Cause of IC? Well, My guess stems from my own experience of course!

[ShePurzz]

I am going to have to start by saying that if I had any real knowlege of the cause of IC, I wouldn't be working and running to the bathroom every few minutes, but I would be headlined on the IC-Network page as a hero! So, just to set the record straight right from the get-go - these are only my guesses.

I was diagnosed the first time right after I had been through a surgery where the recovery room people removed my catheter before I woke from surgery. I didn't pee for almost 20 hours, even though I had received to complete bottles of IV solution. After threatening to phone my doctor at home at 5 in the morning, the nurse in charge came in and was going to just cath me long enough to 'drain' me. When she saw how much pee was in me, she was irrate! When she found out how long it had been and that I had requested a catheter the previous shift, she was even more upset and in fact, catheterized me for the remainder of that day. Soon after, I had trouble 'holding' it. I leaked, and I had terrible pain in the mornings. Unfortunately, this was about 15 years ago and the urologist I saw back then only told me that I had IC, and gave me a list of foods to avoid. No return visit, no understanding of what I had.. just don't eat these foods... Period!

Now, years later,. but several years ago, I started having very similar problems including terrible pain when I urinated. I didn't want to return to the 'helpful' urologist of 15 years ago, so I found a new one and he is a wonderful doctor! He did the hydrocysto and not only diagnosed a very severe case of IC with ulcers, but also did the biosy to rule out cancer. I am very blessed that he has treated me with elmiron, and DMSO treatments, as well as a few other meds for comfort. biggrin.gif

So, my guess is that a mistreatment of the bladder can proceed the onset of IC.

I also have asked and wondered if those women you 'wipe' back to front, could be causing bacteria and eventually this problem... but since it isn't supposed to be a bacteria problem, I guess that would get ruled out quickly. confused.gif

Just a little food for thought, but I would be curious how many others have experienced a surgery room "ooops" mad.gif before the onset of their IC.

[Alyson]

I never thought about it, but I now remember when I had my first child in 1998, they took my catheter out too soon and I couldn't "go." When the nurses later catheterized me, they couldn't believe how much was in there! I began symptoms after my second was born sixteen months later. I don't know if there is a relation either, but it is interesting . . .

[Kara]

I could go om forever about surgery and ER oopps.
Yoy are not alone

[ICNDonna]

Some years ago I took part in a mail-in survey. I never was given total results of the survey, but was told that there were many people with IC who developed it within a year or two following a major abdominal surgery. I was one who did have onset of IC within months following an abdominal (I call it abominable) hysterectomy.

Donna

[Sandy M]

I definitely think catheters have something to do with it. In my experience they have the worst part of any hospitalization. I just learned to ask for a pediatric cath and was never offered one before of course. Do you remember our moms, etc. who had "female surgeries or female problems" ? Bet there was plenty of IC and no help for them. I think "femal e type" surgeries definetly stir up IC, Sandy

[vm]

I started having IC symptoms within a month after my second c-section. I had NO symptoms before that...

[Elena]

I also had IC after abdominal surgery for my gallbladder. I wonder if it is the surgery, catheter or the antibiotics that they give you in such large amounts. Elena sbrase@cox.net

[Alyson]

My kids were born naturally(with an epidural) so mine wasn't caused by surgery. I did have a catheter and antibiotics though . . .

[ShePurzz]

WOW! Was I surprised to see the many responses and the many people with similar circumstances! After reading all the reply posts, I will add that I had 1 C-Section before the tubal pregnancy (that's the surgery where the catheter was prematurely removed and the IC problems started) but then nine months later had C-Section number 2, then only 15 months later C-Section number three. So, I had several surgeries where catheters were used without incident. The problem seemed to stem from the one where it was taken out and I was left for nearly 24 hours with an extrememly extended bladder. Thanks for your replies.. I really enjoyed reading them.

[darlene]

This should probably be a 2 part question. Nobody knows the cause of IC, but I'll bet the true cause is defective genes that make us vulnerable. Pelvic trauma, of any kind, might be the trigger that starts the disease process. This could be surgery, UTIS, catheters etc. In other words, only people with genetic defects would get IC from pelvic trauma. The great majority of people who have surgery, catheters, or infections, never get IC. They heal, we don't! The cause probably isn't the trauma/damage that started the disease, but may be the genetic problem that lets the disease process continue,instead of healing like normal people.

[sapp]

has anyone ever thought that it might be stress or trauma?
the reason i believe this is because when you are under alot of stress(could be infections,surgery,delivering babies,death in family,over-worked) your body produces more cortisol. i read that sometimes the extra production of cortisol can attack the weakest organ and sets up an autoimmune system were your own body attacks that organ. maybe all of us had the weakest organ in the bladder.
just my thoughts but it does make since to me.

