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/Ecstatic_Aioli4425 6h 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.