saw urologist #4 today

[PlainJane]

She said my symptoms are not consistent with IC. I had a urodynamics test done that revealed an overactive bladder and apparently that is not consistent with IC, in her opinion. As well, she said incontinence is rare among people with IC.

She gave me some medication to help me with the frequency at night (a drug that is supposed to help me produce less urine at night - here's hoping!!). She said other than that she has nothing new for me to try. She said after I see Dr.Toth if I still need help we could try botox.

Thank you all for posting responses and thank you for all your support. I still feel I am a long way away from getting better and I'm going to keep checking in on this site because it's so informative!

Erica

[tigger_gal]

I wonder why she said that incontinence is rar with people with IC.. There are alot of us with the 200cc range bladders that leak if we sneeze or cough, or worse like hitting a huge bump in the road when we have to pee.. A urodymantics test is only done to see if you are leaking, I really do not believe it is used to determine IC. It can tell you how much your bladder holds tho. Did any one do a hydrodestintion and cystoscopy on you under sedation>
I am happt that you maynot have IC, that is great, I am just wondering if you are getting proper care.
I hope all goes well with dr Toth, maybe he will have some insite for you.

[PlainJane]

I wonder why she said that incontinence is rar with people with IC.. There are alot of us with the 200cc range bladders that leak if we sneeze or cough, or worse like hitting a huge bump in the road when we have to pee..

Sorry I should have specified. The type of leaking I have is for no reason that I can tell. It's not when I cough, sneeze, etc. It seems to happen for no reason that I can tell. Maybe that type of incontinence isn't common in IC? I'm just saying what she said.


A urodymantics test is only done to see if you are leaking, I really do not believe it is used to determine IC. It can tell you how much your bladder holds tho. Did any one do a hydrodestintion and cystoscopy on you under sedation>

I had a cystoscopy done but not with hydrodistension.


I am happt that you maynot have IC, that is great, I am just wondering if you are getting proper care.
I hope all goes well with dr Toth, maybe he will have some insite for you.

I am most definitely NOT getting proper care. I've been trying to get proper care for almost 2 years now. From what I understand Dr.Toth knows way more about these problems than the 4 urologists I've seen. They give me the same cookie cutter explanations ("we don't know why this is happening to you") and the same cookie cutter solutions (none of which I've found helpful).

I really hope Dr.Toth will be different because I have no idea what to do beyond this appointment with him. I'm almost out of ideas.

Erica

[tigger_gal]

hey Erica,
I know what you mean, It took me years to get dxed. Back in 96 they took out my apendix and said there that was your problem.. NOT!
You may have an octive bladder, but still glad you have an appt with this other doctor to seek another opinion.
You really can't tell if you hace IC thru an in office cysto, The worst case of IC can look normal to the naked eye.
Have you looked in your area for IC specialist? I am sure you have. I would hate for you to have to go thru what so many of us have to get a dx.
hope all goes well keep posted.

[traceann]

Tigger is right Erica, an in-office cystoscopy sometimes shows a "normal" looking bladder when it's not. The cystoscopy with hydro is the best way to get a good view of the bladder and see the hallmarks of IC.

I too wish you good luck with Dr Toth!! And do keep us posted!! ;)

[poetgirl]

I have OAB and IC. It's not as rare as your urologist thinks for patients to have overlapping symptoms. I can usually tell the difference between when my bladder is just being overactive (it typically follows a certain pattern) and when I am having an IC flare.

[PlainJane]

.
Have you looked in your area for IC specialist? I am sure you have.

I haven't yet looked for an IC specialist. I think one of the reasons I haven't is I am not yet willing to accept that this might be a permanent condition. I am in semi-denial (if such a thing exists). I am willing to look at websites and forums but not doctors. I figured I would give Dr.Toth a try before I do anything else.

The other thing is I've already tried a lot of things for IC and none of them have worked. The only things left are botox and Elmiron, neither or which I am thrilled with the idea of trying.

