Catheters,Drugs and Operation times

Hi again John. My partner gets a very similar feeling and we have been told that it is the bladder trying to get rid of the foreign object (catheter). My partner had acute retention and unable to pee at all. But now after 2 weeks of CIC he is able to dribble a bit naturally before he self caths. And that dribble seems to be getting longer and stronger every few days. Keep coming to this site for reassurance and brilliant advise. I have only been signed on for 2 weeks and its been invaluable! My husband HATED the permenant catheter both the leg bag and the tap thing on the end of his willy (they did both) but with CIC he is in a much better place - really sounds like where you need to be. We are trying to take it one step at a time, and being able to CIC gives you time to think, to plan, to investigate and to learn. I hope that you get to a better emotional place really soon.

Deb x

Well you may have been here a short time Debs but i just wanted to say what you have typed in a few moments has helped eased someones concerns a little and feel less alone and to do that for someone you do not know is something special.And that goes for every one here who replied to me today . So many come here just for info and to leave but everyone here has made me realise whatever outcome i have i need to come back and help others who may be in the same situation i have been. From the bottom of my heart a huge thank you to you and everyone posting here.

Yeah shyed away from that Derek as the Uro said may be Painful Bladder Syndrome in which case Cranberry is a no no . Its the lack of diagnosis that causes issues like this.Have tried a small amount of bicarb of soda in water but can still feel it.

Some health shops have actual cranberry juice without dilution or sweetener. I'm not sure about it in capsule form.

Deb,   If I may just correct you re the NHS, yes you do have the choice of Hospitals and Heath Authorities to use in England but not in Scotland where I live. Don't know about Wales or NI.    I have had 2 Prostate Biopsies with one that left me with Sepsis 2 years ago and I believe that is what has given me Prostatitis which I don't seem to be able to get rid of. I will never have another Biopsy as I would sooner die of Cancer than get as I was an hour from death with Sepsis. Where I live our local hospital has the advanced MRI scanner of which I believe only a few are in the UK, but after my scan with it they said the results were inconclusive so I had to have that second biopsy.  In my view the 3 x MRI scanner is probably very good but still not the total answer for our problems.  Next week I am having another MRI Prostate scan followed by a Pelvic scan so here is hoping there may be some outcome.  Personally I think it is worth spending a lot of time seeking via the internet who are the experts in the NHS and either get a referral for a second opinion or pay for one as I had to do as NHS would only refer me to a Urologist in my same area who was part of the team I was still under. Now through the Hospitals appeals procedure which is there for everyone, I am referred to the same expert I saw who is in another area.

Hope the above comments are of use as there seems to be much confusion when the word Prostate Cancer are mentioned.

David

Do you not now have the choice of hospitals since 'Independence'?  When I lived in Scotland I was a patient at the Western General in Edinburgh. No way was I going to have the barbaric TURP that was all they offered or did at that time in 2004. The same applied to a friend who was a patient at Raigmore in Inverness.

I chose to go to the Freeman in Newcastle for GL PVP and was eventually referred there after the Freeman accepted me as a patient. My friend chose to go to Kings College in London and even had his fares and expenses paid by Inverness. I did not bother asking to be reimbursed.

Hi David. I am glad we don't live in Scotland! But to respond to your points - don't you think that all men, regardless of where they live should have a right to a free MRI prostate/pelvic scan? We too are very fortunate in that we can afford to pay for a private MRI scan, but it just seems so wrong to me that there are so many differences, depending on where you live and what you are 'told' by the experts, and if you can afford to go private etc. To me its should not be about any of the above issues, afterall we are not takling about cosmetic surgery but a real life changer in every sense of the word.I know that the 3 x MRI scan is not THE answer, but it seems a lot better option than is currently offered to most men i.e. biopsy, then TURP. David, I was horrified to read about your experience of biopsy and it made me feel even more determined to resist the pressure for my husband to have this done to him. I can identify with some of what you are saying because my husband had/has prostatitus and I have seen him suffer tremendously. He is now CIC with confidence and is comfortable with it (relatively speaking). But it seems to me that men or at least my husband was treated almost like a processed pea (forgive the pun) in terms of being led very quickly down the path of biopsy followed by TURP, with no time for us to think and reflect and inform oursleves - as prostate cancer was mentioned it almost scared us in to immediate action i.e. do what you are told. As I said to the urologist. You do these things to men all the time, you have probably treated hundreds of men in your career - but this is MY husband and I have only ever had one, and I want the least risk for him at every step - especially during the first steps of 'taking stock'. I am happy with him CIC at the moment and he is much happier than when perm catheter was involved. If we had not given ourselves time to think, I have no doubt that we would now be a surgeons statistic - and not a couple deciding for themselves what is the best journey for us to take.

