What Started It For Me

[Flowerchild]

My IC started as soon as my ovaries were removed. It literally began during my 6 week recovery from surgery.
Flowerchild:pray:

[leelee88]

There seems to be alot of people that say that there IC has started right after a surgery.. I have always had frequency. But my true IC symptoms started after I had to have surgery to have 4 kidney stones removed.

[SharonA]

Mine came out of nowhere. One day I was fine, the next day, I was in pain.

[Claredale]

Same with me, it came out of nowhere. Never had any bladder infections, female problems, etc.

Tracey

[Texas Baby]

My symptoms started about 13 years ago after the traumatic birth of my last child. But I had had imtermittent female Bladder problems all of my life since age 13. When I was about 13 my niece & I were covered in chigger bites. As in the south and Texas they do have weird remides(to help kill chiggers) such as bleach baths & lysol that you would dab on a cotton cloth and wipe on your skin. Well My grandmother decided to have us take a lysol bath. it was horrible. I firmly belive that it was the catalyst into starting my IC among all my other female problems (although I never told anyone this) Anyway thats my story.
Tbaby
PS not all old wives remedies work....beware!!!

[Sally939]

I have had a lot of bladder infections. Then all of the sudden I knew I had one but it would not show up on a test.

[nabroeker]

I had many bladder problems as a child, and I think this somehow correlates to my IC. I can remember the day it set in though. It was my brother in laws wedding and we were on a party bus. I had to go to the bathroom REALLY bad, and we could not stop. I held it for a long time; since that day, my IC symptoms have started and that was seven years ago.

[GriffsMommy]

My dr thinks I have always had IC since I have always gone more often than people normally do. I think what pushed me over the edge though was the bladder surgery I had in 2003. I had a mass of endo that had grown through my bladder wall and it had to be removed. I'm sure having an almost 10 lb baby on my bladder didn't hurt. I really started having my first flares when Griffin was a baby and was misdiagnoised with UTI's but no bacteria found.

[punkey]

Twenty years ago I had my first bladder infection - it went into my kidneys and I had a terrible time - renal failure and nothing but pus and blood when I went to the bathroom. After I got rid of the infection I kept feeling like I had a bladder infection - would go to the Dr. and there would be nothing. Five years ago I had a terrible flare - it lasted 8 months and was brutal. I was diagnosed with IC at that time. The flare was brought on by a uti. After the 8 months I started feeling better due to accupuncture and diet. I was fine again up to 8 months ago. Another bladder infection and a huge flare. I am starting to feel better due to accupuncture - hydroxyz-pam - and again diet. I have been to five UROs and when I tell them I know when this started they act like I am crazy. I DO KNOW!! I refused the hydro and the last uro I went to said it was not necessary. Thank heavens because I was not willing to chance the bladder necrosis. Feeling good now. Hope it continues.

[LaurenEngland]

I had a bad run of water infections. I'd get them every few weeks while I was at university. When I moved back home they were more regular.
When they found out it wasn't an infection I knew it was IC

[lisabar36]

It does seem like alot of people say there IC started after surgery. Mine started with UTI symptoms and was being treated for UTI's and all they could ever find in my urine was blood. I tested positive for microscopic blood since I was in my middle 20's. I have never had a urine test that did not show blood since. They said its my bladder causing that from IC.

[joanne48]

Mine started after my hysterectomy in 2006. And it has been awful since then.

[izazen]

I think mine is hormonal based as it always revolved around having my period (when I HAD periods) and menopause (estrogen deprivation) afterwards.

I think a huge trigger for me was sitting on hard library chairs a lot - when I would walk away after a few hours my whole "between the legs" area would be numb for hours and hours. Dr Weiss said this was a definite contributing factor for PFD and related problems in one of his articles so I think my PFD caused my PBS plus atrophic urogenital irritations.

[karen10]

I find this to be a very interesting thread! Here's what I've learned so far: IC seems to come out of: frequent UTI's/bladder infections, some starting at a very young age; surgery/female issues (including hormonal issues); an irritation of some sort (like sitting on hard chairs or chemicals in a pool--Jill's story) and then those that seem to come out of nowhere with no apparent trigger. This is what I've observed and I would LOVE to do some research on it (I'm working on finding some interest from someone currently in grad school). Those that have had surgery's (and I mean those related to female issues or bladder/kidneys) and/or have endometriosis seem to have more pain with IC. Those with infections seem to have more manageable symptoms and need less meds?? Has anyone else noticed this pattern? For those where the IC comes out of the blue, I wonder what started your bladder breakdown!?? I have the curiosity that could kill a cat!! :smile tee

[alycat]

My IC started at about the same time that my hormones went all out of whack (about a week before, I'd nearly kill people, cry, scream, etc. Nasty periods during that time with a TON of cramping and the like) about six months before I turned 18. It came on all of a sudden too, during a field trip to Seattle no less (that was one of the worst bus rides of my life...). The docs kept treating me with antibiotics even though a UTI never showed up.

I always went to the bathroom more than my peers when I was a kid too. Laughing too much or coughing too much would make me leak even as a kid. I don't do that so much anymore (Thank God), in fact now that I think about it I stopped having issues with that about a year before the IC set in. Hmmm...

Karen, I agree with you that I'm very curious abou this as well. I want to know what the heck is going on!

[gopher7895]

I remember having 2 bladder infections in my 20's and no other bladder problems ever until my endometrial ablation procedure called NovaSure when I was 45. The first thing I said when I woke up was "where's the bathroom" and the urethral burning was intense. Originally I thought it was a temporary thing from the procedure. My gyn at the time thought I was a nut case and imagining my pain. He was an older doctor and told me IC was rare. He said only people with life long bladder issues get it and it was impossible to get it from that procedure. Needless to say, I found another doctor. I don't know why or how my IC started that quickly but I know it did.

[redhead43234]

My IC pain started after some recurring UTI's, but I have always had to go to the bathroom more than other people... so there is no telling when it really started.

One thing that has peaked my curiousity lately is the new health info about diet soda. On Good Morning America the other day they were saying how even one diet soda a day is detrimental to a person's health! They are linking it to MS, heart disease, weight gain, and other problems. Before I was diagnosed with IC I drank like 5 or 6 diet sodas a day, no kidding. I thought I was addicted to Diet Cherry Pepsi! I wonder if there could be a link between the two.

I am also wondering how many IC women out there were fitness freaks before being diagnosed? Before I was diagnosised I would run about 3 miles a day, and I have noticed that many ICers seem to be more excersise driven than most of the american population. I wonder if there is a relation between the two?

One last thing, I read in "You don't have to live with Cystitis" by Larrian Gillespie MD that a study was done and it was found that most people with IC have red or light blonde hair, or have a close family member that does. I don't know how this can relate, but isn't that interesting?

