Please tell me there is a cure for incontinence

[LoveMyBostons]

I called my neuro last week because my incontinence has gotten way worse. I've had to wear a maxi pad every day for years now but lately even that isn't enough. I've been dealing with stress incontinence but it seems different now. I don't think I'm emptying my bladder completely. My urine stream is very weak and not much comes out and when it does it's very clear and colorless.

I have an appt schedule with a urologist next month. I saw him 4 years ago (before I knew about the MS) and it was very traumatic. This doctor is my age and I had to have probes inserted into both holes to measure my ability to contract my pelvic floor muscles. The end result was that they just told me to do kegels and left it at that.

This in now interfering with my daily life. I'm hesitant to go out and do social things and at 28 years old I should be getting "out there" and not be stuck at home. I really hope they don't make me go through another physical exam and will give me something to try like a pill to help this.

[Wendella247]

Isn't it lovely that we have to have discussions like this? lol

I am grateful, however, that there's a place to go (within our own 4 walls) to have discussions like this!

[daisy.girl]

I tend to have trouble with retention too....I always place my hands on my lower abdominal region (bladder area) and push...while I bend over, all that while sitting on the toilet. It is called crede's expulsion technique. It helps to get some of the extra urine out.

[LoveMyBostons]

Thanks everyone for your kind words and encouragement and suggestions. I haven't been able to find a urogynecologist around here so I'm keeping the appt. I called this guy's nurse though and she said he has many patients with MS. I mentioned last time they told me to just do kegels and this nurse said "oh no, this is different" so hopefully they can point me toward some treatments.

I checked that medicine out also and of course it is a tier-3 prescription - the most expensive in my insurance plan. I hope there are generics or cheaper ones out there!

Would someone please explain self-catherization to me? I wonder if it would help me. I worry about doing something like that at work though.  

[Lulu54]

Wendy and everyone else,
My feelings about ISC are well known around here.  Once you get past the *ick* factor you will most probably find this a liberating way to deal with retention, UTI's and all the other urinary woes.  Even those of us who work can handle it during the work shift, if necessary.  The eqiupment is small and discreet.  The catheters do not cause pain - they are designed to be used with little effort.   A little bit of practice and you will be able to do this easily.

I would much rather do ISC than go for kidney dialysis regularly.  I feel like taking a chance on my kidneys isn't worth it, and that is definitely a possibility if I allow the retention to continue.  

I hope this discussion has helped you, LoveMyBostons.  Go find a urogyno you are comfortable with and it will be ok.

be well,
Lulu

[Wendella247]

I guess I didn't say it too well about cranberry--it definitely can't cure a UTI, just help prevent one.  I mentioned cranberry juice because some people just hate doing pills.  I prefer the pills myself.  Good point about there being female uro-gyns!  I've always had a male urologist, although my gyn is female.

Thanks for the positive thoughts on self-cath. It always takes me time to get used to the idea when I have to transition from one "fix" to another.  First light pads, then meds, then a sling along with meds and stronger pads, then too many UTIs and heavy pads -- now self-cath?  It sounds less complicated now that I'm not working.  I worked until Dec. 31, 2009, and couldn't deal with the idea of having to do that at work (even tho' it's probably not a big deal once you get the hang of it.)  Anyway, doing it in the comfort of my home until I'm used to the procedure sounds more do-able.  It's just such a basic private function and makes me feel like such an invalid, even though I don't show any outward signs of illness or dysfunction.  It's just hard for me to reconcile, I guess.

Thanks for your input!

Wendy

[essdipity]

Remember, there are urogyns who are female. Mine is, and so is her NP, who does the actual urodynamics testing.

I'm not so sure cranberries are really effective for UTIs, though maybe they do help with prevention. Capsules are much more concentrated than juice, and are relatively inexpensive at WalMart.

Self-cathing isn't so bad, really. Wendy, I urge you to try it. I think it's a much better choice than constant antibiotics that don't really work and that you become resistent to. (That sounds dangerous.) You may still get an infection, but it should be far less often.

