I Have Interstitial Cystitis

Personal Stories, Advice, and Support 148 People

    slar515 slar515
    26-30, F
    Jan 27, 2015

    A Long Painful Journey Thank You Lord For Keeping Me Sane

    adelagcruz adelagcruz
    Feb 8, 2012

    Starting To Understand!

    I was diagnosed about 6yrs ago. I have three children two under the age of six. When I was pregnant I had no symptoms but they always came back maybe three months after delivery. I was originally on Elmiron for about 3 mos but then it just stopped working. So I started...
    LAM8 LAM8
    41-45, F
    2 Responses Mar 11, 2013

    So i have had IC for a few years now.

    I moved from Melbourne to the country. Today i had a shocking flare up! So bad my bf took me to the emergency room. After waiting 3 hrs they gave me one endone and 3 neurofen... I was majorly ticked off! My dr prescribes me 60 mgs of oxycontin a day for pain and tramadol for...
    Meaowmeaow Meaowmeaow
    22-25, F
    Feb 25, 2014

    Ic I Have It...

    Im only 19 and was told two years ago i have IC. I have went and had two surgeries since then. I have pain during intercourse and wonder every day does this effect my chances of becoming pregnant. No one can answer me. I feel alone and afraid alot and wonder if it will take my...
    taralee taralee
    18-21, F
    4 Responses Feb 11, 2010

    Ic Hope

    The doctors and urologist had no idea what was wrong with me.  I left my third appointment in tears.  The pain was unbearable.  The itch never stopped.  My bathroom trips were about every 20 - 30 minutes.  My non-menstruel cramps tied me up in...
    CherinMaE CherinMaE
    22-25, F
    1 Response Apr 9, 2010

    I'm just absolutely floored on this one.

    I never heard of it before. I went in last Friday for a hysteroscopy (with biopsy) and the doctor at the last minute added a cystoscopy. He "had a hunch" that my bladder needed to be checked as well given the symptoms I have. When I woke up from anesthesia and my hubby got me in...
    deleted deleted
    Aug 20, 2015

    I am 25 years old angst found out a few days ago

    that I have Interstitial Cystitis, my trips to the bathroom are constant day and night, and I'm also so uncomfortable all the time. I can't believe this is happening but I'm trying to be strong about it, any advice would be helpful. I haven't been intimate with my boyfriend...
    Natashaaa25 Natashaaa25
    26-30, F
    Oct 5, 2015

    Help! Symptoms Information??

    Hello! I was recently told by my urologist that all of my symptoms sound like IC. However I'm still a little confused by the diagnosis. I had a partial hysto. in September of '08 (uterus & cervix) b/c of bad pelvic pain. All was good until about December, and it seems as...
    aebook aebook
    3 Responses Feb 23, 2009

    Going Through Grief With Ic

    I am 48 and have had IC for 2 years, starting with a bladder infection. I tried a very strict IC diet, natural suppliments, and PT but was still having symptoms of burning, tenderness and feeling like I had to go all the time. I finally found a good urologist who had...
    Missychris Missychris
    3 Responses Oct 22, 2012

    I like to think that

    while you're talking to/hanging out with me youll never be bored
    Roddenybaz Roddenybaz
    26-30, M
    Jul 19, 2014

    IC Misdiagnosed As Endo....

    I have suffered from chronic vaginal,rectal and tailbone pain for 4 years now. After numerous attempts by numerous doctors with medications without success, I had a laparoscopy which showed endometriosis,adenomyosis and cervical dysplasia. After a LEEP for the dysplasia I was put...
    luke23 luke23
    2 Responses Jun 30, 2009

    How I Cured My Ibs And Ic

    Hey all, I had very intense digestive and bladder pain for 6 years. I thought there was no hope for me. I would need to lay down for about 3 hours every day and it would feel excruciating. I would cry all of the time. It felt like hell and I was willing to do anything to solve...
    taysic taysic
    26-30, F
    1 Response Jan 8, 2013

    I haven't been diagnosed

    but it's something the doctors are placing on the back burner for a possibility. So, I guess I'll start at the beginning... In February of this year, I became sexually active. We also use a toy because I haven't really been able to enjoy it without some sort of extra...
    deleted deleted
    1 Response Aug 24, 2015

    Getting Tired Of Feeling Sorry For Myself

    I got diagnosed with IC 7 months ago, but I have been struggling with the symptoms for about 11 years. It effects every aspect of my life from friendships, to work, to school, to my relationship, to my weight, and my happiness. I have severe pain at least once a day and I...
    SydneyJj SydneyJj
    Mar 31, 2011

    Dealing With Ic

    I have IC and have had it long before I knew there was a name for it or what it was. I always thought I was the only one who suffered from this until a few weeks ago when I met 1 woman online who has it. I found out that not too many people talk about it and not alot even...
    ic9365 ic9365
    41-45, F
    1 Response Dec 29, 2008

    Post Menopausal Ic, Also Have Atrophic Uro Vaginal Tissue. Began In 2006.