[Diana]

Hi, I think it may be acute stress that helps bring this disease to the surface,I had a heart attack and bypass surgery in "97"age 37yrs,my youngest child was only 7 yrs old,so needless to say the stress was over whelming.It was then I first remember at the 6 week check,mentioning about getting up in the nite to use the bathroom,my cardioligist seemed concerned at that time, I suppose thinking it was 1st stage heart failure,but of course it must have been the I.c rearing its ugly head.Diana

[katiet]

I think mine was stress because it came about 2 weeks before the surgery to have my ovaries out. After surgery I felt fine until 5 weeks after and it came back strongly. Katiet

[icnsunshine]

I also believe that I got IC after having a hysterectomy. My surgery was in 1984. They left the catheter in because I could not pee after they removed it. The nurse seemed to be in a panic and hurried to put the catheter back in and after that I was sent home with it still in. I was in the hospital for nine days. Then when I returned to have the catheter removed, about a week later, I was sent home thinking life would be normal again. I could not pee and called the doctor for help. I was getting sever spasms and finally had to return to ER. Once again they put a catheter in and sent me home. About a week later the catheter was removed by my husband. This time I would go a few drops but the spasms kept building to the point of returning to ER again. They drained my bladder and I refused to leave with a catheter this time and went against the doctors orders. Setting the alarm, every thirty minutes to get myself up to drain a few drops until I could train my bladder to go normally again. A few months later I was forced to see my first uroglist, because I felt like I had an infection, but the test came back negative. Then I got to go through numberous dilations and silver nitrate treatments. Things seem to settle down some but my bladder never felt the same again. I really felt that it was just in my head. But then in Oct, 1995, after having normal sex with my husband, I was left in sever pain. I was waiting for the doctors office to open and to get help. I was then told I had an infection and was treated with antibiotics. But this went on and on and on. It did not go away. I was sent to see an urgolist and the rest you all have been through. In Nov. 1997 I was finally diagnosed with IC after having a Hydro. I have tried just about everything I have heard of and I now live with pain patches and other meds. I do get better after being treated with antibiotics. But not only do I believe the catheter has played a big part in my IC but maybe the fact that it was a latex catheter. Has anyone ever thought about this!

[Mal]

I think I'm with Darlene on this one....I feel that we also probably have some defective gene that makes us vulnerable to IC. But I also feel that UTI's, pelvic trauma, abdominal surgeries, reaction to antibiotics, invasive procedures etc... trigger those bladder symptoms and cause IC to surface.

In my case, I was going thru my first IVF cycle when a UTI occured. Well, I took antibiotics and got over that UTI and shortly after, another UTI occured, then shortly after that one, another occured. Three UTI's back to back, except after the third, my symptoms never went away...they just escalated from there with no infection found in my urine. It was an absolute nightmare, going thru fertility treatments in high hopes of getting pregnant to gain nothing but a bladder disease. I had also had many IUI's and a laparoscopy done prior to the IVF cycle. So, my events took place as....invasive procedures (IUI), abdominal surgery (lap.) in which I'm sure a cath was involved also, more invasive procedures (IVF), then UTI's, then the dreaded IC surfaced. I won't even begin to mention the procedures that I went thru to get an IC diagnosis. YIKES!

All these responses bring up some pretty interesting questions,though! Just thought I'd add my two cents. smile.gif

Mal <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[MelanieJ]

I agree with both Sapp and Darlene...My IC onset was after having several months of extreme stress and anxiety related to a very difficult situation I was dealing with. In fact, it was a matter of weeks after the issue was resolved that the IC started. I had also just started a sexual relationship with my now husband, which for a long time I thought might have been the trigger. Now I do believe that some kind of stress (be it physical or emotional) and genetic tendency is the key. I recently got my hands on my great grandmother's diary from the 60's. We had known for years that she had bladder problems, but after reading her diary, I'm convinced she had IC and that's where mine came from. She had references throughout the whole year about difficulty with her bladder...one entry said that she wishes they would figure out what was wrong with her "bladder and insides" some day. Poor thing!

frown.gif Melanie J.

[Sandy M]

Has anyone ever wondered if our grandmothers, etc, had to ever have catherization? I just wonder if IC was around when things werent quite so invasive!! Sandy

[Sandy M]

Has anyone ever wondered if our grandmothers, etc, had to ever have catherization? I just wonder if IC was around when things werent quite so invasive!! Sandy

[mayray518]

I guess everyone is different. When I got IC in 1992 I had never had any pregnancies, surgeries, etc. It just came out of the blue. I had only had one UTI also. Sure, I was under stress but no more so than usual. There are so many different causes of this horrible disease; I guess that is why progress on its cause is taking so long. My prayers to all of you!

