up to 200 catheters a month. Not sure what the qualifications are, but I qualified. My guess is that my urinary retention was enough. 

      So, other than your concern about UTI's, how is the self cathing working out? After I got used to it, I found it a very fast, easy and painless way to empty my bladder fully, and therefore stopped shopping around for surgical solutions. Now, a year later, I only have to catherize maybe once every week or so, so I feel like I'm back to where I was twenty years before I started the whole procedure. Sure, I get up sometimes once or twice during the night, but I've done that since my late twenties, so no big deal there.

      Jim

       

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    • Posted

      Thanks a lot jim.

      The cathing is ok but I'm doing it at least 3 times daily and there is no improvement.

      I probably wasn't very clear: the insurance/hematuria question/issue is with respect to the PAE procedure, not the catheters.

      I'm going to have another urine test and hope for hematuria so the PAE procedure can be covered,

      Thanks again.

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  • Posted

    I-PSS score         15

    QL score               2-3

    Age                        71

    Current protocal:  (a) CIC 4x/day

                                 (b) Avodart, daily; Uroxatral, daily; Cialis 5mg every other day

    Tried Flomax with horrible dizziness, and urologist then recommended Rapaflo, but I did not like reports on side effects.  Have never had problems with Uroxatral (on that drug for about 8 or so years) so am returning to it.

    All renal and bladder ultrascans have indicated no hydronephrosis, but urine retention (on CIC 3x) was avg residual of about 400-450.

    Just started CIC 4x lastr week, so we'll see what happens.

    I can live with this, but not with typical results of TURP, which even my PCP says he wouldn't want to do.

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    • Posted

      The desirable Rx is 5mg daily, and what the MD wants, but my insurance allows me only 6 20mg tablets per month (for whatever reason, the plan allows 6 of either the 20mg or the 5mg, so the formner is obviously better, but it's bizarre).

      That yields 24 (approx) 5mg pills after splitting.  But the co-pay is so high that I am trying to stretch the meds, so I don't have to pay it every month.

      Trying to split each (approx) 5mg residual pill would leave so imprecise a residual, with some additional loss from the split, that 2.5mg residual isn't realistically achievable.

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    • Posted

      I had this problem too, but the solution, at least for my insurance company, was easy. Be sure that the your doctor uses the correct diagnosis code for BPH (big prostate ) as opposed to erection problems , and prescribes the correct dosage and 30 pills per month for BPH, and not erection problems.

      God forbid that the prudes at the insurance company would let someone with erection problems enjoy themselves more than 6 times a month.

      Neal

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    • Posted

      Frankly, given the effect of menopause on my wife, six times a month would be wonderful...maybe miraculous.

      But thanks for the reminder about the diagnosis code; I believe it was checked when I had different insurance, but once my employer dumped all over 65 folks into Medicare Part D, the result was different.  

      Apparantly Part D excludes all ED meds from coverage, at all, and the only way I was able to get any Cialis was for its relationship to my BPH problems.  At my next appointment I will check with the nurse, who makes all the Rx calls and faxes; frankly, I like her more than the urologist.

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    • Posted

      I paid a discounted price of $99 a month for 5mg/day Cialis with my AARP Medicare Rx plan. It could be more or less depending on who your Medicare Rx plan is with. And, yes, you will need the correct Medicare diagnosis code. As mentioned, sounds like they gave you the code for ED and not BPH. Of course check with the nurse, but double check directly with your pharmacist and/or whoever you have your Rx plan with. Doctor's offices make mistakes all the time. 

      Jim

       

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    • Posted

      You might consider suggesting to your wife that she see a good endocrinologist. Like men, women's testosterone levels decline as they get older, and particularly at menopause. And yes, women normally produce about 10 % as much testosterone as men. In both men and women testosterone causes normal sex drive. When it goes away, so does the normal sex drive, so get it checked. Also, estrogen, which declines dramatically at menopause, causes normal lubrication in women. No estrogen, no lubrication, and painful intercourse for women. The solution is to use an over the counter lubricant, such as KY warming and moisturizing gel during (before ) intercourse.

      Have fun, and let us know if this helps.

      Neal

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    • Posted

      Thanks, Neal.  When I stop seeing the furniture moved around (that also freaks out the cats; the dogs are too dumb to care), I may try that suggestion; sometimes the prudent choice is to let the storm pass over, before raising sails again.
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