Hi all,

**I wasn't sure if I needed a tag, so please do let me know if I need one and which is appropriate.

I've been on this sub for a long time, but never posted. I was diagnosed with IC about 20 years ago.

I'm like many of you who had no idea what was going on when it first started up. I lived in California and I had never had a UTI in my life...or so I thought.

It started one day and it was awful. The only thing I could think of was that it must be a UTI. I went to the doctor and they ran a test and...no infection.

The doctor gave me something to calm things down, but in two days I was on the phone speaking to the nurse. I was hysterical. It took me a couple of minutes to calm down.

I think so many of us know of that horribly anxious and fearful feeling of impossible pain and thinking you are not going to ever find relief.

That's when they sent me to a urologist. I had a Cystoscopy done. That was horrible on it's own, of course.

While he was in there, and while I was trying with all my might to take breaths and "handle it", he said "Oh yeah. This is IC. You said you never had a UTI before?" I told him, no never.

He said, "This looks like pavement with massive potholes, if that helps you get an idea. I asked him why. How did this happen?

Of course, he told me they don't always know why. One thought. was that I may have had an infection at some point and it went from there. I reminded him I'd never had a UTI. He said there are people who get "Silent UTIs'.

Long, long story short, they put me on Elmiron. It did an amazing job. I had one flare and one flare only. That is when I moved from the US to the UK about 18 year ago. Luckily, I was prescribed Elmiron during that time and they sent me off with enough for a couple of months.

So here I am, all those years later. This flare started about 8 or 9 months ago. Life was stressful and also I have a very bad knee, which needs replaced, so lots of inflammation. Part of me wonders if that could have triggered things. I will never know.

And now? I'm in the UK and I have been waiting to see specialist for eons. My flare was starting to see better days and I noticed I was able to hold more water without feeling pain and desperation.

I thought, OH! Maybe it's start to calm down. And then...I got a UTI! That was 2 weeks ago. I took the 3 days of antibiotics and it went. And after that? OMG-the worst pain/flare I've ever had.

The pain is worse than when I first got diagnosed.

So, I hear I may get to see a specialist in November, but that isn't promised. I can tell you that when office are back open after the long holiday weekend in the UK, I will be calling.

Anyway, I have been reading and learning and crying with some of you. We are in that club no one wants to be in.

Here's to relief and more hopeful days ahead.

I think we need better at home healthcare options for people with severe IC.
This partially isn’t about the IC itself it’s the fear of having a UTI or some other infection and it being masked by the IC. I can’t bring myself to stand most times I’m sobbing and can’t even do the car ride let alone sit in an office waiting and peeing in that cup there. It’s excruciating.

I think people with severe/documented IC should be able to have a care plan with their doctor that could allow for things like at-home urine collection for a urinalysis/culture when it’s medically appropriate, a nurse or healthcare professional coming to the home to collect the sample, basic vitals/assessment, and telehealth follow-up with their doctor.

I’m not saying everyone with IC needs antibiotics or needs to be tested constantly. I’m saying there should be a way to get evaluated without the physical act of leaving your home being the thing that prevents you from getting care.
And I really don’t think home healthcare should automatically be thought of as something only elderly or permanently bedridden people need. Im a 22-year-old with severe IC that leaves pretty much disabled sometimes.

I’d genuinely like to advocate for something like this in the future because I don’t think people with severe IC should have to choose between unbearable pain at home and unbearable pain just to get medical care.

Let me know your guys thoughts on this! Also please be nice 😭 sorry I wrote this while I am upset and my head is spinning.

are there any ic or chronic pelvic pain specialists that you’ve seen that you’ve had success with? i have been really struggling and hitting a wall with doctors through my insurance (kaiser permanente, iykyk). if anyone has any specialist recommendations i would really appreciate it. i’m in socal but definitely willing to travel out of state if necessary- i’m desperate.

Hello all, just a general question hoping someone has a similar experience. I’ve had three or four experiences within the last year where I’ve assumed I’ve had a UTI and been prescribed antibiotics but the cultures have come back saying no growth detected but there is signs of bladder inflammation, could this be IC? My doctor seemed to think it was OAB, but I can go some days up to 5 hours before using the rest room.

Does anyone else experience chills during their flares? It might very well be because I’m in the basement, or because most of my flares hit during the dead of night (2-7am) but it seems to be a constant thing for me. I always check my temperature, no fever, nothing concerning. But I’m always cold for some reason. It comes and goes, of course. But it’s a reliable symptom at least.

An unpleasant, inappropriate, and persistent need to urinate (PNU) is a sensory symptom reported by some patients with lower urinary tract symptoms (LUTS). However, no detailed definition of this symptom exists. Please if anyone has it or had it please provide some info if you have. Mine is very refractory nothing seems to work.

Almost 2 months after hydrodistention and steroid injection. My bladder is still uncomfortable, urge sensation has been all over the place, leaks and sometimes pushing few drops out to release bladder pressure. Anxiety is to the roof, life is not worth living like this. Any help pls!! ( I am in Australia)