Everyone please Share how your IC started [Archive] - ICN - Interstitial cystitis information & support

kelly McC

10-02-2006, 04:42 PM

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 . :woohoo: I am guessing either hernia or stone triggered my symptoms
Kelly

Trishann

10-02-2006, 04:58 PM

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.

10-02-2006, 05:07 PM

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

10-02-2006, 05:58 PM

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

10-02-2006, 08:09 PM

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

10-02-2006, 08:21 PM

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

10-02-2006, 08:52 PM

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.:pray: Sincerely Silverfox:cat:

mary124

10-03-2006, 04:15 AM

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

10-03-2006, 05:19 AM

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

10-03-2006, 05:38 AM

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

sami4a

10-03-2006, 06:07 AM

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

10-03-2006, 06:22 AM

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

10-03-2006, 09:24 AM

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!

waterflow

10-03-2006, 11:21 AM

Mine started out not much of anything really. I had a feeling of just tiny tiny cramps which I thought had to do with the ovaries and such. After having a medical procedure done that is when the pain and the peeing started. Right after it was done and got worse within hours. didn't need to do the medical procedure but I had no idea it was the bladder. Sometimes still think it could be the ovaries and such but tests say nope. Wish I could go back and not have it done. Never had a bladder problem before. Have no clue too as why it happened. Wish they would find out what causes this. Would make things so much easier I think.

Sarojini

10-03-2006, 11:30 AM

I was about 8 or 9 years old, and I started noticing I had to pee ALL of the time, so my IC started with frequency. I started having to go during school a lot, during church, during car trips especially, and even between runs down the mountain when we went skiing. My parents laughed at me at first, but then took me to the doc, who checked for a UTI.... of course, there wasn't, and he just said my bladder was small and needed to catch up with the rest of me.

I then had symptoms off and on for years; sometimes it would last months, sometimes a few days, and then I'd go back into what I now know is remission.

Then, at 19, I had a major kidney infection that caused me to become septic, and I was hospitalized with it. After that, it seemed the incidents came more severely, lasted longer, and there was less "remission time." No one could explain this frequency, so I just tried to deal.

Finally, at age 29, I had my first flare that included severe pain -- I was finally diagnosed then. Since then, I have become a pain patient with a tiny bladder, and I wonder -- if someone had suspected IC when I was a kid, would I be this bad today?

SharonA

10-03-2006, 12:18 PM

In Feb. 2000, my father died suddenly of acute leukemia. That left my mother alone. Since I lived in TN and she in AZ, I asked her to come here to live. She said "NO". Since she was unable to care for herself, I had to put her in an assisted living home, there. She did fine until she had a stroke. She then had to go to the hospital. She was there for several weeks. When she was released, she could no longer live in the assisted living situation. Therefore, I had to arrange for a nursing home. Like I said above, we lived a long distance away from her and I had to make all the arrangements over the phone and it had to be done quickly. Well, the stress was unbearable. I noticed that I had some pain in my bladder and was running to the bathroom every 5 minutes in between phone calls. This lasted all day and into the night. I called my doctor the next day and went in to see him so I could have my urine checked for UTI. Nothing there. The nurse suggested that I call a uro. I did so and found out the pain was from IC. I was scheduled for a C/H and was officially diagnosed in August 2001. To this day, stress is my #1 trigger.

BTW...my mother passed on Dec. 10, 2001.

jah

10-03-2006, 12:20 PM

I was sitting at work this past April and thought--ick--I have a bladder infection. I have a history of bladder infections, so I knew what it felt like. Well, of course the pain never went away, and to this day I still have it. My urine culture always shows no infection. I think that IC IS an infection that is not detected and has mutated from a lot of antibiotics. My cystoscopy showed nothing. Of course IC can come from many sources I think...we are all a little different.

ABliske

10-03-2006, 01:08 PM

My case is similar to Diana's. I don't know what could have caused it. I woke up one morning thinking I had a UTI.
I did have a gynocologist say I had bacterical vaginitis. After I finished the antibioltics, I wasn't any better. After months and many doctors I was diagnosed with IC.
I think it possibly could have been stress, but doesn't everyone go through a lot of stress at times?

