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Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps??
Hi there,
I started taking ketoconazole a few weeks ago and it has helped significantly. It might be worth trying. It starts to help me with a few hours of taking it. (it might take a few days when when you first start taking it) I don't take antacids with it because they interfere with the absorption of the drug, but I don't need to take antacids when I am on the ketoconazole, because the burning and pain dissappear. Also, I don't have as much urgency when I am on ketoconazole, I can run and jump and no leakage. I don't know how long I can handle being on this drug due it's liver toxicity, it makes me feel different, hurts my liver, and I am nervous of it.
Seems that fungal infections deserve a bit more attention from medical professionals. Wish I could find someone who has experience treating patients for fungal problems.
things that seem to help me: *Uribiotic (it's acidic so I take it with eCal) *eCal (whenever I eat a "bad" food) note: I have started taking magnesium along with the calcium (1 part magnesium to 3 parts calcium) and also zinc in a trace mineral supplement. I hope this will help balance out the calcium supplementation. If anyone has any experience with this please let me know. *ultimate lectin defense, *natur leaf
things that worsened my condition: *aloe vera whole plant, *CystoProtek,B Vitamins
other things that I have taken: *femflora probiotics seem to be Ok, please be careful with probioitics -since large amounts of probiotics seem to cause bladder problem/irritation.*Vestriol, *Cabbage celery juice in the vitamix
*Avoid Fruit and Acids
- used to take 100 or 200 mg. ketoconazole about once a week
-used to take Peppermint and Oregano oil
Other health problems: menstrual migrane, allergies, and arthritis (arthritis is sopratic and somewhat helped by grapefruit pectin and very small doses of pregnenalone - 5 mg or less).
I like to drink nettle tea.
Hi - what were the symptoms of the yeast? was there a culture done? If you have chronic yeast and you have to stop drugs, I would say a naturopath would know how to deal with it with diet and less toxic supplements. I want to get a PCR (i think that is what it is called) yeast test. My naturopath told me a lot of people who think they have yeast, don't (I'm not talking about obvious vaginal yeast infections)as they just don't test positive with this very sensitive test. Whenever I have urine cultural done they test for yeast in the urine and it is negative. I never hear about anyone saying they have yeast in their urine.
I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.
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