[Mrs.H]

7 years ago I had a hysterectomy that went terribly wrong...I ended up hemmorraging and had to go in for a second surgery within 2 days to remove 2 liters of blood from behind my right lung.Most of my life I have had Scoliosis and Fibromyalgia...and about 50% of my life I have had a tremendous amount of stress, two family members dying within a year of each other ...etc etc but I recovered and that was that till a few years ago I got married and my sex life was consistent...then the Bladder Infections started one after another with blood mixed in...I asked my Dr if I could be getting them from my husband he said no when I got my husband to shower before sex things went ok... and when the bladder infections stopped I still had the symptoms...Urgency, pain , discomfort, itching , burning, so I requested to see a Uro...and he did a cysto and since then the pain has increased and so have the meds. When I got this I don't know...how I got this I can only assume...when will they find a cure...I hope very soon.
<img src="graemlins/banghead.gif" border="0" alt="[banghead]" />
SO HERE IS A <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> FOR EVERYONE!

[antoinette]

Hello there,

One day I started to noticed I had alot of pain in my bladder and I had alot of urge to urinate every 5 to 10 min. I went to the doctors and He then tested me for infection of the blader and that test came back that I did have an infection. I took some meds for that infaction and two weeks went by and still I had the same pain. I went back and the doctor tested my urine and it was clean and thats how I think I got IC. I think that my bladder infection was the couse of my IC.

Antoinette,

[dyno]

This is really interesting. In my case, I was in high school. Don't remember a lot about it now, but always stress in high school. But 10 years earlier when I was around 6 and 1/2 I had a massive infection in my pelvic area. They thought it was appendix but that ended up normal when it was checked after surgery. I got the records and there was infection around my bladder and female organs. They put a million units of penicillian in the cavity before they closed me up and then I remember the 40 shots of penicillian for the next 10 days in the hospital. I am allergic to penicillian(sp) now and really don't know if that incident in my life had anything to do with developing IC later when something else triggered it. I can tell you though that stress is definatley a trigger for me now.

[SueP1]

I think we probably are the genetic "sensitives" whose bladders can't repair themselves. I always felt mine was caused by 1st bladder infections, being treated repeatedly with antibiotics even when no infection was present, and long term therapy with nitrofuradantin.

[debbiehol]

Hello, I'm very new to this site but I would like to give you my thoughts on the cause of this life long unwelcomed visitor. I have suffered with Cystitis since 2 years old and I am now 38, so plenty of time to relflect on the problem. I have recently suffered the worst symptoms ever and have undergone a totally different approach to this problem and truly believe that YEAST and PHYCOLOGICAL factors are the main culprit. I know that the Yeast factor is somewhat controversial with a complete change of diet omitting Yeast, sugar, fungi and also the phycological point, but they do say that we tend to hold all our fears, worries, doubt and guilt inside us. I think who ever said this was speaking some truths. When we start to seriously analyse our lifes then some unsolved bits start to float to the surface. I only say this because I have tried every other road and this is the only one that I am making any progress with.
Thanks

[SueP1]

Please, especially anyone new to this site---Do not think you have psychological problems!!! Doctors have made IC patients feel that way for years. We don't need to do this to ourselves, too. <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[ICNDonna]

Sue, you are soooo right. Back in 1975 when I was diagnosed it was common in the medical community to consider IC as a "disease of neurotic women." It has taken many years and a lot of research to dispel that belief.

Stress and psychological factors may effect our IC symptoms, but they do not cause us to get IC in the first place.

I tend to think in terms of a trauma relation, since I had two major abdominal surgeries and developed IC soon after.

Sending healing thoughts,
Donna

[lyse3]

I think the abdominal surgeries must play a big role, seeing how many of you had your i.c. start after one. That is how mine started. I had never had any bladder problems, no uti's or anything wrong with the bladder except stress urinary incontinence. I had a bladder suspension surgery in late November, and in January I had the first onset of i.c. symptoms. I believe that somehow the surgery was instrumental in starting it, but obviously everyone who has a bladder suspension doesn't develop i.c., so there must be other factors probably genetic.

[redstonebef]

I had my uterus removed when I was 24 but I was having bladder and urethra problems way before then. The Dr. said very soon I needed surgery on it so I had that done at 26. I feel all the females surgeries made it worse though. They removed a ovary at 25. I have always been sickly and I just hate it. Hugs <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

redstonebef