I was diagnosed with IC when I was 25. I am now 40. In the last year, I have been having increasing bladder/urethral urgency. It feels like my urethra is irritated and that is where I feel the pressure. I had a hydro last month which did not help but in fact made it worse. This was 6 weeks ago. I do not have infection according to my doctor. I feel like I have to pee all the time. When I do go, afterwards I feel an uncomfortable burning and an even more intense urge to go. Does anyone out there have this? Have you found anything that helps other than diet, Prelief, and alkaline water? I am so miserable.
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Have you tried Azo? Sometimes when I get the feeling I have to go right after I went, Azo helps for a while. It actually helps more than any pain med for that particular feeling.Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevated -
My experience with Azo is that it irritates my urethra more. I took UTA (blue pill) after the hydro but had a reaction of facial flushing with it. I have been hesitant to take it again but I'm about to pushed to do it anyway. Thanks for your reply!Comment
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Sometimes when I get that way I will drink two big glasses of water to flush out my bladder. Sometimes I'll put 1/2tsp of baking soda in the glass. That usually calms it down for me.Cindi
Gelnique for frequency/urgency - works great
Macrobid after sex
Prilosec, continuous birth control pills
synthroid .088mg, mucinex-d, restasis
Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil
Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.
IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
Great treatment flowchart on page 19 of the pdfComment
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If you can't do the baking soda, try tums to cut down on your acidity. How has your IC been during the years you have had it. Many flares? What is your main symptom? Sorry to ask so many questions I am just interested in knowing how it is with people that have had it for a while. I was diagnosed 3 years ago. What is your treatment regimen if you don't mind me asking?
I hope you are able to get the burning under control. There are several of the meds that turn your urine blue,maybe a different one with a different make up of meds and fillers might work better for you. I would talk to the pharmacist and see if they can find one that is slightly different.
SandraLink to the patient information, everything from What is IC? to Disability
http://www.ic-network.com/patientlinks.html
American Urological Association Clinical Guideline
Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
http://www.auanet.org/content/guidel...ent_ic-bps.pdfComment
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Urethral burning has always been my worst symptom over the course of having IC for the past 23 years. I sleep with ice packs at night. It's the only way I can fall asleep most nights. The burning is worse after sex, and with, and after, a UTI. It is always the last symptom to calm down.
The Cystoscopy with Hydro made me miserable for weeks afterwards. I thought I'd never be able to get back to the minimal burning again.
And catheters (sp?) are just as bad for setting me on fire. I will never let anyone put one in again.
My regimen of meds for IC are:
50 mgs. of Atarax at bedtime
15 mgs of Enablex at bedtime
50 mgs. of Tofranil at bedtime and 25 mgs. in the mornings
Urelle up to 4 times per day
Estrace Cream --- 2 grams, 3 nights per week
Supplements:
Calcium
Magnesium
Glucosamine
Chondroitin
MSM
Fish oil
I do use baking soda in water as needed. I used to have to take it almost every day.
I make sure that I completely empty my bladder each time I void. When I think I'm done, I relax to a count of twenty, do a Kegal, and then try to void again. I almost always go a little bit more.
Drink lots of water to keep your urine from getting too concentrated and acidic.
Stick closely to the IC diet when you're in a bad flare.
Don't wear tight jeans or anything else constricting when you're in a flare.
I pray that you get some relief soon. I hate it when a flare takes over your life. It is so miserable, and you never know when it's going to end. (((hugs)))Comment
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If you can't do the baking soda, try tums to cut down on your acidity. How has your IC been during the years you have had it. Many flares? What is your main symptom? Sorry to ask so many questions I am just interested in knowing how it is with people that have had it for a while. I was diagnosed 3 years ago. What is your treatment regimen if you don't mind me asking?
I hope you are able to get the burning under control. There are several of the meds that turn your urine blue,maybe a different one with a different make up of meds and fillers might work better for you. I would talk to the pharmacist and see if they can find one that is slightly different.
SandraComment
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Urethral burning has always been my worst symptom over the course of having IC for the past 23 years. I sleep with ice packs at night. It's the only way I can fall asleep most nights. The burning is worse after sex, and with, and after, a UTI. It is always the last symptom to calm down.
The Cystoscopy with Hydro made me miserable for weeks afterwards. I thought I'd never be able to get back to the minimal burning again.
And catheters (sp?) are just as bad for setting me on fire. I will never let anyone put one in again.
My regimen of meds for IC are:
50 mgs. of Atarax at bedtime
15 mgs of Enablex at bedtime
50 mgs. of Tofranil at bedtime and 25 mgs. in the mornings
Urelle up to 4 times per day
Estrace Cream --- 2 grams, 3 nights per week
Supplements:
Calcium
Magnesium
Glucosamine
Chondroitin
MSM
Fish oil
I do use baking soda in water as needed. I used to have to take it almost every day.
I make sure that I completely empty my bladder each time I void. When I think I'm done, I relax to a count of twenty, do a Kegal, and then try to void again. I almost always go a little bit more.
Drink lots of water to keep your urine from getting too concentrated and acidic.
Stick closely to the IC diet when you're in a bad flare.
Don't wear tight jeans or anything else constricting when you're in a flare.
I pray that you get some relief soon. I hate it when a flare takes over your life. It is so miserable, and you never know when it's going to end. (((hugs)))Comment
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