New Research Theory - Very thought provoking!

[icnmgrjill]

Read the abstract below and take note of the underlined sentences.

Global approach to chronic pelvic and perineal pain: From the concept of organ pain to that of dysfunction of visceral pain regulation systems. Labat JJ, Riant T, Delavierre D, Sibert L, Watier A, Rigaud J. Prog Urol. 2010 Nov;20(12):1027-1034. Epub 2010 Oct 16.

OBJECTIVE: Analysis of complex pelvic and perineal pain.

MATERIAL AND METHODS: Review of the literature concerning the various types of functional pelvic pain.

RESULTS: Various forms of pelvic pain are frequently associated: painful bladder syndrome (interstitial cystitis), irritable bowel syndrome, endometriosis pain, vulvodynia, chronic pelvic pain syndrome (chronic prostatitis). Pelvic pain is often associated with fibromyalgia or complex regional pain syndrome (reflex sympathetic dystrophy). The pathophysiological mechanisms involved in these syndromes are all very similar, suggesting a triggering element, neurogenic inflammation, reflex muscular and autonomic responses, central hypersensitization, emotional reactions and biopsychosocial consequences.

DISCUSSION: The concept of visceral pain is evolving and, in practice, complex pelvic pain can comprise neuropathic components, complex regional pain syndrome components, hypersensitization components, and emotional components closely resembling posttraumatic stress syndrome.

CONCLUSIONS: When pain cannot be explained by an organ disease, the pain must be considered to be expressed via this organ. Chronic pelvic and perineal pain can become self-perpetuating and identification of its various mechanisms can allow the proposal of individually tailored treatments.

Copyright © 2010 Elsevier Masson SAS. All rights reserved.

I truly think that this is what has happened for SOME OF US who have the whole gamut of related conditions.. That there was some type of triggering event which led to neurogenic inflammation, then muscle tension as a response etc. etc. This theory has emerged in the past three years and I think it's one of the truly important lines of inquiry into solving the mystery of IC.

So, in my case, I think it all began in junior high with one of many possible traumas triggering this series of events. I swam in the same pool that burned me in my 30's so it could have been a reaction to the chlorine. I rode horses and had a few falls. I also remember falling and chipping off the tip of my tail bone. I also suddenly developed a pretty good S curve in my back.

At about the same time, I suddenly developed frequency and urgency not horrible and with no pain at the time. But I couldn't sit through class and was embarrassed that I had to use the restroom at school. Traveling was challenging because I always had to stop and use the restroom.

I had my first signs of food intolerance by 15 or 16 (oatmeal cookies). By 18, I had vulvodynia. By 21, I had had about a dozen ovarian cysts. By 25 I had more serious stomach sensitivities and a few migraines. By 27, I was diagnosed with IBS and had the first signs of my inherited tremor (freaky!). By 32, bladder pain and my diagnosis of Ic.

But, through it all, the word "sensitive" was consistently applied to my body. My gynecologist said I had the most sensitive vulva he had ever seen and it was because I was a redhead. My regular doctor said that I had a very sensitive stomach. I had drug sensitivities and ended up in the ER from drug reactions. I mean, OMG, the list goes on and on and on. I can smell a gas leak from one hundred yards.. easy and proven when I found one that the gas company later confirmed. And, as I've gotten older, new sensitivities emerge, particularly to foods. Go figure.

And, like so many of you, I developed the anxiety disorder... easily in my teenage years. It became more severe in my 20's. And, like many of you, IC impacted my life because I couldn't socialize like my friends. I couldn't go out to new restaurants without worrying about if I would react to food or, worse, having a horrible IBS attack after eating out (Sorry Paul.. yes I told you it was my period... but it was really the dang salad). When everyone was dating and having great intimate relationships, I was at home trying to go to the bathroom AND not wanting anyone to touch me. :::sigh:::

So, what I like about this is that it makes complete sense to me. It basically explains the struggles that I've had and, even more so, it completely and totally removes any lingering doubt that I had that I had, perhaps, caused this condition. I didn't. It's not my fault... and it's certainly NOT your fault. I get it now. I have a structure.. and I can now explain what happened.

