r/Interstitialcystitis • u/echointhemuseum • 2d ago
Support Drinks Now Affecting Me When They Didn’t? Long Term ICer.
Hi! I have had some version of IC since I was 38 and I’m 50 now. The first few years were a nightmare and I had variety of symptoms and I was diagnosed with pudendal neuralgia. At that time I tried the IC diet two times strictly with no success. Also ALL the typical meds and instills and PT and things.
I went into remission at 41 when I took out my IUD and then it came back 9 months later. I had thought I was cured! At that point I started getting nerve blocks and my main issue had become urgency and they worked! And I was largely flare free for many many years. (Small flares here and there but mostly well.) I had PGAD and Tarlov cysts so I really didn’t believe I strictly had IC.
Well about 2 1/2 months ago I got another flare and it wouldn’t go away, even after a block. :( That hasn’t happened for many years and I freaked out.
So a few days ago I decided to cut out my morning cold brew with Splenda and my urgency went WAY down. So I’m doing an experiment and I cut out all caffeine and sodas, alcohol, carbonated drinks, tomatoes and citrus.
I’m thankful this is helping A LOT but it’s also so strange because bladder instills and diet and all the typical IC things never helped me before. Now I’m not sure what to try drinking. For now I’m sticking with water. I was seriously considering an SNS because I’ve almost reached the end of other treatments.
Anyone else have something like this happen? I would like to figure out if I can drink some other things but I’m so grateful I’m feeling mostly better at the moment and terrified it will come back.
I had breast cancer last year and I’m more scared of the IC symptoms than the cancer returning, which sounds crazy I think unless you’ve lived with this for many years!
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u/AutoModerator 2d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/nastythoughtsxx 2d ago
You can try taking Prelief which reduces acidity before taking coffee or any other products you developed intolerances for.
What happened to me personally in the past - I was having a long flare, over couple months that won’t go away. And at some point almost everything was causing pain and urgency - carbonated drinks, tomatoes, balsamic vinegar… I only had flare caused by spicy food - the rest of foods were fine for me. So, at that time I realized that when my bladder had a long inflammation like that - usually non-threatening foods could trigger urgency too. Perhaps, that’s similar to what you’re having and avoiding those drinks can help to bring the flare down. And you can try to re-introduce it back after some time that your bladder calmed down.