Everyone please Share how your IC started

[Vicki]

I thought we might all share how our IC started and what our personal thoughts are as to the cause of IC! I started with lots of bladder infections after I went on the Loestrin birth control pill. The docs kept saying I had endo and I did have a mild case. It was mainly pelvic pain. I was too stupid to think that possibly it was my bladder and not my female parts. I guess I don't know my anatomy. Then I took a Lupron shot to help with the pain and bloating. Within a week I was in the ER with severe bladder symtoms and no infection. They called in a urologist who set me up for some tests and diagnosed me with IC. I got married when I was 21 and that was when I started on the Loestrin(low-dose estrogen/high progesterone) birth control pills. I was diagnosed at 28. -Vicki

[ICNDonna]

I think I probably had IC hiding for several years before I had an abdominal hysterectomy, which I feel actually triggered the symptoms.

Donna

[kelly McC]

I started as a young as 5 with frequency and urgency. and burning. I was a sick or as mom and dad said a sickly child colds ,infections, allergies and Uti's.
My pain came some 20 years later. Constant abdominal pain and bloating. Painful urination and painful periods. 10 years ago I had embilical hernia I had it surgically repaired and my nightmare began. Whirlwind of events. 1 year later I had a 6 ml kidney stone had lipotripsy to break it up. That was successful but my pain and frequency increased to new heights.
I quickly became a different person. I felt some what embarrassed of my symptoms since the countless doctors I saw seemed to generally agree I was somehow faking my symptoms. Had that been true I do believe I should have won a emmy ! I felt alone and very distant from my normal life. I stopped life all together sort of my stance for getting to the bottom of my symptoms.
Good thing my brain was indeed in tact and not as the Doctors were saying all in my head. My good ole head kept telling me there's no way this pain is not real. I knew this had to be something more than in my head.
I saw 5 urologist, 2 gyn's, 3 pain specialist, 2 physical therapists, and 2 primary Md's several nurse practioners and 17 ER visits .I started to become ashamed of my health care providers.How could they refuse to help me why would they dismiss my concerns for depression . I often thought would they go on feeling like me for just one day! My dear hubby had been successfully getting treatment for back pain for 10 years why couldn't I get even a doctor to take me serious. One night in my woes I googled my symptoms and found the ICN. The rest is history. I read books the handbook got all the 411 on IC I could find. I was able to find a great doctor who not only knew what I had but he cared and actually treated other patients. I thought I struck gold. This time tears of JOY... I had a diagnose and finally began a treatment plan that took time to get right combo. But today I have far more better days and am again living life . I am guessing either hernia or stone triggered my symptoms
Kelly

[Trishann]

WOW that is a good question. I really don't know when it all started, I had it for so long.

It could have been from holding my urine to long
It could have been from my second childbirth
It could have been from hurting for so long and no one could figure out what the problem was.

I have many could have been but really don't know what trigger the whole thing.

[vm]

My IC symptoms started 1 month after my second c-section. They hit out of nowhere - one day I was fine, the next I was in discomfort and was just SURE I had a UTI. Nope - no infection, it was this obscure (or so I thought) disease called IC.

I think I had some underlying predisposition to IC and the abdominal surgery set it off.

[evanseri]

I had bladder problems (pain) as a little girl and only my mother believed that I was not making it up. Finally I got a hydrodistention and then my symptoms went into remmsion for years. Then in college I began winding up at the health center every couple of weeks for what I thouhgt were bladder infections. With each doctors appointment I was given antibiotics but told that they could not find any bacteria in my bladder. Year after year no one could tell me what was wrong with me, until finally a PA at my urologist suggested that it was IC. They did several studies and finally gave me a diagnosis. I was relieved to finally know what was wrong with me. I don't know if I did anything to bring it on (for instance taking birth control pills) or what, but it has been a long road of ups and downs that continues this day.
Eirn

[VickiB]

I don't remember how old I was, maybe 12. I suddenly found myself peeing broken glass and in a kind of pain I'd never imagined. My mother, certain it was an infection, had me drinking glass after glass of lemonade which she said would cure it. It didn't. My parents didn't bother the doctor until all else had failed and I spent many sleepless nights in misery. Finally, they took me in, I received a shot of penicillin, and soon felt fine. I've always had the feeling this early bladder trauma set the stage for my IC.