The question then is what can we do about it? I think it's all about calming nerves down... calming down the inflammation, etc. etc. etc. This reinforces diet and avoiding caffeine and anything that will irritate your bladder that could trigger more inflammation. It reinforces the importance of pelvic floor muscle relaxation. It's about calming down, about reducing stress.. about respecting NOT fighting sensitivities. It's about caring for the body through good food, good stress management rather than abusing the body to trigger more tension and dysfunction. There's more of course... but I'm really glad to see this!

What do you think of this theory?? - Jill

http://www.ncbi.nlm.nih.gov/pubmed/21056381

[jvr]

I think it's spot on Jill. Makes a lot of sense to me. I agree, that it's very validating to read the research that science continues to uncover. Great abstract!

Jill

[jvr]

Hi,

I wanted to add that it will be quite interesting to see if the direction of IC research changes once the MAPP Study is completed and analyzed.

Jill

[purpleviolet]

I am participating in the Mapp study, but as I just started, I don't know exactly where it is going... there was a lot of psychological questions and an exam by a doctor (who unfortuantely is leaving my area for Florida)that completely understood where my pain was coming from and which nerves are involved which no urologist even attempts to do. I get blank stares when I say the pain is on my left but then can spread or switch to the right, but this woman got it.

[izazen]

Jill,

I have IBS, UC, IC,PFD, - the whole nine yards. I, also, fall into this group

I'm a "Highly Sensitive Person" - nothing to brag about - its just a statement of fact.

Things that drive me up the wall (at the movies last week the guy behind me was rattling an obnoxious popcorn bag) yet as I scanned the people around me - no one else was giving him "over the shoulder glances" except me. They were happily oblivious of the noise. This happens all the time - the slightest thing will un-hinge me. When I was a little kid if I heard a fire engine - no matter how far I was away from home - I would race to my house to be sure it wasn't the one that was on fire.

Exercise and meditation help although with the former I always feel as if everyone is staring at me - very self conscious, too.

[bob04951]

My hub who has IC and I were talking about why this happens. If ICers are so sensitive to preservatives and nitrates and such (as he very much is) could it be that all of the preservatives and chemicals we consumed growing up have had a negative effect on our bodies? Perhaps they have caused a multitude of unexplained diseases and illnesses that :rolleyes:are a result of our bodies or an organ rebelling against these things? Hmmm. Something to ponder.

[washingtonjen]

Jill, as a fellow redhead I wish I had a nickel for all the times I've been told "well you know you are just more sensitive because of your red hair and fair skin," I would be as rich as Warren Buffet! And it's been that way all of my life, sensitive to everything, the sun, chemicals, lactose, alcohol, caffeine, textures, and I've always been very emotionally sensitive as well. My life has been a series of traumatic, stressful events from the time I was very young, and my diagnosis of IC followed one of the most stressful years I've ever had. I live with a panic disorder that has to be treated with medication, and I'm a single parent raising a son with autism. So stress is something I'm intimately familiar with and have been most of my life. So the theory makes perfect sense to me, long term stress is known to be damaging to the body, and increases the risk of many diseases. Since the majority of sufferers of IC seem to be women, that makes perfect sense as well, because as women we tend to carry a lot of stress. Many of us are wives and mothers, and we take the majority of the responsibility for caretaking and homemaking often while working outside the home as well. If that is not a prescription for stress overload! According to my doctor, I'm carrying a great deal of stress in my pelvis, so I'm going to have to explore pelvic floor physical therapy to see if that can help release some of the tension in that area. I'm hoping that it will relieve some of the IC pain as well. Thanks for the interesting research :)

[darlene]