Erica

[jaded_soul]

erica...wow your situation sounds a lot like me sorta...i'm also on doc #5, this one is a nurse practioner for a urogynocologist. I don't have IC, but i have overactive bladder....have had it for 2 years. i've been on lots of diff meds and such and with the latest doc, she ran through most of the bladder tests with me, did the IC test which came back normal, the other tests showed that i have a normal bladder. but i don't! b/c i leak 24/7 and sometimes its really bad and i can't hold it for long and basically my life is on hold. i've been doing accupuncture and phys. therapy lately to try and help. what med have you been given to help? the latest med the nurse gave me was oxybutinin pills to take occasionally like if i have somewhere to go and need to hold it more or something. i've been taking one or 2 a day...i'm totally not willing to admit that this could be a chronic prob...

sorry for rambling on! just wanted to let ya know i relate! i hope you find some relief soon! and i suggest keep searching with docs until you find one that truly can help, they are out there!

[marsi4]

Even a cysto with hydrodistention cannot prove whether you have IC or not. Sometimes it's necessary to do several cystos before the evidence presents itself. I had a second cysto done in March of this year when I had the worst symptoms in my 30 or so years that I have this disease. My uro told me that if he hadn't diagnosed me with IC the first time he would be reluctant to give me an IC diagnosis. The only thing he saw in my second cysto were inflammed nerves that is all. My excruciating symptoms lasted 9 months. IC is a difficult disease to understand and diagnose. I would not recommend botox. I spoke to someone who had one recently and he is suffering a lot. He has retention and has a cath in him for weeks. If you are going frequently that could just be an OAB but I can't explain the leakage. If these are the only IC symptoms you have it is unlikely that you have IC. Let us know what Dr. Toth thinks.

Marsi4

Marsi4

[PlainJane]

erica...wow your situation sounds a lot like me sorta...i'm also on doc #5, this one is a nurse practioner for a urogynocologist. I don't have IC, but i have overactive bladder....have had it for 2 years. i've been on lots of diff meds and such and with the latest doc, she ran through most of the bladder tests with me, did the IC test which came back normal, the other tests showed that i have a normal bladder. but i don't! b/c i leak 24/7 and sometimes its really bad and i can't hold it for long and basically my life is on hold. i've been doing accupuncture and phys. therapy lately to try and help. what med have you been given to help? the latest med the nurse gave me was oxybutinin pills to take occasionally like if i have somewhere to go and need to hold it more or something. i've been taking one or 2 a day...i'm totally not willing to admit that this could be a chronic prob...

sorry for rambling on! just wanted to let ya know i relate! i hope you find some relief soon! and i suggest keep searching with docs until you find one that truly can help, they are out there!

Hi Jaded Soul,

The latest med she gave me is a hormone called Desmopressin. It's supposed to help with the frequency at night but I didn't notice any improvement so I just quit taking it. It made me feel very bloated as well.

Watch out for the dry mouth on the Oxybutynin. I got it really bad and drank a lot of water but still got two cavities. I am glad it helps you (somewhat??). I never found it helpful. I also tried Detrol and that didn't help me either.

Please keep me posted on your progress and let me know if you find anything that works. I'm thinking of you!

Take care,

Erica

[PlainJane]

Even a cysto with hydrodistention cannot prove whether you have IC or not. Sometimes it's necessary to do several cystos before the evidence presents itself. I had a second cysto done in March of this year when I had the worst symptoms in my 30 or so years that I have this disease. My uro told me that if he hadn't diagnosed me with IC the first time he would be reluctant to give me an IC diagnosis. The only thing he saw in my second cysto were inflammed nerves that is all. My excruciating symptoms lasted 9 months. IC is a difficult disease to understand and diagnose. I would not recommend botox. I spoke to someone who had one recently and he is suffering a lot. He has retention and has a cath in him for weeks. If you are going frequently that could just be an OAB but I can't explain the leakage. If these are the only IC symptoms you have it is unlikely that you have IC. Let us know what Dr. Toth thinks.

Marsi4

Marsi4

Hi Marsi,

Thanks for the heads up on the Botox. I had good success with it for my TMJ (teeth grinding) pain. I am VERY wary of having it injected into my bladder. I've also tried the overactive bladder medications and they didn't do anything for me except give me dry mouth.

The symptoms I have are frequency, (occasional) urgency, mild incontinence (not associated with urgency just all the time it seems), nocturia (6-8 times/night), and serious fatigue. I don't have any pain whatsoever. I found it really odd that the doctor was trying to diagnose me with a pain condition when I don't have pain. Do you find this strange as well?

