Interstitial cystitis

[oceanhotel.livejournal.com]

Anyone have this? I am positive that I have this. If you have it, how did you get better? I am scared that I won't get better and will have it for the rest of my life. I am only 22 :(

Comments

[slinkslowdown.livejournal.com]

I was diagnosed about a year ago after some really bad UTIs, but I'm not entirely convinced that the diagnosis was correct. :/

I haven't had any symptoms since, although the UTIs I do get are really stubborn.

Can someone chime in on this? Can I have IC with really rarely occurring symptoms?

[lilsongbird.livejournal.com]

Yes, especially when it first starts. I had so many doses of antibiotic before they diagnosed me

[cupcakeromance.livejournal.com]

I do! I was 19 when I found out. I have periods of flares and no flares. Took elmiron for years but didn't need it other years. Watch your diet (i.e.: practice IC diet)! There is also a wonderful IC community on livejournal and some good information on the internet (http://www.ic-network.com/). It gets better! Hang in there!

[inside.livejournal.com]

I am in the same boat as you! :( I have had what I think is a UTI for the last 6 weeks - been on three different courses of prescribed antibiotics and it just keeps coming back as soon as I'm done the medication! Symptoms have not gotten worse, I am just in constant discomfort. I drink water like a crazy person, as I'm a singer, and I went through several weeks of taking cranberry pills/juice daily. I am wondering also if this is a sign of a more chronic condition, ie. IC. I definitely plan to head back to the doctor in the next day or two for another round of tests. Has anyone else had a UTI that has lasted this long and what exactly did you do to cure it, or was this a sign of a chronic condition?

Sorry if I'm hijacking your post! I was about to make my own topic but saw that you had a similar thing going on here..

[lilsongbird.livejournal.com]

For me it was the first sign of IC. I got more frequent and longer lasting "bladder infections". I was in agony. After a doctor thought to actually do a urine culture vs just "yeah sounds like an infection" they figured out I had no infection, but trace blood in my urine. Stuff worsened by then to the point I ended up at the er because the inflammation was so bad I couldn't pee at all. I was put on a rush appointment to a urologist who diagnosed me

[archangelbeth]

You've just posted this twice, as a recommendation for two rather different situations, with a link to a .biz site -- if you don't have research that you can cite, from an at least halfway reputable source (Yahoo Answers and the like need not apply; if they said the sky was blue, you should look out the window and check), I call spam shenanigans on this.

[rabbitfacts.livejournal.com]

I've had what I think is IC for about 8 years or more. I thought it was possibly linked to my anxiety but who knows. I haven't really found out what it was until recently, but I used to suffer from frequent urination constantly and only ever had a couple of UTIs show up in my life. I had a bladder scan which came back fine and also a kidney scan, also fine. So I'm pretty sure it probably is this. I don't see any improvement since I've had it but then I haven't tried anything like diet, and recently I just had a baby so my pelvic floor is awful!

Maybe you can find some relief though, I hope so. As someone else said I read some info on this site - its quite good. http://www.ic-network.com/

[mercyoverthrown.livejournal.com]

I do. I was recently given a prescription for Elmiron, but have yet to take it. I haven't started it yet because my regular (as in not the urologist) doctor gave me the antihistamine Hydroxyzine for unexplained hives just before I filled the Elmiron rx. To my surprise and excitement the Hydroxyzine completely cured all of the IC symptoms, from frequent urination to the stinging, full feeling in my bladder. Score for allergies and my bladder! Dr. Google tells me that it is sometimes used for IC. However, Elmiron is the typical standard treatment.

[oceanhotel.livejournal.com]

wow! i hope to be that lucky. i am so glad that worked for you. it is a terrible, life changing disease.

[james72.livejournal.com]

I've had some success with taking Aloe Vera capsules and marshmallow. Apparently it helps rebuild your bladder lining. Or something. I know that's not very scientific. It took me a couple of weeks of one aloe vera cap a day, and 3 cups of Marshmallow Tea (made with two marshmallow capsules) a day but I definitely noticed everything calmed down.