I am very disturbed by this theory! I will soon be entering my 42nd year of IC and I think I have learned a few things in that time. First, let me say, I don't think all of us have the same problem, with the same cause. some of us may have very sensitive bladders. Others may have PFD. Still other may have true bladder(organ) disease. I also have Crohn's disease and psoriasis. They are both believed to involve problems with the immune system. My bladder is shrunken with fibrosis and has glomurulations. Fibrosis is related to scaring. I also have fibrosis in my colon. My doctors think there is a common element causing these problems. They believe it is genetic. I always have white blood cells in my urine. My bladder is always inflammed. This is true bladder(organ) disease!!! I am happy that many IC researchers are trying to find out what causes these inflammatory changes . When whatever causes the damage to our bladders can be treated, the pain and pfd should disappear! I hope most of the studies and money goes to this area of research. Hit IC where it begins!

[CathyKi]

I wish someone would look into this. I broke, cracked and chipped my tailbone many times several years before the ic started.

[flychi]

While this description fits me perfectly, I consider the discovery to likely have a negative impact on us. Why? Because medical personnel can legitimately claim that it's in our heads and withhold medication. I just found this forum today and was elated to read that I'm not crazy, only to get to this study and find out that I am actually crazy. Americans generally view sensitivity as a BAD thing.

[darlene]

While this description fits me perfectly, I consider the discovery to likely have a negative impact on us. Why? Because medical personnel can legitimately claim that it's in our heads and withhold medication. I just found this forum today and was elated to read that I'm not crazy, only to get to this study and find out that I am actually crazy. Americans generally view sensitivity as a BAD thing.

I agree with flychi. This report could set us back and cause others to think our problems aren't really that serious, and set researchers off in the wrong direction in looking for the cause of IC. Darlene

[leelee88]

I totally agree with this Jill.. This is why I think I have done so well on Lyrica because it calms the nerves.. I still have pain but nothing like before..

[bladder]

I know I have had IC symptoms since I was a child...frequent washroom trips and anxiety. I remember when tight jeans were in and I still wore them...pain and all. Eight years of college/university = sitting through lectures and holding it! How did I do it? In my early twenties I had my first tailbone injury. Ten years later I shattered it after my first snowboarding lesson. It came back to haunt me during the birth of my first child. Seven years after my daughter was born I had woke up with what I thought was a bad UTI. That was when IC "officially" started. But wait a minute...go back a few weeks and there is more. My husband works on oil rigs in Northern Canada. He was coming back from a long day a few hours from home. He ends up stuck in the storm that ends up going down in our history books. It is -35 and he calls on his cell phone to tell me that he will have to stay the night as they can't get equipment out to rescue them until daylight. 30+ vehicles were caught in the storm that night. If he was to run out of diesel he would freeze to death. We talked all night, I tried to remain calm but was vibrating inside. I remember all the stress in my core to this day. I am sure that this event contributed to IC. I have always kept stress in this way. I would rather tighten all my muscles than vomit.

Sensitivites - I didn't have an allergy until I started working summers in a pulp and paper mill. I worked around a lot of chemicals and noise. After my first summer...UTIs = antibiotics = allergy to erythomycin= severe full body rash. Then I became sensitive to household cleaners. I could not go near bleach or down the detergent isle in the grocery store (I still avoid the isle to this day). Then came perfume, soaps, make-up, lotions etc. Since then I have had two more full body rashes that are completely unexplained. I was sent to emerg. only to be told it was an allergy to something and that I may never know what it was!

Sound sensitivities - I have always had the weird ability to hear silent alarms in stores. I hear and smell things others don't all the time. Gas, smoke you name it.

Hereditary traits?...The freaky thing is that my mother has had almost every symptom I have just explained. She has many more allergies, had OCD as a child, heightened hearing/smelling. I think she may have IC but not the pain symptoms as of yet. She also has IBS issues, endometriosis and migraines.

So in a nutshell I am saying that it all makes sense. I just have to work on the diet end and reduce some of my bothersome symptoms. I hate that I have to take so many prescriptions(as many as 10 at a time). I wish that my healthcare system supported a natural approach.