Through Jr high & High School the UTIs continued, but antibiotics would clear them. Around 18, the antibiotics seemed to quit working. I saw doctor after doctor, some believed I was hurting but were perplexed, some thought I was a hypochondriac, some probably labeled me a drug seeker, but none could help. I eventually learned the symptoms would ease all on their own after a month or so and quit wasting my money on doctors.

Off & on over the years I would have especially nasty episodes and would try different doctors hoping things had changed. Lots of disappointment. Finally, following months of pain & peeing fire, I went in to my GP and demanded he set me up with someone who could either fix this or cut the dang thing out! I was done with my bladder ruining my life! He told me he had just been reading about this thing called IC, and knew this Uro I should meet,......... I was finally diagnosed at age 48.

Vicki

[dg2901]

My symptoms started in Feb 2003. I went to bed feeilng just dandy only to wake up the next morning thinking I had a bad UTI. This happened completely out of the blue as I'd never had any previous bladder problems.

take care
diana

[Silverfox]

I also remember having bladder frequency and burning as a very young child.
My teachers complained to my parents and I tried to solve it by limiting fluids and feeling thirsty all day. I was also very sickly and subsceptible to upper respiratory infections, ear infections, feeling cold and with low energy compared to others my age. I even was aware that I had very poor co-ordination of my hands and feet. All of my symptoms worsened very slowly, and I kept from complaining as my parents expected us to just endure. My Mother was very sickly, depressed, very tired all the time. I just felt it was my duty to not complain and make problems.

After I was married, I had several bladder infections, but the bladder frequency worsened. I had urethral dialations, which helped my bladder symptoms. My other symptoms continued to worsen throughout my body. I went through three pregnancies and during those I was improved. Soon After the birth of my third child, my symptoms were severe and I went to many urologists and gyns for help. Some were at a famous clinic. There I was diagnosed with "a mental fixation on my bladder" and was given drugs and treatment to not ever talk or think about my bladder, and theytold my family that It was mental problem. At this place, they also told me I would need to come back and have my bladder removed one day.(???) I searched from home for clues to the cause. I tried hydrodistension, silver nitrate, hysterectomy, chlorpactin, DMSO. I felt so sick. I called my parents and they told me there was no history of bladder problems, or any other diseases in our family that I could have inherited. My two sisters denied having bladder symptoms. I traveled to Europe and saw a well-known urologist and learned that I did not have IC.(???) I was tested for Lupus and MS throughly, and that was ruled out. I was so sick and desperate for help. I would to call up universities bladder cancer Docs. or anyone who would talk to me. One top cancer Dr. sent me to California to try experimental drug Elmiron....nothing helped, and I turned to prayer.

Then I received a call from my Aunt who learned that I was very sick, and my parents told her I needed to be put in a mental hospital.
My Aunt phoned me telling me that she thought I had the "family disease". As a young girl she was diagnosed treated for low thyroid disease. She told me my Grandmother had the same disease, with many of the same symptoms.
She also explained that she told my father that she saw the disease in my Mother and two sisters, and screamed for him to get them some help. He lied and never told me about trying to get Mother help. I learned that she was very sick and also had bladder frequency. My two sisters finally addmitted that they also suffered with bladder frequency, and they said they were very scared. My husband was furious!!!

Hey, I went straight to my family Dr. and he exclaimed "I knew I would solve the mystery one day". He tested both my husband and I, and our blood tests showed, that it was my husband who had the low thyroid. Our Dr. said thyroid was safer than bladder surgery, so we both started on Armour thyroid and I began my slow recovery. I have now been diagnosed by some IC Drs. with peripheral neuropathy due to low thyroid (nerve damage throughout my body). Just last week My IC Dr. told me to share it with others on the internet, so that we can change medicine, and he told me I could not get treated at the medical school. Hey, this Dr. even looked at all my internet sites....hey, I do share my story with others, but few believe me. My Dr. told me I was right, and also he will be attending the IC conference in Bethsethsda, Maryland, near the end of October. Some of the best information I have found written on this thyroid neuropathy is from a Vet Prof Kyle Braund who teaches neurology at Auburn University School of Veterinary medicine. He says neuropathy due to hypothyroidism occurs in dogs more often than is present in literature. I still suffer with painful neuropathies, nerve recovery is very slow and correct treatment is important. Dr. Braund says he has found those he treated early results in the best recovery.
My older sister has recovered and symptom free for many years. My little sister will not listen to me and is becoming more severe. My Mother is now in a nursing home, and receives poor to little treatment. I pray that the answers to IC are found and someday no more will have to suffer. Sincerely Silverfox

[mary124]

I think my started with all my bladder infections when I was about 18, just moved to the Houston area from California. (and at first they were true infections-- after awhile they weren't). For awhile after that, I stopped having infections, then between my c-section, and other minor surgeries I think this is how I actually got IC. Who really knows?

