View Full Version : please help me list popular theories of the cause
12-27-2005, 08:37 AM
I personally some of the most popular theories of a cause can fit into some categories...such as an injury to the pelivic floor/abdomen (surgery, child birth, PFD, accident)
Even multiple UTI's can dammage the bladder.
Bacterial infection not treated fully or discovered
What do you think are the most vital/popular (covers the majority) theories and do you feel that some theories can fit into categories?
Thanks a bunch for your help!!
12-27-2005, 09:41 AM
I believe mine was caused by my c-section birth of my son. But what about family genes? I believe some people think that this is heredity, although I am the only one in my family diagnosed with this disease?
12-27-2005, 12:45 PM
I honestly believe my IC came from all the UTI I had as a child and the surgeries they put me threw at such a young age in my life.
When I was diagnosed, I thought I was the only one in the family with IC. My mom has since developed it, and my grandmother also has had symptoms.
So, for me, heredity is a likely part of it.
But, I also had bladder surgeries (2 diletations & meatotomies) & multiple UTI's in early childhood. No bladder infections though from age 5-37. Developed IC at 35.
Quitting the birth control pill may have set it in motion. Taking Wellbutrin also might have triggered it for me.
What a mess, when there are so many possible causes in just one person!
12-27-2005, 02:45 PM
Not sure if this is a popular theory of what causes some cases of IC, but since I've responded so well to the misoprostal (cytotek) I am beginning to think that there is something to Norm's theory about the prostaglandin pumps in the bladder shutting down as a result of NSAIDs use, other antiprostaglandins (anthistamines, fish oils, etc.) or other causes of shutting down the pumps such as infection, autoimmune, etc.
Since my bladder's prostaglandins pumps have been turned back on I've been amazingly better.
12-27-2005, 03:01 PM
The PFD factor is one that may be part of heredity (thought just came to me) I mean my grandmother had a uterus prolapse and that is the closest thing to a connection in my family I can find.
12-27-2005, 03:03 PM
Good to hear Lori! Thanks all!!!!!!!
12-27-2005, 05:05 PM
I'm not sure whether this is similar to the prostaglandin thing or not, but I came across something on another site about a spongy tissue around the urethra that is responsible for G spot orgasms. There was a letter from someone with IC saying that some doctors now believe female urethral syndrome (and possibly some IC) to be a female form of prostatitis. I was shocked to read this, since my symptoms were so similar to my brother's 6-month long battle with undiagnosable prostate problems. Sometimes when I beginning peeing, I feeling very strong sensations around that area. Has anyone else run across this theory before?
12-28-2005, 02:24 AM
The only thing I've ever done that fits me into any categories, is childbirth. I think alot of my symptoms started anfter having my second child. It was a normal delvery, only about one hour of labor, one push, and that was it. I never realized that I actually had something abnormal going on until about a year and a half later (symptoms just started as frequency). I did however, have a misscarrage a year later. I had an ultrasound done in the hospital, and they had to fill my bladder because I wasn't prepared. The man left the room as my bladder was filling, and I was in sooo much pain. I'm praying that he comes back in to stop the fluids, and finally when he returned, I begged him to stop. Then he says to me.."really, I'm only half way finished." Maybe that had something to do with it??
12-28-2005, 03:15 AM
I think its all of the UTI's that I had as a teenager and young adult. But it could of started when I had a C-section with my first child at 23. I do know that after I was diagnosis with this, my Mom told me that she thought that one of my Aunt's had something like this when she was alive but of course, since this was in 1950-60's they didn't know what it was, so she was thinking it could of been IC. ( she told me her symptoms) and I told her it sounded like it was, so maybe its heredity? Who knows??
12-28-2005, 01:07 PM
Hadn't run accross that theory Stephanie but the oppositely stated one...prostatis or some prostatitis being male IC...I have heard that A LOT! You also would not be alone in the IC community with strong sensations in that area.
Thanks all for your help!
12-28-2005, 03:00 PM
I am finding it could be genetics also. My sister is starting to experience some symptoms. my mom just remembered my older sister had problems and of course she did also! A cousin may also have it!
12-28-2005, 03:07 PM
Those of you who believe it may be genetics are there any other Inflammatory diseases in your family? Thanks again all!