[jillirific.livejournal.com]

my heart breaks for you.

i was somewhat diagnosed with IC in 2009 (i was 21; after several rounds of antibiotics, my doctor determined i probably had IC but i was way, way too afraid to get it checked out further...) after a particularly brutal UTI and i fell into a deep depression for over a year because of it. my sex life suffered as sex was a huge trigger for my symptoms and i feared a flare up. IC and the anxiety i got from it completely ruled my life for a couple of years. so i feel for you, i really do :( i wept for a long time, thinking about how i would never be the same and remembering what it was like to be "normal" in that way. just thinking about that time is upsetting to me...i want to hug you!

i can say from my experience and from my friend's experience (she has it as well) - it should get better over time. i'm beginning to think i don't have it at all anymore/maybe never did because i haven't been experiencing any symptoms for months and months (i've even lost track, that's how long it's been). i very seldom experience the discomfort i used to, but i have been on anxiety/depression medication for a year now which i think may have helped.

looking back, i do wish i had sought out more help/treatment for it. it probably would've saved me a lot of emotional turmoil. there are definitely treatments out there that can make everything easier and more comfortable, but they must be sought out. i wish you all the best!! there's a community on lj called i_cystitis which i read through a lot...i found it helped knowing you are not alone and reading other people's stories and treatment successes!

[oceanhotel.livejournal.com]

what anxiety/depression medication are you taking now? how long did it take to work and what were your symptoms?

[jillirific.livejournal.com]

i started taking venlafaxine (37.5mg, then bumped to 75mg) - now i take pristiq (desvenlafaxine; 50mg and now 100mg)

my symptoms were a full bladder feeling, needing to go but little to nothing coming out, random sharp stabbing pains in my bladder, the bladder just feeling 'tight'...i had read that anxiety can worsen/cause the symptoms (being tense, thus tensing everything up - also why sex irritated my symptoms as an orgasm would tighten everything up) so i think the medication has helped me not be so tense all the time.

i can't pinpoint when my symptoms relieved, but it was probably a few months when i started noticing that my flare ups weren't as common as they had been. i would go quite a while with nothing and then maybe have a week or two where my bladder had that full feeling with no relief...now i might have a few days where i notice my bladder doesn't feel 'right' and i still get the shooting pains if i bend down too quickly sometimes, but i feel as though i'm living a normal life again.

i do still have intense anxiety over the thought of getting another UTI as i fear it will make everything worse again :( i hope you find something that can help you. i bought a bunch of the OTC pills for UTIs that dull the pain (AZO i think is the brand), and i know that's something that many IC sufferers use when their symptoms flare up, but i never ended up taking any...though it does calm me down knowing i have them just in case. they also sell test strips which ease my mind when i think a flare up might be an infection.

good luck with everything!!

[oceanhotel.livejournal.com]

thank you for your detailed replies. did you notice that certain foods you ate or your menstrual cycle changed or worsened your symptoms? do you think the antidepressant is what made it get better over time? and one last question, (lol) what does your friend do to help her ic?

[jillirific.livejournal.com]

foods, the only thing i found (and still find) to irritate is caffeine, particularly coffee/espresso based drinks (not so much canned iced tea like brisk/nestea, which i do love to drink!). i'm a student so it sucks that i have to choose between likely discomfort and coffee to get through those early morning classes. but i know many people are different with their triggers!

i can't say for sure about the menstrual cycle, but sometimes it does flare up when i get bad cramps from my period (again, probably the tightening of muscles down there)

i'm hoping it's the antidepressants that are helping and it's not just a random lessening of symptoms...i want to know that i'm able to control these things and that i've just found a good treatment for me!

as for my friend, she's had IC for much, much longer than me and she's the one who told me it gets better over time as you learn to cope. i think she's just been able to pinpoint her triggers (i'm not sure what they are, we haven't spoken about IC for a while) and she seems to just deal with it. she takes a long time to pee (feels like she has to go, tries, takes a while for it all to come out/not a lot comes out) but that seems to be the worst of it for her now, as she doesn't complain about pain or discomfort.

i hope i've been at least a little bit of help for you. feel free to ask anything if you have any more questions and i'll do my best to answer :) i feel like i know what you're going through and it's really awful. xo