Any who, I am determined crack this IC mystery! :bonk:

[karen10]

redhead -- interesting that you mentioned the word "driven" as I've been talking to people that interact with lots IC patients regularly and they have seen that there's definitely a personality type that goes with IC. One word my doctor used was "obsessive," another person said type A personality. And I have also seen and heard that there's lots of anxiety that goes with it, but that might go with the obsessive part, needing things to be "perfect." I don't know, but it is interesting to see these types of patterns. I know I personally fit into the obsessive and type A traits! So, exercise is probably just one area where IC'ers are driven. I'd be curious about addictions too as many addictions are related to some type of obsessive behavior. Good observation! :)

Oh, and no red or blond hair in our family -- we all have olive skin complexions and dark brown hair. But there may be a larger number of IC'ers with blond or red hair!

[lnseagraves]

Mine came more or less out of the blue when I was in College. I remember one week I woke up with the IC belly. None of my trousers would fit me! I remember my boyfriend of the time (now hubby) commenting that I looked pregnant and he jokingly said 'Is there something you need to tell me??" Two days after that conversation I woke up with extreme burning when I peed. I'd never had a bladder infection before in my life, so I thought that was what it was. I called the nurse at student health who (stupidly) informed me that there was no appts. available that day and she put me down for first thing in the morning. Needless to say, the pain and frequency increased throughout the day. By the end of the day, I was peeing blood, and my now hubby and my roommate forced me to go to the emergency room. Well, they never found bacteria but they did treat me for a UTI. I started feeling better. I even remember asking the Emer. room nurse if UTIs can make your belly swell like that, she said "no they can't, youre probably just retaining water." and blew me off.

Well, that was my first flare. I had 6 more in 6 months before being sent to a urologist...

btw, I was a virgin at the time with no abdominal surgeries. There is nothing I can think of that would have caused it. I did have frequency my whole life though and I am blond, if that has anything to do with it.

[Claredale]

I posted earlier in this thread that mine came out of no where. I was actually on my way (traveling in a car) on vacation when I noticed I was having to stop to go to the bathroom more than usual. I am not blond or redheaded, nor do I have them in my family. I was born a blond, but that didn't last long LOL! I was sort of obsessive, if that is a term. I liked to keep a clean house and was pretty fast at getting my "chores" done. My kids were young and I wanted to keep a clean house, but I was never ever obsessive about being a neat freak or anything. Mine was more MIL driven, since I lived 5 to 10 minutes away from her and still do (so that may be anxiety...I guess). While I enjoy having a clean house, it is only based on the way I feel and I don't push myself. When my IC became severe, I was pretty much the same way. I just worked at my own pace. I had a stressful job during my early years and it became even more stressful and I was then diagnosed with severe IC. I have always been a water drinker mainly because I grew up with a horrible case of Eczema (another auto-immune disease) and I couldn't have citrus or caffeine or my skin would develop horrible rashes. When I was growing up, we had Kool-aid with real sugar (as a treat) and water. Soft drinks only on an occasion, like after we cut the grass. My mom didn't allow alot of junk food in the house because my brother would eat it in one sitting due to his meds. Even though he was never overweight.

That is a good theory though.

T83

[CherylSLP]

I have always had to go to the bathroom more than other people however, it got set off full force after a bladder infection I think.

As to what actually caused it though, I think it was the long term treatment I got with antibiotics for acne in my teens, and possibly the Accutane I took therein. From what I have read about autoimmune disorders this would fit. I do not think our bodies are made to take antibiotics like that.

I believe some people have a genetic predisposition to autoimmune problems and something then comes along and sets them off. Our immune systems are not right and so we do not react like typical folks to vaccinations, antibiotics or even infections themselves.

There has to be something to the fact that this disorder is growing in frequency, and I do not think it is just that more people are aware of it. There are too many autoimmune diseases gaining in diagnosis for that to be the case. I think in some way modern medicine and/or our environment with so many toxins and chemicals has created as many illnesses as it has solved.

There is my two cents.

[gopher7895]

The last post caught my interest because I took tetracycline for about 4 years as a teenager for acne. At the time I was thrilled to have clear skin but now I wonder if I damaged my body as a result. I wonder how many others took it and later got IC.

[Sally939]

I never took any meds for acne. I wonder if others did or did not.

[redhead43234]

I have never been on antibotics for acne, but two months prior to being diagnosised with IC (and when the symptoms started) I was on one round of antibotics after another (for approx 2 months) for UTI's and bacteria vaginosis that kept coming back. I think either the UTI's or the antibotics had something to do with my IC.

[karen10]

Yes, I agree! I think there's something to the antibiotic theory. However, this also goes with my theory that yeast/candida is very involved in IC (and this affects those that are more susceptible to it, not everyone). Antibiotics are one of the big 4 yeast triggers. I also agree that there's something to this because we're seeing an increase in autoimmune. I very much believe that there's a genetic predisposition to how we respond to our environment, and experts say that's definitely true for those who get cancer. It's called the diathesis stress model, depending on our predisposition (diathesis) and the environment we grow up in and then live in (stress) will determine our health. I am convinced antibiotics are a problem, and I also believe what happens in our body as a result of those, which for me was systemic yeast is also a problem. The great thing is you can eventually eliminate the yeast issue with a strict diet (which often is very long term) and supplements and/or meds (but I prefer to use a natural method as I think it promotes healthier living). :)

[gigisgirl]

Mine came on after a long labor and delivery of my daughter in 1998. I was also strep positive during that long labor and delivery (Oct 14-Oct 16th) and was never given any antiboitic during my labor.
jill

[noirjezza]

I think that my problems started when I got my first UTI (which was right after I became sexually active). I didn't have any prior problems, but I think that most people would describe me as being "sensitive" to a lot of things.
After that first UTI I kept getting "UTI's" every time I was stressed. Did soemone say something about us having a certain kind of personality- I would totality agree with that. Then started having more (and consistent) pain with sex. They kept saying it was a yeast infection or a UTI, it was 3 years before a GYN sent me to a urologist.
My theories? I think that a lot of health disparaities stem from diet and I have been pumped up with things like aspartame since I was a kid. I think that that has caused a neurological sensitivity in my bladder, which was aggravated by the initial UTI and that I may have lingering effects from that UTI. What is actually causing IC has not been discovered yet (like for years they didn't know that the majority of ulcers were caused by a bacteria).
Just my theory...

[Tuckersmom]

I started having UTIs at around age 20. At the age of 31, I had a UTI that 'never went away.' Also, at that time we were experiencing major problems with one of our children. I believe that the stress, along with the UTI, was the beginning of IC for me, but it took me 14 years and 3 Urologists before I was diagnosed.