12-28-2005, 03:09 PM
About the possibility of a genetic link:
My mom had very frequent night time urination, and out of four nieces and nephews, two of them have noticibly "weak" bladders. My brother had a struggle with "nonbacterial prostatitis" (whatever that is) that led him almost to the point of suicide. (Now he's fine.)
I think the tendency is there, and in my case other factors (including a possible chemical accident with hair color) triggered it to become full-blown IC.
I think a bacterial infection is a trigger...normal UTI that went away that may have been symptomless and left the bladder inflammed. I think that might have been the cause for me.
12-29-2005, 02:46 PM
Katrina - Thanks for your help re: the urgency problem- when you say antispasmodics, which ones are you referring to - You mean Detrol, etc.
As far as where IC came from - I think mine came from Scarlet Fever when I was young - I have had bladder problems since young. Mainly frequency - and it has stayed pretty much the same - with more flare ups in college and recently (I think related to having sex more since I just got married, as well as in college when I became sexually active) - I also think I could have PFD since when I was younger I always had to go so I prob tried to push to get it all out (just a theory) - I NEVER has a bladder infection that I know of.
What do you think?
OH ALSO, My dad's sister has IC (always had probs as a kid too- but only recently has had pain- I think that is due to fibromyalgia though)
My Great Aunt also on my dad's side has always had bladder frequency, urgency, and occasional pain in her life. So....it is def hereditary- I also have a friend who has it along with his sister.
Anyway, does this all make sense? Also, I'm curious Katrina- how have you been doing with your IC - I read your story and I'm hoping you are doing much better with it- Let me know :)
12-29-2005, 06:00 PM
12-30-2005, 10:10 AM
My brother has been battaling prostitis which now seems to be more like IC so a genetic link yes (some autoimmune dysfunction in family - lupus) but then I had infections/dilations starting it. Or is it because we have a genetic problem to begin with that we ladies get more infections? All these people with genetic links - were we exposed to the same environment so is it environmental also?PeeVee
12-30-2005, 11:22 AM
My best guess would be heredity. There are children that have IC and not had a bladder infection, surgery, or had a baby.
My Mom has IC, my moms sister, 2 cousins on moms side of the family and I have it.
12-31-2005, 02:06 AM
One other thing I noticed from being on these message boards is that a lot of people have some kind of anxiety problem, or depression or bipolar (like me) - could that have anything to do with it - which comes first, the chicken or the egg?
12-31-2005, 05:19 AM
mine was triggered by a UTI
12-31-2005, 06:37 AM
Hi Everyone!!!!!!! :puppy:
4 years ago I was put on Clebrex. A year after, I started having stomach problems (Acid) and after that I started having ic symptoms. I have also had two c-sections. (1990 and 1992). I feel strongly that ic had to be triggered by one of these.
Thanks Katrina for all you do!!!!!!!!!!
:grouphug: mare mare
12-31-2005, 06:51 AM
I was never a depressed person before ic!! I was always a happy go lucky up-beat person. Having Ic has kept me from feeling like doing many of the things I would normally enjoy doing. I couldn't understand why I let myself get this way. There was a time when I didn't even know myself. My family noticed me not being myself too. My doctor had to put me on meds for anxiety and depression. Depression came first. Ic does change your life.
Thank's to Ic-network for a place to chat and vent!!!!!!!
A place where you are not alone!!!!!
01-01-2006, 09:26 AM
I think genetics with some kind of pelvic trauma, causes IC. The trauma could be a UTI, childbirth, any kind of surgery, use of catheters, etc. I know my trigger was a UTI in 1969. My daughter has recently been diagnosed with IC. That's probably the genetic part, and causes me great sadness!
01-01-2006, 09:35 AM
So you believe in a Genetic suseptibility ...making us more vulnerable somehow...and one of many triggers can bring it to full force. Makes sense...seems to be that way with Epilepsy in my family....3 people in my family have Epilepsy and we all had a trigger of some kind. In some cases Epilepsy is genetic only and in some cases it is just a likelihood...possible for IC too. Thanks.
01-01-2006, 10:07 AM
My Uro believes mine is from my bladder/ureter surgery.
01-01-2006, 10:10 AM
I believe mine came from all the uti's.