    Hi,  I just got over a long flare (too long) which I think I made worse myself by totally freaking out about it.  I thought I was done with the whole thing and then I got another UTI this summer and it was all downhill after that. All I take for my IC/atrophy condition is...
    irishdaughter111 irishdaughter111
    Jan 12, 2011

    i would really like for some advice on IC.

    i was recently diagnosed with IC after years of going to my family doctor saying i was just getting chronic UTI's. after a while i knew there had to be something wrong. so i finally switch doctors and he referred me to a urologist (who was named one of the best in south Jersey...
    nickybonbon1104 nickybonbon1104
    26-30, F
    Mar 17, 2015

    My Life With Ic

    I used to think I was crazy…I used to think this pain I feel everyday was normal and that I was making a big deal out of nothing. Hi, I’m 21 years old and I was just diagnosed with Interstitial Cystitis. Looking at the blank walls of the doctor’s office and flipping...
    Alllyyy Alllyyy
    Jul 16, 2011

    Pain Relief Without Drugs?

    I had an internal exam way back in 2002 i believe. They filled my bladder with some liquid and I was diagnosed with it. Usually my pain is during my period, but I went a few years without experiencing anything at all. It seems to be acting up again and all I can take for it is...
    pixelghost pixelghost
    26-30, F
    May 24, 2012

    My Story

    I have been having symptoms since 2004.  I did not know what was wrong.  I kept going to doctor but with no result.   In October 2010 I develop an urinary tract infection that would not go away. After being treated with antibiotic several times my urologist decide to give my...
    patterson10 patterson10
    1 Response Apr 13, 2011

    I had been struggling with UTI pains

    but no UTI for about a year. It got to the point where I had doctors thinking it was a mental instead of physical problem. I had people tell me that there was nothing wrong with me. Well after a horrible flair up where I literally passed out from the pain of peeing I looked up...
    irishchild777 irishchild777
    22-25, F
    1 Response Jul 7, 2014

    Nervous about starting PT

    Went to a PT yesterday for severe coccyx pain and had a total internal and external exam with an IC "diagnosis", (PTs can't really diagnose. Have had endometrisis in the past, also diverticulitis, 2 laminectomies (lumbar) and a fusion at L5/S1. Always have had pain with...
    DailyPain DailyPain
    41-45, F
    1 Response Apr 24, 2012

    Who Knew It Could Be So Painful!

    Hello, my name is amanda. I am 27 and have been diagnosed with IC for 5 years now. When I first found out I had it was right after my hysterextomy in 2006 when I was 23 yrs old. Since then, I've tried everything including a "miracle drug" that ur supposed to take for like 5 years...
    aroy83 aroy83
    26-30, F
    Sep 1, 2011

    Living And Surviving

    I was diagnosed with interstitial cystisis at age fifteen following a series of urinary tract infections. The condition brought on depression and for a long time i was angry at the doctors who misdiagnosed me and fed me useless information. However everything changed when i saw a...
    sarah956 sarah956
    Oct 14, 2012

    Why doesn't anyone listen :( I've been

    suffering with this for years, no one seems to be able to help I've had it 3 times since February and I'm in agony! Doctors keep passing it off as a regular uti, but I sit on the toilet for hours to get relief! I can't leave the house, I can't work, I have to cancel days out...
    lilah300 lilah300
    18-21, F
    2 Responses Aug 28, 2014

    Just Found Out...

    I am 26 years old and never even heard of I.C and I have been dealing with so much pain for about a year and a half. I was spending two or three nights a week sitting in the emergency room because I was hurting so bad. My love life was not doing so good due to all the pain I had...
    painfreeplz painfreeplz
    26-30, F
    2 Responses Jul 19, 2009


    Two years and 7 doctors later from primary physician (gave pain meds and several referrals to: Gynecologist (gave me antibiotics...found no UTI), Urologist (found nothing after surgery) Incontinence center physician (made diagnosis of severe IC after 2nd surgery), 2 Chesapeake...
    monkey1956 monkey1956
    Aug 28, 2012

    I Hope My Story Helps!

