Incontinence

[PlainJane]

Does anyone else have incontinence? Is this a common symptom of IC?

Thanks,

Erica

[massagedoula]

Incontinence is not a direct symptom of IC, but it can be one of OAB (overactive bladder) or PFD (Pelvic Floor Dysfunction) which are conditions that many with IC also suffer from.

[ICNDonna]

I agree. Incontinence is not usually a part of IC. Sometimes a severe flare can cause a little bit with bladder spasms, but if you are leaking you really need to see your urologist.

Donna

[jaded_soul]

i don't have IC, but i have a pretty bad chronic overactive bladder since may 2003. Its frustrating b/c the bladder tests i've had have all come back normal. i've been to more then 5 docs. tried most of the bladder meds out there, been doing accupuncture since last october, been in physical therapy for over 8 months, done biofeedback, tens unit, energy work, massage, chinese meds and things still haven't changed noticebly.

I urge you to talk with your dr. for help b/c as you probably know, living with incontinence sucks and you shouldn't have to. take care...

[PlainJane]

Hi All,

Thanks for your posts. The incontinence was the first symptom I noticed. Then I noticed the frequency. Well acutally the very FIRST symptom I noticed was the fatigue then the incontinence then frequency and last urgency.

I've seen 3 urologists about the frequency and the incontinence and none of them have had a clue how to help me. I too thought it was odd that I suddenly developed incontinence at 24 years of age. I've been dealing with it daily for almost 2 years now. It isn't much fun, ick. It makes me feel yucky to be wet. I am very careful about changing pads etc but I still feel gross.

I've tried overactive bladder medications, antibiotics, acupuncture, homeopathy, naturopathy -- you name it I've probably tried it. Every time my bladder seems to make slight improvement (and there's only been about 2 days of improvement) it seems to go right back to being sick again. I don't think I get flares like you people describe just a constant level of bladder dysfunction and I definitely have never had "remission". I haven't noticed any foods that make it worse (other than coffee which occasionally makes it worse so I cut that out months ago).

I've also had a cystoscopy done and a urodynamics test done and all either of them showed was that my bladder is irritated and unstable. None of the urologists know why this would be. I find this all very odd as I've never had bladder problems in my life. Never as a child did I wet the bed, etc. Wierd huh?

Thanks for your posts.

Erica

[Babs RN]

I developed incontinence at 30 after the birth of my daughter.

Hugs,
Barb :grouphug:

[PlainJane]

I developed incontinence at 30 after the birth of my daughter.

Hugs,
Barb :grouphug:

Hi Barb,

Sorry to hear you developed incontinence after the birth of your daughter. What type of incontinence do you have? I've heard stress incontinence can occur after giving birth.

I've never had children or been pregnant. I seem to have the type of incontinence that is all the time. I've only had one or two episodes of stress incontinence the rest of the time I just seem to dribble all the time for no reason. Well obviously there is a reason I just haven't been able to figure it out yet or treat it.

Erica

[Babs RN]

I have severe constant incontinence. My urethra is a torn piece of flesh hanging there. With bladder spasms I have urine run down my leg. If I stand or sit up too fast, I leak. I have the common SUI sx of coughing, sneezing, laughing. I have been on all the OAB meds as well. Due to the condition of my urethra, my hunner's ulcers, my bladder prolapse and capacity(80ish cc)I am looking more than likely at bladder removal by Dr. Raz at UCLA in the nea future.

Hugs,
Barb :grouphug:

[jaded_soul]

Hi All,

Thanks for your posts. The incontinence was the first symptom I noticed. Then I noticed the frequency. Well acutally the very FIRST symptom I noticed was the fatigue then the incontinence then frequency and last urgency.

I've seen 3 urologists about the frequency and the incontinence and none of them have had a clue how to help me. I too thought it was odd that I suddenly developed incontinence at 24 years of age. I've been dealing with it daily for almost 2 years now. It isn't much fun, ick. It makes me feel yucky to be wet. I am very careful about changing pads etc but I still feel gross.

I've tried overactive bladder medications, antibiotics, acupuncture, homeopathy, naturopathy -- you name it I've probably tried it. Every time my bladder seems to make slight improvement (and there's only been about 2 days of improvement) it seems to go right back to being sick again. I don't think I get flares like you people describe just a constant level of bladder dysfunction and I definitely have never had "remission". I haven't noticed any foods that make it worse (other than coffee which occasionally makes it worse so I cut that out months ago).

I've also had a cystoscopy done and a urodynamics test done and all either of them showed was that my bladder is irritated and unstable. None of the urologists know why this would be. I find this all very odd as I've never had bladder problems in my life. Never as a child did I wet the bed, etc. Wierd huh?

Thanks for your posts.

