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So I haven't been oficially diagnosed with IC yet but considering that I have to pee every 30 min and infection has been ruled out, I am starting to think I have IC. Is it just a matter of getting your meds correct? Right now I am on Detrol LA and Pyridium and both are not helping me. This has been going on for almost 3 weeks now.
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Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.
Medicines:
Elavil 25 mg - 2 x a day
Elmiron 100 mg/3 x a day
Macrobid - after sexytime
Pyridium - as needed - it helps!
metformin - for PCOS
Stopped taking: Detrol LA 5 mg and Vesicare 10mg -
the bad thing about IC is sometimes no matter what you do you are peeing all the time. Has your doctor suggested a hydrodistention and cystocopy? or maybe a urodymantics test?
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'The will of God will never take you where the Grace of God will not protect you.'
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Hello there
Hello there.. I wish that were an easy question to answer. But, it's not. Frequency is in fact one element of I.C. but it also of course is paired with other symptoms as well (ie. burning,irritation, mostly PAIN, SEVERE PAIN usually in the abdomen, or flank area). The cystoscopy/hydrodistention is the official way to determine whether or not you have I.C. or not. This is a same day surgical procedure. Considering you have such frequency and no infection, its very possible. But could nonetheless be a different diagnosis as well. The best course of action would be to see a urologist. Either way it sounds like you need to see one. Go and discuss your symptoms. Keep track of how many times you go. I wish I could say my frequency is better, but it is not. Particularly, because the medicine's they prescribe for the frequency seem to do me more harm than good. So hopefully you are having better luck! I do believe the Detrol is for frequency. For now, take a look around on this site for tips and information if you feel so compelled. This is what I did before I even knew I had I.C. for sure. May the best of health, wellness, and less trips to the bathroom be with you!! Warmest regards.. .KJD
Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.
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sorry but I wish I had the answer to that question! I have that constant fullness feeling and peeing every 30mins!!!
Tried everything to stop it but nothing works.xStarted with symptoms 2004 after a severe infection.
Was diagnosed with IC Feb 2006 after cystoscopy.
Diagnosed with vulvodyina and PN in july 2006.
Dignosed with ME and IBS Oct 2006.
Currently taking Amytriptaline 50mg, regular pain killers and birth control!
Also doing IC diet and regular use of heat packs.
Still struggling with IC and controling my symptoms so looking for some help
also recently had abnormal pap, CIN III and just had LEEP done 2007Comment
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Originally posted by kjd View Post
I have to pee every 30 min too and I just cannot do anything. I can't go anywhere and I can't make any plans. I am so depressed.Last edited by ICNDonna; 04-04-2007, 06:11 AM.Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.
Medicines:
Elavil 25 mg - 2 x a day
Elmiron 100 mg/3 x a day
Macrobid - after sexytime
Pyridium - as needed - it helps!
metformin - for PCOS
Stopped taking: Detrol LA 5 mg and Vesicare 10mgComment
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Have you been to a urologist yet to rule out IC-- If you have, have he/she suggested any testing? I take Vesticare, I have tried other medications but they didn't help me. I know before I started this medication, I use to get up at least 6 times a night ( and really couldn't get back to sleep- which really didn't help me at work!!) and I don't know how many times during the day) but since I started taking this, it has really change my life. good luck. Let us know whats going on with you.Last edited by mary124; 04-04-2007, 03:26 AM.Comment
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^^Thanks for your reply. Well that is encouraging to me. I have been to the Uro one time. I currently only have the frequent urination as my main symptom, no pain. He wants me to come back on the 20th if what he gave me didn't help. So far, it hasn't helped at all. So I think I am gonna call him up to get that appt bumped up. He did mention doing a cysto next time I come in.Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.
Medicines:
Elavil 25 mg - 2 x a day
Elmiron 100 mg/3 x a day
Macrobid - after sexytime
Pyridium - as needed - it helps!
metformin - for PCOS
Stopped taking: Detrol LA 5 mg and Vesicare 10mgComment
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Oh I know I am so depressed too! These are my main symptoms and have had them for two years now!!!!!!
I know some people have pain as their main/worst symptom but this is mine! I've seen 8 urologists about it and they just said its part of the IC and not much they can do about it apart from give me the meds I am on now which dont really help!
I do have good days and bad days but the freqency and the contant urge to go is always there! I have been known to go to toilet 19 times a night (and I wonder why I feel so ill and sleepy at work)
Try to stay positive though. i know that is a stupid thing to say but you need to try to not let it get you down as hard as it may be. A lady who I know who has IC goes to toilet on average every 10mins and became housebound...the poor woman
xStarted with symptoms 2004 after a severe infection.
Was diagnosed with IC Feb 2006 after cystoscopy.
Diagnosed with vulvodyina and PN in july 2006.
Dignosed with ME and IBS Oct 2006.
Currently taking Amytriptaline 50mg, regular pain killers and birth control!
Also doing IC diet and regular use of heat packs.
