Sign up Latest Topics

  Author   Comment  

Posts: 4
Reply with quote  #1 
Firstly may I apologise for such a long post, I am at the end of my tether really and would really appreciate some advice.

I am 49 years old, nearly 50, and for many years, as far back as I can remember I have had bladder issues with regard to regular visits to the loo and at times passing small amounts but frequently.  At it's best I could get round the golf course and then pass 4-500 ml in one go, but at it's worst it would be every five minutes passing as little as 10-20 ml and varied day to day and there was no patterns with drinks or foods.  It certainly affected life to extent that jobs were based on if a loo was nearby!!

After years of various tests I went to see another Urologist in 2015 with urinary frequency and nocturia.  I had all the usual tests including a DRE which was normal.  I was passing normal amounts of urine considering my liquid intake but passing small amounts frequently so an irritable bladder was diagnosed which was fair considering I have suffered with IBS (bowel) for many years.  I was placed on a medication Solifecanin (Vesicare) and it was a life changer as my nocturia reduced and daytime symptoms improved so I was discharged.

I was warned that the meds could have less effect as time went on and a few months ago I started to have worsening symptoms again with frequency issues.  At about the same time in June 17 I had a blood test for an unrelated problem, type 2 diabetes, and when I rang for results apparently my PSA Total Serum was listed as abnormal at 2.05 ug/l with the guidelines at the surgery set at between 0.00 and 2.00 ug/l.  My full blood count was also abnormal with white cells and platelets all over the place so I was called back in for another test. The test two weeks later showed my PSA as normal at 1.9 and my blood count had normalised which obviously was good news.  The only previous PSA test was back in 2014 when it was 1.84 which again was normal by all accounts.

Back in early December I went back to the GP with my urinary frequency problems and was put on a different med, Betmiga, coming off the Vesicare.  My GP also suggested another PSA Test and the result came back as normal at 1.61 but she decided to re refer me to a Urologist anyway whom I saw early February.  Unfortunately at this time the new meds didn't seem to work and I went back on the Vesicare.

My frequency issues were becoming a joke with visits every 10 minutes at times and early February I was sent home from work with severe frequency issues and pain which seemed to be coming from my urethra.  It felt like there was urine permanently in my urethra and the bladder was never empty and whilst the frequency and non empty bladder feeling were not overly new to me although worse than usual the pain and feeling of being unwell was unusual although there was no discomfort in the process of urinating only before and after.  I got an emergency appointment and told my GP the symptoms - Frequent urination, Discomfort in urethra before and after urination and after ejaculation (which was also a new finding) along with the feeling that my bladder was not empty, again!

He then performed a DRE and a urine test.  He said that my prostate was enlarged, although he didn't say how large and he said he suspected Prostatitis.  He basically said it was like turning a hose on but standing on the pipe and that was what is happening with my waterworks.  The urine sample came back clear.  Obviously I was quite concerned about PC and even though he tried to reassure me that my PSA levels were fine a search with Dr Google (I know, I know) brings up many entries that a normal PSA Level isn't necessarily a green light.  Obviously I have had these urine issues for many years so now I am wondering if all along it has been my prostate and now things have take a turn for the worse.

The GP prescribed me Finasteride 5mg one a day but did say that if these tablets didn't work surgery could become an option which obviously gave me concern.

I then saw the Urologist who declared that he wasn't concerned about the prostate stating that it was a normal enlargement as you get older.  He performed a DRE and an Ultrasound and said that with the fact the prostate felt normal (albeit enlarged) along with a neutral family history (I am adopted) and the PSA scores he wasn't concerned.

I do he said however have an extremely sensitive bladder which due to years of frequency issues has got worse and inflicted inflammation on the waterworks.  So basically when I have 10ml of urine in the bladder it's telling me I need to go whereas in reality I should be holding half a litre I think he said.  So he put me back on Betmiga 50mg and suggested lifestyle changes including eradicating all caffeinated and decaffeinated liquids for at least 3 months and see where we are then,.  He also told me to come off the Finasteride.

I went back to my GP to discuss the urology appointment and he was a bit confused as to why the urologist had asked me to stop the Finasteride and the GP asked me to take them as well as Vesicare and Betmiga which was obviously confusing for me because of what the urologist had said but I went along with what the GP said.  He also prescribed me with an antibiotic and co codamol for the severe discomfort which to be fair helped although co codamol does have a few side effects.

So at this point in time I am taking Finasteride, Betmiga, Vesicare for the waterworks (the antibiotics finished Thursday) and a host of other meds for various other conditions.  After returning to work last week things were a little better with less frequency issues although far from perfect and one or two evenings have been bad on that side.  However I was fairly happy with how things were progressing until Thursday night!!

Up until Thursday night time wasn't a disaster as whilst I would have to get up maybe once or twice a night it was to pass small amounts and I slept fairly well.  No nocturia was diagnosed due to acceptable amounts being passed at night.  However Thursday night was a nightmare with me waking up every two hours to pass quite a large amount each time.  Went to bed Friday night and decided if the same thing happened I would take a note on my frequency chart. 

I was shocked.  I was up 4 times, every one and a half to two hours and passed on each trip 400ml, 300ml, 275ml and 400ml so a staggering 1375ml over night which bar the night before has never happened.  It's usually 100ml tops if I wake every couple of hours.  With my daily output of anything from 1500 to 2600 with probably an average of 1900ml 1375 is an incredibly shocking amount for over night so it's been one step forward and two steps back!