Yes, Jill, I know where you are coming from. :angel:

[Linda May]

Allthe replys sound very interesting what ever the cause I wishy they would find a cure soon.:pray:

[tara73]

I'm not sure if I totally buy into this theory. I do have sensitivites. I have been allergic to fruit most of my life, so when my doctor told me I had IC and fruit makes it worse, I was like how could that be when I dont eat fruit? I also wonder if saying this would make doctors think it is all in our heads, which when we pee every 5 minutes...that is not in our heads. Another theory is that it is an autoimmune disease, which I also have thyroid problems that are autoimmune. Also, there is hereditary. My family swears that this is what my grandma had. She spent her whole life self cathing and going to the bathroom every couple of minutes. I don't know if there was a name for it then but my family thinks I have the same symptoms as her.
So, I tend to think there may be a variety of things that can cause IC. Much more research needs to be done to determine a cause.

[bob04951]

Everyone is correct, in theory. What may have "caused" this for one person may be different for another. But who really knows? NO ONE.

It seems a common cause is trauma of some sort,whether it be physical, mental, emotional, but then you have to look at very young children who are diagnosed with IC. So what was their trauma? Being birthed? Dark hair, red hair, blonde hair, there is no ryhme or reason there. Even vegans have it. It is frustrating at best to even think about WHY, and perhaps that is the reason they cannot find a cure, because there is no WHY. There seems to be no racial barrier, although would be interested in percentages. Of course people of developing countries (or even our own) may never get diagnosed properly, so we may never know. Also men are so very misdiagnosed it is really depressing. Right away it is the prostate. And of course in many cases the two go hand in hand.

So would think that if researchers don't have a WHY there may never be a "cure" or a vaccine, or a treatment that works for everyone. Research is so essential, and we all should participate in any studies, questionaires, etc. The more ICers can give them, the more they have with which to work.

Sorry, just venting, and frustrated. And even more frustrated that there are so very many doctors out there who do not have an understanding and/or empathy and treat patients badly. Makes me cry sometimes to see so many who are dismissed by doctors saying that it is all in their heads or seeking drugs. So all have to stick together and not put up with any nonsense and don't let them dismiss us, we dismiss them. Perhaps if we "educate" those doctors who are uninformed, of course without being nasty, they will take it upon themselves to acquire some knowledge. We can only hope. :pray:

[Erica1836]

Also, there is hereditary. My family swears that this is what my grandma had. She spent her whole life self cathing and going to the bathroom every couple of minutes. I don't know if there was a name for it then but my family thinks I have the same symptoms as her.



I have this same thought. I have endometriosis and IC and my grandmother had frequent uti's - which who knows if thats what they really were and very painful periods. I'm pretty sure some of mine is hereditary.

[amaranthe]

This is so WEIRD to read this right now, because I JUST NOW finished posting to a thread about this very thing....(how I suspect that my IC and the numerous co-existing conditions are all linked, at least in my case.) This is the post:
http://www.ic-network.com/forum/showthread.php?t=68059

In my case, I have IC, Endo, Fibro, IBS, Vulvadynia, Vulver Vestibulitis, Stomach Ulcers, Lupus, GERD, etc. Consider the following:

1) My IC is problems with the LINING of my bladder.

2)The Endometriosis is problems with the LININGof my Uterus. (I had to have a total Hysterectomy due to the severity.) I also have severe adhesions

3) My Doctor's theory is that the Fibro is a defect in the nerves misfiring in the LINING of the muscles. (The pain feels like it is between my muscles and skin. (Sort of like when you are cutting up a raw chicken and peeling off the skin, you see that shiny, white, translucent, filmy stuff lining the muscles of the chicken. We have that covering our muscles, and that is what feels like it is hurting/aching on me.

4) The Vulvadynia problem for me is that raw, sunburned feeling from the outside to the inside LINING of the vulva.


5) My IBS is probobly a problem with the LINING of the intestines/colon. (Though, this one's just a theory on my part.)