?David I do hope that your pelvic and prostate scans find the way forward for you. And like I said at the outset of my post, I am glad that we don't live in Scotland! But I am also very angry that there is this disparity between where you live and what options you have available to you.

Deb x

Deb, remember that more men die with prostate cancer than from it.

However is there any reason to believe that your husband has it? There is nothing in what you have told us about his symptoms that would lead me to think it. If he has had BPH for so long why has he not had surgery. I know from this Forum and others that the Manchester area has good NHS uroologists and people get referred there from areas that only do TURP.

Hi Derek, thank you for reminding me! I do know that more men die with prostate cancer than from it - but thank you so much for reminding me, as its so easy to forget when the urologist that you are seeing never fails to mention the words prostate cancer when you refuse a biopsy and TURP. Derek I did look at the Manchester area and I rand round them, only to be told that TURP was the only option. One Salford based hospital did say on their website that they offered HoLEP but when I rang them to confirm, they said no it was just TURP that they offered. Derek my husband has had a raised PSA level for the past several years. It started out at 5, then a two years later it was 6, then when he got diagnosed with prostatitus (in July this year - although not sure if it was acute or chronic) when he went in to acute retention, his PSA level was 12. Last week his PSA level was 17. Until his prostate flared up we had agreed to do watchful waiting, albeit reluctant on the part of the urologist.Derek I would be really grateful if you could tell me which hospitals in the Manchester area offer alternative to TURP. I know that St Helen's hospital do urolift and HoLEP, but this is the only hospital in the Noth West that I have managed to find, so any information on this front, would be very helpful to us. And thank you SO MUCH for reminding me that more men die with PC than from it! It is so easy to forget when medical people use the word cancer! Its like the sheer mention of the word fast tracks you to think -  take it out,  get rid of it, oblitorate it, just do anything to make it go away!  P.S. my husband is a real wuss and will avoid medical intervention - especially surgery - at all costs! That is perhaps why he has avoided surgery for so long - well that and a wife that doesnt want him to be one of those statistics that they quote to you - which although low - have huge not so good implications for how you live the rest of your life. Thanks for replying to me Derek. It is much appreciated - especially the reminder - to everyone on this site!

?Deb x

MY PSA was 5.0 in 1995 and up to 9.8 by 2005. My prostate was 75 grams by then when I had GL PVP. Big prostate = high PSA. I had biopsies in 1995 and 1997. By 2013 my prostate had regrown to 135 grams. with PSA 7.8  After Thulium/Holmium laser surgery PSA came down to 0.74.

Are you aware that GL XS is now the treatment recommended by NICE for BPH instead of TURP.

I’ll see what I can find on the Manchester area but it was given to me a long time ago by someone who lived in a TURP only area in Yorkshire.

If you Google HoLep Manchester it takes you to NHS Choices but not to who to contact.

I'll PM some thoughts and links to you later.

Deb, you are in all ways, correct. I am in the US, but please don't think that I am throwing stones. God knows that we have problems with our health care system.

A biopsy is dangerous. Picture jabbing a large needle several, perhaps many times through the wall of a NON-sterile colon into a prostate. Does that not sound like an excellent way to spread an infection to the prostate, e.g. create a prostititus that didn't otherwise exist? After doing that damage, there are two more ways to screw up a prostate, and perhaps a life.

First, no matter how many times they jab the prostate, they may miss a dangerous cancer, and then send the hapless victim on his way thinking that he is OK, while he is dying of an otherwise cureable cancer.

Second, they may, in fact, find a very slow growing cancer, and send the hapless victim on his way, blindly doing "watchful waiting" while having missed a different dangerous cancer, which eventually kills the victim.

The correct procedure is to do a 3T MRI FIRST. This will show any tumors, and indicate if they are cancerous, then, IF INDICATED those tumors can be biopsied without a lot of jabbing around since they know exactly where they are, rather than just blindly stabbing around.

I hope that this is helpful. In the end, it would probably cost the health service less, and save many lives.

Neal

Deb, I forgot to mention that they will probably tell you that they will give the hapless victim antibiotics before blindly jabbing around, and that will prevent the infection. Prostititus is very difficult to cure because the prostate is a very fatty organ, and it is difficult to get antibiotics absorbed into it. If that were easy, it would probably be easy to cure prostititus. So the antibiotics they issue before a biopsy are probably useless, except to keep the patient happy, and not asking too many embarrassing questions.

Neal

Great post. Thank you Neal.

John

Hi again Derek. We did check out all the hospitals in the north west that offered GL XS and although Salford Royal said they did do it, when I spoke to urology dept, they said that they did not do it. There was only St Helens that offer HoLEP, as far as we could see.

​Deb

At the Freeman in Newcastle it has been the preferred treatment over GL XS for the past three years.

