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Messages - Gagamama

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1
All things bladder related / WHEN ONE'S BRAIN IS UNDULY ANXIOUS
« on: February 05, 2013, 11:07:58 AM »
Hi

It's a long time since I visited and I thought I would quickly check back here to see how you are all doing.
 Post TVT I have been getting on with my life but I have discovered that one's brain can play tricks  and make all one's anxieties worse.

Last year (2012 that is) was one of the worst of my life with five deaths of people who mattered to me (my Dad, two friends and both parents-in-law - with whom I was very close)....

During the periods of acute stress, those weeks immediately after the deaths when one is occupied with administrative requirements, I completely forgot about the urge incontinence bit...that had remained slightly there, in the background sort of thing ....BUT, as soon as the worst of each was over, I seemed to have a relapse with acute anxiety about dribbling. My intellect told me that the dribbles were so tiny (hardly dampening the pantliner and then only in the teeniest of drops), but the emotional part of my brain (perhaps the bit that was most stressed by the other events in my life) just threw me into a panic over these obsessions. Not only did I fear that the TVT was losing its effect after only a couple of years, I found myself doing the old - go to the loo at the last minute before leaving the house just in case - thing.

To cut a long story short: telling myself that it was my brain playing tricks, means I have forced myself to go back to the bladder retraining tips that I have spoken about earlier. Don't respond to the signals right away, try to get busy doing something else, repeat "it's my brain playing tricks" or "I won't give in" to myself over and over for a moment or two.

And it has worked - though I am still prone, at times of other anxiety, to get the old fears back.

So I want to say that one really can re-programme the brain to help! It takes effort and attention and cannot replace proper medical assistance be it TVT or oestrogen cream or any one of the new devices on the market to help strengthen the pelvic floor muscles.
It just seems to me that we are afraid of admitting any emotional/psychological aspects in case some person in authority says "it's all in your head"....
.
We know our bodies and should trust ourselves to be brave and admit that brains are funny things; they can make us happy or sad, positive or negative and yes, they can make our symptoms physically worse if we obsess about them.  If you are somebody currently struggling with the anxieties and fears, or the disappointment that some treatment has not been the cure one hoped, be brave, stand up to your brain because my own experience suggests that it can be a tyrant.

BTW, this is NOT suggesting that you are not touch enough if the anxieties run away with you. It is really HARD. I just want to encourage you to keep trying. Good luck.

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All things bladder related / Re: Pelvic Floor Exercises
« on: February 25, 2011, 05:56:36 PM »
Hi everyone

I suffer from stress incontinence!!!!  There I have finally admitted it to someone other than my doctor   ;D

I am 54 and have had this problem for a few years now.

 :-\

WELL DONE MRS MAC YOU ARE ON FIRST STEP TO RECOVERY! WE ARE OPEN A FEARLESS IN OUR DISCUSSIONS HERE.

If you have time, do read all the discussion threads carefully. Even the ones which don't at first seem relevant sometimes offer a little nugget of information that makes you think "aha".

There is almost always something that will help, although the finding of it is often difficult as it varies from person to person.

Something that helped me in my earlier stages of stress incontinence (before I started getting much older!) was one of those pelvic floor toners that work a bit like a TENS machine, battery powered, they send little impulses that make the muscles jump...and thus get exercised many more times than you could ever do pelvic contractions) Mine was the Nuromed Femetone Stimulator which cost me about 80 in 2004 and was worth every penny as it gave me an extra four to five years of hardly any leaks before things went downhill again and I went for TVT op' which has been 100% successful!
I have been told that some hospitals' continence advisors can loan such equipment for you to try. Might be worth investigating.
You can find information on Nuromed at www.nuromed.com
Hope this gives you some hope. Don't give up.

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All things bladder related / Re: Anyone ever had this type problem?
« on: February 25, 2011, 05:42:01 PM »
Hi All

Isn't it strange that hardly anyone (anyone who is supposed to have more expertise than us ordinary folk ) seems to think laterally whne dealing with these seemingly intractable problems. Thank good ness for sites like this: here at least you will find you are not alone and certainly not going mad!

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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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.

5
All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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!

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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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....

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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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!

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All things bladder related / Re: Squamous Metaplasia
« 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.

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All things bladder related / Re: Squamous Metaplasia
« 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!

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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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.

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All things bladder related / Re: COMPLEXITIES OF MANAGEMENT
« 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!


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Forum and Website News / A NOTE FOR GUEST VIEWERS
« on: May 30, 2010, 03:44:35 PM »
I have noticed that we are getting quite a lot of "reads" of the posts but few new members joining. 'Course it's early days yet but I would like to say to all those who read what we are talking about, please don't be shy with us. The sister site Menopause Matters has been of fantastic help to lots of women precisely because there are so many threads of discussion going on. I thought, when I first joined that forum that I would never find anyone who was experiencing what I was experiencing: then I discovered dozens of posts that had all the same problems. realising you are not the only one is so empowering. It gave me the courage to keep persisting with my GP.
It would be great if Bladder Matters developed in the same way.

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All things bladder related / Re: Vagifem
« on: May 30, 2010, 03:38:55 PM »
 Ienjoylife said "I do get migraines, about 3 a year, and after 10 days on the Vagifem, I got a persistent headache which didn't respond to Paracetamol or Iboprufen, so I stopped the Vagifem. It does warn that a side effect could be migraines; the headache then did go away. I'm intending to now just use the Vagifem just twice a week. Put one in this morning, and the headache is back, but I'll persist and see if it settles down."

I was kind of worried about migraines especially as I am on oral HRT anyway: but you don't say whether you have ever taken anything migraine-specific like the Triptans to ease the headaches. I'd be interested to know if those still work. As you say, life without endless UTIs and the chance of a sex life would be great!

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General Discussion / Re: Thank you
« on: May 17, 2010, 06:48:27 AM »


Hello Tricia

Well you have to tell us how you're doing too  :) But I agree with you that we need to be honest with each other if it's going to be helpful. There must be thousands of others out there who are feeling just as isolated and frustrated and probably (let's face it) also feeling dirty and smelly....There's no rationalisation about this...even if one knows that one is keeping clean, using odour absorbing pads etc. etc...I bet I'm not the only one who fears it's obvious to other people. Let's hope they find this website soon - better for all of us.
I get so annoyed that my life is ruled by my bladder >:(
However, as I hinted in a post I made earlier on the Bladder related topic, obsessing can work both ways and I am trying (so hard) to relax and ignore small leakages while I concentrate on managing the big ones.
Pretty miserable position though.

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All things bladder related / Re: Vagifem
« on: May 17, 2010, 06:41:40 AM »


HELLO

Is Vagifem this vaginal oestrogen cream I have heard about? Sounds very interesting so I shall ask my GP and gynaecologist about it.

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