Good luck to all the problem pee-ers out there.

ess

[Wendella247]

I can certainly relate to your problems, and feel for you, having such issues at such a young age.  When I was in my early 40's (59 yrs. old now), I had a similar experience when my gyn referred me to a male doctor for uro testing.  It put a bad taste in my mouth for future such exams and testing.  I switched gyns shortly thereafter, and my new one referred me to a great urologist.  I have had 3 urodynamics tests over the last 15 years.  Although my urologist is a male, the testing is done by a female tech who is very friendly and non-judgmental.  She's trained to make me feel at ease and it helps.  Perhaps you can look for a dr. who will provide a female tech, which should make things a little easier for starters.

I'm not sure that pills work for retention.  But I do know that you can get more frequent urinary tract infections due to the build-up of bacteria in the urine when it sits in your bladder for longer than it should.  UTIs require antibiotics and eventually you'll become resistant to them and that can be a big problem for you.  I'm at that point now, and the doctor had to recommend a round of 10 days of tetracycline 4 x a day (every 6 hrs.) which requires strict adherence and you can't eat certain things and some meds, etc, for 1-3 hrs. on either side of the med, but somehow still fitting everything in within that 6 hr. time period. (I feel like I'm on a baby's feeding schedule!)   What a pain, and 5 days into it, I'm still feeling burning and twinges, so I don't know if the med is even working.  

Self-catheterization has been recommended to me over the past 2-3 years, but up until recently, that didn't sound like a comfortable option.  However, after this recent UTI (3 UTIs within 6 months time) and my resistance to the antibiotics, I'm thinking it might be my next step.  I've read posts from a number of ladies who do it and say it's not bad, so that's encouraging for me.

My doctor recommended one of two things to keep my urine acidic (to reduce infection.)  One, most women have heard of -- drink unsweetened cranberry juice several times a day (you can get it at health food stores--I mix it with a little water--it's pretty bitter, but I just remember it's for medicinal purposes and get on with it!)  The other is a medication you take 3x a day that keeps your urine acidic.  It's called Uroqid Acid No. 2.  This is cheaper for me because I can get a 3 month supply for a co-pay of only $5 (until my COBRA insurance runs out, that is!)

Anyway, I recommend finding another urologist and asking when you call if a female does all the testing.  Good luck with this--28 is way too young to feel housebound due to bladder issues.  Let us know how it goes!

Wendy

[Quixotic1]

ess and Lulu are so right!  You need a cure for the doctor without empathy.  Though the Kegels can help milder incontinence in about 50% of MSers, filling pads everyday needs REAL help, not just self exercise.

Retention is a serious concern here if you feel you are not emptying fully.  While that sensation may or may not be accurate, you need to be checked for it either by a quick catheterization (most accurate) or by an ultrasound of your bladder after you have pee'd as completely as you would natuarally.

[tonyad]

    I am sorry that you are having such problems w/ your bladder  :(
While I am not having that issue, I did want to let you know you are in my thoughts and prayers for some answers.

Hugs,
~Tonya

[essdipity]

I completely agree with Lu on this, being a veteran of uro problems.

Any urogyn who just lets you suffer is one who should be history. There are a number of approaches that can help, and you need a doctor who will work with you. Especially at such a young age, your quality of life is at stake.

I urge you to ask around and find a urogyn who will actually help you. Good luck and let us know what happens.

ess

[Lulu54]

I really feel your discomfort - I was having a miserable go of it with incontinence for a long stretch, but I am happy to report that it is now under control.  

My first suggestion for you is - find another urologist - you really need to be seen by a urogynecologist, and preferably a female one if you can find one in your area.  That way all of your problems can be handled by one doctor.  

Retention, hesitancy, urgency - those were all problems I had.  My urogyno felt no need to do a urodynamic study - she went from my history and the retention that showed up on my ultrasound.  We've talked about it again and she says she will do the study if I want but it won't change how she is treating my problem.

I am a member of the ISC club here.  Intermittent Self Catherization is a really simple technique, it allows me to drain my bladder completely, is an easy way to control the retention and subsequent leakage. The urogyno and my neuro both recommend I do this 4 times a day, but usually I find 3 is enough.  

ISC allows me to do a lot more away from home without worrying where the nearest bathroom is in every stop I make.  

I am also taking a drug for my bladder control - I am taking Sanctura  once a day - it could be taken twice a day.  There are lots of drugs out there that can help with this too. You may not find the right one immediately, but may have to experiment until you find one that works.

At your age, I would guess there's not much else that could be causing this problem other than your MS.    If you want to know more details, let me know.

There's also great HP's on the topic - check those out.

be well, Lulu