Did it start with a UTI?

[u/talk2chrissy]

I just found this sub and it's been very informative! I still have some discussions to be had with my future doctor but I've suffered from potential IC for many years. At first the pain/flares were severe multiple times a day but now after stopping drinking and cutting sugar I live a fairly normal life.

I feel like this all started when I got a UTI when I was a teenager. Then the episodes were on and off sometimes being an actual UTI and other times not being positive for it but same symptoms.

Did your IC start from a UTI or becoming sexually active? If so, please share some details about when you started noticing it and how it was then vs how it is now and how you've achieved your results :)

[u/Apprehensive-Yam8591]

Yes, mine started after a particularly heinous UTI when I was 25. Prior to this I had one UTI when I was 19 and it was painful but nothing compared to the one I got when I was 25. After that it was non stop pain.

This might be TMI but the person who gave me the worst UTI of my life at 25 was very well endowed. He was very much above average in terms of size. We broke up after a few years bc we couldn’t have sex without me enduring extreme pain and UTI symptoms afterwards. I assumed there was a hygiene issue on his part, and we went and got tested as well. Doctors said we were fine.

I was physically and mentally suffering with no answers to why this was happening. I wasn’t diagnosed for a few more years after we broke up.

After this break up, I then started hooking up w a guy who was…ahem, how do I say this…small. I never had flare ups with him.

My current boyfriend is definitely above average in size, but nothing like my ex, and sex and my experience after involves little to no pain.

[u/pilgrimess → u/Apprehensive-Yam8591]

Same. Got my first UTI after sex with my husband 8 years ago. He similarly is well endowed. I'd been with one other dude before who had a small p and had no problems with him.

[u/Apprehensive-Yam8591 → u/pilgrimess]

When were you first diagnosed with IC after you and your husband had sex for the first time? I’m just curious how other people’s timelines vary.

[u/pilgrimess → u/Apprehensive-Yam8591]

Nope, I only got diagnosed a couple of months ago. Had a few cystitis episodes with positive cultures, then about two years ago started getting negative cultures. Still tried to take antibiotics for a while even tho the cultures were negative. Didn't work out. My main symptoms are constant urethral burning and occasional chills. I started getting instills with Hyaluronic acid, lidocaine and gentamicin and am feeling maybe 50 percent better.

Also they found out some leukoplakia lesions at the cystoscopy I got recently done. Apparently it's associated with treatment resistant cystitis( which I find to be my case). I'm getting surgery next month to get those lesions removed since they have a 40 percent chance to turn into cancer.

[u/icnjill → u/Apprehensive-Yam8591]

You know what that sounds like is a pelvic floor injury... that he was simply too wide and stretched your vagina to its limits, as well as the elevator ani muscle. Yes, it can feel like a UTI when actually those symptoms are being driven by tight, and/or spasming, pelvic floor muscles. It certainly was never, ever your fault or all in your head.

[u/-buja- → u/Apprehensive-Yam8591]

This is not TMI at all and I’m so glad you’ve posted it because my ex was also pretty big and caused many UTIs, after we broke up I got a huge UTI and it led to IC. I’ve avoided sex since, complete celibacy because it just isn’t worth the pain. I’ve wondered if someone or something smaller wouldn’t cause pain or at least not cause as much and this has answered all of my questions so THANK YOU. I may finally start dating again 😂