Author Topic: COMPLEXITIES OF MANAGEMENT  (Read 10554 times)

Gagamama

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COMPLEXITIES OF MANAGEMENT
« on: May 17, 2010, 06:37:53 AM »


Hi

I note we are, as yet, few so I thought I would post some thoughts:

It would appear (I have sought professional help - at last!") that I have stress incontinence and over-active bladder problems.  The former have been developing slowly over many years but started - so it seemed - after I had a hysterectomy. I put it down to the fact that the other organs in my abdomen shifted about a bit now there was a big empty space and this put pressure on the muscles. Otherwise it was just the usual post childbirth stretching that comes home to roost many years later.
The over-active bit started only with  the menopause and did improve a little bit at first with  HRT, when I was on a high dose. Unfortunately the higher dose HRT triggered more migraines and after a decade I came off it and later went back at a much smaller level.
Not even my gynaecologist is entirely sure about how much of each problem is contributing to the overall one which is very frustrating as it means we have to do a trial and error thing.
We tried the medication (Regurin - Trospium Chloride) but that gave me SUCH a dry mouth I could hardly speak - not ideal for a singer! My Gynae' - who is otherwise quite sensitive for a man - felt it was okay to tell me that he had heard a FEMALE gynae' tell a conference that women have a hobson's choice: wet mouth or wet knickers. Not very helpful or encouraging.
I have some faith that bladder retraining through the measuring and timing  (there's information in the links elsewhere I notice) method may eventually show some improvement, though it does seem obsessive to have a jug in the bathroom and be recording everything: some of my friends think this is counter productive because it makes me more aware of my bladder, obsessing about it and thus creating anxiety. But those friends are lucky enough not to have bladder problems!
If anyone  has any additional thoughts they'll be very welcome.

donjackw

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #1 on: June 06, 2010, 08:45:18 PM »
Hi Gagamama, I was a registered nurse and worked for three years for urologic surgeons.  I get really annoyed when I remember how all they could think of was surgery.  I read your post twice and had a couple thoughts. Yes, bladder re-training makes sense - but seems to me you could just try to lengthen the time between visits without all the measuring.  Just a thought.  Another is Estrace (estradiol) cream to strengthen the urethral opening and all the tissue in that area.  Another is do you have a cystocele (bladder prolapse) as that would be something I do know a lot about - having one myself.  And  one other thought is I use an electrical stimulation unit to stimulate the pelvic floor muscles.  Mine is by Biostim (on internet - one site without prescription I've found) I got my first with a prescription and insurance paid for it, but now much cheaper.  This unit is a neuro-muscular stimulator and a tens unit combined - about the size of a large pack of cigarettes.  It has three pre-programmed modes for incontinence, one for stress, one for urge and I can't remember the other.  Many physical therapists use this modality with their much larger stim machines.

Have you seen a physical therapist who specializes in pelvic floor issues?

Hope any of this helps

One last thought - I'm assuming you don't have Interstitial Cystitis - if so, they have a super website.

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #2 on: June 14, 2010, 04:53:36 PM »
Thanks donjackw for your thoughts.  I left out some things in my post because  the whole history would take too long! I have had a Femetone stimulator for many years now but found that, although it worked, it would only do so if I used it every day. It does have the possibility of quite strong stimulation - or feels like it anyway! Unfortunately that caused me other problems (which I don't want to go into here as it would take forever - trust that neither I nor the continence specialist I saw could see a way around it) so I could only tolerate it about once a week. Not enough to stop the problems from growing -  sadly.
As for the measuring...I'm doing it for now because it really focuses the mind! But if I have to continually re-train, yes I probably will drop the measuring part.
I do intend to ask the gynae at my next visit about an oestrogen cream. I take HRT at moment as I had hysterectomy (endometriosis) some 21 years ago and although kept my cervix showed all the symptoms of early menopause - and have a history of osteoporosis in my family.
Too many other issues getting in the way of simple solutions I fear! hence, eventually considering surgery (TVT) for the stress incontinence though it's a risk because that can apparently over stimulative the over-active bladder bit. In defence of my gynae, he was reluctant to operate if we could sort out something that would work.
Interstitial Cystitis  - haven't a clue. Away to look it up now!


