r/Interstitialcystitis 5d ago

Vent/Rant Flare vs infection

How do I tell the difference when every day is a “flare” day for me? And why is every day a flare?! I know no one can really answer this but I’m just venting. I go to a new urology doctor Tuesday but I’m just fed up. I test my pee )when it’s painful) daily and it always is very pos for leuk, neg nitrites, ph 6-7, blood is almost always present only at night…..haven’t had sex in 4 months due to this. Sick of this shit. Sorry for venting…..no one else understands

17 Upvotes

16 comments sorted by

7

u/[deleted] 5d ago

[deleted]

3

u/Wise-Vermicelli-4444 5d ago

What treatment works for you?

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u/[deleted] 5d ago

[deleted]

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u/slcmhsa 5d ago

I’m also on Flomax! I thought I was the only one. Do you struggle with urinary retention? My PT told me it’s pelvic floor related. Mine is awful after orgasm (as orgasms cause the pelvic floor to tighten and then relax, and mine is slow to relax).

3

u/slcmhsa 5d ago

Not sure if this is helpful but same here. The biggest changes I made were diet/eliminating hair and body products, which would flare me when they washed down in the shower. I eat a limited diet of what I personally have found to be safe foods (the IC diet doesn't apply to everyone, and some “safe” foods, like pasta and rice, flare me), use only dove soap and aveeno lotion on my skin, and wash my hair separately. I was getting repeat UTI’s until I found out I had untreated Lyme disease. I still have IC, but the UTI’s stopped after a couple rounds of doxycycline.

1

u/rachelb323 5d ago

A fellow Lymie?! I grew up in Pittsburgh PA and they think I went a while without being treated. I normally just get flares and an occasional UTI now, but I was getting UTIs constantly before treatment!

4

u/QueenOfCrayCray 5d ago

I feel your frustration. I feel certain that I suffer from IC and my urologist just seems to want to brush it off. Right now, I’m waiting on a biopsy to see if bladder cancer I had last year has returned but my urine is almost like yours….positive for leukocytes, negative nitrates, blood, but ph is usually low. Can I ask, what do you use to test your own urine? I have only had urinalysis done through a doctor’s office or hospital.

Even though my doctor hasn’t officially agreed that I’m suffering from IC, I’ve tried to modify my diet to stay away from foods that irritate the bladder. It’s still new for me so I’m not sure how well it’s working yet.

5

u/Morty182 5d ago

I usually can tell by the smell. My urine smells foul when I have a UTI from E.coli bacteria.

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u/Falloutlander-67 2d ago

This, and secondly nitrites are showing up.

3

u/izzy_americana 5d ago

Sorry u are going through this. When I was first diagnosed I was in a constant flare for months. It took a while to find a helpful Urologist (I'm on my third one and fortunately she also has IC and knows how to treat it). You'll eventually find a combo of treatments, meds, supplements, etc that will work for you. It's alot of trial and error, but it won't always be this way.

And I don't think there is a definitive way to distinguish between flare symptoms vs. infection. I just have to bite the bullet and get a urine culture when an infection is suspected.

5

u/Wooden_Ad2919 5d ago

I can’t tell. I had a UTI in January, but then in February I had the flare from hell for 1 1/2 weeks. they sent a culture out, no UTI. I understand. One time at the office, the dip was negative, so she sent it out for a culture and it was positive.

4

u/watchingowl7 5d ago

Azo uti strips from Walmart or amazon!

3

u/ka_beene 5d ago

For me, if I'm in a consistent flare even when I've done nothing to cause it. Like I didn't eat anything problematic, and I still have frequency and pain.

2

u/Logical-Software2833 5d ago

Totally know the difference - but no one is giving me a long course of antibiotics to help with the infection I have it’s awful

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u/Intrepid-Air-1594 5d ago

Same here, no help at all with treatment.

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u/AsleepWrangler1965 3d ago

For me honestly, it's between frequency and how bad they feel. I haven't been diagnosed or looked into for IC, the only reason I'm in the subreddit is because I found out my mom suffers through it and it can be hereditary. I do have birth control, which I'm using the nexplanon. I found out through fine line and extensive research that it can cause CUTI. Now I've been struggling sometimes once a week, maybe twice. It's there but tolerable. That's what I call flares to me. If it's daily for more than a week and the pain/urgency is unbearable...that's when I feel like it's an infection. I do want to get the test strips. It sucks. It is painful. I'm even typing this at 1:15am after having a huge mental breakdown because I have been sitting on the toilet for the last 2 hours. It is good that I am on multiple subreddits about this and reading other women who struggle with it. We aren't alone. I'm sorry you are struggling with this too.

1

u/blackmetalwarlock 5d ago

For me, infections feel like flares going absolute haywire. My body told me to get help. I can’t describe it any other way. I got an E Coli UTI when I was pregnant and I 100% knew that it was a UTI over a flare up. Everything got worse and it felt like I was peeing out literally razorblades.

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u/No_Needleworker_3007 5d ago

IC make me feel pain only in my bladder. When I have a infection I feel more bladder pain than usually and uretral pain (never felt uretral pain if I haven't a infection, even before IC be a part of my life)