01-03-2006, 11:28 AM
I think mine is genetic (my mom and maternal grandmother may also have it).....
I also think that IC is an autoimmune disease since I also have Hashimoto's thyroiditis (an autoimmune disease)......
Lastly I think that IC is triggered by different things....
In my case I think that it was triggered after I stopped taking a prescription allergy medication... (my symptoms started within a month of stopping the med.)
01-03-2006, 11:38 AM
Thanks for the help! I really appreciate the different ideas all one thread....thanks a bunch everyone!!!!!!!!!!!!!! IC patients are so smart!:)
01-03-2006, 04:34 PM
my axniety/panic attacks started before i developed ic.
01-15-2006, 11:18 PM
My daughter who is now 16 had reflux from birth that was surgically corrected aged 5. The reflux also scarred one of her kidneys.
We now know she has protein in her urine which may be a result of the kidney damage. If she has a leaky kidney I am sure other substances in the blood that do not usually get through the kidney must also be leaking out into her urine.
Her painful bladder / IC whatever it is started during puberty and gets worse just before her period.
It is well documented that female hormones affect the bladder. I suspect that my daughter has a very high level of hormones in her urine which aggravates her bladder.
This constant cycle of pain has then led to an overactive pelvic floor and further pain.
I would be very interested to hear from anyone who has developed IC/painful bladder following reflux corrective surgery and anyone who has a scarred kidney and high levels of protein in their urine to see if their experiences are similar to my daughter's.
01-16-2006, 09:20 AM
Colin, I suspect it may be hard to find someone that that fits all of those things but I suspect that there are some people with scarred kidneys...some with high level of protein, and some with some who have had reflux corrective surgery.
I do beleive that in many cases of IC one thing leads to another...and that can make IC worse...and the process goes on.
In me things began with some surgeries around my pelvic musscles...meds for other conditions definatly made things worse (and in time my kidneys couldn't do as good a job with some of those meds).
01-16-2006, 04:34 PM
You have noticed that hormones influence your daughters symptoms. For many this is true. I just wanted to share that in my own case I finally learned that my thyroid hormones also were involved with my bladder symptoms. I found out that my thyroid was low and I was diagnosed with hypothyroidism. Make sure that your drs. do not miss this as they commonly do with many.
There are some excellent web sites that you can go to and be a detective, read every word, and then ask the Drs. if your daughter could have this. I did from the time I was a baby.
the web sites are www. thyroid.about.com
Hope you find help for your daughter.
01-16-2006, 04:57 PM
I am in agreemet also about the uti's being the underlying cause. And multiple surgeries as in my case. And possibly hereditary. I'm adopted so who knows, could definately be a family thing. Great question Katrina. Celine
01-17-2006, 02:57 AM
Thanks for the advice.
She had her thyroid checked recently and it seemed OK.
Her FSH levels were wrong for her age the doctor believed this was due to her weight being low and advised her to put on a bit of weight.
02-08-2006, 01:51 PM
I wonder about an auto-immune connection, at least in my case. I have rheumatoid arthritis, and now it appears I could be developing Sjogren's disease....my urologist has wondered if that is connected with the IC for me (underlying problems with my immune system, that is). I also have wondered about the possibility of malfunctioning nerves...nerves within the bladder itself (something like RSD, only within the bladder). I have nerve damage elsewhere in my body, and this pain often reminds me of that. So it makes me wonder.
And yes, with me, too, my symptoms clearly flare up when I get my period. So hormones do play a part in my case too somehow. And I think pelvic muscles probably contribute to the pain in the area now too. I don't think they did when this first started, but I think after years of untreated pain, the whole area has become tense and painful and it's become much more complex. I don't think I had PFD originally but I'd be willing to bet I do now.
02-08-2006, 01:54 PM
multiple uti's and surgery. Atlest that is what i think my cause is.
02-09-2006, 01:00 AM
I wouldn't even dare to speculate on this one. However mine was sudden onset during/following a confirmed (strep) UTI...unsuccsessfully treated it seems and then an endometrial ablation performed. (scheduled prior to all the hoopla.)
I do have other chronic conditions, so maybe they are connected in some way. I am of the personal belief that there is more than one cause for IC to evolve, but have nothing to substantiate that...it just seems there as many different causes as members here.