GGOMEZ

10-03-2006, 04:16 PM

I hope you ladies don't mind hearing from a man. I have been reading your stories and they have been very helpful. I started having frequent urination problems about 10 years ago. I was still working, as police officer, and I thought it was just that I drank a lot of coffee. During a visit with my primary care doctor, I told him about it. He said that since I was approaching the big 50 he felt it was a prostate problem. After a quick exam he confirmed that my prostate was somewhat enlarged. He started me on a pill that he said would help. I was told that it would be several months for it to start working. When I noticed no change, after several months, he put me on another pill. This went on for several months. Finally after I retired I noticed that even though my life had slowed down a little my condition had not changed. By now I had been diagnosed with Fibromyalgia and IBS. I was really beginning to struggle. This past January I was visiting my son in Michigan and I found that I couldn't go anymore just taking the pills my family doctor had given me. I talked to a younger family doctor in Michigan and he quickly referred me to a urologist. The uro dr. gave me a very thorough exam and told me there was nothing wrong with my prostate. He believe that I had IC. Of course I had no idea what he was talking about. He wanted to run some tests on me to confirm but I had to come home to San Antonio. I made an appointment with a female uro before leaving Michigan. She gave me a real good exam also and agreed that I had something wrong with my bladder. She put me in the hospital and performed a test and did a biopsy and then told me I had IC. She quickly started me on IC treatment 2 times a week and put me on oral medication as well. I am doing much better now although I am currently having a flare-up. I started IC treatments again this week and I am already noticing a change. For the longest time I thought it was all in mind. I still struggle with the burning pain, the bloating and the groin pain. It feels good just knowing what I have even though there is no cure. I can deal with life better now. I'm not out of the woods yet but I am determine to keep working on it. Reading your stories has been real helpful just knowing that there are a lot of people struggling with the same condition I have. My best to all of you and thank you again for your stories.

GGomez

:smile tee

Imustpee

10-03-2006, 04:21 PM

G, welcome to the boards...:welcome: :hi:

GGOMEZ

10-03-2006, 04:32 PM

Thanks Lesa. I am really glad I found this site.

GGomez
:smile tee

SharonA

10-03-2006, 04:39 PM

:welcome: We are glad, also. Thank you for your service.

Imustpee

10-03-2006, 04:39 PM

This board is awesome!! I have been here a little over 2 years..I wish it would have been around 30 years ago...I thought I was insane for years...the dr's said nothing was wrong with me except I wanted more attention or my bladder was small...grrrrrrr...I suffered a long long time..I was diagnosed in 1976 but the only treatemnt was DMSO...It did nothing but BURN!! So I waited until 1994 to see another dr who also did DMSO...BURN,,,, waited until 2004 to see another uro, whom I love dearly.....he understands IC and LISTENS to me......I hope you have success with your treatments....I had my bladder removed in Dec...it was so very very bad after no treatments for almost 40 years....I have an internal pouch and I LOVE IT!!! As a matter of fact I am going back to college tomorrow to train as a medical assistant, hopefully in urology!

Briza

10-03-2006, 05:36 PM

Out of the blue on the way to a primitive deer hunting camp in Mexico. Started having frequency, burning, urgency on a dirt road to the camp and made a stop every 15 mins to pee behind a prickly pear cactus bush in 30 degree weather, surrrounded by only men. Fun, huh? Previous 2 years suffered from PTSD due to very high impact car crash, poor health and self-care, anxiety and depression. Prior to this, had suffered from chronic yeast and bacterial vaginosis for 15 yrs or so, but no history of UTIs. I belive these things may have made me susceptible to or triggered IC. Who knows...

IWin

10-03-2006, 06:04 PM

I'm one of the ones who has had frequency since I was little. I have a vague memory of having a UTI when I was about 7. My mom had kidney stones and always seemed to be peeing a lot.....from drinking a lot of water to keep from forming stones??? When I was pretty little, I thought maybe I just had to pee often because I went when I had the chance, but ususally I felt like I had to go pretty bad. I got teased a lot, so I really did try and hold it as long as I could.

By middle school I had to go between every class,and sometimes HAD to go during class. When I was about 18 I took No Doz and the frequency/urgency was awful. I couldn't even get out of the bathroom before I'd have to run back to the toilet.....must have gone about 10 times in 2 hours! When I was about 20 I was told it was in my head, from BC pills, from sex....