Glades

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #3 on: June 23, 2010, 06:19:47 PM »
Do sympathise with your problem Gagamama, I have similar :(     Mine seem to have been triggered by cystitis and kidney infections.  Have had some stress incontinence since the menopause years but the over active bladder is more recent.  Cystitis and kidney infections were definitely brought on after I stopped taking HRT and gradually 'dried out' down below.   Although have to admit to total ignorance of vaginal atrophy until quite recent times.   I am now using a oestrogen pessaries but to some extent think it's a bit late as the irritable bladder problem seems well established.

Am very dubious of the TVT op which I have been offered, as although it seems pretty good for stress incontinence it does not help over active bladder and may make my risk of cystitis worse.   Am currently using an Athena Pelvic Toner but so far no real progress although still keeping it going on a daily basis.  Haven't tried any of the medications although have read about Duloxetine and Vesicare.   It is such a very intimate problem and can make life so difficult.

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #4 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.

Glades

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #5 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.

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #6 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.
NOW...WOW!

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!

Glades

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #7 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!

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #8 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....

Glades

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #9 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 :)

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #10 on: August 19, 2010, 05:06:34 PM »
Well Wensley, (you can tell I have gotten to an age where one's mind goes gaga - where do you think I got my moniker from? - as I have been busily typing you as newbie...never mind, I'm sure you know what I meant!)

I am delighted if I have been even the tiniest source of encouragement.
Here is what I think of "experts" (with apologies to the experts who started this excellent bladder matters website! thank you!) - there are those who have personal experience of one's condition and there are those who can merely empathise because of having studied the condition. The latter can only go on the data available and for incontinence of the types of which we are now beginning to speak, I suspect that historical data is thin on the ground. After all we can all relate to the embarrassment about speaking out so doubtless thousands of women (especially childbearing ones who possibly make up the majority in our category) suffered in silence in past times.
From my own experience I can relate to the "professional advice" in an adaptive manner. I ask myself how relevant does it feel that the expectations offered are particular to my condition. I may have said before but to give you an example of what I mean: my gynaecologist thought that his internal investigations, the results of the urological torture tests (sorry they are dreadfully unpleasant and I wish I had had a better idea of what to expect because then i might have managed to be a bit less hysterical and a bit more stoical) and the book-knowledge he had  indicated that I had both urge and stress incontinence.
The more I read, the more I spoke to other sufferers and, in particular, having come across a delightfully upfront booklet on incontinence written by a specialist nurse from Australia (where they tend to call spades spades), the more I decided that urge incontinence is far more often an emotional problem than a physical one. Whoa! Before all you urgers out there descend on me for trivialising your problems - hear me out....
If for whatever reason (and they could be physical ones) , the bladder's sphincter muscles (or whatever other mechanisms, nerves or whatever...my physiology knowledge isn't all that deep) LEARN to respond to the very first hints of impending fullness and we all rush to the loo, then next time, like a toddler who has just discovered how to manipulate mummy and daddy, those same indicators will send a message to the brain to say "hey come on, if you don't let me empty I'll pee all over the floor!"  Thus starts a sort of cycle of strictly speaking "inappropriate" responses from the brain.
It's telling that urgers may have to release the instant they get indoors (whether their bladder is actually full or not) because home is where we can mostly put away our anxieties.  And we also spend a lot pof anxious time checking out the nearest loos when we are out.
Now, since I have solved my definitely physical problem of stress incontinence (ie. overstretched muscles which don't manage to support my brain's signals to hold on) by having everything hoisted up more tightly with the tape, I have lost all the ANXIETY and my supposed urge incontinence has vanished!
Hence being able to have hugely longer periods between bladder emptying. My "bladder retraining"- which pre-op' was slow and in tiny increments (and that aforementioned Australian continence nurse had said sometimes it takes months or even years of efforts to overcome)  - has sort of fallen into place overnight. That is without the anxiety my brain simply ignores any signals until my bladder has become pretty nearly full (much nearer to 500ml than the less than 200ml I had managed each time before).  Even if the urge problem hadn't vanished (or so I reasoned) I could be calmer about facing the need  to retrain myself.
So what am I saying here?
Well I'm not sure how much help it is to people who ONLY have urge incontinence except that the Aussie nurse seemed certain that retraining one's brain/bladder co-ordination IS possible, but for those of you out there who have evidence of flabby bits leading to leakage under stress, I'd say go ahead and get the latter sorted and then worry about the other bit when you see how improved you are.
Sorry this is a long post but I noticed that there have been several hundred of people reading this who are "guests" so I suspect there are a lot of women out there who don't even want to expose themselves to other sufferers.  I think I'm turning into a bit of a continence evangelist!

