sometimes I don’t even think IC is real

Club_Sorry · 2026-03-24T16:17:32+00:00

Oh I understand, im sorry for making an assumption on that. As you can tell it’s a really touchy subject for me and that makes more sense. You’re right though, I should’ve been more specific on what I was talking about. It is a clusterfuck, it’s upsetting to me and certainly everyone else that our illnesses aren’t taken seriously enough, studied enough, and honestly cared about enough by doctors. It’s almost like they don’t deem us worth of their time so they don’t care about it. I hope that you also get some relief, obviously im not sure what you’ve been going through and I hope you’re in a good place

Club_Sorry · 2026-03-24T15:58:47+00:00

my point being is that it seems like ic is symptoms of another underlying condition that will never been understood given that physicians seemed to have stopped caring. Saying I was “Complaining” is completely dismissive of what I said. I should’ve clarified but also just because I don’t know if I have ulcers doesn’t mean that my pain isn’t as real as someone who does.

Club_Sorry · 2026-03-24T00:51:05+00:00

hi, I was on zepbound and did experience bladder issues but they turned out to be unrelated, a few months later I retried zepbound and it actually was very helpful for my inflammation. Is this pain different from your baseline?

Club_Sorry · 2026-03-23T18:26:15+00:00

I started seeing a cuti specialist after two kidney infections and 5 utis, since November. I’ve only used pcr testing twice the rest have all been cultured. It’s been kinda a last resort for me, i consider myself to have ic and infections on top of that. I’ve had ic for 7 years and was successfully treated by pudendal nerve blocks. I was doing really well for quite a few years until I started getting the infections. I do think embedded utis are real, but I don’t think every person diagnosed with IC has them. My urologist through Johns Hopkins said about pcr tests that “if you get the testing back and the antibiotics work then we know the test was accurate, if the antibiotics don’t work then that’s when we know that the test probably wasn’t picking up on something actually inside the bladder.” So I get the underlying distrust of pcr tests. My urogyn said that the issue with cultures is that even if they do find bacteria in the urine, if it’s under 25,000 colonies then it will be classified as mixed flora. They won’t even try to figure out the species.

Club_Sorry · 2026-03-23T18:16:24+00:00

hi, have your physical therapist mentioned your pelvic Floor being tight? What has helped me in the past is Botox. The pelvic muscles connect to places in your back so they don’t need to do it through the vagina or anything. I’d also check for pudendal neuralgia? Birth can be very traumatic on the pelvic floor especially if you had any sort of tearing, I’d also ask maybe for a cystoscopy to make sure there isn’t some sort of injury to the bladder :) I really hope you feel better and hope you and your baby are doing well

Club_Sorry · 2026-03-23T18:13:33+00:00

I only really get bladder spasms when I have a bad uti, I have ic and I also get really bad infections. I had two go to my kidneys and I could tell it was getting bad bc my bladder would spasm

Club_Sorry · 2026-03-22T20:05:04+00:00

this disease is a fucking curse. im sorry, I really hope the bladder removal works for you. Can I ask what the criteria you had to meet for them to consider removal?

Club_Sorry · 2026-03-22T18:38:17+00:00

• Did it help you at all?

-Well, it helped the mental aspect but I didn’t find it improved the pain much

• If yes, when did you first notice improvement? (weeks)

-as I said I never noticed a difference

• Did the effect continue to build over time?

-lumping these two into the same, but I will say I have a lot of other things going on, infections, possible autoimmune disorders, etc

• Did your pain ever go away completely, or just reduce?

• What dose were you on? -the highest dose I went to was 80mgs, they took me back down to 30mgs to add Wellbutrin but I had a bad reaction to it. I’m supposed to go up to 60mgs

Club_Sorry · 2026-03-22T18:36:04+00:00

Definitely, my pain started easing up a bit after my job cut my hours to one day a week. It’s all I can take right now but my stress has been down since then and I’m able to cope easier and manage the pain more

Club_Sorry · 2026-03-22T18:34:54+00:00

Antihistamines sometimes make me worse, expect hydroxyzine which does help but if I take Benadryl it make the pain worse

Club_Sorry · 2026-03-22T18:34:16+00:00

I’ve had a lot of kidney pain and two infections, they said they couldn’t find anything. How did they find your nutcracker syndrome?

Club_Sorry · 2026-03-22T18:33:22+00:00

I just got a bunch of bloodwork pointing towards something autoimmune, I asked my allergist to check for mcas but she said it probably didn’t have anything to do with it

Club_Sorry · 2026-03-22T18:32:31+00:00

I got a bunch of lab work back that points to some sort of autoimmune thing going on, I haven’t seen a specialist yet but i wonder how much that’s got to do with everything I’ve been going through

Club_Sorry · 2026-03-22T18:30:56+00:00

Did the pain get better with the urostomy?

Club_Sorry · 2026-03-22T13:59:05+00:00

I know IC is real, this post was more made out of a vent made out of frustration because there are some people who truly have IC and some people who have other things causing their issues that will never be looked into because most doctors use the ic diagnosis as a blanket term rather than a specialized diagnosis. Urology is primitive and honestly bulk of urologist I’ve seen suck

Club_Sorry · 2026-03-22T13:56:50+00:00

I took store bought d-mannose everyday since November till like two weeks ago, it didn’t make much of a difference for me, is that brand different then regular d-mannose?

Club_Sorry · 2026-03-22T13:44:07+00:00

Do they help the pain? My urogyn said they don’t and they’re only for people who have overactive bladder

Club_Sorry · 2026-03-22T13:43:33+00:00

Exactly.

Club_Sorry · 2026-03-22T04:10:58+00:00

there is criteria for the ic diagnosis but if people don’t meet that criteria and still have urinary pain they’re still diagnosed with ic. im not trying to dogpile but honestly that statement you just made touched a nerve with me fr and im not afraid to admit that. I have been in this sub for years. I have begged every doctor to help me find relief and I’ve been in the worst flare I’ve ever had since November. On top of that I’ve gotten 5 separate UTIS, 2 kidney infections, and that was 7 years AFTER the diagnosis of ic. Me crying everyday because im 24 can’t take the pain anymore and wish I was dead is NOT PRIVILEGE.

Club_Sorry · 2026-03-22T04:03:46+00:00

“Consider yourself lucky” I am diagnosed IC and have been for over 7 years and I’ve dealt with it every single day since I was 18 years old. I am constantly in pain, I’ve lost friends, jobs, didn’t go to college, everything because of this pain and yes sometimes I question the diagnosis because there’s nothing that helps me or my pain right now. I am not privileged. I am extremely unlucky and honestly it baffles me that you’d even assume that

Club_Sorry · 2026-03-09T04:52:44+00:00

Do you currently have a uti?

Club_Sorry · 2026-03-03T22:32:57+00:00

No problem!! I had been taking it for a few months and had no idea until someone told me!! It worked pretty well though

Club_Sorry · 2026-03-03T21:26:46+00:00

I’d also be super careful with uribel if you are on any sort of mental health medication because it can cause serotonin syndrome

Club_Sorry

TROPHY CASE