https://oceanhotel.livejournal.com/ ([identity profile] oceanhotel.livejournal.com) wrote in [community profile] vaginapagina2011-12-26 12:47 am
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Interstitial cystitis

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 :(
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[identity profile] jillirific.livejournal.com 2012-01-01 04:28 am (UTC)(link)
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!

[identity profile] oceanhotel.livejournal.com 2012-01-02 08:30 pm (UTC)(link)
what anxiety/depression medication are you taking now? how long did it take to work and what were your symptoms?

[identity profile] jillirific.livejournal.com 2012-01-02 09:22 pm (UTC)(link)
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!!

[identity profile] oceanhotel.livejournal.com 2012-01-02 10:00 pm (UTC)(link)
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?

[identity profile] jillirific.livejournal.com 2012-01-02 11:14 pm (UTC)(link)
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
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