Suffered from frequency, sometimes over 20 times a day. And sometimes had urgency. When I was about 45 and the urgency was unbearable, I finally got very insistant that something was wrong. I also have a tenderness in my bladder along with lots of pressure. I have IC and PFD. Diet is my biggest trigger for the IC. Riding in a car and stress are real bad....not sure if flares the IC or the PFD. I also have raynaulds.

Was it an eary infection? Was it the same thing as my mother had? Something in my diet (caffeine???) that damaged my bladder? I was born this way? Something autoimmune (perhaps the raynaulds is tied in somehow)? Trying to hold it too long? Not holding it long enough? Not drinking enough so I wouldn't have to go? Who knows???

Interesting to hear everyones story.

kuntrygurl78

10-04-2006, 12:16 AM

My symptoms just came out of the blue this past December. It was the week before xmas. I went to the doctor thinking I had a UTI. She gave me antibiotics. A week later, I went back and it wasnt better. She ran another culuture. This was on Wed. On Friday night/Saturday morning around 2am, I was in so much pain, I called the emergency room. They had my PCP call me at home. She told me that my cultures had come back negative. She told me right there and then that she thought I had IC and told me that she would like to call in some Elmiron. I told her I didnt want to be put on any meds till we knew for sure what was going on.

She scheduled me an apt with a Uro. We tried some "gotta go" meds. They did nothing. On March 24, I had a cysto/hydro (wide awake no pain meds!!! still very angry about this!!). He confirmed that I had IC.

I think my IC may have been caused by frequent yeast infections. I had been having problems with them for a few years. As a kid, I was a bed wetter till I was in 5th grade. I found out during my cysto/hydro that I have a small bladder. (not surprised!) I think my yeast problems may have played a roll in my IC. Hard to tell tho!

L. Thomas

10-04-2006, 04:46 PM

I had surgery for multiple pelvic repair. Never had a problem at all of any kind except for all the prolapse. I will always think it was caused when a nurse at the hospital inserted a cathater into my vagina :cussing: (after 4 hr vaginal surgery) instead of the urethra!

I could not void :bonk: after the cathater was removed the next day and the same nurse insisted it was "just the urge" and my bladder overexteded. Next thing I know I have frequency and urge incon. :loco:

My urogyn says he thinks that IC caused by baldder trauma. Sure seems that way to me!! Now you don't have it,:) now you do.:confused:

sami4a

10-05-2006, 04:44 PM

Welcome to the boards. Just wanted to tell you that their is a great IC doctor who has written and lectured a lot for IC in Jackson, Michigan called Dr. Matt Rosenberg.
Sammie

StephanieS

10-05-2006, 05:27 PM

It all started when I was around 8 years old. I was always showing a plus 4 protein in my urine and a high amount of lutes. My Mother was an RN so at first she did take me to several specialists after confering with our quack family doctor. I always had this extreme pain in my right side and still do to this day. Finally the uro thought I had pilo nafritis(not spelled correctly). After that was kind of ruled out and it was leaning more towards me not wanting to go to school and it was in my head. I remember going to my principal and begging him to ask my mom to take me to another dr.. I failed a grade from being sick and finally left my abusive home at 15 and headed to the Saulte to bus tables and start a new life. Lied about my age, rented a room, and worked.
Next when I was 17 I laid in a hot tub after working all day from a pain in my side. I would just refill the hot water because it was drilled in to me that it was in my head so I laid there for 36 hours. Finally one of my roomates called her parents and they took me to emerg. My appendix were rupturing and I had an abcess the size of a grapefruit on my intestines. I thought this was the end of evrything so after 6 weeks of recovery and many attempts at working too early I married some fool because I was scared I would be alone and not be able to eat. I was fairly okay for 4 yaers. I then divorced him...c'mon I was 17!lol! I came back to the maritimes and began my many UTI's and many antibiotics but kept getting the right side pain. Finally an ER doc noticed that no bacteria was showing even though antibiotics would help initially. And when I say noticed it was 10 years later....it gets better....So I get referred to a uro but he is so busy he does the stretching and the cysto and a voiding cysto and says nothing wrong. I go to another uro 2 years later and he does the same but feels I have IC. He syas that not all patients present the same. I think he is my knight in shining armour because he has a name for it and I'm not crazy but he doesn't believe in pain meds so I have months of him making me feel like a heroine addict. He sends me for DMSOx6 and I go through hell but the 5th and 6th I feel better...so its worth it right? One month later and guess whats beck? The pain in right side, the frequency, urgency, and I am soooooo cranky and tired. Now I am going to see my GP and ask for a new uro while my husband is getting fed up with having a sickly wife and my kids say I sleep all the time but I do work 75 hrs a week...HMMM maybe thats why I am tired but kids don't understand. So here I am in limbo waiting for another referral.