I am one of those 'perfectionist' types, too, though I wish so much that I wasn't. Perfectionism equals major anxiety in this imperfect world in which we live.

[DreamChaser]

Looking back as a child I can recall having urgency flareups that would come and go. I never told anyone about it. In my early 30s I had a hysterectomy and endometriosis (sp?) but the flare up just came out of no where in 1990 when I was buying a house. It was unbearable! I suffered for years before I was diagnosed. I've only had a few terrible flare ups. Ok so in December I just bought another house and darn if I didn't end up with a flare up. Before that I was eating whatever I wanted. So I'm thinking we me it has to be major stress that triggers it. Wish we could get a cure :)

I love you guys. This is the only place that seems to understand our pain.

[noirjezza]

Why are so many of the more recent illnesses so stress linked? You can't tell me that growing your own food and making sure you didn't starve to death through the winter was not stressful. Were they just better at ignoring it? Not to be morbid, but did you just die from it?
Another part of my theory is that I was a premie. I know several other adult premies that have "odd" disorders. Could this play a part? Were our bodies stressed in infancy- correlating with problems as adults?
Will we ever know?

[DreamChaser]

That's interesting. My mom told me I was the only premie out of 5 and the only one with problems. You may be on to something.

[sunfoodgirl]

Its interesting how many different stories there are about IC. Though it sort of makes defining a cause difficult.
I've had bladder infections many times, still get them easily. My IC started as if I'd had an infection that went on for months and kept me up at night crying in a sweat, in and out of hospitals, but the docs kept telling me that my culture came back clean; no bacteria, no disease. That year had been a stressful year of helping my brother through a drug problem. He was my heart and it really took a toll on me. He died 3 months after I was diagnosed and my IC flared severely. I feel like stress hormones had a role in my IC. I wonder too about the antibiotics. My body is resistant to several of them now form all of the treatments of past infections. I'm going to do high doses of probiotics and spirulina, which is supposed to help with candida. we'll see :)

love and light - Shelley

[DreamChaser]

I'm so sorry for the loss of your brother.

[JKL]

When I first started experiencing symptoms:


I was living a very stressful life (still am) ;)
Had frequent UTIs and yeast infections
I did a lot of binge drinking
Drank 2+ cans of caffeinated pop a day
I also was taking a lot of ance meds: Tetracycline, Accutane, etc.


It's interesting to read your responses; there are a lot of similarities!

[redhead43234]

JKL,

Your list could be my list except the acne meds! There has got to be something similar in all IC people. The answer is there, we just have to see it!:grouphug:

[GriffsMommy]

I don't have red hair or blonde hair, my brother is a red head though and has always been pretty healthy, nothing like the health problems I have.

As I previously said, my dr thinks I have had IC my whole life and when I was younger it was just "under the radar" and everybody just thought that I had a "small bladder" but then as time went on it got worse and the pain started and it couldn't be ignored any longer.

I do think there is a strong autoimmune component. My mother had endo and had to have a total hysterectomy because of it. Luck for her I guess she didn't have any pain until the endo wrapped around part of her bowels and killed it and then had the hysto soon after that.

As soon as I started having pelvic pain I thought that it was endo and all the dr's called me crazy, that was until it was confirmed. They say that endo is probably autoimmune and some think IC is too so I think that is a big piece of the puzzle. Nobody else in my family has IC and my aunt is always commenting on how my side of the family (my mom and I) have so many health issues and her side doesn't. I know that IC can run in families too but I know that IC is less common in boys so I'm hoping my son will be spared from it because I don't know if I would wish this on anybody.

[L. Thomas]

My urogynecologist thinks there is a genetic prodisposition and IC manifest itself after bladder trauma.

[Claredale]

Yes, it would be wonderful to figure out what the root case of IC was, but I truly think there are as many factors as their are ways to treat the symptoms. Our bodies are all differently made and there isn't going to be a particular "cause" for us to all back track to. I participated in a couple of studies when I went from mild/moderate IC to severe IC. Dr. Ragi worked with another doctor who eventually went to work at Duke. I wish I remember his name. He was a very good looking doctor, and I only saw him a few times when Dr. Ragi was at a seminar or visiting family in Switzerland. He would ask me all kinds of questions trying to figure IC out and the most common type of treatment. I along with other people that I that had gone through DMSO treatments felt that it was the DMSO that made my symptoms worse, but then when you get a bigger group together, you find people that DMSO has been the treatment that was what decrease their symptoms. Then you want to know what stage their IC was in when DMSO was tried. I only know a handful through my current doctor and they all had DMSO when they went to a urologist and none of them had success with it.

Just like cancer. My son's best friend Paul was diagnosed with Leukemia on his 13th birthday. They thought he had arthritis at first because his joints hurt so much, but after more blood work and biopsies, he was diagnosed with leukemia. He was perfectly healthy and his mom was very particular that he ate nothing but healthy foods and was definitely a healthy active kid, then all the sudden cancer. He has a very large extended family since both of his parents had large families. Both of his grandmothers had large families as well. For the most part, except for some heart disease issues, the family is still quite healthy, so the big question is still why did Paul get leukema when other family members smoked around their kids, fed them junk food, didn't make them get sleep they needed, and then the big question...some of the parents used drugs while they were pregnant with their babies and yet, there was Paul the one that got leukemia. When I would go to St. Jude with my son so that he could be with Paul during a chemo treatment or for tests, I would look at kids of all ages that were suffering with all kinds of cancer and think the same thing. What caused their cancer. Little babies that hadn't even crawled yet, had tumors the size of softballs removed from their abdomins and eyes removed, etc. It made me realize that there are researchers (the best in the world trying to figure out the cause of so many diseases).

I remember when I went to my first "real urologist" that my PCP suggested, Dr. Conrad mentioned that I had a small urethea, and asked if I ever had any problems with UTIs or spasms which of course I didn't. As I posted before, I had a shy bladder and could hold it for a long time, but that was when I was a kid up to being a pre-teen. I grew up with mostly boy cousins and boys in my neighborhood, so instead of peeing in the woods like the boys did, I held it, but never had spasms afterwards, so my urologist determined that it must not have anything to do with my urethea. I even had 2 children and never had bladder control issues and had normal childbirths. My symptoms didn't start until my youngest was 2 years old. Even 9 months pregnant, my mom would ask me if I would "pee" on myself if I sneezed or laughed hard, whick I didn't. I can remember hating to be cathed even back when I was in labor, but as soon as it was removed, I was able to empty on my own, so that didn't bring up any flags.

