Chronic Retention of Urine - Enlarged Prostate

Hi Francis, why are doing self-catheterisation? If you have a retention problem like me, you should have you "catheter in" all the time prior to

your operation.  I am now close to 10 weeks with having my catheter in.  After 12 weeks a District Nurse will come to my property and replace it. Something I am not looking forward to.  I have my fingers crossed that I may be called forward for an operation before that. 

You get some really good advice and help on this website, hopefully

Derek/Ben may come in and offer some suitable advice for you.

Best Wishes

Barry

 

Hi Francis,

Prior to retirement I worked in a community health team whose remit was for older people. In those 15 years I never came accross anyone who self-catheterised when using an "in-dwelling" catheter. Such catheters have either an inflatable band or is shaped near the head to prevent it from being expelled. If it has been dislodged, it is almost certainly because the inflatable retaining cuff is deflating or not inflated sufficiently. In an exceptional circumstance it may be the wrong sized catheter. I'm assuming that you haven't unduly rough when coping with it. People who self-catheterise use a much shorter "non-cuffed" catheter which is used only once. Replacing your catheter is a job for someone trained in doing so. Get your Practice Nurse to do it and question why it is continually coming out. If the situation persists, chase your consultant about the risks involved in being obliged to self-catheterise and suggest that surgery is more urgent because of it due to the attendant risk of infection. Have you been slated for TURP surgery? If you have, find out what are the local NHS protocols are for their responsibility to provide that surgery within a required time. I live in Scotland and the local response time for consultation after referral by a GP is 12 weeks and the same if the consultant decides that surgery is the only option (after any courses of medication which haven't resolved the enlarged prostate problem). Be pro-active and don't wait for things to go wrong again, as the rammifications could delay surgery.

Ben

Hi Ben,

Since you have worked in health care, do you know the answer to my question (above) 3 days ago to Derek regarding a stent?

My first catheter came out about a week ago (after apx. 4 months) when the 'cuff' deflated, and was replaced by the district nurse. Despite both catheters bearing the same size (14) the replacement appears to be about one and a half inches shorter than the original!  Although this causes me some discomfort, I am prepared to put up with it until my next urology consultation on Wednesday, but wondered if you had ever come accross a similar occurrence.

From other forums on this site, I understand that self-catheterisation is  in use in the US for retention or its detection, generally after treatment for BHP. I, too, find it odd that DIY should be preferred to permanent catheters replaced by professionals if Francis lives in UK.  

I was advised to self-catheterise many years ago  before my first laser surgery but refused. From people I know and from NG's and Forums over the past fifteen years most have taken the self-route when needed and I have seldom heard of  permanent ones being used except in care homes and hospitals where it is to the advantage/convenience of the staff.

When I had my heart valve surgery two years ago I had been suffering from prostatitis for the preceding three weeks and my prostate was so large that the theatre staff could not get a catheter in so had to use a suprapubic one.  

Hi Mike, I'm afraid that I have no knowledge or information about stents and have not come accross anyone suffering with BHP who was required to self-catheterise. Perhaps the concensus is that self-catheterisation carries unacceptable risks, as there is a very high potential for tissue damage and an increased potential for infection. BHP can also have associated conditions that complicate the insertion of a catheter.  A person's own skills and physical abilties also come into play. What if you are overweight, arthritic or poorly sighted etc., ? It's not an easy technique if you are not properly able. It also doesn't alleviate the need to frequently pee and with it the need to continually catheterise. Amongst my seven friends who have had TURP surgery, all had an "in-dwelling catheter" except me. All found it to be manageable, with inconvenience rather than discomfort being the only topic of conversation.

The USA treatment pattern is based on different critieria, as most treatment is at your own cost or by insurance. It may well be that, as there is no routine ex-surgery system, more is left to the person to manage their condition. I know from working there that unless I went to a Dr. no-one would contact me as a follow-up. It was incumbent on me to take the intiative. With regard to UK, treatment protocols/methods differ by practitioner and region. So it's very dificult to define a common route for treatment. However, there are Care Pathways for certain conditions that map out what goes on and when during a person's travels through the system. It may be worth exploring if there is one for BHP in your Health Authority. It's an advantage to know what the HA is expected to do, so that you can ensure that you are treated within the defined parameters.

In my work, as most of our clients were not fully able to represent themselves, I would advise that the person makes a list of all the questions they want answered during a consultation, as many leave wihout getting all the information they wanted. It is also useful to write seking explicit information. 

Ben

Hi Ben/Guys,

Thanks for all your input in helping Francis.  Got a question of my own in respect of bladder stones.  I believe in accordance with my research that as a result of "Chronic Retention", you are more susceptible to having bladder stones.

When you have a TURP operation, it can also be used to treat and remove bladder stones.  But apparently this is not the case in respect of GL Laser.

I am assuming that if you opt for GL Laser that they would have to do two types of surgery?

Your views on this matter would be much appreciated.

Regards

Barry

P

Hi Barry, Have a look at the NHS choices site under Bladder Stones - Treatment. It's very informative and well presented. Ben

Hi Ben,

Will do, many thanks.

Kind Regards

Barry

It is not so much a common route for treatment as the beliefs and prejudices of urologists. Too many still believe that TURP is still the gold standard in treatments. I refused TURP when first offered it and waited on something better to come along. TUMP did not seem to be it.

When PVP reached our shores I sought out a hospital doing in another Area Health Authority. They said that they would accept me as a patient if my home area referred me and paid for the treatment.  

They eventually agreed but said that I was seeing things through rose tinted glasses.