This is way too long for you guys to read but it felt really good so thanks and I hope everyone finds some relief.

sami4a

10-05-2006, 05:55 PM

Gee Stephanie you sure deserve a break! I sure hope you find a doc that is familiar with IC and get the treatment and pain pills you need.
Hugs,
Sammie

StephanieS

10-05-2006, 06:00 PM

Thanks Sami sometimes you just need to vent and its been a long day. Thanks for reading and replying and maybe one day I can cheer you up.:smile tee

DoulaSue

10-21-2006, 01:25 AM

As far back as I can remember, I've always been a frequent pee-er. I have two or three memories of being really little and telling my mom that it hurt to pee, or that I had that "funny feeling down there" again. Throughout high school, it was the joke between all my friends that I constantly had to "go", and to make sure there was a bathroom around. I'm constantly in the bathroom, if I go to a lecture or conference, I'm the one that has to get up three times during the talk to go to the bathroom. I always thought I just had a very small/sensitive bladder.

Two years ago, I had severe pain/pressure/frequency, and peed alot of blood, the toilet looked like it was filled with blood. I called my Dr. who prescribed over the phone Macrobid for a UTI (it was over Christmas, their office was closed). The Macrobid seemed to work, blood went away, but I remember being "tender" for several weeks after. I attributed that to it just being a really severe infection. I never went for a follow up culture, and now don't believe it was a UTI, I think it may have been an IC flare up.

4 weeks ago, the same thing happened, peed pure blood, pain, frequency, it seemed to come out of nowhere (although my husband and I were intimate the night before). I thought "wow, I have such a bad UTI that I'm peeing blood". Throughout the day my symptoms got worse, it really hurt to pee, and I almost couldn't take the pain. I called my Dr. to get a scrip for a UTI and she said no, I had to come in for a culture. They saw my urine was full of blood and gave me macrobid again. I went in for follow up the next week (no more blood, but still very uncomfortable/urgency/frequency/bladder tenderness/backache), and was shocked to hear that my results came back negative for UTI, even the first culture. I never had a UTI!! Well, that scared the heck out of me, because obviously, something major was going on. She said to give it another week and see if symptoms eased up on their own (blood was no longer visible to naked eye, she thought it was maybe resolving itself).

I went back two days ago for another follow up culture, as I'm STILL feeling pressure/frequency/urgency and back ache (although I guess I wouldn't use the word "pain" most days, just alot of uncomfortableness that makes me miserable). Blood is still showing in my urine, and there is no sign of a UTI.

She referred me to a Urologist, I am going Wednesday. I'm scared, not knowing what this is, and I've pretty much lived a pain free life until now, I'm not used to dealing with this and it's making me cranky. I'm worried, but looking forward to talking with the urologist.

I'm not one to take alot of meds, I'm hoping since my symptoms aren't too bad that some homeopathic remedies might work "at first", I haven't smoked pot since high school, but am thinking I may try that, LOL. I am cranky because every day I wake up hoping the symptoms will be gone, but they aren't. It's confusing, disheartening, and scary. It's nice to know I'm not alone, though, and I appreciate this board so much already.

Allylou

10-26-2006, 04:00 PM

When I was 26, I was in crazy relationship with someone- wreaked havok on my emotions...first relationship.. I was going to BC to visit him and I was really stressed about it...all of a sudden one day I started having to pee every half hour... my doctor treated it as overactive, and it stayed 'overactive' for years and I went through a bit of a wee depression at that time...I took detrol and it worked...it subside eventually, then one day, go figure, another stressful thing happened to me (yes, it involved a boy too) and wham, I was back going every half hour, and now detrol would not work...eventually IC became the culprit...

IC is weird.

Claredale

10-26-2006, 05:39 PM

I guess mine started in my early twenties. When I was a kid, I could stay out all day in the neighborhood and very seldom go to the bathroom. I don't remember every having bladder problems.