Thanks for your post.

Erica

[hiphuray4peas]

I am in a very similar sitch...
My first symptom that I paid attention to was severe incontinence without ANY warning; I had no pain, no urgency, no high frequency! I would stand up, sneeze, cough and just gush urine. I went to doc, and when no bladder infection showed up on my culture I was referred to a uro. Thankfully I saw a doc who is an expert in the IC world. We did tests to eliminate possiblities... boy were we surpised when it showed up that I had IC. At that point we just treated IC and my incontinence subsided also. My incontinence and IC are closely related, so the incontinence hasn't really been addressed. But I definately have both IC AND INCONTINENCE. I'm not sure if it's just an extra symptom that makes me special or another condition that I have to treat seperately. I'm still working with docs to find out more.
It could just be that you are lucky for not experiencing pain, everybody is different, with different symptoms. Sometimes IC isn't easily identified because the warning signs aren't there. There are always exceptions to the rules, and you and I may be one of them. Don't rule out all possiblities yet... it may take trial and error to find out exactly whats going on with you. I'll let you know when we figure out what's going on with me... in the mean time good luck, and keep on trudgin' thru the sludge....

[PlainJane]

Just for argument's sake -- I'm wondering why would a doctor diagnose me with a pain condition when I don't have pain. Keep in mind, he never said IC just a "pain condition." Isn't that something like diagnosing someone with schizophrenia when they don't hear voices or have paranoia? I don't get it at all.

I'm very afraid I will be diagnosed with IC as I've already tried almost all the treatments they can offer me for IC and nothing has helped. I keep trying not to worry about it but of course it's hard because my whole life is at stake. I am absolutely non-functioning. I've had to drop out of school. I can't work. I can't do anything. It's like they are telling me "just live with it". Well duh, if I could just live with it I would be living. Sheesh, doctors!!

Erica

[sweetangel2080]

medicines can take up to four weeks to have effect- make sure you give them a fair trial.
have you looked on the handbook for the diagnostic criteria? what treatments have you had?
There are many people on here that have found they have got better after diagnosis - I have had minor symptoms for years but it built up to the point where my bladder was down to 100cc and peeing every 30 mins to hour - am now doing much better and this is just with a gynaecologist treating me for IC!

[PlainJane]

medicines can take up to four weeks to have effect- make sure you give them a fair trial.
have you looked on the handbook for the diagnostic criteria? what treatments have you had?
There are many people on here that have found they have got better after diagnosis - I have had minor symptoms for years but it built up to the point where my bladder was down to 100cc and peeing every 30 mins to hour - am now doing much better and this is just with a gynaecologist treating me for IC!

I told the urologist the Oxybutynin wasn't working and he told me to stop taking it because if it wasn't working by then it wouldn't work at all. I really feel I've given all these treatments a fair try (I've been seeing a homeopath for 2 years. If 2 years doesn't qualify as a fair shot I don't know what does.)

The doctors don't know how to help me. What I've tried: Desmopressin, Oxybutynin, acupuncture, Detrol, homeopathy, naturopathy, elimination diet (including caffeine, sugar, dairy, fruit, tomatoes, wheat, etc, etc). I've also tried antibiotics (along with probiotics). I can't take antidepressants as I have bipolar disorder. I'm sure I've left out a few things I've tried but the list here is from what I can remember.

I'm glad you are getting better and I'm glad for everyone who is getting better (though I will admit I am envious). My worst symptom is nocturia (usually 6-8 times/ night). This leaves me so fatigued I can't function during the day.

I have checked out the diagnosis criteria several times. I have no idea what is going on.

Erica

[sweetangel2080]

Stick with the urologist or find one that will try all tests to eliminate IC- have you had the potassium test? There were no signs in your hydrodistention? Have you got inflammation?
Could it be an overactive bladder - I know some people with this and it took several types of medication like oxybutinin to help.
Don't give up and make sure you get a diagnosis from your urologist- you may not have IC and that is wonderful - I see that you tried a lot of alternative medicines - what about conventional? Have you been put on Elmiron? any instills?
I had less symptoms after the hydro but you may find you need more medication to help - I hope you find a combination of treatment that works for you soon!