When I wanted GL PVP in 2004 I phoned and spoke to a urology secretary there. She had one of the team phone me back.I told him my symptoms and he said that he would see me as an NHS patient if Edinburgh referred me.  

The Nuffield and Spire group hospitals in the Manchester area all do it but the question remains is that what he needs?

The final test for PC is still a biopsy and they are not as bad as some here would have you believe despite my second experience. My first one was 12 needles with antibiotics and a local. The second was done by a vindictive lady urologist who was annoyed that I had written to the Scottish Health Minister who was my MSP (actually with the consent of her recently retired boss) about the withdrawal of funding for Free PSA testing. I asked about a local and antibiotics and she replied 'I don't do that, write to your MP about it' 

16 needles from her and 16 swear words from me. One needle must have missed it target as just before going home I started to pass blood clots and was kept overnight. Later in the afternoon she proudly told me that she had just been appointed Head of Urology. The paitient before me was there for a vasectomy and it took her 40 minutes to do it. The patient wondered if she had done one before.   

In less than a year she was gone.

Deb, I agree with all your comments, and i think maybe we are the fortunate ones who can go on the computer and investigate plus write letters to relevant people for some answers. The main problem is when something happens to you at 3 in the morning and you are in agony waiting for a District Nurse to unblock a catheter and then get the relief of having it removed then only to find she cannot get another one in. You agree to anything for relief, maybe don't get the possible ill effects explained and are relieved later to be getting knocked out and get a TURP done that has rid you of pain and are passing water again all be it down a tube.  I feel certain you will find the right path for your husband and make use of your MP if you need to get somewhere that the NHS are refusing as it is surprising how they can open doors.

One last comment is I am always surprised at when a PSA level is high or low, as mine was 10 -12 for 15 years and now is 6 after the TURP and some folk have had a Prostate removed on even lower numbers, but I have resisted removal and gone for watchful waiting but could I have avoided Prostatitis if it had been removed.

David

Derek,  The situation here has got worse and each Health Authority works on its own budget and charges other areas for work done on patients not in their area. It has taken me 6 months to get a referral to the Western and Professor McNeill as Tayside say they can do nothing for my Prostatitis, and I had to go through the Complaints procedure before they reluctantly agreed. Even if you want a second opinion it has to be in the same Health Authority which is a waste of time as all Consultants in the area will stick together and not go against another.

David

Deb, I've reported this elsewhere on this forum, but its fun to share again:  When I was diagnosed two years ago this month with BPH, and my peeing ability was totally shut down, I was outfitted with a cath-and-bag, and told I was being scheduled for a TURP in a month or two.  I said no to the bag, and went to CIC in a week.  The Uro-doc pushed the TURP, and I who already knew better, said no, based on the predictable, not to mention the possible, side-effects.  He shoul his head knowingly, and said, "No, no, that only happens to a small percentage of guys who have the TURP."  I looked at him and smiled pleasantly and asked, "And would YOU want to be one of those guys?"  He smiled, and had no answer.  I said, "I will read and wait then..."

Did they never suggest a suprapubic catheter to you?

When I went for heart valve surgery I told them that I was being treated for prostatitus and they said it was OK for the operation to go ahead. In the theatre they could not get a catheter in so fitted a suprapubic one. It was quite a surprise when I came round to find it in.

I then developed fluid in a lung so had a a tube going to bag to drain that plus my ECG monitor and urine bag to caryy around, great fun.

My MSP,  Heath Ministers letter is framed where he wrote that 'I did not know the waiting list was so long'

Things have evidently worsened since we moved from Scotland in 2006. Yet I have repeatedly listened to your politicians telling the world how well they are doing. Seems there is more to health than free prescriptions:-) 

In 2004 The western referred me to Ninewells in Dundee for Holmium laser surgery that I turned down as it was a too rough and ready a treatment compared to GL PVP.  

I also contacted Ayr Hospital who were doing Gyrus but their waiting list was a year.

Things are bad now and when we moved back to Scotland in 2010, the NHS in England was far better with choice of Hospitals and Consultants, plus you did not have mixed wards like here.  Don't think the Nats will have another referendum now, as many folks so disappointed with things they control.  Just wish I did not need the NHS !.

They told me I could not have a suprapubic catheter when I enquired about it due to the previous pain of my body trying to reject catheters. Don't know why.

I would not want to have one for too long. Six days was long enough.

On the strength of them putting in the suprabubic a urologist who did not even see me prescribed Tamsulosin and Finasteride. I had previously resisted taking them for years but succumbed in my weakened state! I quickly stopped the finasteride when I started to grow breasts. Tamsulosin did help my flow but caused more problems that it helped and was also stopped.  