I have seen so many theories on this board. Type of blood, hair color, did you have a parent that was in the Vietnam war, etc. I also have brown hair and neither parent was in the Vietnam war. I remember a few years ago, I was doing some research on who IC seemed to effect the most on the internet. I read that it effected alot of people from Jewish or European decent. But like most things, the internet has alot of misleading information. When I posted the question about the percentage of Jewish people that had it, I didn't get any responses at all. My family heritage is a mixture of Pennsylvania Dutch. My grandmother is PA dutch (dad's side). My grandfather on my dad's side was German and Indian. On my mom's side is Italian and Irish and my grandfather is mostly Indian. No one in my family has ever had anything wrong with their bladder except for my aunt who has a birth defect which caused her urethra to have a kink in it. She has always gotten UTIs fairly easily. I have only had 1 UTI and 1 yeast infection in the 20 years I have had IC. My mom has never had a yeast infection and a handful of UTIs in her life and actually those have been when she got older. I asked her the other day since I knew she was a very busy nurse working in surgical IC most of her nursing career and I remember her telling me when I was growing up that she was lucky if she had enough time to stop and use the bathroom during her shift.

T83

[TinaM]

In 2004, when I was 47, I began suffering from two things, actually the first was not a suffering but the beginning of life change, premenupause. I started bleeding very heavily, my doc said I had 3 small fibroids, although all 3docs said they were all very small in size, insignificant. I have now concluded at age 50, that my heavy periods were not because of the fibroids, but rather it was the end of my period and for at least 1.5 years, it just became very heavy and then stopped on time at age 50.

At the same time, this fibroids and bleeding was going on, I developed an esophegeal ulcer (the only disease I have had in my life). In 2004, I was mildy overweight, but felt that my stomach was protruding and saw several doctors for this problem. My doctor said I had GERD and treated me for the ulcer with Prevaced for 6 months. I remember when I went for this appointment, I mentioned to him about my frequency and urgency. He said, maybe that was related to the fibroids and premenupause problems. As for GERD, I had always had stomach acid problems as far back as I can remember. I must say though that I had very bad eating habits. I would eat a whole dinner and would lie down right afterwards, which caused acid to regurgitate.

Maybe I had frequency/urgency in 2003, and maybe I didn't notice, but I always used to think that the fibroids were pushing my bladder. I don't suffer from any bladder pain, but have experienced it a few times, on a few isolated occasions. My notes from June 29, 2004 reads:

"weakness in legs, mild pressure in the pelvic area, scared to go exercise, pinch like sensations in vagina, abdomen seemed bulloded even though ate dinner at 5:30 p.m., 4.5 hours later still bulloded, also feel feverish, kinda warm all over".

In conclusion, I think either the changes in hormone levels or high acid caused my IC (by the way, I don't have a definite diagnosis of IC from my doctors yet). But I am certain that that's what I have. I had a cystoscopy done in 2006, but due to lack of pain, my doc didn't say for sure that I had IC. She said she suspected I had IC.

I wouldn't ever want to do another cystoscopy, would anyone please tell me what would be a definite IC test? I also don't want the potassium test. I really don't want any invasive procedures unless I was really suffering badly from pain. Have they begun testing IC patient's urine for some special factor which they find? Please advise if you know the name of that test.

[snowgirl]

The last post caught my interest because I took tetracycline for about 4 years as a teenager for acne. At the time I was thrilled to have clear skin but now I wonder if I damaged my body as a result. I wonder how many others took it and later got IC.

Yes I did take tetracycline for years for acne as a teenager. I have always wondered about that myself vicky

[TinaM]

vickyvale
I took tons and tons of tetracycline as a teenager for my acne, as well. I was so surprised to see your post. Yes, I was given so many tetracycline, that it was out of control and there was hardly any improvement in my acne from taking them, but there was nothing else to do. I used to live in Fiji Islands, where we didn't have too much information on health issues and antibiotics was pretty much the drug to take. I wouldn't be surprised that maybe now we are paying the price for all those antibiotics. I am not sure where I have read it, but there is a theory among doctors that maybe IC is an infectious disease. Maybe all that antibiotics created a different spectrum of bacteria, which they can't even recognize now.

[snowgirl]

I even advanced from tetracycline to minocin which was stronger yet. How about you? Vicky

[JKL]

I also took Tetracycline. I have been on a lot of acne antibiotics in the past. It's interesting to see a trend with that...

[motherof4]

I had uti's growing up as a kid,and I had a very hard labor with my first son and pushed very hard for 2 1/2 hours non stop I sware I was never the same after that.But after that I had alot of burning but no pressure then after my second son the burning was so intense that I would have blood drops in my underwear.I went to my obgyn for 2 years complaining of pain and burning and what I thought was a yeast infection that would never go away, and he went through my belly button to explore and I woke up never the same again I had the worst pressure on my bladder that I went back to the hopsital that night thinking either my bladder was going to burst or he left a tool inside me.I stayed there for 4 days in so much pain they of course thought that I was nuts and the nurses were so nasty to me except the head nurse which was a guy that had tatoos all over him and was nice as could be.They finally sent an uro in and he did a hydro and found out that I had IC that was almost 10 years ago.I am now in a flare since January and have had it with this crap and just want it to go away.............

[sunfoodgirl]

thank you dreamchaser :) I'm working on a documentary about his life. In my "spare" time lol!!:smile tee

xxoo

shelleyjane

[eyespook]

I believe what caused my IC is having two lap surgeries for my endometriosis. After my first surgery my pain started but it wasn't that bad. I could control the pain with 2-3 ultrams per day. After my second surgery it has gotten a lot worse. My Ic pain is worse than the endo pain. I have frequency and pain after peeing. I wake up 2-3 times a night. Usually my worse pain is when I wake up in the morning. I am currently taking Avinza 30mg twice a day (just started last night), percocet and ultram (for minor pain). I was taking 4 percocets a day but now that I am on the Avinza (extened release morphine) I am hoping to gradually come off the percocets. I think they are making me moody. I actually had a hydrodenstion and cystocopy that came back negative but my Urologist still thinks I have IC because I have all the symptoms.

[LuvMaui]

Mine started 2 or 3 weeks after my hysterectomy in 2006. I had a horrible pain with the cathiter. I think there was a bladder injury.

[kizei]

Hi all, this is my first post. I am so glad to have found these forums. Here is my background and my theories on how I developed IC:

I had several gasto problems in college around 2000-2002. I went to a gastroentologist (?) and several regular doctors as I did not have a primary at the time. The gastro said I had lactose intolerance. I had to go to the hospital in 2001 with severe lower abdomen pain and they said I had low potassium, and IBS. After several months I discovered I was not lactose intolerant (I could always drink milk and eat cheese, etc and not have problems) and most likely didn't have IBS because was mostly fine with passing bowels, etc. One of the regular doctors finally said it was because of stress and my stomach seemed raw from acid. Then I was fine for awhile. I was on every medicine you can think of for these issues.