When I was pregnant with my 2nd child, I had to get up during the night to go to the bathroom. I knew it was different from my 1st preg, but I just figured the baby was having fun with my bladder. I remember right after he was born, I turned over onto my stomach because I could finally do that. I was also looking forward to not having the nightly bathroom trips. My first baby slept all night from about a month old. My 2nd son got up several times during the night and when I got up I would go to the bathroom, the freq then started getting worse during the day.

The point of knowing something was wrong was when I was on a family vacation. 3 vans with 6 kids, so you would figure we would make enough stops, but I am the one that caused the stops. I was so tired of being uncomfortable and making the entire caravan stop for a potty break. I took bynadryl to help me sleep. Still had the urgency/freq. When we got back home, I went to my doctor. He checked me for bladder infection. Ya'll know the routine.

I went to the uro that my prim dr. suggested. It was the same for most of you, take some elavil or something and you will be fine. Went back. They cathed me and the doctor said that my uretha was very small. He had to use a pediatric cath. I went into a short remission for some reason and then a few months later the pain started. I went to another Uro and my husband went with me. He mentioned something about cystitis. He gave me pain meds, detrol and sent me on my way. The next few nights were so miserable. I was up and down. Crying and screaming. Taking baths every hour. Popping pain pills like they were candy.

My husband got up with me and we (actually he) looked up cystitis on the internet. We kept looking and found IC. My symptoms fit perfectly. I called my uro the next day. He did the cysto and confirmed it. That was when I was about 25. Went a few more months coasting along on my meds and even went into a remission again.

I also know that I was drinking nothing but water.. I was trying to lose weight, so I went almost 2 years with drinking nothing but water. One beautiful summer day I spent the day with some friends in my pool. Worked in the yard, then got cleaned up to go pick up my older son and my husband from the airport. They were at a church mission trip. I noticed that my bladder was spasing a little, so I called in my detrol. I didn't realize that the pharmacy closed at 6:00 and this was after 7:00. My bladder was on fire by then. I live about 30 minutes from the airport, and I was missing my hubby and son, so I was determined to get them myself. BAD mistake. I had only driven about 5 minutes from my house and had to go bad. I stopped at gas station then went a little. Drove a little while longer and would clench my steering wheel and scream. My younger son was 13 at the time and I was wishing that he could drive. By then we were stuck in traffic because of a horrible accident.

I remember driving by the hospital and thinking I need to just get off at the exit and go to the ER. I was still determined. I finally made it to the airport. When I got there some friends from church were there. They told me that the plane was stuck in Chicago because of the bad weather. I started crying. They thought it was cute since I missed my husband. I went to the bathroom and tried to pee and nothing would come out. One of my friends came and looked for me, by then I was lying on the floor screaming with this man looking over me asking me if I was having a mis-carriage. I don't know where that came from. I told my friends to call 911. They knew that I had IC. So it was a huge scene at the airport with the ambulance driving up to the gate. I told the guy that I had IC, he knew what it was and immediately gave me morphine. He told me about a wonderful doctor that worked with IC patients. It was my wonderful Dr. Doggweiller. She took care of me for 5 years after that.

When I started going to her she asked me all kind of questions. She asked me if I ever injured my back. I told her that I stepped into about a 4 ft deep hole in my early 20s and was on muscle relaxers for a while. This was after my kids were born so I had already had the frequency. The injury could have caused it or having my 2nd child and combo small uretha.

I am now one of the many 24/7 people on this website. I would always come to this site when my flares were at brain numbing pain just to remind myself that my disease is real and that I am not crazy. I have had the interstim...it worked for awhile now it doesn't and I also don't have a doctor in my area (one comes in about 2 times a month) to adjust it, but there is no use adjusting it since it was normally a process that took several days in a row.

I am adjusting to my new doctor and his staff now, so things have been rough. I am sorry for the rambling, it's just nice to tell the story to people that understand. Most of my family and friends understand that I can be fine one day and not the next, and I have spent way too much time trying to make the other (family) understand and know just vent. I have a wonderful husband that takes care of me and makes me not eat that bad food or I will be sorry!!

I am going to try to sleep now, my meds are kicking in...No telling what i will write if I continue....

good nite

Claredale

10-26-2006, 05:40 PM

Do I get the prize for the longest post????