02-09-2006, 09:13 AM
Big thanks to all for participating in this!!!!!
I do believe the connection between us all is a dammaged bladder....either because of an auto immune response, multiple UTI's, injury to the abdomen such as from child birth, surgery, or other injury, yeast not treated well....and such. Do hormones effect that...yes...hormones effect a lot of things. Anyway thanks all for sharing!
(began with onset of puberty -- just an added confusion for a child). He's had multiple surgeries which may have caused it....
I know how he feels...I had my colon removed at age 12....a new one made by a portion of my small intestines. After words my pouch still had pouchitis (way better than I had been prior to removal of colon) and I had my first IC symptoms. It was too much for that time in my life.
02-11-2006, 11:24 AM
I've just started physical therapy - myofascial and trigger point release - and my PT thinks that if you have some trauma of some kind, it can lead to chronic pelvic pain problems such as PFD & IC. She says, if you damage other parts of the body and don;t get treated, you get chronic damage, so why not the pelvis/bladder.
I have two incidents that could possible have caused problems - one was wjhen I was in labour with my third baby. The doctor got stuck in a traffic jam on the way to the hospital and the midwife told me not to push (he wouldn't get the fee and she'd get into trouble) - can't remember how long he took to get there, but it seemed like forever. The second was when I fell off a garden wall onto my back.
She says either (or both) of these could set off chronic pelvic pain and bladder problems.
02-11-2006, 11:32 AM
I think ic cause in my case was from uti's and surgery.
02-19-2006, 12:22 PM
I had IC since early childhood, I believe I was born with it. Judith
02-19-2006, 03:43 PM
I am very surprised that no one had listed APF here!! It has been proven that IC patients have a toxin in their urine. How that toxin gets there is unknown at this time. My theory is that there is a genetic link to this toxin being there. But the toxin stops the cells from reginerating. So, when there is an infection or injury to the bladder, it does not repair itself in terms of the lining. It is important to note that the lining is what has been found to be defective in IC patients and that it is the lining which protects the bladder. I believe strongly that this research is on the cutting edge of finding the cure. I will find a paper on it that was sent to me and post it here.
02-28-2006, 04:32 PM
I think the frequent uti's, antibiotics, and heredity can play a part. I was also a swimmer in high school and always swam in heavily clorinated (or whatever they put in pools nowadays) pools. I think that may have played a part also. My family also took long trips across county when I was a kid and I used to have a job where I couldn't leave to go to the restroom without getting someone to cover for me. I wonder if trying to "hold it" for long periods of time could cause it also? Just an idea.
02-28-2006, 04:59 PM
I think it's a conspiracy of the government to keep us all down.
Ha! Just kidding. Who knows? I've got no relatives with it, had no surgeries, had no other diseases, nothing. I guess if I had to pick something, I'd say auto-immune, but then my opinion is only an uneducated guess.
I guess we've pretty much covered everything. The end!
03-12-2006, 03:31 PM
Well I have to put my $.02 in here. I contribute it to having 2 c-sections and I had a vaginal hysterectomy. I started getting symptoms after the hysterectomy though.
I also read somewhere that they either remove the bladder during the c-section, and then put it back, or push it to the side to get the baby out. That has to do something to the bladder. JMHO :)
03-12-2006, 06:19 PM
What about a nerve problem?
I saw a study in which they made rat bladders inflamed by irritating the nerves that go into the bladder. Is it possible that someone could have a nerve entrapment or irritation that also irritates the bladder?
I think it might be that in my case. Just a theory.
03-13-2006, 09:46 AM
Good theory Mrs Burschaman.....when I was first diagnosed one of the reasons my uro was convinced it was IC before he did the tests was because of my nerve implant for Epilepsy that he felt may have contributed to the problem. My Neurologist believed that so can some Epilepsy meds....and in many patients Epilepsy meds (anticonvulsants) help to treat IC....I sure like my Neuronitn...helps my frequency and my pain. I suspect that in many cases a nerve problem is part of the problem. Thanks for sharing that....I am not sure it made it to this list yet (I may have heard it all before but hard to think of it all at once lol)
03-13-2006, 03:58 PM
This list is very good. Mrs Burschman is very right about having nerve problems.