Then, in 2002, I had recurring UTI's. They were actual UTI's at first and I also had several yeast infections from the antibiotics, bacterial vaginosis and one of my ex's gave me trich (a curable STD, thank god but it gives you icky discharge/irritation). After awhile the frequency/urgency and pain wouldn't go away but everything else did. I went to a uro and he said I most likely had IC and tried Elavil, Detrol and Hydroxine (sp?) and nothing seemed to help. I got frustrated and stopped going. I felt like a guinea pig. The uro never did a cytoscopy but said nothing else was wrong with me and since I had the classic symptoms of IC that I most likely had it (including getting up tons of times during the night.) This was between 2002-2004. I also seemed to have sexual problems such as low sex drive, could not orgasm, pelvic pain and sometimes blood during and after sex.

Finally after these symptoms would come and go, I started getting EVERYTHING checked out in 2007. Nothing wrong with me on the feminine side, except my gyno said my uterus seemed very close to my bladder. I was 6 weeks premie and always been really skinny, I'm 5'6 and never weigh more than 115. My mother had a hysterectomy because she had a cyst the size of a melon in her uterus but never had any other problems. No thyroid problems, got that checked out since my mother has thyroid issues.

I have been going to my uro since 2007 and am now on Elmiron since Sept 2007 which I think has worked. I have been trying Elavil for about 5 weeks but it makes me a zombie. I'm trying to take it earlier in the evening and see if that helps since I usually go to bed late (12pm-1am) and I would take it right before I went to sleep and then get up at 10 for work and I would feel sooo groggy. I have an appt in a week, so we will see. Detrol hasn't worked. I take prosed if I need to and macrobid after sex to prevent a UTI. Had a bad flare in Jan. 2008 due to sex or stress, since both were going on at the time with my bf.

I think I got IC either from my GI problems or stress and sex. I get flares and pain from sex and being stressed. I have cut soda and mostly alcohol from my diet. I still have some GI problems but it could be IBS or just side effects from the Elmiron. Usually food is okay for me. I have always been on birth control and switched BC's 4-5 times over the past several years, so that is why my uro thinks I would have bleeding during/after sex. I always feel pain when I am really stressed, around my period and sometimes during sex, although that has seemed to go away.

I do have Jewish and PA dutch in my family, although I don't know if that accounts for anything. Before college I never had any feminine or bladder issues. So I do think sex/stress is the cause. I first had sex in college when I was 18. The problems started shortly after that.

Thank you all for listening and thank you for your posts. A lot of what you all have said has made me feel better and has informed me greatly.

[JKL]

Welcome to the ICN, kizei! :welcome:

Thanks for sharing your story. I'm sorry to hear about all you have gone through! Most people here on the boards went through a lot of testing and switching docs over many years before they found answers. Not a fun disease to have! :P

This site is a great place to get tips from others and simply vent sometimes. Seriously....GOD BLESS this website. I think I would have gone crazy without it because I have so many uncertainties and questions regarding IC. : )

Take Care,
Jen

[justice4j]

Kizei,
I read an NIH study recently that said 14% of the IC patient population is Jewish. If I'm not mistaken, there are also a lot of Jewish patients diagnosed with Crohn's. I wish I could remember the article name so I could send you the link, but I can't...

[kizei]

Thank you so much for the welcome!!

I'll try and look for that article. My father's side is Jewish, specifically from Lithuania. It would be really interesting someone's heritage would be a deciding factor on whether or not they could get IC. I am really hoping that soon more doctors will have answers for us on how we could had gotten this disease and what other people could do to try and prevent it!

[cowdean]

Mine started after kidney stones and got progressively worst because the Urologist could not figure out what was wrong with me. I have 3 petechial hemorrhages in my bladder. When they did the first cysto I had only one area. Wish he would have sent me to the specialist sooner, but hey at least he did and I am almost pain free. I am still trying to decide what I can eat and can't eat.

[kobegun]

I am not yet diagnosed but my symptoms started a little after I stopped taking birth control pills as well as other problems I have never experience before stopping the bills which include: heartburn (did not even know what the pain I was experiencing was, had to go on 3 months of Nexium) and then an irregular heartbeat for which I was sent to a cardiologist, turns out it is an extra heartbeat, probably due to stress. Then the next thing that started happening was bladder problems, mostly frequency and pressure, which has been ongoing since June of last year. I was perfectly healthy up until stopping the birth control pills (which I had been on for a very long time, 18 years I believe) so it seems to me to be hormone related.

[Lauran]

My IC and vestiblitis started with a BV infection.:mad:

[Lauran]

Does anyone think that IC could somehow be sexually transmitted for some people?

[actinga]

I can remember my first experiences with nocturia: when I first started taking Green Tea Extract supplements and then a few months later when I quit them. It has stuck with me but picked up pace and now it's every night and I'm still trying to figure out all the foods/drinks that impact it. I so miss sleeping through the night or only getting up once.

I've never had any surgeries, no kids, and no prior issues.

[Kara Isabel]

Accutane.

I'm 100% certain my fibro and IC came about during accutane treatment, although..I may have been pre-disposed, since I have allergies, etc.

[Pam39+]

I actually heard from Children's Hospital Boston yesterday in reference to the study that my mother and I are participating in. They wanted to know if my mother's siblings (3 living) would participate. They also want my daugher and my son and possiblly my daugher's 3 boys. They are now willing to release your individual results to your doc and have your doc confirm the results. I asked if my samples had been studied yet and she said she was 98% sure they had since we have 3 generations with IC. (My mom, myself and my daughter) She said given that their are 3 of us with IC that our case is quite remarkable. When I get my results I plan on sharing them here.

We know that IC is not sexually transmitted. There are children that have this disease that have never had sex. Mine did start following an uteral ablation (when they burn the lining of your uteras) but I had some symptons prior to that that I now know was IC. I was pretty much a health nut that ate really well. I didn't drink soda's, use artificial sweetners, etc. I have never heard of acutane. I never took medicine. My mother and daughers symptons just came on. Neither one of them had surgeries before there symptons started. My mother had a hysterrectomy but that was years before the IC started. My daughter had never had surgery and with the exception of migranes was never sick. My other two children and my aunts and uncle do not have IC.

I believe that there are several different issues going on that for now are all being diagnosed as IC. For instances look at all the different symptoms so many of us have. I also believe that it is an auto immune disease which would explain some of the other illnesses that so many of us have (IBS etc.).

I would encourage everyone to participate in these studies. All you have to do is fill out some paper work, answer a few questions and submit saliva and urine. In the University of Maryland Study you only fill out papers, answer questions and submit saliva (no urine). These wonderful docs and their staffs are starting to make break throughs with this research which means hope for all of us. If not for us then for our children and grand children. It doesn't cost anything! The Children's Hospital Boston doc sent out a newsletter back in May stating that he has identified at least 4 if not more genes that cause IC. Once they figure it out they will know how better to treat this disease and hopefully prevent it.