Lisa_S

10-26-2006, 06:00 PM

Last year I had UTI after UTI, close to one a month. The antibiotics would make them go away usually pretty quick. Until the last one. In December I had a UTI (which was cultured for actual bacteria)... the symptoms didn't clear up until the very last dose of the antibiotics, and it felt different at the end. The symptoms came back a few weeks later with no bacteria. I eventually found this web site after the first urologist didn't help. Finally in July I was diagnosed by my third urologist when I sought one out who was knowledgable in IC.

Moonheart

10-26-2006, 08:01 PM

Do I get the prize for the longest post????

Wow! Throw in some paragraphs lol!:bow:

amber sevy

10-26-2006, 09:31 PM

I have to think about this one. I have always said in my early 20's but looking back my first flair was in my teen's. I started asking for help when I was pregnet with my first daughter who is now 9. I was told that there was nothing wrong with me except I was in abad marrage and was depressed. this went on for 5 years the pain the peeing 30 times a day. Then when I got smart and left my first husband i moved to a bigger town and was working for a doctor that sent me to a uro who knew by taking to me that I had IC. So he did all the teats and sure enough he was right that was back in 2000. Now in my thirties :bonk: we still have not found the right mix of meds and treatments and I have tried all the ones they will let me. I have to find them tell my doc then he will learn about them and then he might try them. I wear a duregesic 50 pain patch and take lortab 10/500 daily. 3 days ago a new pain started that is so bad I have not slept. My husband is so worried ao I had them teat my urine and the only thing that was in it was the blood that is always there. my left lower back hurts so bad that I can't sit stand bend or lay down what elce is there to do. I have no Insurance and my medical bills are out of control I owe my doctor so much money I am scared to actually try to see the doctor (the nurse is a friend and she just tested mt urine for me then we comparied it to all my negitive cultures the only thing that showed up on the dip stick was a very large amount of blood and that is normal for me. Sorry this has turned into a rant :rant: i guess waht I am trying to say is that I have been playing the IC game for about 10-15 years who know and they still can't help me and i am just getting worse. I am one of thoes that have had to stop working due to my daily pain. My sweet husband is happy when i just move from the bed to the livingroom when he gets home from work.

Thank you all for the years of help you have all given me. I mostly just read about all of you but it helps me. I hate the pitty me that is why I do not say much. I want nubies to have hope and I can't give any YET with my story. I will Someday then I will talk more. Then I can help someone :pray:

icjen

10-27-2006, 01:21 AM

I thought my symptoms started when I was about 20, but when I really think back, it could have been around when I was a child. I always had to use the bathrooms at school more than everyone else. I just never really thought much about it because at that time, I wasn't having any pain.

When I realized something was going on, I was 23 and in nursing school. I was always in the bathroom, every break we had. I started noticing pain and pressure, expecially during sex with my husband.

I thought it was a female problem, like maybe my uterus was too low and causing pressure on my bladder. When I saw my second gyn for the problem, she suggested the possiblity of IC. From there I was dx'd on my second visit too the Uro by a PST.

I had a horrible expeience before I new I had a problem...I had to have an emegency ultrasound once, so they had to put the fliud in my bladder for me through a cath. The man started to put in the fluid and he left the room while it was going in. I was freaking out after about a minute. I started knocking on the walls to try to get his attention. When he finally came in I told him it was too much pressure and pain and I felt like my bladder was ready to burst. He told me he wasn't even half way done with how much he was supposed to put in my bladder. Of course he stopped b/c I was in tears. Not fun!

Thanks for bring this up. I like to learn of how this started with everyone.

Jen

Claredale

10-27-2006, 05:48 AM

Wow! Throw in some paragraphs lol!:bow:
You are right. Like I said...I had already taken my meds. I was a chatty cathy!!!!!

~*~Christine~*~

10-28-2006, 06:42 AM

Like most ICers, I had symptoms my whole life, ranging from chronic UTI's and even a few flares but nothing disabling.
The severe IC hit all at once on January 01, 2000, I was 15 at the time; I went to go to the bathroom and it burned like acid after wards, the next day I had to be taken to the ER where they gave me pyridium and anti-biotics. The pyridium took away the burning so I was able to continue with school and everything, thank God.
In March of that year I went to a uro and we were both at loss at what it could be, so a few days later my mom showed me an ad in her Readers Digest; it was a questionnaire to test if you have IC and they all matched up to my symptoms, so I took the survey to my uro in which he responded, "but you're too young to have this", but decided to do a hydro-cysto on me anyways.
My uro told my parents that he was shocked when he saw the inside of my bladder and had to spend 3 hours on me because of the amount of hunners ulcers and severe damage that needed to be repaired or else I would have had to have an emergency removal.
After the surgery, I was given Elmiron and went into a 3 year remission but it came back in June 2004

