I Really Believe I Have The Answer!

[stephanie00]

I think IC is a condition that originates in the spine. All of the other problems, such as infections and sensitivities to foods come from the fact that your bladder is sick and therefore sensitive and vulnerable. Flare-ups from being too active or overstressed are actually due to the fact that you are stressing your back. Whether you have chronic back pain or not, I still believe that most cases of IC and related bladder disorders come from a spinal nerve in the lumbo-sacral region. Everyone should focus on posture and ergonomics if we are ever going to start curing people of this disease.

[megancolleen]

I think you might be on to something. My IC severely progressed after an episode of sciatica, and the bad flares I've had since seem to occur after my back is involved in strenuous activity somehow. I think the nerves there are definitely connected to my bladder problems.

[stephanie00]

I am so glad you mentioned that. I have sciatica too. The epicenter of my pain is at the right lumbar side. Since it is so central, I can inflame it by using my arms swimming, using my legs from jogging, or picking up something heavy....and I can look forward to a long night of feeling like I have to pee (even though I don't) and almost no sleep. I have had this for 5.5 years. I told the first urologist I saw about this back pain, which he dismissed, and spent most of the next few years of this thinking I was getting bladder cancer or working my way towards full-blown IC. Luckily, by not drinking alcohol or juice, and starting to address my back last year, I am able to live without bladder pain. Still, this thing will not let me sleep and I am too limited in what I can and can't do. It has severely hurt my quality of life. I still need to pinpoint where this is coming from and how it can be fixed.

[ICLori]

I think there is something to this theory. The lady urologist who wrote "You Don't Have to Live with Cystitis" believed very much it was a back problem that caused the bladder problem, and I read somewhere that when they did surgery to decompress - there was some lateral compression of L-5 or C-5 or something like that - maybe someone here has read about this and can quote it better - anyway, it immediately and completely and forever relieved the bladder symptoms.

But it still doesn't explain entirely why women get this more than men - unless we women are more prone to the type of back injury that would cause this? That could be. We are built different from men.

Blessings, Lori

[stephanie00]

I am glad you brought up Dr. Gillespie. She ultimately came to the conclusion that Interstitial Cystitis is caused by back problems. I think she said, to paraphrase, that the bladder can pick up on back problems long before there is any other sign of a back problem. My MRI's are negative and the sciatica and lumbar pain is totally something I can live with, but I became aware of the cause and effect relationship between my back and my bladder.

As far as men getting ic less often, well, that might be as simple as anatomy.

[kadi]

We could debate the causes of IC forever. Especially since we're all assuming that IC is one illness, which is debatable in itself... Careful though, there's some good info in the book you mentioned, Lori, but there's also some really questionable stuff too...
-----------------------------------------------------------------------------------------------
About Dr Larrian Gillespie, the author of "You don't have to live with cystitis": This is the current status of her license with the Medical Board of California, when I looked it up today...
"7 YRS. PROBATION W/TERMS & CONDITIONS.***CONTINUES TO BE SUSPENDED PENDING PASSING AN EXAM, EVALUATION, & MUST HAVE APPOINTED MONITOR IN PLACE.***"

Here is an article about Dr. Gillespie & her spinal surgeries, discussing the malpractice suits & the debate about her practices...
http://www.ic-network.com/newsroom/296.html
-----------------------------------------------------------------------------------------------
I don't know about all this. I had a bad car accident 10 years before I developed IC & had two years physical therapy for neck & back whiplash injury.
BUT:
Many many people have back injuries, but few of them develop IC. If it was a causal relationship, I think the orthopedists & physical therapists would be seeing a lot of IC develop.

[stephanie00]

Debate about the cause? I don't understand this. Do you want to get better or do you just want to accept your condition?

Your points are well taken but I was well aware that she lost her license and have also read the article that you were kind enough to submit. Our country is full of opportunists who bring other businesses down to make a buck, and on the other side you see doctors who enlist way too many patients to keep a certain lifestyle too. So, in Dr. Gillespie's case...I can't say what happened, but I don't think anyone can, except for her. I also think you will find that there are other studies being conducted testing this theory, it's just not mainstream yet.

In my opinion, her book is the best book out there on interstitial cystitis and bladder problems. After reading her book I couldn't help but see someone with a soul.

[dancemomof2]

I have read her book as well, but not really sure about her theories.

[Imustpee]

I have a bad back...been in P.T. and had accupunture many times..I also have very bad knees...I am in P.T. right now ( 3rd time in 4 years) to help my knees...

[stephanie00]

imustpee...very cute name! I was wondering if you could share what kind of back problems you have and what caused it. Thanks!

[Imustpee]

Steph...my back pain is muscular mostly...I have several times hurt my back moving band gear...and now it is easy to get it fired up...