Keep the faith!:angel:

Pam

[wday]

What started my IC my gyno put me on the birth control pill that skips your period so you only menstrate every 3rd month after about 6 month on this I started having IC symptoms.

[pyrodruidess]

I have always had nocturia and sensitivity to long car rides. Last year in early March is when the flares started right after my miscarriage. I was in a relationship where I was constantly traumatized a bit cause he was to well endowed. I had several rips occur, so I believe it was strictly hormones and pelvic trauma that led to the onset.:rolleyes: one can speculate.

[bmendoza]

I have to say that my symptoms came out of nowhere also. I had only had one UTI im my whole life and that was when I was 20 and single. My next "UTI" was 11 years ago. I hadn't had any problems to speak of until that time. I hadn't had surgery, or problem periods or childbirth or any of that. I finally have a pleasant Uro. that tells me my I.C. is resistant. I guess that means not much helps. I reallly believe that if a person has a smart uro and figures out what you have is I.C. and starts you on elmiron you can get better much faster. I on the other had have had several idiots!!!

[prettyjazzyone]

In May/June of this year I thought I was going through peri-menopause because I am still having a period. I thought I was dying from all the horrible symptoms I was experiencing. I look back now, and would give anything to experience those symptoms instead of having IC. Hormonal changes = hot flashes in the night, surges of heat for extending periods of time (could last all day), nervousness (shaking), etc. I would wake up in the middle of the night and my back would literally be on fire. I was taking Trazadone at the time and told my doctor that was causing this. She said that cannot be it - she was right. In late June 2008 I got a UTI. The doctor gave me Sulpha and said that it might not work (it was a Free clinic) because they had not sent the urine out yet. I took the Sulpha and it didn't work. I called and then he prescribed Cipro. I took the Cipro and still had the symptoms of a UTI. I went back to see him and I was the one that told him that I might have IC. He said that's possible and said that the Cipro should have worked. I then begged him for a third medication and he reluctantly prescribed a medication that is in the Cipro family (cannot remember the name of it). He said this medication is expensive. I said that's okay - I paid $60.00 for it and still had the symptoms of a UTI, which actually was IC. I was right. Girls, I have suffered so much since then. I can no longer work because I'm in so much pain ALL THE TIME. I have no medical insurance so I just suffer!!! I am going to lose my car because I cannot pay for it without working. I will also lose my apartment because I cannot afford to pay the rent anymore. My pastor told me that he would help me with October rent, but then after that I fear being homeless (I have no family) and very sick. I also have vulvadynia. I've had several flares that keep me in excruciating pain. I've gone to the emergency room twice and now owe them a $6,000 bill that I cannot pay. This disease is so debilitating and I now see why so many women become disabled and unemployed!! I've been severely depressed and some days do not want to take a shower. I've always worked and not being able to work anymore has caused me severe depression!! Each day that I awake, I either have severe bladder pain or vulvadynia. For those of you that don't have vulvadynia (be grateful). It really messes with your mind. I had it all day yesterday and it feels like you have several knives being inserted into your vagina!! I thought this was part of IC, but have learned that it separate and apart. I've only had IC for 2 months now and can no longer work, am losing my car and possibly my apartment. Sorry to sound so glum, but this is the reality of having IC. Today, I woke up with vulvadynia, but it did not last all day. I'm now at the library - no computer at home. I had to get out of the house because I live alone and it's not good to be home alone and so depressed (frown). I'm not sure what caused my IC, but I do agree with the other lady that said it happened after her hormones were out of whack. I no longer have those hormonal symptoms, i.e., sweating, night flashes, burning back. But immediatly after they stopped, I then had IC. I also have only been getting 3 hours of sleep each night because I get up 7-8 times to use the bathroom. This disease is so AWFUL and debilitating!!

Thanks for listening. . .

Esteva

[SharonA]

I am so sorry that things seem to be spinning out of control. I think it would be a very good idea for you to seek some help in dealing with every thing you are going through. A therapist or counselor is trained to help you deal with your emotions and what sounds to me like depression. Please find someone who can help you. You mentioned your Pastor. Your church may have someone on staff who can do this. If not, talk with your Pastor. Many Pastors have training in counseling.

This is a link to the Drug and Patient Assistance information available on this site: http://www.ic-network.com/drugassistance/

This is a link to the information about disability available on this site: http://www.ic-network.com/disability/

Have you been following the IC Diet? It really can help you discover what foods/drinks may be triggering some, if not all, of your symptoms. Here is the link to that: http://www.ic-network.com/diet/ Pay special attention to the elimination diet section. It does a very good job of explaining what role your diet can play in your health. Please, if you haven't already begun this diet, do so. It really can help.

Also, many here, including myself, have experienced pain relief from taking Amitriptyline (Elavil). It is one of the $4.00 medications available at Pharmacies. Talk with your doctor about it. You can find information on it along with other medications that might help you here: http://www.ic-network.com/handbook/oral.html

I hope things begin to get better for you very soon. (((Hugs)))

[ICNDonna]

Esteva:

Please make an application immediately for state assistance. They may try to discourage you from applying, but do the application anyway. It sounds like you would qualify.

And you can also apply for Social Security disability. It may take a while, but some with IC do get approved and that should help as well.

And, as Sharon suggested, get some help with your emotional health.

Sending healing thoughts,
Donna

[stormchaser]

I know exactly how I developed this.

I seriously believe that this is how I acquired my IC. It was during the 2004 summer olympics and I was making fun of the olympic racewalkers with a friend saying how goofy they looked. Kinda like they all had to pee really bad and were trying to hold it in while racing to a restroom. I sang the Detrol theme "Gotta go, gotta go, gotta go right now." We laughed about this so called sport for quite awhile along those lines. Later, I said to my friend, "We're horible. I should not be making fun of these racewalkers. I'll probably wind up with some bladder problem and have to take Detrol some day.....

talk about karma

6 months later my formerly awesome bladder suffered it's first UTI (two days before taking my GRE's no less) 3 months after that my second UTI, and 2 months after that my 3rd... but wait, no bacteria. This was followed by a summer of much running back and forth to doctors to rule out everything else. Trips to the bathroom every 15 minutes and wanting to tear my hair out. Then being scoped wide awake at 4:30 in the afternoon with no sedative, anesthesia, etc because it was late in the afternoon and there wasn't time for that stuff. I mean the urologists office was closing at 5. And FINALLY being diagnosed officially that evening before I left for graduate school.