I didn't think that I would and the last few months have been the hardest- last summer I couldn't even work.

[PlainJane]

Stick with the urologist or find one that will try all tests to eliminate IC- have you had the potassium test? There were no signs in your hydrodistention? Have you got inflammation?
Could it be an overactive bladder - I know some people with this and it took several types of medication like oxybutinin to help.
Don't give up and make sure you get a diagnosis from your urologist- you may not have IC and that is wonderful - I see that you tried a lot of alternative medicines - what about conventional? Have you been put on Elmiron? any instills?
I had less symptoms after the hydro but you may find you need more medication to help - I hope you find a combination of treatment that works for you soon!

I didn't think that I would and the last few months have been the hardest- last summer I couldn't even work.

I haven't tried the Potassium test. I've tried pretty much everything except Elmiron and Botox injections.

[jaded_soul]

Erica, you've certainly been through the gamet (sp?) of lots of treatments as have i. frustrating isn't it. i don't think the oxybutinin is doing much for me, its so hard to tell. i know that i had tried the oxybut. patch and at that time i was also on wellbutrin and i got a horrible skin reaction and it made me dizzy. i've also been on detrol LA, the urologist at that time had doubled the dose and it didn't do anything. I'm on adderall as well right now (which certainly doesn't help the bladder situation but i don't function well in my day without it) and well, i don't get as frustrated with the dry mouth as i do with the constipation! (i'm about 99% i have IBS) so i also take this intestinal formula that my accpuncturist gave me (she's also a chinese herbalist). Also, have you tried chinese meds before? she gave me this mix called 'Cuscuta 15' (which has some natural herbs in it) that is supposed to help balance like kidney chi or something. (hell, at this point i'll stand on my head if that will help my bladder). I would recommend physical therapy though if you haven't tried that. that was recommended to me from my urogyno nurse after she ran through every other treatment option with me over the months. i went in to phys. therapy and the pt determined i had really tight pelvic floor muscles...in short, the things i think that have shown some promise with some sort of bladder relief in pt have been when she's done physical stretching of my pelvic floor muscles (sorta like a pap, but she's much more gentle) and some biofeedback with a sensor and electri-stim/tens unit. when my incontinence is bad, i can feel my muscles down there spasming and kegels really don't help me much and when i have these other treatments, i think it helps my mind connect with my body again. I don't know. i'm so freakin frustrated too! my insurance covered visits are over with my pt i think, she's given me the names of a naturopath (but that person is about an hour away from me) and shown me some yoga poses and really wants me to work on the constipation issue. that is a huge bladder trigger apparently. i've had 2 people recommend i look into self cath in the past month, but i really just wish i could wake up and it would disappear. heh. i do have my annual pap next week and will see what that doc says about things...

out of the treatments you've done, has anything shown promise or brief relief? I'll let you know if i come across of anything that helps me more...(sorry for rambling on so much!) take care!

[PlainJane]

Hi Jaded Soul,

Thanks for your post. I never considered physical therapy before. I'm supposed to go see a physical therapist about my jaw (I was actually on my way back from getting a tea for my bladder when I got into a car accident. My friend was driving. How's that for fun?). I've been having a huge flare up and my jaw is very sore. Maybe I could ask about my bladder as well.

Out of the treatments I've tried NONE have helped. It's very frustrating. I haven't tired chinese medicine yet. If this appointment with Dr.Toth doesn't help chinese medicine is the next thing I will try. I did try acupuncture for several months but didnt' notice any improvement.

I hope you find something that works for you. This is no way to live! Keep me posted.

Erica

[Cheries]

Here are a few ideas for you: Is it possible your bladder has "dropped" or something and that is why you are having incontinence? Could surgery help? I would look for an "incontinence" center in a nearby large city. They might be able to help you more. Another option to look into is pelvic floor muscle dysfunction. This could be related. As far as the evening and nocturnia, I have had to finally turn to sleep aids to help with this as I have to work. It has helped me greatly. But I have a lot of pain associated with my IC.

Don't give up. I know it is so hard to find answers so far. You will get there. I personally don't have incontinence, but others here do. Also, check your hormonal levels.