Hi all,
Firstly a big thanks to all those posting stories on here.I have spent two days reading up and there are some very brave people who i wish only the very best for.
I am wondering if anyone can help me.I am very very depressed over things at the moment to the point even of wondering if i can carry on.
For the past year or so on occasions my bladder seemed to have felt a burning sensation that would keep me awake some nights all night.Docs though over active bladder or prostate.Few weeks back the stream became very poor so they put me on Tamulosin.4 days later the stream became strong again which was great but a month later it eased off back to the way it was but doc has kept me on it.Late last week though bladder cramps got very painful and saw a doc who put me on Oxybutynin to ease them.As the weekend progressed it did not help them monday night i realised i could not pee at all! I ended up at A&E who put a catheter in and kept me overnight.
I am 44 and have been sent home with the catheter on and feel totally lost over it.My gf is very supportive but just feel this will end things.I have to go back to the trial without catheter clinic next thursday and Urologist suspects prostate even though he says i am to young.I did have it measured about 6 months back and was only 25g which is nothing compared to many here but symptoms have got far worse over the past month.
All in all urinary issues have gone on about 2 years but did anyone else juust suddenly hit a quick time where they got retention and also did were they able to pee after having the catheter out?I will have had it in about 9 days when i get seen.
Also in the UK does anyone know the length of wait for NHS prostate surgery roughly because i fear if i have to be catheterised again long term its going to push me over the edge as i have shut myself away.
I am so sorry sounding rather dramatic but i am just so scared and all this has come as a huge sudden shock.
(Just a brief quick response; others will offer more, for sure!)
Being unable to pee is disorienting and disheartening! Wearing a bag is disorienting and disheartening! I would STRONGLY urge you to considered learning intermittent self-catheterizing. You are in charge with this, it's easy to learn, and... no bag! And less pressure on the relationship too! SpeediCath or Magic 3 are brands recommened on this forum. And we can provide details for easier use than a nurse will teach you.
Those drugs are famous for showing great results for a very short time. I had the same experience.
I imagine the small size of your prostate could be a contributing factor to your problems, closing in on the bladder neck and shutting it down.
Also, and this is just an educated guess here, but the "bladder cramps" could be the reaction to urine retention, and the bladder being over-stretched. The bladder is "designed" to request emptying at about 300cc. If you can't empty, you are likely retaining much more than that. When I had that, two years ago, my bladder was holding 2.5 LITERS! There are tests to determine your flow rates and also your retention rate (after voiding). This is information you, and the doctor need to have.
Many of us have had to take our care into our own hands, as the uro-docs, both in the UK and here in the US, tend to have rather narrow focusses and offer limited treatments that are more damaging to the patient than should happen to anyone. It will behoove you to learn as much as you can about your situation, and about your options.
I feel for you John. First off avoid all alcohol and caffeine. Do not even take one sip. See if that helps. If not, levaquin is a very effective drug for prostate infections. It does have some side effects namely weakness and pain in tendons if taken for more than 30 days. If you go on it do not do jumping sports as it can cause problems with the achilles. Hope this helps.
Sorry John to hear of your problems but a catheter is not the end of the world and they will not keep you on it longer than necessary. I have had them numerous times and it is better than not being able to go. The last time I had to have a TURP because they could not even get a small catheter in and it has left me with other problems and they are still working on them. If you have to have surgery urgently on the NHS they will get on with it, but hope surgery is a last resort. I tend to think in the Wards and the Waiting Rooms there are others worse than me, and my thoughts are that I can beat the problems and get back to near normal life and whilst I have Cancer the bugger has not caught me yet. Think you gf will be more understanding than you think.
Hi John...
Hang in there man, it will get better for you. I can say that because I have experienced everything you have and more.