Erica
i can relate. i have never really had any bladder problems (except for a few UTIs as a kid but i don't remember anything being severe or lingering) but i developed the incontinence out of the blue 2 years ago in may, when i was 23. it did happen after several days of using some OTC diuretics (i have an ED too and thought it would help me feel less bloated. boy would i like to take back that decision). but i've been in pads every day since. ugh. i'm very careful about changing them too, i swear i'm spending my inheritance or something on ****ing pads and tp. i go through about 6-8 rolls of double toilet paper in the afternoon alone (if i'm at home-i try to space out trips longer if i'm out but then i'm more paranoid that i'm leaking and i might smell or something).its funny b/c i used to have the strongest bladder and could go most of the day without peeing, now i can't go more then 10-15 mins without a lot of pressure (and i leak).

have you been diagnosed with IC? and your bladder tests are coming back abnormal? b/c i've had those that you've had and the ic test and tests to check the bladder capacity and other catheter ones and everything comes back normal. I did have an ovarian cyst last thanksgiving and the docs were hoping that was the cause of the incontinence, but nope. mine has never gotten better either and i haven't been able to tell periods of when its doing better. i know caffiene can make it worse for me but i really don't think its that much of a change b/c it can't be much worse then it is, but i try to stay away from that. my docs and phys. therapist and accupunc. all think its related to constipation so i'm trying to alieviate that and may get a colonic soon. my last dr. said that there was nothing left she had to offer unless i wanted the interstim. i'm only 25, i don't want a battery pack, i want my normal bladder back. everyone is telling me to not let it run my lifeand my therapist actually suggested that i get a bag and catheter b/c it would make my life easier...it sucks b/c i have so much on hold right now-getting a better job and applying to grad school. i can't even sit through a movie right now.

you're not alone. hey, maybe we can let each other know if we've found anything that has made a difference in dealing with this as we go about things? take care ;)

[PlainJane]

Hi Jaded_Soul,

Thanks for your post. Sorry to hear you are suffering. I haven't been diagnosed with IC. A LOT of my symptoms are similar to IC so there is a chance that I will end up being diagnosed with it. To tell the truth I don't care WHAT I am diagnosed with as long as someone will treat it!! I haven't found anyone who can treat it yet (I've been searching for almost two years).

My tests all came back normal until I was tested for Ureaplasma Urealyticum. That test came back positive. The urodynamics and cystoscopy showed that my bladder was unstable and irritated to which the urologists basically scratched their heads, told me they didn't know why that would be and called it a day (no kidding, they had ZERO interest in finding out what was wrong with me).

I am on antibiotics for the ureaplasma infection (tried few months of Ofloxacin and made no difference). I am now on Azithromycin and Doxycycline (since Nov. 28). Haven't noticed any improvement.

I will definitely keep you posted if I find out about anything that works. It's nice to have someone my age to talk to, but I am sad you are suffering as well. My life has been on hold completely for nearly two years with this bladder problem. I am 2 credits away from graduating from University but can't as my health is so poor. In some ways I feel my life never even really started. I spent almost the last ten years of my life either depressed or manic. To say the least I have not had the healthiest or most normal life.

I know what you mean about not being able to sit through a movie. I've given up on going to movies. When I used to go I would pee right before I left the house, once before the movie started, once or twice during the movie and then once after the movie and again when I got home from the theatre. I just found it so irritating I haven't been to a movie in a long time.

It's easy for people to say don't let it run your life. What I want to say to them is, if I could just get over it don't you think I would?!? Grrrrrrrr.....they have NO CLUE.

I am feeling quite down tonight and so irritated. Does it show?

Erica

[sami4]

My Gyno told me that not all antibiotics will work with the thre U's. The culture should have told you which ones do work. She told me Cipro did a good job, but this stuff if once embedded can be very, very hard to get rid of.
Also a good book on general bladder problems is You Dont Have to Live with Cystitis by Dr. Larrian Gillespie. It is not just about cystitis, but all of the other including IC.
She also talks about the role of vaginal prolapse in incontinence, unstable urethra and other things. It is worth the read as just because a guy hangs out a Urologist shingle dont mean he is the sharpest pencil in the box.
I had a urologist once who told me bladder infections couldnt be prevented.
I went to the medical library and read every published study for two years on bladder infections. Mine were probably caused by wearing pads and E-coli.
Anyway, I made some personal changes and didnt have another one for 10 years.
Dribbling constantly is from a different cause than stress, or urge. Different problems cause dribbling. Also a low grade infection from the U's or from bacteria can cause a sensitive bladder to react.
Sammie

[PlainJane]

Sami

Thanks for the post and the book suggestion. I ordered it. I am looking forward to reading it.

Erica

[Sarojini]

I had incontinence only once; I got out of the shower and all of a sudden had a huge bladder spasm and peed on the bath mat. It turned out I had a UTI at the time. Generally, with IC I am not incontinent, but during flares sometimes it certainly feels as if I am going to be!!!!

[Judith56]

I had incontinence when I still had my bladder and urethra. I was also very young like you and ended up having the surgery called cystectomy (bladder removal) at age 30. Obviously I had a severe case of IC, so just because this happened to me does not mean it will be the same for you. I had IC all my life, but anyway back to the question. It turned out that my incontinence was caused by detrousor instablitly. The detrousor muscle was not strong enough and that is why I would leak. This was also before the days of Depends or other products of that type so I just changed my underwear and pants several times a day of need be. Judith

[PlainJane]

I just found out I have a group d strept infection. Has anyone experienced incontinence related to this bacteria?

Thanks,

Erica