Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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Kidneys & Bladder
/ Interstitial Cystitis (IC) Support Group

So we can all relate

sarahsarah
sarahsarah
Please share your story here so we can all din some support in each others healing. Start with how it all began how you felt when you wee diagnosed and how you are today. Please it would be rally help dul for me and probably everyone else on here.
deleted_user
deleted_user
I had bladder pain since I could remember. I went to the Urologist as a teen and I described my pain and they told me I didn't have IC.

I suffered for several more years and went back and begged them to test me with the Potassium treated, so they did it and it was positive.

I started the "rescue" treatments three times a week which were hell, did nothing and I would never do it again but I didn't want to change my diet.

It was so overwhelming to even think about all of that. I tried Elmiron and I don't know if it did anything or not but who knows maybe it did.

I buy square heat pack things at Walgreens and would stick them to my lower abdomen. I would take AZO all the time. I would think I had bladder infections but it would be negative.

I will say I have had Urea Plasma twice now. It sounds gross because it's a STI, but the two times I got it I was only with my husband so I am not worried. You have to take a lot of antibiotics but at least that pain went away.

I actually can tell now when I have a bladder infection, Urea Plasma, or if it's a flare up. I have Oxycodone and I take like .05 or something super low when I have really bad flare ups with my IC. It is the only thing that actually works.

I have done baths, I have taken Sodium Bicarbonate pills, the Elmiron, that didn't work. Taking my allergy pills Allegra and using my birth control the Nuva Ring has helped so much I can't even say.

I also found I cannot drink alcohol, caffeine, citric foods, especially juices, and onions are the worst. Eventually I started to learn my triggers and can go months pain free. I am a strong believer in the diet.
isabelle1954
isabelle1954
Bladder infections as a child and chemotherapy in my 30's caused my IC. It started after the chemo and felt like fire down below. 20 years later, the pain is much less. I might need Codeine 8 mg once every 6 months but usually I use baking soda (1 tsp in a glass of water) which cuts down on the frequency and pain. After I had my saline breast implant out, I didn't need to stay on the IC diet, which had helped a lot with the pain and frequency. Hope this helps. Isabelle1954