Interstitial cystitis- what was your first symptoms?

I have interstitial cystitis and it is very frustrating. One reason I think it is important we can access in home UTI tests. I've had 2 UTI's that I didn't know I had b/c of IC. But I'm over 65 and have very little estrogen which makes matters even worse. We have in home Covid tests, diabetes sugar tests and monitors, why can't we have in home UTI tests? That would save so much frustration, Dr visits and urine tests. Plus, to verify a severe UTI the results take 24 hours. I developed sepsis b/c I did not know I had a UTI during a recent Covid infection. The symptoms masked each other and I ended up in the ED. I feel your pain. This area of research is terribly underfunded.

I have no IC but do have recurrent UTIs. There are sufficient home test for UTI that will show if you are positive. Drug stores have good enough ones to tell YOU something but no idea why a clinic would not see something also. Seeing your doctor is good idea but at this point you could be in trouble with Sepsis. I got it when one UTI had no symptoms and I got so ill and delirious that if my friend had not shoved me in the car and took me to the ER I'd have been dead in two days, so the doctors there told me. Stayed 9 days, plus IV Rx another six days at home. Took six months to recover fully and still, at 79, do not have the energy I did before. Do not take no for an answer if your body says it's ill, stay till they take a blood test of several functions. Your doctor can send a lab order to the lab you choose, or ER, and get it done ASAP. I am pleading to you not to let this go, act today/tonight. Someone is always on call and the ER will take you and check again if your symptoms are even a little worse. Let us keep updated, ok?

I am so very sorry you are in such pain, with no diagnosis. Sometimes, a microwave heating pad between my legs would relieve my symptoms for a short while..

My symptoms started with one UTI after another & I was prescribed different types of antibiotics- some of them were not the right ones for the particular bacteria.

After 7 months of this, my urologist put me on methenamine & D-Mannose to help my bladder lining heal. It took another few months for that to happen and I was on that regimen for 3 years.

Since that time, we've cut the Methenamine down to only a quarter strength per day & the D-Mannose to one capsule per day. Since July 2019, I've been symptom free.

One caveat though. Methenamine can be hard on the kidneys, so if your doctor prescribes it, make sure they are checking your kidneys regularly through blood testing. That was the reason for the decrease in my regimen. My kidney function dropped into stage 3a CKD. After two years of decreased daily Methenamine, my kidney function is back up to 70 (with plenty of daily water intake).

A urologist can also check inside your bladder to look for evidence of IC in your bladder lining.

Best to you! I hope you can find relief from the horrible pain that IC causes.

I thought I had IC too for several months because of severe bladder pain but I had no UTI. I began to see blood in my urine and when I had a CT , and then a cystoscopy, I was diagnosed with bladder cancer. I have since had a radical cystectomy with ileal conduit. The lesson here is to get an official diagnosis for IC and not just assume that is what is like I did.

You can order urine test strips on Amazon. They check the same urine parameters as the lab, with exceptions of culture and sensitivity. If the WBC is high, leukocyte esterase is high , protein is high, pH low, there is a good chance you have an infection and should go to a medical professional for help. Test strips also check for blood in the urine, another important sign of underlying infection.

Thanks! I ordered test strips from Amazon. Huge help!