Still struggling with IC and controling my symptoms so looking for some help
also recently had abnormal pap, CIN III and just had LEEP done 2007Comment
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I know this might sound really condisending but you need to concentrate on getting a correct diagnosis before you start worrying! You might not have IC in which case the freqency might pass!Originally posted by colleenco View Post
But if it is IC there are different meds they can give you which will help to an extent depending on how severe your IC is.
Just because they havent worked so well for me doesnt mean they wont work for you!
I have quite severe IC which is why I have this freqency all day every day and probably will have it for the rest of my life which is why I suffer with depression........but alot of women do get some relief from diet/meds so dont you lose hope yet.
But I do know how you are feeling right now and I know how hard it is. I would try drinking a glass of water with (2 spoonfuls) of baking soda and watch your diet. If I have any caffine my symptoms get worse.
good luck and Welcome
Started with symptoms 2004 after a severe infection.
Was diagnosed with IC Feb 2006 after cystoscopy.
Diagnosed with vulvodyina and PN in july 2006.
Dignosed with ME and IBS Oct 2006.
Currently taking Amytriptaline 50mg, regular pain killers and birth control!
Also doing IC diet and regular use of heat packs.
Still struggling with IC and controling my symptoms so looking for some help
also recently had abnormal pap, CIN III and just had LEEP done 2007Comment
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^^Thanks for your help. I know I have to wait for my official Dx. I shouldn't get so upset but it's hard not to. thx againDiagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.
Medicines:
Elavil 25 mg - 2 x a day
Elmiron 100 mg/3 x a day
Macrobid - after sexytime
Pyridium - as needed - it helps!
metformin - for PCOS
Stopped taking: Detrol LA 5 mg and Vesicare 10mgComment
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Of course it's hard not to get upset. I think we were ALL upset in the beginning - I especially worried before I knew I had IC b/c I was not getting any answers and didn't have a name for this "thing". I knew it needed a name to get better. Then when I had the name IC I was even more worried. So, don't apologize for worrying!
The best thing you can do is work with your doctor/urologist to start ruling out other possibilities and getting to the bottom of your symptoms. It totally freaked me out when I heard "IC is not curable, but is treatable". That IS scary and then reading about other people's scary outcomes made it worse.
Listen - even if it is IC, and you don't know that yet, it IS treatable and most ICers do end up finding treatments that help them feel so much better. I felt EXACTLY like you in the beginning symptom-wise and guess what? No symptoms now. Honest. I was soooooooooo scared that I would never ever feel better and was starting to prepare myself to accept where I was at and find ways to cope with the feeling of needing to pee ALL the time. It was scary to hope that I might feel better b/c - what if I never did?????
It's been 2 or 3 years now of feeling pretty much 100% back to normal and eating what I want again and living life the way I did before. It CAN happen. Read as much as you can (but take breaks!), start the IC diet, and arm yourself with as much info as you can about the bladder and about IC so that you can best help your doctor help you.
Hang in there, OK? Tell yourself that all this discomfort is temporary.
Last edited by vm; 04-04-2007, 04:38 AM.Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
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“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian TracyComment
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^^^Thanks Kim! Your words are SO encouraging. All I want is to be normal again. You're right, I don't even know if I def have IC yet, but I have this gut feeling about it. I am so glad to hear how everything is back to *normal* for you. I will keep you posted on what I find out.Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.
Medicines:
Elavil 25 mg - 2 x a day
Elmiron 100 mg/3 x a day
Macrobid - after sexytime
Pyridium - as needed - it helps!
metformin - for PCOS
Stopped taking: Detrol LA 5 mg and Vesicare 10mgComment
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Pee Pee Diary
My suggestion is that BEFORE you go to the urologist, start keeping a log of what time you pee, & how much you pee. Just measure it with a measuring cup or you might be able to get what's called a "nun's cap" which is a thing you put in your toilet that you pee into and measure your pee. Or just be ghetto and use a measuring cup at home. And do this log for 3 days.
The reason I say this is b/c the first time I went to a uro she didn't do anything but tell me to go home and do this log. Then I had to wait ANOTHER two weeks to go back and show her my log. That's frustrating when you're looking for answers. So perhaps if you go in there for the first time with this kind of information you will get your answers soon rather than later.
Hope this helps!!Lee Ann
Current Rx Meds:
Atarax, Ditropan, Elmiron
Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
Hooray for babies!
Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
Didn't work for me:
Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
IC (Mod-Severe) since 1996
UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).
My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...
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There's a lot of good information in the Patient Handbook that will help you learn more about IC. You'll find the IC diet there --- and you might want to give that a try right now while you're still waiting for a diagnosis. Sometimes just eliminating sodas, coffee, and acid foods will help tremendously.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Colleenco, I know this is so aggravating for you and of course you are upset about it, it changes your life style. I do have to agree with Briza about the water input. For some strange reason water helps some with this situation. Also what you eat can trigger it more. Sometimes it can make you absolutely miserable. You might have to try different medicine to see which one will work for you. I hope soon you will find something so you can get some relief.
Sending hugs, TrishannComment
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