[ICLori]

Mine started after I had a bladder infection that was complicated by kidney stones. One week, the infection was there (they did a culture, it was a real UTI) and after ten days of antibiotics and after the stone passing, the symptoms were still there, even though the bacteria were gone. So it went from being a UTI, to being IC.

I'm not really sure what causes IC...I think the anti-proliferative factor they discovered probably plays some role in most cases of IC.

I think IC may be many different diseases all lumped under one label. Some could be caused by Lyme disease or some other undetected bacteria. Some could be caused by MS or another autoimmune disease process. Some could be caused by some type of trauma, and a genetic predisposition to having a bladder that doesn't handle trauma very well. Some could be due to pelvic floor dysfunction or nerve entrapment. And there are probably other potential causes of IC type symptoms, that I just can't think of right now.
So I think it's possible that what causes IC for one person, may not cause it for another person.

I do hope there will be a great remedy or even a cure for us all soon.

Blessings,
Lori

[Imustpee]

I really don't know..I was only a little girl of 6 when my symptoms started...

[sami4a]

When in my 20's my Gyno said I had a touchy bladder. This meant I peed a little more than others, but nothing really significant. I had a few bladder infections in my 30's, but they cleared up with no significance.
Two years ago I got occular shingles which is caused by Herpes Zoster the Chickenpox virus. I had Chickenpox as a kid and your immunity wears off as you get older, and the virus lives in the nerve trunk of the spine. In my case it was a head and facial nerve. After the virus cleared up with medications, I started having nocturia, frequency, urethral burning and stinging.
I think the Shingles did systemic nerve damage, and a lot of the symptoms I have seem to be nerve pain, the stinging, burning and so on.
I was diagnosed with the Potassium Test in July of this year and am on Elmiron three times a day, Elavil as needed (helps a lot), and have Detrol which I havent taken.
So, my theory is IC starts with trauma: repeated infections, surgery, back injury, Shingles, allergies,menopause or hormone blips, what ever, does damage to nerves which then get caught in a perpetual pain and inflammation cycle.
Sammie

[Imustpee]

Hi Sammi....."A touchy bladder"? That's a good one! Hahahahhaa... Sounds like something the Navy dr's would have told my parents back in the 60's......I wonder if that is in the medical books? Hahahhahaha Interesting thoughts there on your IC theory...I was so young when my sypmtoms started...the only thing that it could be for me is allergies....I got a ton of them....cats, nickel, hay, any farm critter, straw, grass, wheat, dairy, eggs,.....good thing I don't live on a farm, huh? Have a great day!

[jjt001]

The first time I noticed anything weird with my bladder (other than the fact that both my sister and I do seem to have to go a little more often than others!) was when I was drinking a lot of water when dieting. After I was used to 64+ oz. per day, if I slowed down on my water consumption I'd start to get an irritable bladder. I thought everyone felt that way, but when I mentioned it to my sister-in-law she had no idea what I was talking about! I thought that was kind of odd, but just kept drinking my water if I felt uncomfortable at all.

I did have one true UTI (when vacationing in Australia, no less -- I think it started with the long plane ride and limited restroom access), but didn't notice anything after that other than what I noted above. It went away easily with antibiotics.

When I was pregnant I thought I had a UTI because I had those irritable bladder feelings, but didn't take the antibiotic they gave me since the test results were negative. For the next 2 1/2 years I kept having more "irritable bladder" episodes and handled them with first, drinking lots of water, then the OTC meds (Uristate, AZO, Cystex). I even tried that old antibiotic that I'd never taken, and felt better for a few days. Then, whammy, it was back. Finally, about six months ago, I realized I was having symptoms almost all the time, that I was going constantly and that the pain was getting REALLY bad. My husband finally said "This is not normal!" He was right. I went to my PCP and she immediately suggested IC. Unfortunately, she was right!

So, no, I don't know how it starts. I wonder if I had some susceptibility from the beginning and the UTI, pregnancy and c-section exacerbated it? Who knows... I do also have endometriosis and fibroids, but neither my Uro nor my Gyno think they're involved with my bladder problems.

Interesting thread, thanks for starting it!