But it all started with the Racewalkers... and I have subsequently discovered that running to a restroom in the "holding-it-in" manner like the Racewalkers IS worthy of being an olympic sport. lol :angel:

[SharonA]

stormchaser...I love your sense of humor. As my husband always says, irony can be so ironic sometimes. :lmao:

[Claredale]

I can just hear the interview now for the winner now. It all started with IC and the frequent trips to the bathroom! LOL! London is 4 years away!

[ICNDonna]

I think there should also be a "restroom locator" award --- I know I'd get the gold for that one!

Donna

[Claredale]

Well, I don't know about that! You have had longer to "train" though! It does seem like I have a 6th sense on where the bathroom is. Hubby or friends will be asking, and I am already heading in the direction.

[statesboro]

I don't know what caused me to have IC. Of course, we should all realize a true cause has not been identified so far. I did not have any surgery back then. Ok. I had never had a UTI before. Oh! I have had a couple of UTI's since then. (found because I had to urinate in cup) Hey! I am a male; therefore, I was not having any female problems at all. Smile! ... God loves you.

[statesboro]

I just read your message on here. Yep! Oh! I just wanted to let you know that I never complained of pain. Anyhow, the urologist did the cystoscopy, or whatever, and said that I was having IC. By the way, I ended up seeing the picture of my bladder later on. It was not looking good. I don't like the name Painful Bladder Syndrome. Oh, well! That will be all now.

[bmendoza]

dear Redhead, I was thinking the other day after I read the posts in this thread if it could be possible this thing could be exercise related. I used to love to do aerobics, especially step aerobics. I had done some sort of that exercise since my daughter was little. She is now 28. I also had just started jogging about 3 miles a day and was in the best shape of my life when this crap hit like a rock. Just thought I would let you know there is more than one of us out there thinking like this.

[monica78]

I have had several utis before I was diagnosed and a couple since then. I was big into exercise until about 2 years before diagnosis. My family is of Irish descent.My real hair color is brown. I wish we could pinpoint the connection. No other member of my family has bladder problems. I also have endoemtriosis and IBS but i was diagnosed with IC first.

[britestrs]

Hi Everyone,
I wanted to introduce myself and to thank you in advance for lending an ear. I am grateful to have found this support group. I was diagnosed with IC in 2000. I have been having a really hard time over the last year I would say. My trouble is constant buring and lack of sleep from getting up in the middle of the night. Thanks again and look forward to being any kind of support myself. :)

[boojazz]

I traced the beginnings of all this mess, to one night from eating African food. My boyfriend ( now hubby ) and I had driven to Milwaukee from Chicago, being spontaneous. Immediately after eating this food I was running to the bathroom having the worst diahreah ever. So much for being spontaneous...

I had been diagnosed with Irritable Bowel when I was younger, but after this my stomach was not the same. I was back and forth to the gastro doctor. I had a colonoscopy a bunch of tests run etc. Nothing was found. Because my stomach was so bad and uncontrollable, I became extremely self conscience. I'd get worked up, worrying about going out, being social, etc. Because what if I were to get sick...thus began major anxiety. Of course, getting all worked up made the symtoms worse.

I started holding my bladder at times, because oddly, it eased my irritable bowel symtoms. Can anyone relate, or am I mental? I'm sure this didn't help my poor bladder. I started having symptoms like a UTI, but when tested, nothing was found. I was given antibiotics after antibiotics. After a couple rounds it seemed to clear up, but then would come back again.

A couple years ago seemed to be the most stressful in my life. Anxiety just consumed me. I began drinking way too many martinis and vodka lemonades, especially on an empty stomach. Not smart. I tried to get some anxiety meds to help and finally after several tries I was put on Lexapro. It helped me big time with anxiety. I thought I would help clear up the system if I drank tons of cranberry juice, ate yogurt, etc. Little did I know everything I was doing was hurting me more.

After going to a couple different doctors, when I started peeing like Sea Biscuit they gave me pyrelle and sent me on my way. Then finally in February I was diagnosed with IC. Not happy, but nice to finally have some answers! So I can say, without a doubt stress was the waved that crashed this sail! I see that many of you are out there that struggle with anxiety and depression, along with IBS. How many have gotten on medications before being diagnosed with IC and how many after, I wonder?

[Janette Rass]

:hi:Hi So many different answers to the question. I'll thrw another into the mix. My Mom always has said that if she added bath bubbles to my bath I got a UTI, til she figured it out & she stopped. I don't remember having more than 1or 2 b4 I got IC. But I did get a rather dramatic Herpes infection a few years B4 I was diagnosed. First i though i had the Flu, overworked single mom & all that. But then it got scary I couldn't seem to pee or do a movement. Off i went to the emergency room. The Dr says what is this spot? I say an ingrown hair? He says I don't think sooo. I say I've had the same boyfriend for 2 years. [well we won't get into that] Anyway bottom line is, i have to teach my bladder that to be empty is normal & how you do that is with a catheter full time. later you learn to self catheterize. I am sure I got IC from this. I think I must have introduced something into my bladder that started the IC, I don't know what. But it wasn't long after that, that I started having IC symptoms. My Mom & I now feel that with the info we have that my Grandma had IC but it was never diagnosed, so I definetly have a predisposition for it. So who's to say but I'll always wonder. I guess i'm like so many other IC'ers out there always wondering, hoping that if we find out what caused this horrible, debilitating disease that we will find a cure for it! Great Big Hugs Janette:cat:

[tahini16]

IC is an autoimmune disease. We all have it because something in our bodies is messed up. It just so happens that it happens to our bladders. The body fights against itself leading to our fun problems. I know they don't have a 100% certain reason as to why we have this but if there is one thing they do know, it's that it is an autoimmune issue. You don't get autoimmune diseases from eating certain food, taking baths, wearing clothing that was washed in a specific soap, falling down stairs, having too much sex, or anything like that. It's a problem with our cells and bodies. The major thing many of us have in common is the fact that we have all had UTI's. (or have been treated over and over again for UTI's) Who knows. Maybe we will never know in our lifetimes. I honestly don't care. All I know is I have a lot of issues I've never had to deal with but I think I'm doing a damn good job dealing with them now. What I do to help my future and deal with the present is what is important. How or why this happened to me is not important anymore. The focus shouldn't be on why we have it but how can we fix it.

[annegirl]

I agree with what you say, its an autoimmune disease. For me it started when I had my hysterectomy, two weeks after the surgery I had a UTI and had problems ever since. That was 5 years ago, but the ic really became a problem a year and a half ago. I have'nt had caffeine in about 5 years because I knew it did'nt agree with me but did'nt know why until I was diagnosed in Sept 2007.