6) I also have ulcers in the LINING of my stomach!

7) Then there's the GERD, which is doing a number on the LINING of my espohogus.

8) When my Gyno operated on me during the Vulvar Vestibulectomy for Vulvar Vestibulitis, the whole operation consisted of him removing some nerves in the opening of the vulva. He determined which ones were problematic by performing the "Q-tip test". He said all the nerves that had to be removed were in the.......LINING!

I also have Lupus, (partially determined by a positive antinuclear antiibody test, also with signs and symptoms. (Well, one Dr. thinks I have it, and one doesnt, and the third one thinks it is too, but isn't 100%.) Anyway, I am pretty sure that in my case, my body just keeps attacking my various linings. I think the linings are the missing connection for most ICers who have these same co-existing conditions that I have But, this is only my theory. However,I do find this research very, very interesting! :) Thank you for posting to share with us.

Sincerely,
Amaranthe

[cmclien]

I also find this article a little disturbing. Am I a sensitive person? Well yes, I can smell things no one else can smell, have non-allergic rhinitis, GERD, used to have IBS but its hiding now. I "feel" everything in my stomach, if I'm nervous I have diarreah etc. I remember as a child when my parents would leave or a night out, I would get throbbing in my bladder... weird huh?
BUT I also have white blood cells in my urine alot and my symptoms are worse when they are there. I have no allergies whatsoever though to food or anything else. My urogynecologist thinks there can be an autoimmune connection as I have autoimmune thyroid and possibly sjogrens. My rheumatologist thinks I have sjogrens though the blood work is inconclusive.

[Dean76]

I think the sensitivity theory is very true for me. I have always had anxiety and worry a lot. As soon as I take RX that clams down the nervous system my bladder problems go away until the medicicine wears off. If I get stressed the IC problems get worse. If I get sick or hurt any other part of my body my bladder hurts worse. I do wish someone can come up with a cure. Taking meds everyday has been psychologicallly tough.

[tracieg]

Jill,
I too have had several falls from a horse, tailbone was hurt about 7 years ago, anxiety,etc. I just wish someone would find a cure for this. It just seems to be one thing after another.

[darlene]

If doctors believe stress and anxiety play a large roll in IC, we will not be taken seriously. There will be less research, and our chances for new treatments will be greatly reduced. The cure will be "just relax!!!". I consider this theory a huge step backwards and believe it will cause us harm in the long run. I have suffered with IC for nearly 42 years. It has caused my bladder to shrink, caused fibrosis of my bladder lining, and white blood cell to be always present in my urine. like I have said many times , stess is very common, IC isn't. The cause is probably genetic and may involve the immune system. If finding the cause of IC was easy, there would already be a cure. I am very pleased that some researchers are looking in the right direction. An abnormal protein (APF) has been found to be present only in the urine of those with IC. Researchers are working on a way to neutralize the damaging protein. This, and research like it will bring us closer to new treatments that really work. The blame game of stress, anxiety, and tense muscles will never be the answer for those with true organ/bladder disease. That is why this theory causes me much distress!! Darlene

[vanilla]

Thank you Darlene. I want a cure, not an explanation!

[chowbaby]

Jill
parts of this post looks like you have read my life, sensitve nose and ears sometimes. I love to roller skate. I fell when I was a teenager, I am sure I fractured my tailbone-- I could not sit straight up for a long time-- it still bothers me from time to time especially winter time and sitting alot.
thanks for sharing
Lisa

[Rosiebelle]

Jill,
I was looking for something hopeful today and could have cried! This explains my whole life and absolves me of the constant guilt I feel for always being "sick"! I started with migraines at 12, IBS in my 20's, at 35 had a hysterectomy for endometriosis, and 45 GERD and at 50 IC. I am now 54 and wonder where it will end. My extended family thinks I make this up. My husband and children are very supportive. I hide it from friend's and people at work. I had a childhood filled with trauma and can see where the muscle tension started. Your suggestions to work on calming things down and understanding the bodies reaction to stress helps. Most importantly understanding that this is just how our bodies reacted to difficult situations is so empowering and relieving! Thank you!!

