How long does an IC flare last?

thank you !!! its odd though because its not the first time ive had sex since being symptom free so odd how its decided to flare this time. i will drink plenty and d mannose i think! .

Hi Bella it can change from time to time. When I first had these symptoms sex was fine. But as I've gotten older it's more difficult and causes a flare. So I make sure I pee before and after sex. I've had my symptoms for 3 years now. Taken antibiotics maybe 5 times thoughts those years. My urine tests always come back as possible for UTI but not confirmed which is really frustrating. So if I'm in really bad pain I take them and mostly they make me feel better. You need to have a really strict diet. I don't eat anything acidic also look into low histamine diet... Avoid things like dark or milk chocolate white chocolate is OK for me. Tomatoes. Citric fruit. Fizzy drinks. I only drink bottled water. Pepper mint tea of chamomile tea. Pure carrot juice. Alcohol is a massive no.... Sad times. D mannose is good and take a good probiotic for your gut..... I buy mine from amazon.... 6 months worth for £13. Which antibiotics have they given you.

thanks sandy, thats all really helpful advice! They have given me Trimethoprim. I just got myself worried because i sent sample in on tuesday & didn't get antibiotics until Friday. But i have fever and chills since taking them, but i think it is my body fighting it off. It is so annoying! Yes i have found D mannose to be very helpful. Thank you for probiotic advice! 😃

thank you for this! No antibiotics unless needed- i will find out results today then i would like to see a doctor again to get a bit more advice about how to manage these. but yes, i think d mannose may be the way forward again!

thank you for all your advice. Can flaring stop completley in your life? Will it always happen? Or does this depend on the individual? feel upset as since i was labelled with this due to some irritation on bladder and no explanation, i used d mannose and all symptoms went. x

Ah Bella, I can tell how upset you are about this and I totally understand. the trouble is, as you suspect, no-one can say how long this flare will last or if it'll happen again. it might and it might not! As you say, its a very individual disease if indeed it is IC as opposed to isolated inflammation. IC affects everyone differently. It usually comes and goes. I was flare free for 2 years but for the last year, its been there in the background - not horrendous but enough to make its presence felt! ive no idea why! best advice is d-mannose, IC diet, and keep hydrated. (dehydration is the bladder's worst enemy) Drink enough so that you wee every couple of hours. And try to stay positive - after all, it may go tomorrow and not come back! and it still could be a UTI. Don't give up hope - it WILL ease up 😃

Thanks for your kind reply. I appreciate your understanding. 😃 Lab results back... infection 😦. So in a way positive as it is not a flare but also... don't trust doctors dip tests!

😃 Bella x

hi Bella - i learned a long time ago never to trust dipsticks - false negatives are common, false positives not so much. Hope it clears up soon - pleased you got the better option lol! probably worth carrying on with the d-mannose for a bit though to support your bladder through the trauma of an infection. take care!

i will do, thank you very much for your advice!! 😃

bella

Hi Shirley

My symptoms have been pretty the same for the last three years. I have a burning sensation and my vagina area feels irritated. Does this sound like IC to you? All my results for IC come back negative. My urine shows 0-50 puss cells and 0-10 red blood cells. Have you heard of this before?

Hi Sandy, it sounds like you might have a condition called vulvodynia with some bladder inflammation. the most likely cause is low estrogen, so you might want to get your hormone levels checked and if low, try some estrogen vaginal pessaries (vagifem) on prescription. As the lining of the bladder is estrogen receptive, like the uterus is, its often confusing as to whether it's IC or atrophy. best way is to treat for low estrogen and if things improve, then you'll know!

Hi Shirley I've been to the doctor and all my hormone levels have come back normal. I don't think the Dr know themselves. When I'm having the burning pain it's hard for me to sit. So I've brought a round pillow to sit on. In your experience is 0-50 puss cells in urine normal?

0-5 is normal, anything above suggests a urine infection, the higher the number, the more likely it is that there is some infection. This may clear on its own if you drink plenty of water or lemon barley water (not the diet version though) or you may need antibiotics. The burning pain sounds very much like vulvodynia - especially if there's nothing obvious to see on examination. There's lots of info on this condition - you might be able to recognize the symptoms if you read up on it. I suffer from this myself though fortunately its not constant. A good gynaecologist would be able to help as would a good gynae physiotherapist as strangely, the pain in the vagina can have a lot to do with breathing technique!

My urine has always come back 0-50 and I'm now wondering if I have bacteria in my bladder. It's been like this for 4 months out. Probably more. I checked out what you said and all of those symptoms are similar to what u have. The hospital thinks I might have endometriosis but I doubt this. They want to do a op to check but I'm going to push for vulvodynia first.

hi it could be lichen sclerosis