My Drs. have diagnosed me with peripheral nerve damage due to hypothyroid disease. My disease did damage to the motor nerves, autonomic nerves and sensory nerves. Peripheral nerves are very fragile and so I went years undiagnosed and untreated with thyroid hormones. Diabetes is a similar metabolic disease that causes nerve type damage.
My symptoms began early for me, before any infections, surgeries or other of lifes problems could come on me.
My Dr. would agree with those who listed genetics as a cause, because in my family we have 4 members who have IC and interestingly we all have been found to have hypothyroidism. We are thought to have inherited the lack of an enzyme that takes T4 and converts it into T3. T3 is the more active hormone and is ready for the cells in the body to use. We have found Armour thyroid to be the best treatment for us. My Mother, and two sisters have IC/Painful bladder and hypothyroidism like myself. We are in a genetic study now.
I have the sensory nerve damage in my hands, fingers and soles of my feet causing severe burning sensations. My Dr. tells me that the nerves fire off painful sensations as they heal. This buring sensation can keep me from sleeping well. If I were to have my bladder removed, they would also have to remove my hands and feet as they cause the same searing pains. I strongly feel IC is systemic as is the metabolic disease of hypothyroidism.
The good news is that my older sister who was very mild has recovered from all symptoms, and for her it has been a remission of 20 years. I pray that all of us can be in remission or cured like her someday soon.
God bless all, Silverfox
03-14-2006, 02:07 AM
Hey Mrs. Burschman. It's interesting you should mention that, as I have thought about the same thing before when reading IC studies.
Have you heard of Pudental Nerve Entrapment (PNE)? I'm not an expert on it, but from what I understand, it permanently damages the pudental nerve, which is linked to the bladder. People who suffer from PNE might have some symptoms similiar to IC, such as pelvic pain, but will be missing other symptoms, such as diet sensetivities. I'm not sure if it irriatates the bladder itself, but I have heard of PNE being misdiagnosed as IC before.
03-14-2006, 03:36 AM
Mel after having my son by c-section that was really rushed due to some problems, my IC started about 6 wks later. I always say this is where mine came from, cause before that I had no problems.
03-14-2006, 07:26 AM
I know I had urinary problems at a young age but also was on antibiotics till I was 7-8 with ear infections,strep and such.. Later in life I had several abdominal surgery's umilical hernia first then 3 D&C'S 2 laporoscopy's along with lipotripsy for a kidney stone after that is when my long lasting pain started.
03-15-2006, 07:22 AM
I've been reading assorted posts for a while now but just registered and starting posting myself. My 24 year old daughter has IC. I do not but I worry so much about her. As far as causes of IC, I was wondering about something. When my daughter was about 8 years old, she had pretty severe problems with allergies. Started on allergy injections and within 6 months or so, she began having severe joint pain all over. No one connected this pain to the allergy injections to begin with. Went to all sorts of specialists. She had casts put on her ankle and her wrist since they thought it was tendonitis. She was on crutches frequently. Made a few runs to the emergency room because of shooting pains from her ankles up her leg. Doctors had her on pretty large amounts of Motrin for quite some time. Went to the University of Michigan Pediatric Rheumatology Department eventually. The doctor said she did not have rheumatoid arthritis or anything of the sort. She suggested we stop the allergy injections since they challenge the immune system and it could cause joint problems. Within 6 months of stopping injections, her joint pain was improving. She was about 12 years old by then. She still has joint pain occasionally but it's not severe. Do you suppose there's any connection with all this and her IC? She was diagnosed at about age 22 but she had symptoms for a couple of years before that. Anyone else have joint pain, allergy injections, etc?
03-16-2006, 07:57 AM
well, my theory is still genetics + auto immune :)
03-16-2006, 12:54 PM
i think its also interesting that so many of us have endo and IBS.....
i know when I was younger, I abused OTC medicines...I was young and stupid.....but anyway, I started having severe bladder pain after doing that one night. And...well from then on, I have had problems.
I wish i could say I dont know...but in my case, I know when it all started :(
theres nothing in my family for IC or endo:( But I have always been less than healthy...even before my intentional self-destructive habits...
Im lucky to just have what I have!!!! But for me, I have noticed it got a lot worse after losing my preganancies, and getting DXed with the endo......