[icnmgrjill]

Rosie... I'm right there with you and it completely explains my life too. You are DEFINITELY NOT ALONE! I know it's not my fault... but I sure wish that we could control it and turn off that sensitivity!

Jill :)

[strobers]

I grew up in an abusive house hold where I always had to watch my back. I would get beat up for a myriad of reasons; most of them stupid. I never knew what was in store for me on any given day. I became hyper-vigilant and I still recall vividly hiding under the bed or in the garage in terror because I was terrified of being hit.

I have always felt things more deeply than most people. I can see a piece of art and cry. I openly sob when I watch certain movies. I am super in tune with people around me. People are constantly calling me up for advice on their boyfriend or their love life in general. I just have a knack for connecting with people on a deep level.

I've suffered from derealization since I was 16. I developed an anxiety disorder in my early 30's, which only is triggered when I feel "trapped" somehow. Trapped can be anything from getting lost in the woods to feeling like I have to pee, when there is nothing inside me like how i feel right now.

I was diagnosed with IC and then with CPPS because I am able to hold my urine for hours at a time. My main problem is the feeling of needing to pee all the time, that's coupled with a burning sensation. My IC started at the tail end of my Masters program. I had three *****y professors and they put me through the ringer. Two months later after worrying that I was going to get tinnitus from loud music that was playing in a restaurant, I developed it in my left ear. Last year I developed Pyronies's disease, which is a male disease where basically your penis becomes calcified and then shrinks a bit. For a man it's the kiss of death. Eventually a high percentage of men with this disease are not able to have sex.

I am one of the most healthiest people I know. I work out almost five times per week. I use my infra red sauna religiously. I went on a seven mile hike this morning feeling like I had to pee the whole time because I refuse to be defined by this damn disease. I eat super healthy. I know more about my diseases than the doctors I use to see. My house is a treasure trove of healthy things, yet as what has been pointed out, and I have to agree, and that is that a life time of hurts, disappointments, physical and emotional pain; a toxic world where we are continually assaulted with pollutants, coupled with an anxious sensitive disposition leaves us vulnerable to disease.

I would do anything to be able to somehow clear out my mental/emotional/physical/psychological garbage and fix me. I have done EFT, hypnosis, relaxation CD's/DVD's, Yoga, talk therapy, the gamut of self-exploration and personal growth, but the truth of that matter is that we are who we are. I live in the moment as much as I can, but I can't reach inside myself and ring out all the stuff that I know has triggered some kind of body wide inflammatory process.

Honestly, how so we fix something that is so complex?

[darlene]

Stobers, We can't fix something that is so complex by ourselves. If we could be less sensitive and get rid of all memories of physical and mental trauma and stress in our lives, we would still have IC. Please read up on the current research going on for IC. IC is far more complex than we wish to believe. I think we all have a strong need to understand what is going wrong with our bodies. Because of this, we turn to reasons we can understand, like sensitivities,stress,tension and anxiety. Most likely, IC has nothing to do with any of these things. Medical researchers are working very hard to reveal what has gone wrong with our bladders. So far, sensitivity and stress hasn't been a part of that picture. The discovery of the abnormal protein (APF), found only in the urine of those with IC, is very telling. The blueprint for all of the proteins in our bodies is our genes. We are different! It isn't how we see the world, or what others may have done to us, or even being sensitive to things physical or emotional. We have some sort of physical defect, even if it is not yet understood. The ICA has lots of information on current research. Please check it out. I know that by going against the grain, I am not making many friends here. It is not my intention to cause problems. I just makes me so sad to read about those who think they had any part in causing their disease. I know I didn't, and I have had IC for 42 years. Darlene

[icnmgrjill]

Whoa! Whoa! Whoa!!! Where did I say or even imply that we were causing our IC. In fact, that research study I cited initially says EXACTLY the opposite... that there was a precipitating event which triggered a neuroinflammatory process. The point here is that "sensitivity" is a very common thread among SOME but not all IC patients... and I think that the origin of that sensitivity could explain the underlying relationship between IC and these other conditions. Someone earlier said that they thought this was a condition of the "lining" of the bladder, bowel, etc... but I'm sticking with the neuroinflammation theory... though, for all we know, it could be both.