Lovealittle

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #11 on: February 13, 2011, 12:53:36 AM »
I have had similar problems and had a TVT just over a year ago

The hyster was a  couple of years after womb ablation and I tried to do without TVT but all the gynae physio in the world couldn't get the stress incontinence sorted.

It now seems that i have both stress and urge incontinence and the urge seems worse post TVT.

I can sneeze without wetting myself but have a post micturation dribble which may or may not be a vaginal reflux...anyone any experience of this?

I have been told to drink less and should take medication but it dries me up completely and causes a lot of other side effects :(

I am using small mugs for drinks and have with the ovestin cream stopped the urges and sl wetting not in time for loo. BUT the post micturation dribble is still there...anyone with similar please?

Gagamama

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Re: COMPLEXITIES OF MANAGEMENT
« Reply #12 on: February 25, 2011, 05:36:18 PM »
I have had similar problems and had a TVT just over a year ago

The hyster was a  couple of years after womb ablation and I tried to do without TVT but all the gynae physio in the world couldn't get the stress incontinence sorted.

It now seems that i have both stress and urge incontinence and the urge seems worse post TVT.

..... stopped the urges and sl wetting not in time for loo. BUT the post micturation dribble is still there...anyone with similar please?

Hi

Checking back again after several months or so...I was simply wondering whether the dribble bit is to do with age - you don't say how old you are. You must be glad to be more or less rid of the stress and serious urge...but if the dribble is bad enough I can understand why you'd be disappointed not to chuck the pantliners!

As a matter of fact , even though I am over the moon about my TVT - and if you read my earlier posts you will see that the urge thing has come under control more or less by itself over time - but I still find that although my stream post operation was not very strong, that has gotten better than it was BUT I still seemed to have a bit of dribble. I learned (well I had to keep reminding myself and it was quite hard work) to stop being rushed about peeing and simply wait an extra moment or two until I stopped dripping. Confess I haven't quite given up my security blanket of pantliners (though I'm overjoyed that I now use just the tiny thin ones for normal people!) .....What's had the best effect though is slowly training myself not to obsess about everything.  That we do get obsessed when we continue with problems is completely understandable and I also accept that my years of yoga experience have probably helped me to learn to relax more.  But no doubt about it, deciding that I could live with a bit of dribble has actually made the difference between dribbling imediately post urination and whether it goes on for a bit longer. Of course when I am out with friends I now have the reputation of taking up residence in the Ladies' while they have to wait for me! But it seems a small price to pay for the overall freedom that TVT has given me.
Maybe you could find some relaxation classes nearby - or a good (non-dynamic) olod fashioned yoga class?
I know we all hate to admit it but there's a lot of psychology that goes on with this condition....something I couldn't acknoweldge at first.
Hope you manage better in the future...or that someone here comes up with some great advice that helps you.