[stephanie00]

what part of your back is hurt?

[ICNDonna]

I think it would be marvelous if we could find one single cause for IC and along with it, a cure. I do not, however, believe it is related to back problems. If that were the case, there would be literally millions more people with IC.

My own suspicion, and it's only my own --- is that those of us who have IC, have had it lurking in our systems since birth or shortly after. And it may take a traumatic incident, such as surgery, back injury, tremendous stress, to actually cause the IC to become active. In my case, my IC struck with fury following an abdominal hysterectomy (I call it the abominable surgery).

I would never consider spinal surgery without the recommendation of a reliable neurosurgeon and for a verifiable reason.

Donna

[stephanie00]

Hi Donna,

I never meant to imply that all people with back problems will get Interstitial Cystitis; just like some of us get a cold and others around us do not.

I also in no way am promoting that anyone run out and get back surgery. I will never get back surgery. Not everyone is the same, and I do not believe I need it. My back continues to get better and better from good posture (this sounds simple but it took years to realize what I was doing wrong), stretching, pilates, ergonomics, etc, etc... Again, some of this sounds simple, but it could be the types of jobs people have...not being conducive to their body type, etc...

As far as your theory, well that just may tie in to everything else I have been saying. Perhaps this is all from a nerve and yours was irritated from another point on the nerve pathway.

I too support the idea that IC is a complex problem that will be different for everyone. My intention and main claim is to find the common denominator. With your help and everyone's help, perhaps we can pinpoint this nerve, or maybe we will just find a common physical action that leads a lot of people to contract this condition....anything will help.

[Imustpee]

Left side low back and buttock....

[Leslye]

Hye Donna, My theory is the same as yours. For as LONG as I can remember I have always had a very active bladder even in high school. After the birth of my son(1st child)I went from having frequency to having pain also.(C-section) After many years of having frequency & pain on & off, not knowing what was going on. Being treated for UTI,S & bladder infections that I did not have,last year in July I was diagnosed with IC. Then after that, several months went by I was diagnosed with FM, Vulvadynia,& Migraines.Since the begining of this year I have had SOOOO much pain & problems with ALL of my conditions that it has made me a different person & changed my life. I am not able to work due to the pain,frequency.extreme fatigue & the medication. I do believe that a back injury or problem that brings on pain or discomfort as with any surgery & stress can increase your IC symptoms. People are very different & IC affects people differently. Some people can take meds & with diet control their IC,while others follow All the rules & still can not get a handle on their disease. We ALL have one thing in common & that is we have a Disease that Very few people know about or understand. That is why I am SO GLAD:) that I found ALL of you. I honestly feel that there is no wrong idea on what may cause IC because I feel that IC is caused by MANY different factors but we ALL pretty much in one way or the other have the Same pain,discomforts,& problems. Thank You ALL for being here & for understanding. Love to ALL!!

[kadi]

Stephanie,
I resent your comment about not wanting to get well. I DO NOT want to just "accept" IC. BUT as someone who has been through over 17 medications in 2 years, as someone who was ripped off by a doctor specializing in alternative medical treatments for $1700 out of pocket with NO benefit whatsoever, as someone who has suffered numerous side effects as well as the effects of IC, I AM someone who recommends caution particularly when it comes to spinal surgery.

I also am someone who recognizes when the Medical Board sanctions someone, it's for good reason. If you read the article instead of blowing it off, you would recognize the need for caution & understand why neither of the 2 major reputable IC websites promote her book.

Your remark was rude and insensitive.

[Silverfox]

Hey, I think what is being discussed here is very important! :woohoo:

Some causes of sciatica (a type of nerve damage) is having too little thyroid hormone! The treatment for that is to take a specific type of thyroid hormones at the right level. Slowly the nerve pain of sciatica can get better.
Also, stretching exercises can help also. Ask your Dr. about this.

Myself, I like the IC Dr. who explains IC as being like a degenerative nerve desease.

Back surgery is not the cure for IC, I agree stay away from back surgery. My Mother had back surgery for sciatica and it did not help. I took thyroid for my sciatica and do back stretches and I am now in an aroebic exercise class.

Finding the cause of the nerve damage will lead to a cure. Some believe that IC is systemic. I agree with them.

Because several of my close blood relatives have IC and syptoms of this kind,
my family is participating in a study by the U of Maryland. This is the study called Maryland Genetics of Interstitial Cystitis, the Magic study. It is hoped they can identify gene(s) associated witht the disease so they can develope medications that help people with IC.

Hypothyroidism was one of the questions. They are also taking blood an urine samples. We won't be told our genetic results but it is hoped that by looking at 5,000 US and Canadian families they will solve this big puzzel.

To be in the study you must have 2 blood relatives who have IC or bladder symptoms. My Mother, and my 2 sisters and I suffer with bladder symptoms for years.