I thought for a few years I was doing well......so weird! because iin the 90's I had a uro as a teen...then 5 years go by with nothing...and then it comes again?
of course between marriage, and other things like panic attacks...maybe my bladder was on the back burner...who knows!!! but this is all so interesting...and iI cant wait until they figure us out!!!!!!!!!!!
03-17-2006, 04:38 PM
Just my thoughts on causes for IC and/or vulvodynia in no particular order:
Auto accident with strong impact, or childhood abuse, which can lead to Post Traumatic Stress Disorder, which can lead to weakened immune system or nerve disorder
Lots of sex after a long drought
Recurring or chronic vaginal infections (yeast, bacterial vaginosis, etc.)
UTI plus cranberry juice (with no history of UTIs) as trigger
03-17-2006, 05:34 PM
Childhood abuse??????? If that were the case, many more people would have IC! It really bothers me when people think it is related to child or sexual abuse of somekind. We have spent many years trying to get the medical community to see this as a real illness. I have also seen this postulated in a book once and it really bothered me. How could I make the lining of my bladder deteriorate?? I can't. It is a genetic PHYSICAL illness.
03-17-2006, 06:11 PM
I was editing my post when you posted, so please re-read it. I prefaced it with these are just my thoughts...based on my own very personal experiences and research and private correspondence with others who have suffered from Post Traumatic Stress Disorder due to various and serious traumatic experiences. I know that IC is a physical illness. I have it, physical proof of it, deal with everyday. But I also know that we don't know yet what THE cause of IC is and as I read the posts from everyone here, I can only conclude that there are multiple causes and for some maybe it is genetic and for many others it is not. There are many people who have a lifelong history of UTIs but do not have IC and others who have never had a UTI and do have IC. Every person who experiences a traumatic experience may or may not develop PTSD, and those who do develop PTSD may or may not end up with some other "REAL" condition. When I see a new doctor...GP, gyn, uro...I tell them of my history of PTSD and what caused it because it is important that they know that, but I by no means expect them to treat me for that as I have already been treated...I am there for my physical ailments, whatever the cause may be.
03-18-2006, 07:47 AM
Please understand that any big stressor to the pelvic musscles can increase your risk to illness in that area....I don't think anyone is saying that IC is not a physical problem and I believe many things have an impact on it that we are completely unaware of untill after our diagnosis.
Things that have effected some aren't even close to how others IC began and yet almost all of us can name something that seemed to begin our symptoms. The exception is those that feel that it runs in their family and they always have had it.
I suspect there is more than one aspect in many of us....just one thing by itself would not have done it but dominos fall and when enough of them do for us IC was the result.
"lots of sex after a long drought" doubt that had anything to do with me I was a virgin when I had my first symptoms. Just because I know it can't fit everyone doesn't mean I won't consider the possibility that it played a roll for someone......was it one of many aspects it someone...maybe...not one I give a lot to for IC unless there was more to it.
"Alcoholic beverages" Certain that had no impact with me either since I have never had alchohol in my life. None the less I do understand how some diets may increase the risk.
03-19-2006, 06:17 AM
Isn't this a long thread? Is someone compliing all the reasons? I believe I posted my cause before - 1 infection perhaps not properly treated (instigated by sex), then after awhile more UTIs, then urethral dilations and then whamo one day I knew something was really wrong and not an infection. Some autoimmune problems in family. There is so many new theories on that stuff, too. People claiming auto immune problems are either undiagnosed allergies (like to gluten) or weird bacteria. Therefore many reasons - genetic susceptibility with a trigger - sex,surgery,hormone fluctuations, drugs (legal/illegal), bacteria, developing allergies, martians (just kidding). PeeVee
03-19-2006, 08:43 AM
In WCG defense, Of course I don't believe that the act of child abuse itself causes IC, the trauma left in the wake of the abuse just may be what triggers it for some who are susceptible to this disease. I have read many IC'ers statements who have said their IC started after some very stressful period in their life. Child abuse of any kind is of course very stressful, and could very well be the trigger for some people. Many people carry that abuse with them for years, and years, well into adulthood, and some sadly continue to abuse themselves with their internal dialog, or destructive behaviors resulting from the abuse they received as children. I certainly can see how that type of stress could be a trigger, not a cause, but a trigger for some.
03-19-2006, 09:40 AM
Well put Sharon!