When my prostate re-grew I was living in another area where they still did not believe in PVP and told me that if I had taken the TURP route that my prostate would not have re-grown. They then said that we now know more about the prostate and surgery is usually not necessary and drug treatment was now preferred. They did not want to refer me to a urologist doing PVP in the next door Health Authority. I accused them of ageism. When eventually seeing the other urologist he felt that I was coping well with my symptoms and could wait for treatment.

I remained in Limbo for a couple of years before seeing a locum urologist at my local hospital. He told me that a renal surgeon at the hospital had been doing Thulium laser surgery for BPH for some years and referred me to him.

When I expressed my surprise that his urology colleagues had not told me of his laser procedure he said they know of it but tend to avoid coming into my area:-)

 

Hi Ben/Guys,

I noticed from the NHS Choices Website in respect of "Bladder Stones", that the main information is as follows:  "The most common cause of bladder stones is when a person is unable to completely empty the urine from their bladder". i.e "If urine sits in the bladder for a long time, chemicals in the urine form crystals which come together and harden to form bladder stones".

Therefore it is quite possible that I may have bladder stones in addition to BPH.

As I mentioned before TURP can treat and remove bladder stones, if present.

According to the information I have found out, the GL Laser cannot be used in the same way.

I assume that my urologist (when I finally meet him) will cover all angles,

or do I need to make him aware of my concern.

Has anybody who has had "retention problems" and received GL Laser been checked for Bladder Stones as well.

Kind Regards

Barry

 

I had retention for ten years before having GL but somehow my bladder survived it, no stones, no diveriticulitis and not unduly sretched. Any stones would have shown up during investgations. 

Hi Barry, Bladder stones were not present for me or any of my friends who had BHP. I wonder if the last para in the NHS site which said "A diet high in fat, sugar or salt but low in vitamin A and vitamin B can increase the risk of bladder stones, especially if a person is also not getting enough fluids to drink" has any relevance to you. Although it says that a dietary cause is less common than urine retention it could be something you could reflect on prior to your consultation and which you can question him/her about. My need for surgey was entirely due to a "grossly enlarged prostate". Thankfully, after my scope the consultant slated me for surgery.

With regard to Derek's post: I agree that there appears to be partisan support by some clinicians for personal treatment routes, regardless of whether it is the most beneficial or timely. Fortunately, l live within the catchment of a major teaching hospital and there was no reluctance to choose the most appropriate method, whatever it might be. Another bonus was that the private consultant I paid for an opinion had just retired from there. With regard to the view of medication instead of surgery; I had extraordinary side effects on medication and welcomed surgery gladly. The worst was being covered in hundreds hard, red spots over my torso which took 7 months to subside.

I'm sure that when you have your consultation you will be well armed to ask the right questions.

Ben

Which drug gave you the hard red spots? What did your GP say and why did you continue with it?

Re partisan consultants, Again I'll avoid identifying the hospital but it is a rather out of the way part of the country. The patient has had BPH and all of its worst symptoms for years. He does not want to have a TURP and his GP advises him not to have one because of the damage it may do and will not refer him to another area.

He was referred to his local hospital where the old urologist only does TURP and has no time for the modern alternatives. When the patient asked to be referred to a big city hospital his request was refused.

When he asked again he was not only refused but told that he would not be seen at this hospital again.      

Hi Ben/Derek,

Many thanks for your input, much appreciated.

Ben, in respect of the last para on the NHS website concerning diet/fluids, I feel it has no relevance to me (but thank you for bringing it up).  I eat well and have done for a while, plenty of fruit, wholegrains, vegetables etc.

I am now well prepared for my initial outpatients appt (hopefully soon), thanks to your quality advice.  I will bring up the subject of bladder stones during my consultation.

I will keep you updated.

Kind Regards

Brian

With the NHS so much depends on the experience of the person you see.

One seldom sees the the Top Man. In five years I did not see the senior consultant whose clinic I was attending. One day his name was on the screen listing the ones on duty that day. I commented to the nurse and she said he is not here today, he is never here on a Monday as its his operating day.

I did once write to him complaining about a consultation I had with one of his registrars. That produced an angry phone call from him. He found that he could not intimidate me and that I could shout louder than him:-)

It did get me a referral the consultant of my choice at another hospital.

Hi Derek,

I think you have hit the nail on the head there Derek, Thinking about it,  I never saw the Top Man in respect of my osteoarthritis of my right knee, in the end, I decided to lose some weight, start swimming/biking and plus I was not at the right age for a knee replacement.  Still get a lot of

pain from my knee but I am coping.

You never know I might be lucky this time?

Kind Regards

Barry

What is the right age for a knee replacement?

A friend had a tumor on his kidney and had to have it removed. He later was found to have bladder cancer and has been continually been treated for it for over four years. In that time he has not been seen or spoken to by the man in charge.

Check up on them, they only want to see the interesting cases they can write papers on. They hardly ever see an ordinary NHS patient. They spend most of their time lecturing and at conferences.  

Hi Derek,

I don't know if there is a right or wrong time (I was in my mid 50s then) just the fact a knee replacement only last 10 to 15 years, then you will need another one.

Kind regards

Brian

hi barry i dont do self catheterisation i have had 5 catheters inserted in total one at my doctors surgery in lochmaben and two done at a and e at blackpool while on holiday and two done at dumfries a and e regards francis

 

The advice I had from the first urologist I went to was don't go to any islands or remote places as you could go into retention at any time. In my ten years of self chosen watchfull waiting until laser surgery arrived on the scene I never did.

When I said to him that we were thinking of going to Zambia on holiday he sadly shook his head:-)

Look to the future Derek, there is light at the end of the tunnel.

A laser beam?

Dear Francis,

Sorry to have got that completely wrong.

Kind Regards

Barry

LOL @ derek