Like you my prostate problems started at 45 (I'm now 64.) I was still able to void pretty well at that age. However, my stream was not strong and it started and stopped. It was a few years later I was put on prostate meds. The big scare was a high PSA of 15. I was convinced I had prostate cancer, I went threw a biopsy and it was negative. There were another 4 biopsies over the years all negative, this was after my PSA plateaued at 20. Like you there were several times I headed to urgent care and had a catheter put in after I could not void. I am not going to go into all those details as you can review my previous posts here. When I had my Turp, the tissue or chips were negative for prostate cancer. I can now void well at my age, I was not left incontinent and the really big surprise was I was not left with retrograde ejaculations. Also I'm off all prostate meds.
There has been other drama in my life. Mutpile Sclerosis, a divorce, lost my hotel and bankruptcy. If I can survive what life has dealt me so can you. Right now I'm having the time of my life. I volunteer for The Salvation Army, helping the homeless and have a ministry for inmates. It takes my mind off my troubles and when I find I have helped someone it is such a gratification it is hard to explain.
God's Peace and Love, Denis
Did the MRI or CTSCAN show that you have a large median lobe? This can cause your problems even in the absence of an enlarged prostate.
Hi John,
I'm so sorry to hear about your issues. What doctors have you seen? What is their diagnosis? What are their recommendations?
I toltal understand the depression side. It's quite depressing to suddenly have a catheter attached to you. Not only is it very uncomfortable, but it's tough to live that way.
It also sounds like you may have a bladder or urinary infection. Have they checked your urine and cultured it to see if you have an infection? That could explain the burning sensation.
Also you may wish to look into Self catheterization until you figure out what's going on. Just search this forum for that. The doctor can teach you how to do it easily. At the very least you'll be able to empty your bladder whenever you wish, and it should not interfere with your relationship with your girlfriend. You'll have nothing to wear, and you can esume all of your normal activities.
Once you have a diagnosis, you may wish to get a second opinion. If the issue is a large prostate, you should look into PAE, not prostate surgery. Do some research on PAE. Again check through this forum. Do not do Prostate surgery until all other alternatives have been reseached. Unfortunately, urologists earn their money by surgery, but that's never the best alternative, esecially for someone at your age.
Hang in there. Do lots of research. But really look into self catherization.
Thank you so much Cartoonman for taking the time to post that.Indeed i am wondering now if it could be retention causing the spasms.I did a voiding test about 6 months ago and they said i had about 125ml left in after voiding but i thought i was totally empty but it has been increasingly getting worse.
How painful is self catheterisation to do?The catheter hurt like hell being put in and cant see me being able to do that but do wonder how folk are able to.I do have a Urodynamics test being booked for about 6 weeks time but i just want to get this damn bag away from me as i feel a prisoner.
Thank you so much for posting David . I stopped caffeine a few months back and apart from the odd decaf coffee i drink redbush or water although have fallen off the wagon a few times with a fizzy drink.Hardly touch alcohol.I will write that name down for the medication.Thank you.
Thank you so much supertractorman for your post.I just feel they will take the bag out and i wont pee then another bag on and so on.I am worried sick about it but i think it is down to the fact i have had ME 20 years but also was put on Citalopram for depression for a while and this ruined getting an erection to the point i had to inject myself and even then that did not work all the time.Only now in the past 3 months has with the help of Cialis things come back and just as i have now been able to be intimate i just feel so low this has happened and is stopping me being intimate.And of course you look on google and everything you find online seems to point to Cancer or a catheter for life! But very wise words you posted Sir and cant thank you enough for them.
Denknee thank you so much for that.What an inspiration you are Sir!!! I lost everything to ME and even at moment am having to live with relatives until i can work again.I volunteer too as i want to help others and i agree its a wonderful feeling doing something for others.I hesitated to post today as i prefer to help others than ask myself for help but just one of those times when you have to hold out a hand.
Hi arlington,they only did a CT and just said everything looked fine....doesnt help a lot does it :-(
Hi Greg,thank you so much for such a great post.Docs have been very vague the past times i have seen them as an out patient.One of the Urologists team said Over active bladder and the other said might be prostate.....MIGHT! Had a few DRE's in the past and all normal but this time round no DRE or PSA but could be because they want to do the other tests but do find it puzzling why they did not do that while in hospital!