03-20-2006, 04:31 PM
Thank you Sharon, Katrina...I was feeling a little "ouch''...but this is the great debate section and I suppose that is to be expected when debating?
I understand that my thoughts might not be on the popular list, but as I am relatively new to IC (2.5 years) I can only respond based on what I have learned during this time, and my own thoughts and research and experiences on how I think I ended up with IC and vulvodynia. Obviously it is not everyone's experience, as I have read K's story and it is so vastly different from mine, but here we are with the same condition. Though we don't know the one common factor causing IC, if there even is one, I at least have some thoughts on why I have it, and that in some way eases my mind, rather than always wondering why why why and how?
03-20-2006, 04:50 PM
:) I agree...glad you did :) Thanks :)
03-21-2006, 02:32 AM
I believe IC has more than one cause too.
03-21-2006, 03:52 AM
I posted a little earlier in this thread about my daughter's allergy injections challenging her immune system. Here's my question. Some of you have talked about auto immune disorders. Would that include my daughter's circumstance? Don't know exactly what "auto immune" means.
WCQ: Just wanted to say my heart goes out to you and all the others out there who have suffered child abuse. Can't imagine any harder issue to deal with. Certainly it must affect every part of your being. Glad you're strong enough to bring the subject up. Don't let anyone take that away from you.
Katrina: My daughter's PFD therapist was very encouraging about IC research. She says there's a lot of research happening. Do you see it that way?
03-21-2006, 04:01 AM
so many theories....wish they'd find the answer.
In my case, I had chronic UTI's my entire life, so I'm wondering about that. Also - given I had an autoimmune disease (Graves Disease) prior to getting IC - I'm beginning to think perhaps it (Graves Disease) brought other things on that are autoimmune that I have as well.
Its kind of like fibromyalgia - no one knows what causes it - but it does exist. Interesting concepts and theories though...
03-21-2006, 07:28 AM
I believe there is a lot of research that still needs to be done but that there also is some good steps being taking to move forward. Right now the most accept theory sees IC sort of like an injury...which can come from infections, trama, surgeries, child birth, a mixture of things, diet, stress, and so on. I think information to all people in the medical community of what we already know to try to prevent things and find the individual cause in each patient to help guide treatment is step we need to take. I do think that with many the immune system plays some roll but it is not alone in what does...I think all apsects need to be researched so that is a lot of research! We could help things a lot right now spreading the word of what we already know.
She was about 12 years old by then. She still has joint pain occasionally but it's not severe. Do you suppose there's any connection with all this and her IC? She was diagnosed at about age 22 but she had symptoms for a couple of years before that. Anyone else have joint pain, allergy injections, etc?
On the auto immune....it is defined sort of like the immune system is in overdrive and attacks the body or things in the body like an allergic reaction. I have tendonitis in my wrists and my it flared up terribly around the same time my IC got so bad I finally got a diagnosis. I do believe that in many cases of IC the immune system does play some roll. In some the immune system plays a roll in how vulnerable we are to infections and in some for whatever reason...I do think that some of us have a hipper active immune system. The thing that connects us is the dammage to our bladder.
03-21-2006, 02:19 PM
Do fish oils shut the prostaglandin pumps down?
I thought fish oils helped us?
What else should we stop doing in this regard?
03-22-2006, 12:45 PM
I had recurring UTI's before getting IC, and there was a period of 2 years before diagnosed, when I ate a lot more hot and spicy foods. I'm wondering if that change in my diet might have added to the stress on my bladder....
03-22-2006, 01:46 PM
just befor i got ic, i had hemroids.
I got some witch hazel pads to soothe the area.
I think the witch hazal got up my eurthra.
03-23-2006, 10:08 AM
Either genetics or my true belief is in hormonal imbalance. Mine started when I entered Peri Menopause @ 27. That & all the chemicals & additives in the food & beverages we consume. I know I'm much better since I've limited my diet & drink primarily ice water (brita filtered), tropicana low acid oj, and sometimes other juice. (minute maid berry punch) it stinks being so discliplined but my insides function so much better because of it! I used to eat pretty lousy & the IC came along I think it was god's way of saying straighten up or else! LOL!!! :)
03-23-2006, 11:13 AM
Here is my own case theory in which I was a participant:
Auto immunue Disease - Psoriasis all my life
Recurring or chronic vaginal yeast infections
Recurring UTI's - increased with age
Spicey Food - I loved spicey the hotter the better
Poor diet - too much junk food
Alcoholic beverages - loved my wine too
The biggest trigger I believe was the laproscopic hysterectomy that I had last November. The pain that I had due to the UTI's plus the surgery resulted in Pelvic Floor Dysfuntion. The stress of all the pain and urgency just twisted my muscles and nerves into knots causing major problems.
