Bathroom issues: My husband will go to the... - PSP Association

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Bathroom issues

mthteach profile image
17 Replies

My husband will go to the bathroom to urinate. He will stay in the bathroom for 20 minutes, come out, and say I couldn't go. Does this happen to other men with PSP? I think there is a medicine that can be taken for this, but I do not know if it would interfere with his other medicines. He is only 61 years old.

Do you talk to the internist, urologist, or neurologist? Thank you for any advice.

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mthteach profile image
mthteach
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17 Replies
Joeglad profile image
Joeglad

It may be PSP or it could be something else. Men of a certain age can start having prostate gland problems so it is better to have a doctor check for that first before assuming it's part of the PSP problem.

NannaB profile image
NannaB

I put a similar question on here about 3 years ago. One reply was, don't presume every symptom is PSP. I took my husband to the GP and after hospital test, it was found he has a very enlarged prostrate. The specialist spoke to me alone and said more invasive investigations would be necessary to discover the reason for the enlargement. He would recommend this for an otherwise healthy man. He then began to waffle so I said, "Are you trying to say that if he has cancer the PSP will take him before the cancer does". He said yes. My husband is on medication which did help a bit but now he has a convene it doesn't matter; he just goes when he can. My husband was 62 when I became aware of the problem. When he does start to urinate, he will stop, pause and then start again. This happens 3 times before his bladder it empty.

My brother, who does not have PSP, started the same symptoms at 62. He is on the same medication as my husband, had all the investigations and there is no sign of cancer. My dad was also diagnosed with an enlarged prostate at 65 and lived until he was a month from his 97th birthday. It is a very common problem for men over 60.

I think this is common in men with PSP. My husband had had this for some time then in late June last year he became urinary incontinent at night (he was 67 then) so off we went to see urologist as our neurologist was on her summer holidays. Tests galore, prescription for drug that stops bladder working at night - it didn't make one bit of difference. A week later when neurologist returned to work she and urologist talked to each other and result was problem caused by PSP which attacks nerves that control bladder and bowel. Nothing to be done except wearing adult diapers (we can't get conveens here in Turkey where we live) and now he is incontinent all the time. If you look on this forum you'll find plenty of posts on this. Sorry it is a nightmare. Go consult doctors but try and get your neurologist to refer you to urologist who knows what PSP is, the one we saw had never heard of it.

GillJan profile image
GillJan

Hi, my husband has gone through this stage, but only during the night, he would get up as much a 2-3 times an hour and go to the bathroom. When awake during the day he explained that he knew when he wanted to go so not a problem, however he was scared of not waking at night and wetting the bed - this by the way has never happened. We talked initially to his neurologist and he has referred to the urology people, they are doing a test next week to make absolutely sure there is nothing medically wrong. They can also recommend treatment - but as our neurologist told me if the urology dept think it is a mind thing - as he is aware incontinence is a poss sympton of PSP - then it is quite possible they will put is mind at ease and things will change back naturally. The urology sent us a test to fill out where he has to put down the time he wakes in the morning, measure and note down each drink and passing of urine and the time he goes to bed, but adding anything that happens in the night too - this made my hubby see he is distrubing both our sleep for no reason as he is not passing urine any more frequently at night now than before his diagnosis.

cabbagecottage profile image
cabbagecottage

SNAP ! my husband is exactly the same but in case he also has Peroines and retracted penis . It's the Bain of our life . he isn't incontinent he is immobil and needs continuous hoisting . he is now 81 I am 78 . the made an apt to go th the hospital clinic but it's impossible to get him into outpatients in his condition . I spoke to the senior Nurse and also GP thy both advises unless he became ill !!!! Dom it to leave well alone , he wears pads at night and during bad days .

if he went into hospital I know he wouldn't come home without a big fight and on top of that could possibly get an infection , So far I keep him infection free . both Go and nurse have told me to keep him out of hospital .