Stopping the coffee and fizzy drinks hasn't really helped at all and in fact I am better off drinking diet coke than I am milk or water and whilst I know Betmiga can take a while to work are any others on a combination of drugs which I can put to my GP?

Is it the bladder, prostate, both or are my kidneys suddenly getting involved?!  I am hoping to go back and see another urologist but does anyone have any ideas or has similar issues?  Much appreciated, sorry for the long post.


Posts: 1,911
Reply with quote  #2 
Welcome to our Forum and am sorry no one has felt able to assist you.

Oh dear like us all this dis-ease is so difficult to diagnose and what suits one is a nightmare for others.

Pleased that your PSA is so low ( although they keep telling us , not always a true indicator) an enlarge prostate will certainly not help your bladder, and may very well be a contributor to your problems.

May I suggest you contact the BHUK office today, they will I am sure offer you some wonderful advice, and if you become a Member will have access to even more support.

Also maybe speak with our incontinence Nurse online on a Wednesday.

Re your diet, Fizzy drinks and anything with additives is normally a No No for the Bladder, again the office can advise and maybe suggest our Nutritionist for advice.

I am sorry you are experiencing a particularly nasty session and do hope you will find some relief soon.

Kind regards


Posts: 4
Reply with quote  #3 
Thank you Kate much appreciated.  Re the fizzy drinks for some bizarre reason since I swapped back to diet coke from water things aren't quite as bad.  Whether that's due to not drinking as much or the fact the meds are starting to work I don't know but I'll try the advise you have suggested, thank you.

Posts: 4
Reply with quote  #4 
Well I saw the Urologist and this was the result :

"Further to ******* underwent a flexible cystoscopy due to symptoms of bladder over activity and slight dysuria/penile pain.
The urethra was normal, the prostate was pigmented all over which might indicate prostatitis, but I am delighted to report there was no bladder pathology and both ureteric orifices looked normal.
I fully explained the findings to ***** and there is no doubt he does not need Finasteride because his prostate is not really enlarged (normal size) and if he does experience dysuria or penile pain, which can be an ongoing problem, he just needs to use some Ibuprofen.
His nocturia is variable from zero to twice (between 12 midnight and 6 am), passing a fair amount of urine between 300 and 400 mls each void.
I strongly advised him to stop drinking three hours before bedtime to avoid getting up at night. However, if he gets up two to three times every night despite this, he may benefit from a small dose of Desmopressin Acetate before going to bed.
At this stage he does not need any further investigation or treatment. Therefore I have reassured him and discharged him back to your care."

I am totally baffled by this to be honest.  Spoke to my GP and he has never heard of a "pigmented prostate" so no idea what that means and the letter does not cover my daytime issues at all.  I have a small cup of cranberry juice with dinner and whilst it helped early on it doesn't really work now.  I tried a tablet of Desmopressin in the morning as an experiment, because I know you are not meant to have it during the day, and it worked wonders where even though I could easily have gone to the loo the feeling was higher up rather than in the urethra so it was far easier to hold so I will talk to my GP about this and also the fact that the consultant hasn't told me to come off the Betmiga or Trospium Chloride.

Feel a bit let down to be honest and whilst pleased that anything serious seems to have been ruled out I'm no better off really than I was when I first visited the urologist. 


Posts: 1,911
Reply with quote  #5 
Hello Max
Again sorry no one has replied.

How very upsetting for you to still be, without any definition.

Did you speak with BHUK? and wonder if you were advised to speak with our Male supporter.

Do let us know what your Doctor, makes of the desmopressin ( are you going to keep taking it?) also re continuation of Betmiga and Trospium.

I am sorry I cannot offer any further support for you to try, but you know we are listening,.


Posts: 6
Reply with quote  #6 
I have issues similar to yours, if you want to consult my recent post.

Posts: 4
Reply with quote  #7 
Hi jcshirke

   Haven't been on here for a while because only Kate replied.  It's really difficult is seems to find men with similar issues to talk to.

You have my sympathies it really is frustrating.  I have read your post and it seems really similar and the annoyance is with me certainly is the seemingly different medical opinions from one of my GP's stating a really enlarged prostate to the consultant saying it was only a small enlargement and forwarding that final letter above which was IMO still full of questions rather than answers.

However I am still on both the Betmiga and Trospium Chloride and take the small dose of Desmopressin before bed.  It helps to be fair and whilst I still have the odd night when I get up at 2 then 4 then 6 most nights I can sleep straight through although I do need a pee as soon as I awake and if I have a lie in I'll wake say 7, need the toilet, go back to bed but will need to go two hours later.  Daytime is a bit better than it was but if I drink a couple of coffees to close together I will be off to the loo several times with not much break in between. 

It's a real shame you can't take Desmopressin more often and during the day.  I did some cover work and hadn't even thought that it would be four or five hours out so was concerned.  As it was only a couple of times I took a Desmopressin and didn't feel the need to go for the 4 and 5 hours, it was brilliant but you are not meant to take it during the day.  So not sure if I should be taking three meds but no-one has said not to.

If you want to talk mate just message me.


Previous Topic | Next Topic

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.