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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Glades on August 14, 2010, 05:21:16 PM »
Hi there,
Remembered to check back again :)
So pleased to hear things are still going well with you since the op.

Funny you should mention advice on the bladder training.  I went to see an incontinence physio just a few weeks ago!  I did the chart with measuring my intake and output and managed 400 mls once but generally about 250.   I had drunk 3 litres (slightly more than usual) on the day I measured and she didn't think my 8 plus one nighttime loo visits too bad for that amount.   But I generally went every 1.5 hrs in the first part of the day slowing down to 2 or 2.5, can't imagine 4 hrs :-[    The adviser I saw seemed to think that at my advanced age (64) I wasn't as unusual as I feel.   However I probably do drink more than most of my friends due to the worry of cystitis.

One of the definitions of 'urge' incontinence said that it was when you had to rush to the loo when you arrived home and just couldn't wait, which is what I am like.
And I definitely identify with your leaking when walking.

Oh well, will struggle on for a while I think, but then will have to summon up the courage for the op.  You have been a big encouragement to me, so thank you so much for your advice, it's appreciated :)
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Gagamama on August 06, 2010, 02:25:47 PM »
Well Newbie, things still going well and the retention part is improving. I have had lots of UTIs over the past couple of years and came to the conclusion that antibiotics didn't work half as well as drinking loads of water and other simple liquids (milk, fruit juice). I started having one of those (actually it was a children's one) plastic sipper bottles (that fix to cycles), full of water, around all the time. Taking sips whenever you see it staring at you is a great way to up the fluid intake. Of course I used to be worried that too much liquid would make the stress incontinence worse; but now I don't have to worry about that - hooray!
Have you had any advice/instruction on how to re-train your bladder to help with the urge incontinence?
It's pretty fiddly (espeically if you are out at work as it probably means one can't do most of the recording during working hours) measuring into a jug each time and recording time and volume produced. But eventually one does start to learn to wait a few minutes longer each time and to try and only go when the bladder is really full. Like everything in life one has to work at it to achieve results but I have proved to myself that results are achievable. So if you don't know how to go about this, ask! I think the aim is to empty the bladder (eventually!) no more frequently than every four hours and to try and produce at least 450ml each time.
Good luck if you try it - I'd urge you to and to keep at it till you start to find some improvement. You have to keep drinking lots all the time as you are re-training the bladder specifically to retain urine for longer before it starts sending you signals. But if you can gradually get to emptying 450mls or more, then you'll not be retaining residual  or "old" urine....If you see what I mean.
Hope this gives you some extra clues....
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Glades on August 06, 2010, 02:00:18 PM »
Hi Gagamana,

So pleased for you :)   Brilliant!

I have pretty much made up my mind that I have to have the op.  Two things been stopping me (apart from the obvious cowardice!), I am worried about the retention problem as I have had such problems with cystitis and kidney infections and also the fact that although it seems to work for stress incontinence, I know I also have urge and it doesn't work for that?

Anyway, I am honestly really pleased for you as I identify so much with the problems you had.  Long may it continue well!
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Gagamama on July 28, 2010, 09:48:23 AM »
Hello Newbie (and anyone else who cares to read this!)

Good news!  Till now I have been somewhat scared to articulate what a resounding success the TVT has been (a bit superstitious about it to be honest).  Before I was always desperately searching for loos so I could go "just in case" (ie. I was so worried about potential leaking that I was desperately - and ineffectively - trying to keep my bladder as empty as possible so that if I did leak it couldn't be very much!). When I walked my dogs, or over slightly rougher ground, or even indoors sometimes going downstairs, I would leak anything from a few drips to copious amounts (and couldn't predict which it might be) because, I guess, of the pull of gravity. If I bumped into anything I would leak from the shock....sometimes I would leak if I lifted something or had to carry something heavy - espeically if I couldn't get my muscles co-ordinated beforehand.

Not only do I not leak in any of those situations but I have stopped feeling that I need to visit the loo beforehand. I get up in the morning and instead of dashing off for the bathroom, I make a leisurely cuppa and only then make my first trip to the loo. One morning I even forgot to go to the bathroom after this cup of tea and went straight out with the dogs for an hour's walk! To tell the truth, I did start, towards the end of it, to feel as if I needed to pee but was able to hold on till I got back home without actually worrying about it too much.

Feel as if I have got my life back after years of having the "problem" at the forefront of my mind throughout every day.

There is a bit of a downside.  My "flow" is not always very strong. The TVT intentionally restricts the exit tubing so I have to push a bit sometimes to get things going! This might mean that I am prone to further infections but I think that can be allayed by making sure I drink plenty water and cranberry juice. Not a hard task. But it's a small price to pay for the freedom.

If TVT looks like it is going to be the solution for your particular problems I would say take the plunge. the relief if phenomenal.  I'm told the total success rate is only about 70-80% but I looked at it another way: even a partial success would have improved my previous sorry state. I'm over the moon at how well things have turned out.

Best of all, the possible worsening of the "irritable bladder" bit of my condition so far seems not to have happened.  I'll come back here in another 6 months to let you all know if things are still as good!
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Glades on July 27, 2010, 07:42:45 PM »
Hello again, haven't checked on here for a while and was wondering how you have got on since your TVT operation?