03-24-2006, 10:40 AM
I believe my IC was caused by multiple urinary tract infections as a child. I had a labia adhesion that caused many UTI's as a child and I think this had something to do with it. My symptoms went away until I was about 20, when they flared up big time. I was in severe pain for five years before being diagnosed and given meds. I also noticed the onset of my problems at 20 when I had been drinking alchohol on a party bus at a wedding. All of the sudden I got horrible pain in my bladder and I almost wet my pants. From that day on, I was in severe pain every day with my IC. I just now am getting relief from Elavil and Elmiron.
04-07-2006, 11:11 AM
well i NEVER had bladder problems until after the c-section birth of my daughter.....more specifically the cathidar i had.....once the nurse took that out i never felt the same again.....it's kinda sad that such a wonderful thing like childbirth caused my IC
also i started drinking more wine sence the birth of my daughter, and i LOVED hot and spicy food when i was prego.....
so i think i abused my bladder when i was prego, the stupid nurses at the hospital somehow messed up the cath (they did it after i had my epidural and the nurse got mad b/c i couldn't hold my legs up....so another nurse had to try and hold BOTH my legs and one fell off the table and i almost went off the table with it....all this while someone was fishing around looking for my bladder :cussing: ) and those two factors together with my new found love for wine after childbirth all lead to my IC :hmm:
04-12-2006, 03:12 PM
I think IC might be caused by leaky gut syndrome. What happens is there is a tear in the lining of the stomach or weakening of the stomach lining. Food particles (very small) leak out of the stomach and into the blood stream. This causes the body to turn on itself and start attacking healthy cells. This is how an auto immune diease might start. So I think the body starts eating away the bladder lining.....I'm not a doctor though and I don't play one on TV either!!! :bunny:
04-12-2006, 03:22 PM
Sorry....I wanted to add this part of leaky gut.
Symptoms of Leaky gut syndrome / Intestinal permeability include: abdominal pain, asthma, chronic joint pain, chronic muscle pain, confusion, fuzzy or foggy thinking, gas, indigestion, mood swings, nervousness, poor immunity, recurrent vaginal infections, skin rashes, diarrhea, bed-wetting, recurrent bladder infections, poor memory, shortness of breath, constipation, bloating, aggressive behavior, anxiety, fatigue, feeling toxic.
Leaky gut syndrome is associated with the following conditions: Pay special attention to food alergies and sensativities!!!! That opened my eyes! We are sensative to food high in acids....... What does anyone thing?
Inflammatory joint disease / arthritis
Chronic fatigue syndrome
Food allergies and sensitivities
Irritable bowel syndrome
04-12-2006, 03:22 PM
There has to be something that we all have in common in some way or the other. What a mystery this disorder is!
04-12-2006, 03:38 PM
The way the symptoms will come and go, and then range from severe to mild to gone to severe makes me think its an autoimmune disease.
04-13-2006, 05:20 AM
I've been told I have leaky gut by naturopaths. Some of their tests seemed dubious, but I still think they are on the right track somehow. I think there are supplements out there for leaky gut, but who knows if they work. I am trying colustrum and lactoferrin now because I've seen that listed on some site that claimed it helped IC and I think it is supposed to help with leaky gut. I know I never was breastfed as a baby, and I think I missed that early colustrum and who knows if missing that had long term effects. I don't think it hurts to try that stuff, anyway. PV
04-18-2007, 01:30 AM
I was just thinking the other day about IC. I have the follow health ailments that constantly plague me:
1. Mild Eczema
Now eczema is eczema. Scleritis is like a psoriasis or an eczema in the eye. I wonder if IC is just like a form of eczema of the bladder.
Just a thought based on my ailments. Wonder if there is any connection between these three.
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