Had Tamsulosin for a while and it worked with no side effects. Over the last few years have had Catheters many times and would do anything not to have had them, been clear for about 2 months just now, phew. The joys of getting old.

It is bad enough for us old Guys but so many suffer from prostate problems at a young age.

I was prescribed a drug (Tagamet) that affected my kidneys when I was 49 and had a kidney X-Ray and a cystoscopy. Stopping the drug stopped the problem but the beautifully named urologist Miss Waterfall told me even then to keep an eye on my prostate as it was slightly enlarged. It was another 11 years before I noticed any problems.

Hi Cartoonman! You should post this every week on here so that men new to the site don't miss it! I quote from the letter that we have just received from the urologist re a TURP "I have wared him about the 10% risk of needing a blood transfusion. 10% risk of erectile dysfunction, 10% risk of needing a second operation within 5 years, and the small risk of incontinence. I forgot to mention that retrograde ejaculation would be an inevitable outcome of TURP". And still this operation is banded about as being the 'Gold Standard'. God only knows what  you get if you opt for the 'Bronze' Standard! Please don;t even go there!

?Cartoonman, how long did you CIC? Did you reach a point where you were able to pee naturally again? My partner has been CIC for about 4 weeks. He had acute urine retention possibly brought on through prostatitus. He is still pretty much dependent on CIC although can pee about a tablespoon dribble style before he CIC. He is also able to 'push' the urine out when CIC as it does come out a 'bit' faster.I suppose that my question to any of you gents out there is  - is there hope that he may be able to pee again without CIC?

?Cartoonman, thank you for your post, it really puts TURP  in to perspective ! Twoddle Urologists Relay to Patients!

Hi Deb,

"Bronze Standard"--- I like that!  :-D

I've been following your posts with interest; your guy is a lucky fellow, to have such a commited and involved partner!   

And thanks; I share my experiences because I have had a few dreadful experiences among many good ones.  Like 27 years ago, when a kidney stone attack landed me in hospital, where, when I asked what I could do to reduce the risk of another attack, the urologist laughed---laughed!--- and said, "You can't do anything!  May as well get used to it, as it'll happen again and again!"  I fired him, found another, more enlightened guy, and have managed to have only one minor experience since (and intentionally stayed home and passed it there).

As for CIC: it's complicated, but I have cathed for much of the past two years.  First for 15 months, when I had my Urolift out in Utah (3000km from home in Pennsylvania!  Sometimes it's worth traveling, for a good doctor).  He said at the time that it was borderline, as I have a small (38gm) but difficult prostate.  The surgery worked IMMEDIATELY, and I literally jumped off the table while calling for a pee bowl!  I then stopped the 2 meds (generic Flomax and Avodart---undesirable side effects), and over time that little nasty organ closed in again.  So I went back to cathing, trying everything from 2 to 6 times a day. The way it is now, I cath right before bed (AND HAVE 7 1/2 HOURS OF UNINTERRUPTED SLEEP!!!), and then I cath again at midday.  

I will be returning to Utah for a second set of implants, which may or may not solve the problem.  The SMALL prostate causes its own set of problems, so there are only "maybes" in my case.  The advantage, of couse, is that if in the future I should decide on HoLEP or PAE, those little implants can be removed, for a different surgery (It's the only option that is REVERSIBLE...)

I have a permanently stretched out bladder, so it retains much fluid(as mentioned here or elsewhere, I don't feel an urge before 400 or 500cc or more). Normally the bladder holds only 300cc or so before it starts the URGENT! message.  In my case, I went DECADES with an undiagnosed case of BPH, mostly because like many, I was avoiding facing the problem.

So my bladder will always remain distended. (That said, a fellow on thios forum with the tag of "Jimjames" has advised me of a counter-intuitive method for reducing the bladder size.)  That's a matter that your guy will get a handle on with a rention test.

As for your guy, you two should continue to read, read, read.  There are pluses and minuses to each alternative, and you will serve yourselves best by being well-informed.

 

PS  And yes, in-between cathing, I DO pee in the original manner, sometimes a meager few drops, but often a satisfying stream and 50 to 150ccs.  Each experience is different (your mileage may vary...  :-)   

Have read this and other from this sire?

https://patient.info/health/acute-prostatitis

 

Deb, Interesting reading your Urologists letter as it has made me think I should try the Lottery again. With all these 10% chances after TURP, I have incontinence, leaking, erectile dysfunction, pain etc., think I stand more chance of a little win at least on that.

David

It seems that there are two Health Lotteries.

Hi cartoonman,

Do you have an enlarged median lobe?

Thanks and good luck!

Why no, but thanks for asking!  :-)  There was some question about that; the radiologist said yes, my hometown uro-doc said no.  The surgeon who did the Urolift agreed with the other doctor...  I did have a small (38gm) prostate, that made the Urolift potentially problematic.