[Jme]

I had a hysterectomy for pelvic pain (prolapsed uterus) thinking it would cure my never ending back/pelvic pain. Dr. Doggweiler rolls her eyes at this because she feels I was misdiagnosed. At one point I was put on progesterone and went from bad to WORSE. My bladder was throbbing to the point that I could check my pulse just by focusing on my bladder.

I have more red headed family members than I can count but have brown hair and dark skin. During my hysterectomy I had so much blood loss that my hemoglobin dropped to half my pre-surgery level and was asked if I had red heads in my family?

I have a history of kidney stones (4) but felt as if I had a rock solid bladder.
I don't recall a bladder infection prior to my dx of IC? I did suffer a kidney infection due to a kidney stone that landed me a couple of days in the hospital for IV AB.

I get a horrid bladder infection every single time I fly?

Even when I was seeking treatment before my hyster I had mystery low grade temps and still do...I have one today.

Stress is a huge problem for me. I think everything should be done one way...my way.

Here's to a cure!!

[Pam39+]

I also agree that this is an autoimmune disease. Anytime your body essentially attacks it's self it qualifies as an autoimmune disease. I however had one UTI as a child. I started having symptoms long before my uteral ablation but they were very mild. Once I had surgery I did develop an UTI and the IC hit full force. I was then diagnosed with it. I do agree that focussing on it does not help however I do think that we all need to do our part in participating in all the studies that we can. I also know without a doubt that IC (at least the kind I have) is genetic as my mother and daughter have it as well. With this being said I encourage any of you that have knowledge of another family member with IC to please participate in the current studies going on. It only requires you to spit in a container and/or pee in a cup(something we all have perfected at this point:smile tee). Your postage is paid for and you don't have to travel for these particular studies. We can all sit here and wait for someone else to do something are we can choose to be as proactive as our health allows and participate in finding the solution. You can find the links to these studies here on this site. Even if you don't have a relative that you suspect has IC there are still studies you can participate in.:angel: JME I also run an unexplained low grade fever. There use to be a thread about that. I am going to start another. I'm curious to see how many of us run a low grade fever.

[sully02]

Mine started when my stess stoped. I spent a very, very long time under stess. I mean I had a clinical deep depression among a lot of other issues. But, mainly my job. I left my job last April and and the stress stopped but my symptoms became really, really bad for IC. It took going to my gyno, family Dr, and finally my first uro. He said I had a good bladder, after doing a cystoscopy and gave me over active bladder meds. I did have frequncy but OAB meds , which I had all kinds of side effects from still did not do the trick.
I went to an IC support group meeting and I found a wonderful nurse that has been doing IC research for 15 years. She works in the same office as the uro I first went to who really just blew me off. Thank God for her. She gave my the PST and I did the questionare. She was sure I had IC and hooked me up with a different Dr in the same office. That makes me so angry that the first uro did not give me those tests or even have me talk to the nurse. From searching on the internet I thought I might have IC and my family dr did too, he sent me to the uro. It is sad that we have to beg for a diagnosis. Thanks to this wonderful board I have a lot of information and back up.

Anyway, to answer the main question here. I am pretty sure that all that stress irratated my bladder,( I had some symptoms before but never pain)
I am 60 and have been on hormones for 10 years. I am trying to wean off of those but they might have contributed to the IC. I have had a terrible menopause. I think when my body calmed down from all that stress, my bladder did not have all those hormones like adrenaline playing defense for it and it just reared its ugly head.

Right now I keep getting a yeast infection or something like it. It could be vulardynia. My whole vulva area is just raw and it itches and burns and when I pee it feels like it is hot. I did take diffulcan which seem to make it stop but then it comes right back. In my whole former life, I think I maybe had 3-4 yeast infections, tops. I am really discouarged about this new symptoms.

Thanks for all of your help.
Sully



meds
cystoprotek
prosed ds
hydrocoden
valium suppositories
prelief
estrogen cream ( started taking that because I was weaning off my HRT and my nurse thought my sore vulva was from vaginal dryness)

synthroid
blood pressure meds
zanaflex

I feel like a local drug store I have so many meds and I am only 60!

Please excuse any mispellings as I can not find the spelling feature on this site. If anyones knows where there is one I would really appreciate it.

[Freckles]

I think antibiotics has something to do with it. I had a lot of bladder infections growing up and can remember the doc always calling in my meds. He knew that I always got the infections so most of the time I never even went in, he would just call in the meds. I really believe that my IC started when I was a child and I was taking antibiotics at times when I really didn't have an infection.

I also believe that stress plays an enormous part in IC. I remember when mine started with a vengence at about 38 I was having marital problems, had small children and boom there it was all the bladder problems that I experienced as a child only 100 times worse. I forget to mention that I grew up in a very stressful household. My father was an alcoholic and my mother was the best woman I have ever known. My father was terrible to her and since I adored my mother it was very tough on me. My symptoms got better after I left home and then returned at 38.

I have had it now, unrelenting for 11 years. I have my SS disability interview at 2 today and am scared to death. I've been out of work for three years and all my savings are gone. I don't know what I'm going to do if I get denied.
Pray for me please.
Karen

[prettyjazzyone]

Hi Karen,

Please let us know how the disability interview went. I'm in the process of applying for it right now. Is the reason you haven't worked in 3 years due to IC? I sure hope that it went well. Isn't it amazing how IC can totally rearrange your life. I lost my townhouse by the beach and the ability to work due to IC. I'm currently living with my brother (who I don't really know). I used to live in Playa del Rey, CA and now I live in Fresno CA. He told me that he wants me to find another place to live by April 15th. I've only been here 1 month. I'm in pain EVERY DAY. He wants me to find a roommate - most people don't want a disabled roommate while they are going to work everyday. I feel so hopeless. I used to be a productive member of society.

Let us know how it went. Also, is it hard to get them to believe you're disabled because most people are not familiar with IC? This is a question I'm sure a lot of us would like to know.

Esteva

[purpletomorrow]

Mine started after 15 years of 8 to 10 cups of coffee a day. Was quiet for a while, then triggered by a September 2008 hospitalization for an unrelated issue.

[icbeauty]

i have 3 autoimmune diseases. IC, graves disease, endometriosis. my dad has an autoimmune disease (multiple sclerosis), and his father had an autoimmune disease (rheumatoid arthritis). 3 of my cousins on my dad's side have autoimmune issues as well.

i know it's all related. but i never had IC symptoms until 2003 when i was put on lupron to treat endometriosis. i started flaring badly, couldn't urinate at all, never found any bacteria, but there was always blood. there were times i had to be catheterized because i couldn't go even though i was distended and looked pg. it was an awful spring and summer trying to figure out what was wrong.

since then, i've had 2 cystoscopies, and both showed IC. they did the first to see if it was endometriosis in the bladder (i had some on the outside of the bladder), but they found IC instead.