I really enjoy reading peoples stories with IC because it's a realization that I'm not alone with this and others understand

~*~Christine~*~

10-28-2006, 07:20 AM

As a matter of fact I am going back to college tomorrow to train as a medical assistant, hopefully in urology!
That's awsome Lesa! What people would give to have a nurse who understands what it's like to be sick

macaire

11-03-2006, 02:54 PM

Although I have not been officially diagnosed with IC, I think I do have it. It began in my early 20's with a series of bad vaginal infections and then in later years, many uti's. I think that my bladder wall was somehow damaged or affected from these. I think there is a constant inflammation thing going on. When I eat acidic foods or drink anything but water, I have terrible burning, itching and general irritation in my entire lower area! Hopefully, I'll learn from this network and be able to control this better! Thanks.

SrMaggie

11-03-2006, 08:22 PM

I think mine has been intermittent. I had a lot of family trauma during my early years. A brother died when I was 6 months old, my sister died when I was 4 and my father died when I was 5. I wet the bed until I was in 4th or 5th grade and went to the doc about it. I also had a few uti's. That's when I found out I was allergic to sulpha drugs. I think that was the standard of care way back when. I remember my sister trying to have me take the pills, which were huge. My gag reflex kicked in and up came the pill. She was only in her teens and she started getting upset with me for throwing up the pills. I must have had several uti's during that time. Once I had a really high fever and I was halucinating. Things calmed down for quite awhile - like 20 years. I taught and hardly ever went to the bathroom. Uti's started again when I was principal in an elementary school. Actually, they weren't uti's. I just took rounds of antibiotics, cypro... Then I took some time off from principal and went back to teaching. 4 years later I changed schools and was teaching in North Carolina where all we drink is iced tea. I had an Ice tea maker in my classroom and drank it all day. Then I was offered the principal job again and I took it. The urgency started again. I was diagnosed 6 years ago and have tried everything - DMSO, rescue instillations, Elmiron, acupuncture, massage, Interstim... Nothing is working now. My bladder has shrunk to 100 cc. I really like my job, but it is very stressful at times, and that makes IC worse. I will probably be taking a new position at the end of this school year.
Maggie

Babs RN

11-04-2006, 07:04 AM

My IC came on the heels of endometriosis, ovarian cysts, multiple pregnancy losses, multiple kidney stones and some not so good military diagnosticians.

Hugs,
Barb:smile tee

Katrina

11-04-2006, 11:35 AM

Fist symptoms were after some abdominal surgeries for colon and pouch....got a lot worse with UTI for a time...than diet and stress brought me to the point where I finally got diagnosed. My cycle had always affected my bladder symptoms although not always in the same way.

MerryBerryMoose

11-13-2006, 03:16 AM

My IC symptoms started slowly when I was 15. I tested pos. for many UTIs and was treated for them. When it got worse my urologist did a cystoscopy and found it was IC.

Prior to the IC symptoms I had two major abdominal surgeries. One to remove my appendix (2.5 inch inscision) which had ozzed into my abdonimal cavity and caused a large infection. And one to remove my gallbladder (4, 1 inch inscisions). My gallbladder showed sings of sever inflamation.

I think my IC, joint and gallbladder (when I still had it) inflamation is due to an undiagnosed chronic inflamatory disorder.

glassd18

11-13-2006, 09:16 AM

I had IC symptoms develop when I was around 19 after I had a colposcopy, and cryotherapy for dysplasia, but then the symptoms went away. I had a few bad UTI's on and off throughout the years. I was diagnosed with Premature Menopause at 35, and put on HRT. I always had mild symptoms, but after switching from Prempro Low Dose to Estrace and Prometrium this past January my IC started badly, and have not been the same since.

mtnrunner

11-21-2006, 05:47 PM

It started one day when I peed and then stepped into the shower. It felt like a rock was sliding down my urethra (I was so hopeful it was just a kidney stone!). Then after a few minutes it calm down to just an annoying urgency feeling. The next two days I felt like I was getting a UTI, the urge was worse, but not burning when I urinated like the typical UTI. I tried otc yeast remedy, then saw a doc and got antibiotics and diflucan, but there was no evidence of infections. And so the story goes....