Darlene, noone here would ever suggest that we are causing our own IC. Strobers suggests that that we could be more vulnerable to disease for various reasons.. but he's certainly not suggesting that you or I caused our own disease.

Jill

[MamaZ]

... that there was a precipitating event which triggered a neuroinflammatory process. The point here is that "sensitivity" is a very common thread among SOME but not all IC patients... and I think that the origin of that sensitivity could explain the underlying relationship between IC and these other conditions. Someone earlier said that they thought this was a condition of the "lining" of the bladder, bowel, etc... but I'm sticking with the neuroinflammation theory... though, for all we know, it could be both.

l

This is a no brainer for me and makes complete sense for my case. It's something I've been grappling with since this whole mess started.
When I was about 7 yrs old I was climbing on top of a swing set and fell down with the bar between my legs essentially banging my pelvic bone/urethra VERY hard. There was blood and my GP at the time told my mother that it was probably nothing, that I had probably just broken my hymen. Unlikely, since I actually felt my hymen snap when I lost my virginity several years later.
I had a few UTIs post sex in my teens and also had AWFUL periods but the chronic UTIs/pelvic pain/IBS started right after I had a three-pronged stressful episode -- I was dx'd with HPV/dysplasia, depressed after breaking up with the person who knowingly transmitted the HPV to me, and then coming down with an acute illness that my GP coined a "non-Mono like flu" where I had severe neck pain, tremors, couldn't eat, severe headaches, lost about 10 lbs, and slept for like 18 hours a day. This lasted for weeks...I missed mid term exams in college, etc etc. And then I improved and slowly regained strength. But my body was never the same. How can I not consider the connection between the stress of that time and the neurological symptoms with the sensitivities and chronic pelvic/digestive pain that's been plaguing me some 15-odd years later??

[bob04951]

Find this discussion extremely interesting and think we should keep it going. Jill, can you do some sort of survey for us here so we can have percentages of when folks were diagnosed and what they think triggered it? Know the ICA has something similar, but not quite. Bob used to be able to eat ANYTHING and everything with no problem, the only thing that bothered him was spicey, but it bothered more his IBS. Physical trauma triggered his IC, although he was having some urinary issues prior (we just figured it was his aging prostate). Would be interesting to see what folks believe was their trigger in percentages. Thanks for your time devoted to this site, it has been a huge help to us. Jill, wife of Bob

[purpleviolet]

Anyone see that article in Uro Today saying IC IS primary Sjorgens improved by low dose cyclosporine? I was shocked any researcher would say IC "IS" one thing. Must be a mistake!

http://www.urotoday.com//manager/index.php?option=com_jentlacontent&view=enhanced&id=42123&Itemid=336U

[cmclien]

Hey Purple, I think what they are saying is sometimes people with Sjogren's have a rare symptom of IC (sjogren's can cause many symptoms not just dry eyes and mouth).
My rheumatologist who treats me for sjogren's (not sure I really have it though) says he doesn't see many of his sjogren's patients with IC but if you go on the sjogren's forum there are definitely people who have both.

He does say that this autoimmune disorder can attack the bladder as well as joints, tear glands, saliva glands etc etc. But the article is basically saying its kinda rare. I'm glad the treatment worked though which is kinda promising.

[cmclien]

I meant to also say I was put on plaquenil for my sjogrens and my bladder symptoms TOTALLY went away for a few until I developed an allergic reaction to the medicine and had to go off of it (bummer!). He said it probably effected the inflammation.

Hmmm might be interested in asking him about the cyclosprine but its a scarey drug and not sure I suffer enough to take it.