Well done on being brave and having it done!   I am now coming round to the idea that I will have to go for it, but still being chicken :)
Hope all has gone well for you.
All things bladder related / Re: Squamous Metaplasia
« Last post by Gagamama on July 12, 2010, 05:53:25 PM »
Something else I just thought of: you are aware...well if not you will be now ...of the "sister" site MENOPAUSEMATTERS.CO.UK?  That website has been going a lot longer and it's extraordinary how many things seem to be menopause related....or rather, not necessarily  or always but that's one possible explanation. If you haven't browsed around the topics on the forum I'd encourage you to do so soon.
And the more I read, the more I start to think that parts of this hormone thing begin going awry a lot earlier than the 48-55 years old onset that is often quoted.
Having had some experience of the depressive nature of debilitating and frequent illness that's considered by GPs to be "low grade" (by which they mean not life threatening I think!), it really helps to know that you are not alone and that things CAN get better over time. You will get out from under your shadow....hang in there and keep being as organised an confident as you can force yourself to be.
All things bladder related / Re: Squamous Metaplasia
« Last post by mumof4 on July 09, 2010, 08:12:57 AM »
Hi Gagamama

Thank you for your reply.  Since posting, I have read up a little bit and it seems that Menopause can be linked with recurrent UTI's and symptoms of urge incontinence.  I have yet to find a sympathetic Doc.  I came off long term anti biotics a couple of weeks ago and so far so good.  Just waiting for my Doc to give me the go ahead for HRT - i'm only 41 so medical people didn't even think of menopause as the reason for my bladder problems.  Never having suffered with cystitis, it was quite a shock, never realised just how painful it could be.  I have a telephone appt. with my GP today and will make sure I write a list of concerns and questions I want answered.  I used to consider myself a strong and confident woman but just feel like a shadow of myself and it takes all the strength I have just to leave the house these days  :-[.  Thanks again for taking the time to reply, much appreciated.  Best Wishes. x
All things bladder related / Re: Squamous Metaplasia
« Last post by Gagamama on July 07, 2010, 03:47:01 PM »
Hi Mumof4

     Reading your post, the thing that strikes me is how you are still more or less in the dark even after  - presumably - many consultations with your gynae' and your GP.
     This is not your fault!
But, considering that I think of myself as a bossy, confident, grown up woman, I always astound myself to find that I come out of any consultation with only half my queries answered!
What on earth happens to us during these appointments? Is it that we are very conscious of the corridor full of women waiting their turn as the clock ticks and ticks on the wall? Is it that, faced with the superior knowledge of the doctor, we don't want to feel even smaller and more childlike by revealing that we didn't understand a word he said (well in my case it was a he but sometimes women doctors can be as bad)?
What I have found helps is a) research....look up everything you don't understand on the internet just to get an idea (only don't go assuming it is ALL true as it's hard to tell the good info from the bad - though even saying that...a rough idea is better than no idea at all!); b) think of every question you still need an answer for and type it out on a sheet of paper then - and here's the important bit - GIVE IT TO THE DOC at the start of the consultation! This prevents you from getting that consciousness of "other people waiting " and surreptitiously (sometimes subconsciously) crossing off questions from the list because of time passing. And take a pen with you to write down the answers because you'll never remember half of it when you get home.

This does work though it felt a bit odd the first time I did it and also I still felt a bit like a malingerer!

And writing all this prompts me to say that so far I haven't been completely successful with this strategy but it's usually because I haven't followed the GIVE IT TO DOC rule or haven't written down answers. Memo to self and anyone else who's listening: DON'T BE SHY!
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« Last post by Gagamama on July 07, 2010, 03:33:04 PM »
"It is such a very intimate problem and can make life so difficult."

Well said Wensley; I am very lucky indeed to have a couple of friends with whom I feel I can be open but since neither of them are sufferers (I suspect because they happen to be non childbearers!) they tend to give objective comment - which is good - rather than empathetic comment - which would be better!

Those of us who leave it till late - too late? - to investigate the problems formally still I think have to deal with the prevalent "atmosphere" that, since the condition is not life threatening, it is not as urgent in the medical priory list as child cancer, for example. Something we over 50s have to deal with all the time!

Bottom line is, as one of the aforementioned friends pointed out, is this something which occupies your thoughts every day? If it is, then something should be done about it.

I have by the way just gone ahead with the TVT and it is much too soon to say how successful or not it is/will be. Although my gynaecologist offered lots of general opinion about success and the number of people who had difficulties at first, post operatively (common apparently), I am short on real facts. Guess I have to let time tell. Watch this space. Though I would agree that there doesn';t seem to be much point in TVT if one doesn't have actual stress incontinence. By same token, I can't see how strengthening the pelvic muscles will make much difference if irritable bladder and urge incontinence are really a brain signal problem.
All things bladder related / Squamous Metaplasia
« Last post by mumof4 on June 29, 2010, 02:35:24 PM »
Hi, i'm a 41 year old woman.  From September last year, I had recurrent Urinary Tract Infections, so bad that I was weeing blood, all culture tests came back negative.  I ended up taking 11 courses of anti-biotics and was referred to a Urologist who carried out every test imaginable including a cystoscopy which revealed squamous metaplasia at the opening of the bladder confirming that my bladder had been badly inflamed.  I was put on prophalactic anti-biotics which I came off last week.  I was also suffering what seemed like urge incontinence and was offered more tablets to control this which I refused.  After a visit to a Gynaecologist last week, it appears that I have what he called "impending menopause" - does anyone know whether the two could be linked as I have never had urine infections previously?

Any comments and advice on prevention of further infections would be greatly appreciated.
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