    Hi everyone, I hope my story helps.Unfortunately, IC is a new found condition and most doctors will be really ignorant about it and even ignore us if the screens and tests come out negative for infections or bladder/kidney abnormalities. It took me 5 years to find a urologist who...
    annamori annamori
    Nov 23, 2011

    More Than A Conqueror!

    I know we all know how it generally starts, lower abdominal pain, urinating urgency, etc. Well that's exactly what I went through this month. Tuesday, I was diagnosed after visiting the doctor 3 times. Now I understand that there is no cure for this disease, but I'm determined to...
    Wearelight Wearelight
    1 Response Jan 31, 2013

    I Thought It Was A Bladder Infection At First

    It all started with a bladder infection. Historically, I didn't get those very often, so I figured one round of antibiotics, and I'd be good. I finished the first round, and three days later I started having frequency and pain again. I went back to the doctor, and got another...
    deleted deleted
    1 Response Jun 13, 2012

    My Story - It Does Get Better

    I was diagnosed with IC 12 years ago when I was only 17.  As with many of you my symptoms started out with high frequency and pain in both the bladder and stomach.  In my particular situation things weren't gradual.. things went from normal to the worst pain I've ever felt...
    LisaS01 LisaS01
    1 Response May 2, 2012

    Interstitial Cystitis

    I was diagnosed with interstitial cystitis for about 2 years, I still dont quite understand what the disease does to your body? I have to use the bathroom almost every 30 minutes and Im in servere pain in my bladder and pelvic area where it radiates...They ran so many cat scans...
    Autymn Autymn
    1 Response Dec 23, 2011

    When Will It End?

    I'm losing heart. I was diagnosed with IC in 2002, after 6 years of going in and out of hospital with 'query kidney stones.' I've had several bladder distentions under general anaethetic, during which my heart and blood pressure soared as the bladder was filled; post-operative...
    magoosy magoosy
    46-50, F
    7 Responses Sep 1, 2009

    I put up with Interstitial Cystitis

    for years. I would go to urologist, they scoped me, could tell it was inflamed but could do nothing for me. There is a cure, but the life you must lead will be one you won't want to do. First, no soda pop, especially one with caffeine, and also no coffee or tea. No caffeine...
    gotfedup gotfedup
    66-70, F
    1 Response Dec 5, 2013


    I have I.C. After years of pain, pressure, frequency, waking in the middle of the night 4-5 times to go to the bathroom and numerous "bladder infections". A diagnosis of I.C. Seems to be the light at the end of a very long tunnel. I've said for a long time my bladder wakes me up...
    Suavemom Suavemom
    41-45, F
    3 Responses May 10, 2013

    YOU Can Win Against Ic!!!

    I spent three years looking for a diagnosis. I have been bed-ridden 3 times in my life for 6 to 8 months at a time. The third time around, I found real answers! When you are tired enough of the pain, the "I don't knows", and the symptoms I would be glad to offer...
    AsktheMasters AsktheMasters
    36-40, F
    2 Responses Sep 29, 2009

    Hi everyone, I was recently diagnosed with IC

    after about 10 years of chronic pain and urinary symptoms. I'd really like to connect with people having the same problem. It's been a very hard, very lonely road. And I also don't want anyone else to feel alone either, so please talk to me if you want to.
    queenleia queenleia
    26-30, F
    3 Responses Oct 20, 2015

    17 Yr Old With Ic

    I was diagnosed 8 months ago with Interstitial Cystitis, Endometriosis, Vulvodynia, and Pelvic Floor Dysfunction. So being a senior in high school hasn't been a walk in the park. I'm actually hardly ever able to attend school due to weekly visits to my doctor and unbearable pain...
    Xobaileyk0 Xobaileyk0
    1 Response Oct 16, 2012

    I Want To Quit

    I have had this crippling bladder pain since I was five years old. The doctors saw nothing wrong with my tests and my parents thought I was faking it to stay home from school. -fast forward to now, 24 yrs old- I can honestly say I wake up every morning in pain and go to sleep...
    Heyarnoldd Heyarnoldd
    1 Response Feb 22, 2013

    Can Someone Tell Me What's Wrong With Me?

    Truth be told, I haven't been diagnosed with IC yet. However, like so many of you I have been through many a test: numerous urinalyses, blood tests, ultrasounds, etc. They all came out normal and no one has a clue what is wrong with me. Since October, I've been experiencing...
    LiesAreEntertainment LiesAreEntertainment
    1 Response Dec 13, 2012
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