easterncedar profile image
easterncedar

Yes, that is one of my guy's troubles. When the incontinence and inability to go on demand began we were sent on a two- year round of urologists (my guy calls the urologist The Grim Reamer, and he has had a few of those.). and medicine and physical therapists. We even tried biofeedback. Several rounds of drugs with bad side effects and no good ones, fights with the insurance company for the ones that don't cross the blood-brain barrier. All to end with the conclusion that it's just psp. But you have to check, don't you? I don't know that we could have done anything differently, but it wasn't a cost-less experience. Good luck, one and all. Easterncedar

jzygirl profile image
jzygirl

It is worth getting it checked out. But like everyone else has said it is also part and parcel of psp but to put your mind at ease it might be worth having a chat with your gp. Janexx

It could be PSP but if it is caused by an enlarged prostate it may not be cancerous and there are medications to treat this condition. A simple blood test will check your husbands PSA level and the state of his kidneys (which can be damaged by excessive urine retention causing 'back-up') and there is scanning test that measures the size of the prostate. Avodart is used to reduce the prostate size and Xatral (Alfuzosine) facilitates urine flow. I take Avodart in the morning and Xatral at night. So far (20 months) they both work. Because I have no other adverse symptoms and can live a normally active life, including caring for my wife until her death last October, my urologist's reaction to those who suggest an operation is :"don't let them touch you!." Both these drugs have side effects and so your husband would need knowledgeable specialist advice on their possible impact, given his PSP.

I hope this information is useful.

Christopher

Auddonz profile image
Auddonz

Actually my husbands cardio asked him f he was having prob urinating. He is no,t but the cardio said of he does there is a med that will help him with that.

rookiecarer profile image
rookiecarer

For what it's worth my husband tends to urinate twice a day, always during the night and round about late afternoon or early evening. I asked the PSP helpline about this and was told that most PSP patients tend to urinate during the night.

mthteach profile image
mthteach in reply to rookiecarer

I did not know there was such a thing called PSP helpline?

Heady profile image
Heady in reply to mthteach

Where abouts are you? If in UK, contact PSPA, they are very good. My co-ordinater phones regularly to check I am OK, if I am getting the right sort of help. She phoned yesterday, at exactly the wrong/right moment, found me in floods of tears, so she talked me through, felt reasonably calm by the end! Thanks Jane, if you are reading! Also, they have support groups all around the country, which is great for meeting people in the same boat! Plus the helpline, which Rookiecarer has mentioned!

Lots of love

Heady

Heady profile image
Heady

Hi, well, this is a big bag of worms!!! I really think, this is the worst part of PSP. I must spend more time in a toilet than anywhere else. It is ruining our lives.

Night times was the worst, up to the loo every 15-20 minutes, spending at least 10-15 minutes there. Never had a problem actually going, just takes a while. He has got an enlarged prostate, which does not help. Tried quite a few different pills, the last lot, (touch wood) seem to be working. Although, he sleeps through the night now, has to wear a pad, which sometimes works, others, soaking wet bed!!!

During the day now, he wears a pad, for safety reasons. Some days are fine, others, we spend half a day at least going to and fro!!! No chance of any relaxation in our house or eating a meal, without distruption! I really don't know what to do, at the end of my tether.

Nobody really seems to care, or try and do anything, yes, they keep giving him different pills, suggest wearing pads, they are not realising how hard and impossible it makes life, or that it is even related to PSP! There is this "oh well!" attitude. I'm sorry, but that is NOT good enough, this problem is ruining the last part of my husband's life, before PSP takes over him completely. It is NOT taken seriously enough.

Lots of love

Heady

Folliott profile image
Folliott in reply to Heady

Comment below. Sorry but totally agree. It is difficult for both patient and caregiver. This is not what we signed up for but we do it.

I had bladder problems and it was found I had an enlarged prostate, I was given Tamsulosin pills which have helped a lot.

Folliott profile image
Folliott

I AGREE!! I spend so much tine in the showroom or getting him to the washroom it seems I may as well set up the dinner table there. I just sit down and he calls help from the bedroom to get him to the washroom or during the evening he calls help to get him there but gets there by himself if I am not available. The nighttime wet bed and stained carpet from not being able to make it or leaking pants is so time consuming that you wonder if you can do it much longer. Love doesn't tell you to what extent you have to go.

Heady profile image
Heady in reply to Folliott

Ain't life Grand?!!!!!!!!!

Lots of love

Heady

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