I also recall having trouble as a small child. I had a run of UTIs, and then at about 4 years old I had a mysterious urgency/frequency issue that went on for several months. The docs did a cysto and I think IVP or whatever they used in the early 70s, but found nothing. Eventually it just passed. I remember my mom putting a baby potty in my room next to the bed because my parents were tired of me getting up to the toilet over and over trying to get to sleep. So I would sit on that darn potty endlessly. What a horrible experience as a little child. And the memory is so vivid over 33 years later.

Moonheart

11-21-2006, 11:58 PM

I remember a stretch of time when I was about 11 where I had such severe urgency I was wetting my pants all the time. I remember being at a friend's house and playing and just losing all control. I was never a bed wetter or anything and I was totally humiliated at the time. Very embarassing.

I'm sure alot of us have many things throughout our lives that tie into this, but we just can't remember all of them.

kennedy

12-10-2006, 11:01 PM

Mine started about a month after a serious car accident. I was rear-ended by a construction truck that launched me into afternoon traffic on the Las Vegas Strip. My back was messed up pretty good. One morning I woke up with what I thought was the worst UTI I had ever had. 8 months, 6 more UTI's and a cystoscopy later I had my diagnosis.

Kennedy

PlainJane

12-17-2006, 09:24 PM

My IC is caused by Lyme disease.

I saw a Lyme specialist in New York City on Nov. 13th and he strongly suspects that I have chronic Lyme disease and babesia (a co-infection of Lyme). The tests for it aren't that reliable and I tested negative but have many of the symptoms (air hunger, extreme fatigue, nightsweats, excessive sweating during the day). Babesia is a malaria-type infection.

As well, the specialist examined me and found a classic Bartonella rash on my arm. It has been there for many months but nobody knew what it was. Well he knows. Bartonella is another Lyme disease co-infection.

So now I am on treatment: Cedax (cephalosporin antibiotic), Azithromycin (antibiotic), Mepron (anti protozoal for babesia), Diflucan (for yeast) and Intramuscular Bicillin antibiotic injections. I am also on treatment for my thyroid because now it is low. As far as I know my cortisol levels are going up but I will have to have that re-checked soon.

The Lyme specialist said that Lyme seems to love the female bladder. It can really irritate the bladder. He has treated thousands of patients and has been treating Lyme for 15 years so I'm sure he knows his stuff.

~plainjane

Fluffy2

12-18-2006, 03:28 AM

I am still waiting to have a urodynamics test done in February. Yes, I am in Canada fortunately or unfortunately depending on how you look at it.

I remember getting urethral irritation maybe twice a year or so usually after sex. It was never so bad that it hurt to pee though. That would sometimes bring me to the doctor who would do the dipstick test. Usually that would show some white cells and or blood in the urine. She would always put me on a course of antibiotics which would always work to get rid of it quickly.

As well about a year ago I noticed that I was getting up to use the bathroom at night and not able to hold the same amount of pee anymore. I chalked it up to a weak bladder in my old age of 36. Then while excersicing at really high intensity sometimes I would feel some leaking. Yikes.

This past September I thought I was getting a yeast infection due to itching I experienced but after treatment it was still there. My period came and things seemed to get a bit better. After my period everything came back. My symptoms were urethral burning, itching, pressure, some pelvic cramping on and off, lower back pain. I went to the doctor (who was doing a locum for my normal doc on mat leave)explaining I must have a UTI. She did not automatically put me on antis but did a urine culture. It came back negative. She sent me off saying it will likely work itself out. It didn't and I went back and she proceeded to do a culture for all the usual suspects. Nothing. I was miserable so I went to a walk in clinic and a dipstick test there produced white cells and blood so I scored some antibiotics. They were slower to help than normal and I was only off them a week or so when the symptoms returned. Back to the doctor who put me on Cipro. Again this helped but did not get rid of things completely. I still have good days and bad. I have not seen much of a correlation between my diet and symptoms but perhaps I am still new to things. I grapple with frustration that there is so many schools of thought with IC. Is what I have an undiagnosed infection? It would make me mad to think that I am suffering for no reason when there are perfectly good antibiotics that could give me back my sanity. I just can't believe the medical community is still so in the dark in this day and age.