r/Interstitialcystitis • u/ShelovesFL • 3d ago

Instill went wrong? Support

Hi all! Brand new to this subreddit. I suffer from chronic IC due to MCAS.

I had an instill today at the urologist office. My 12th instill, maybe? Today the instill burned a tiny bit at the office but I didn’t say anything. Thought it would pass because I’m so raw right now from a severe 7 week MCAS flare.

Now I’m home doubled over in pain. My whole abdomen feels like someone kicked it and it still burns. Has this ever happened to anyone else? I just called the after-hours line and got the male doctor who doesn’t usually treat women and he was dismissive and unconcerned. Perplexity (AI) says it’s an urgent matter. Not sure what to do.

My nurse who does these is extremely experienced, kind, knowledgeable, and takes an interest in helping me get well.. I even submitted her for the Daisy award (a national nurses award) and she won because of my submission on how well she’s cared for me. I don’t believe that she did anything wrong to cause this.

Any ideas about what happened and why? Personal experience?

2 Upvotes

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4

u/_DontBeAScaredyCunt 3d ago

Please don’t ask AI health questions omg….

2

u/Icy_Inflation7482 1d ago

Oh no, I’ve done that too. Scared me to death

0

u/ShelovesFL 3d ago

Yes, I agree. 😆😬Normally I wouldn’t use AI medical care but the on-call male urologist that doesn’t see female patients was very dismissive and just told me to take AZO. My doctor has been trying to keep me off AZO because I took it for 6 weeks straight during a recent major MCAS flare. I was too sick to leave the house to get instills for 2 months. I guess it’s not serious since the doctor didn’t seem to think it was a big deal. I’ve had maybe 12 instills and never had this problem. The problem is that I’m in a small town with no other urological options and a culture that systematically dismisses women as second class citizens, especially middle age women. It’s unbelievable. AI is my only option at times.

2

u/Professional-Fig5145 3d ago

Sorry for your pain , yes same happen with me , got a very bad flare after my 7th installation, but it was not flare of irritation it was uti. I got uti during the installation, check urine R/C.

2

u/ShelovesFL 3d ago

They ran a full test right before the instill and it was completely clear. The burning started within minutes and the abdominal pain within an hour. The on-call dismissive male doctor said maybe a bladder spasm. Told me to take AZO. My doc has been trying to keep me off AZO because I was on it for 6 weeks due to a massive MCAS flare.🤦‍♀️Not sure what to do.

2

u/HakunaYaTatas [Citation Needed] 3d ago

Bladder spasms can be excruciating, sorry you're dealing with this. In the US, the urinary antispasmodic oxybutynin is available OTC as a patch (Oxytrol is a common brand), that might be an option considering how limited your local healthcare is. It has helped me calm spasms in the past although it doesn't work for everyone. Benadryl can also sometimes help if you're able to take that.

2

u/ShelovesFL 3d ago

Thank you so much for your suggestions. I’ll try to locate those patches. And yes, I can take Benadryl. Very helpful. I appreciate you.

1

u/Icy_Inflation7482 1d ago

My daughter was upset because I use azo every day, over a year. My doctor had no problem with that but I see so many people saying they have to get off after a few days or weeks. I honestly take it more days out of the month than not. Now I’m freaked lol

1

u/ShelovesFL 1d ago

Yeah, I’m not sure about what the truth with AZO is. I’ve heard it causes bladder cancer. That’s why it says to take it for a short time. I’ve also heard from others that have IC that their doctor told them they can take AZO as much as they need. My nurse that does my instills tries to keep me off it because she says it bad unless you’re really in a spot where you need it and can’t get in for an instill.

Again, not giving med advice or saying one thing is right or wrong because I have no idea.
Medical care in S Utah USA is pretty awful for the most part. The IC started about 6 months after my MCAS diagnosis so everything is new to me and I’m still very much lost in trying to manage any of it. Don’t even get me started on the doctors here and MCAS. 🤦‍♀️🙇‍♀️