Have you done ISC Greag?What does it feel like?Is it painful?
self cath takes 5 minutes to learn and is much, much less painful than when someone else does it
Cialis should also help your flow.
One thing I forgot to mention is that you can get a catheter without a bag that has only a tap on it, so that if you feel the urge to go you go like normal and at night you put the bag on while in bed. It would not work for me as it created a vacuum when the last drop came out and was painful, but some folks like it. This can also prove if you are likely to be successful when the catheter comes out. Ask your District Nurse they have a host of knowledge on this normally.
Hi. You have my sympathy. I had a HoLep done 3 years ago which was a total success. This procedure was matched to my very large prostate. Before that my excellent urologist found I had a large lobe protruding into the bladder which was part of the cause for my slow stream. He found this very quickly using a TRUS probe on the couch 'While-I-Waited'. He started me on SIC (Self Insert Catheters) which weren't painful but I realy disliked. One day neither my excllent uro nurse nor myself could get the SIC in due to the protruding lobe so panic ensued and my urologist inserted a supra public catheter (in the lower stomach) there and then. That went well and I had it for 3 months and it was removed at my Holep. In many ways I preferred the SPC to the SIC ones as it doesn't interfer with sex life and you can pee either way if the old way still works. You just have a tap taped to the thigh during the day and attach this to a bag on a stand during the night. My uro found my bladder was twice normal size due to retention but much to our surprise my urodynamic tests showed it had excellent muscle force still so the prostate op was worth doing and went ahead. I had all of this carried out privately with two superb uro consultants. I've no idea what the NHS wait is. If you live near Cambridge Tevita Aho also does his stuff on the NHS at Addenbrookes and he did mention Green Light as well as HoLep for smaller prostates and I susoect he does that technique as well?
John, doing intermittent self cathering is not painful in my opinion. I learned to do it on my own after TURP surgery caused a lot of swelling and an acute retention episode that took me to the ER. Next to a bout with dengue fever in Vietnam, that was the worst pain I've experienced.
I used the intermittent catheter only 6 or so times, and having one always with me for some months gave me real peace of mind, knowing that I would not end up in the ER again, waiting for over an hour for relief.
Hello John, I'm sorry to hear of your problems. I was 68 when a sudden case of acute urine retention send me to the emergency room. It came on without warning and without any other symptoms. It was a painful drive to the hospital.
A brutal and untrained nurse inserted a catheter which was an extremely painful and bloody affair.
My doctor took a wild guess that it was an enlarged prostate (BPH) and started me on Tamsulosin. After the catheter was removed, things seemed to return to normal. I have no idea if the Tansulosin is helping or not.
I started reading all I could find on the internet and thanks to what I read, I discovered intermittent self catherization. For me, that seemed like a good defense just in case this retention thing ever happened again. And it did. Inserting the catheter is completely pain free. And once I perfected the technique, there was no blood involved at all. A little blood is considered normal, but with care, can be eliminated. At least in my case.
I bought the Coloplast Speedicath hydrophilic catheters which I find outstanding. In the nine months since the first attack I've had to use self catherization 6 or 7 more times. I've also done it to check for urine retention quite a few times. (I have very little)
My urologist has told me that if I am happy with the way things are, I do not need to have any surgery at this time. And compared to surgery, I am very happy to insert a catheter when I need to.
Having the indwelling catheter with a bag was not fun at all. Self cathing when needed seems much better to me.
I hope this helps. If you have questions, please ask. Everyone is different of course and so is everyone's particular problem.
John
John thank you so much for your reply.Actually a couple of times with posts i have read them and the tears stated flowing...so much for a tough guy huh!!!
I am guessing you had the same fear that when they take it out you might not be able to pee?Problem is the tamulosin has not seemed to have worked but they have kept me on it while catheter is in.It did work for a while then stopped working .It is just a real fear of that but your words have helped me alot so thank you so much.