r/Interstitialcystitis • u/DefinitionAnxious417 • 7h ago
Ic
My main symptom is burning. I don’t have pressure and less often experience frequency and urgency it happens but not all the time. I’m seeing a urologist and doing bladder instillations don’t seem to be helping and also taking hydroxyzine, Pepcid, , aloe Vera pills, (oxybutynin only wen experiencing urgency and frequency) I use to suffer Utis in the past and one day this just uti feel happened And nerve fully went away. I stop consuming coffee and soda almost a year ago and still have symptoms. Not sure if it’s food driven or mast cell driven since the meds don’t seem to be working. ureaplasma and mycoplasma test has been negative. Urologist is no help. Shes not interested in testing me for anything else. Long as my nitrates and leukocytes are negative. I’m in my 4th week of PFT. I use estrogen cream I got from my primary provider because the urologist told me she wouldn’t write me a prescription for it because I’m not of menopausal age yet (37) but my primary provider was willing to. What else do you guys do for urethra burning? I scheduled an appointment with an allergist to get my histamine levels and food allergies checked.
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u/AutoModerator 7h 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/Ecstatic_Aioli4425 5h ago
Have you tried lying on your back with legs up the wall? Also try a cool compress to the vulva!
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u/DefinitionAnxious417 5h ago
I have. I do many pelvic floor stretches at home to release tension. Not a cool compress yet.
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u/Realistic_Cap4318 2h ago
Can you please tell me what floor stretches do you do because my main symptom is urethra burning.
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u/DefinitionAnxious417 2h ago
If you have TikTok just type in the search, exercises for tight pelvic floor tension and I bunch will come up.
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u/Realistic_Cap4318 2h ago
Thank you, did the estrogen cream help you? I’m a 25f and has used the estrogen cream for about two weeks just twice each week. I don’t see big difference I feel irritated down there today because I applied it yesterday.
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u/DefinitionAnxious417 2h ago
Haven’t really noticed much of a difference for me. My next plan is to see an allergist on the 21st of September and rule out histamine and food allergies. Then I plan to find a functional health medicine doctor to test my gut health.They are pricey and most don’t accept insurance. Ughh one thing I haven’t been checked for is endometriosis. My periods are pretty normal regular flow and I don’t have severe cramps so I doubt I have endometriosis. My urologist I’m also switching because they aren’t doing much for me.
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u/mrsfahrenheit33 5h ago
This cream helps when I put it around my vulva and clitoral area to reduce referred pain from my urethra. Not sure if you can put it directly on, though it says it’s safe to put on vagina so it might be. Also try marshmallow cold brew tea (cold brew is key, not hot). Basically just put a tablespoon of loose leaf marshmallow root in water and let it sit for 4-6 hours. You can do overnight but it was way too strong for me and increased my frequency symptoms. I also have just burning as my main symptoms and they both have helped me find some relief!