The Dr. that is doing this study says he wants the answer to IC before he retires. Lets all support and pray for him, he has his work cut out for him and I know he will want to retire some day and just go fishing. Help him please! :help:

[Shalai]

I have a herniated disc at L4-L5, and I can always tell a difference where my bladder is concerned when I get adjusted by my chiro. I was involved in a car accident in '93, but my symptoms didn't really start up until the spring of '02. I can remember a couple of incidents though, several years before the car accident, where I had severe pain (it put me in the floor) that would only last for a few minutes (10-15 at the most), and then disappear as if it was never there at all. I would always think "uh-oh, UTI" but all tests were negative.

I do think the spinal nerves are involved somehow, because my symptoms always improve after I see the chiro. I will admit, I seriously considered back surgery, esp. when I had a go-round with sciatica. The surgeon I consulted, however, wanted to try the epidural injections. I had only one, and the sciatica was gone, but it seems that since then, I've had more trouble with the IC than before the injection. I've often wondered if the injection (either the placement of the needle or the medication itself) had a negative impact on the IC, causing it to act up.

Isn't it strange though, how IC affects so many people so many different ways, and what helps one, doesn't necessarily help someone else?

Sherry

[sleepyangel30]

Well, I put it this way nobody knows what causes IC. I think there are many causes we just don't know what it is.

[Cricketmk3]

Although I don't agree with all the theories doctors and patients come up with for the cause of IC, I apprecitate them trying to find an answer. I have never had back problems of any kind. I do have greater bladder pain when I lift things or over work my body, but I attribute this to strain on the bladder and small hemorrhages in the bladder wall. I wish someone would find a cause and cure for this dreadful disease!

[ICNDonna]

Sciatica can be caused by compression of the sciatic nerve. It may also be pain referred to the sciatic nerve from other parts of the body.

When I say I would not have back surgery unless there is a verifiable cause, it's because my husband did have back surgery for sciatica --- but it was because he had a calcium buildup inside his spine (spinal stenosis) --- and his surgery was done by a qualified neurosurgeon.

If you ask ten people at random if they have ever had back pain, I can almost promise you that every one of them will say they have. Almost every adult in this country has had at least a strained back at some time in their life.

Donna

[patricia1]

I am another not sure on the back thing. The only back problem I have is Scolosis. I have had it since I was 12. I believe that IC is something that lies dorminant and that trauma to the bladder makes it rear its ugly head. I had a emergency type of c-sect birth with my son and 6 wks later my troubles started. I never had bladder problems growing up while dealing with my rather bad scolosis. And again agreeing with Kadi the causes of IC are highly debated. No one knows for sure why some people get IC and others dont and there has not been one specific reason as to why we do get it. I would love for one specific reason to be found and then maybe a cure could be found. But I have found it to be highly debated between not only us but by the medical commuinty in part....

[MamaKay]

I can not speak as to the real cause of IC, but I can discuss the back issue. I have had symptoms of IC all of my life. In 1994, I had a small car accident but ended up in the Emergency Room later that day because I was constantly in the bathroom. This started my official IC journey. After several doctors and some failed medications, I tried a Chiropractor. I was taking meds prescribed by the Chief of Urological Surgery at UNC and was noticing some improvement. The Chiropractor showed my husband and me my X-Rays. His theory was that in my spine, I had some issue that was irritating the nerve to my bladder. His only downfall, he wanted me to give up my medication while he treated me so that he could prove his point. If it weren't for giving up the meds, I would have continued with his treatment. Needless to say, my husband is constantly telling me that the Chiropractor may have been right all along. 10 years later, I am still going to UNC, but have added Ulcerative Colitis and Autoimmune Hepatitis to my illness list.

Point of the story - we may never know the right choice to make when dealing with our issues, but if you find a Doctor you can trust, stick with him!

[lisamarie01]

I have bad lower back pain and im sure this is due to IC. I was in the hospital for a sciatica nerve a couple years back could never remember hurting myself just woke up that way, ever since i get lots of pain in my lower back

[ICLori]

I really like that we can discuss all the theories here and think about them. I appreciate everyone who offers any theory, and to be honest I think most of them at least if not all of them sound plausible to me. I think that there are dozens of different diseases/injuries that get lumped under the label of IC. I think some cases of IC are really PFD, some are nerve problems (like with the back or other nerves), some are maybe undiagnosed UTI's of some sort, some are endometriosis, some are Lyme, some are autoimmune, some are caused by trauma exacerbating some existing weakness...well I ran out of ideas but you get the picture. I think IC might have a whole bunch of different causes and maybe that's why research seems so difficult with IC. But it seems entirely possible to me that some cases of IC or irritable bladder might be caused by nerve damage in the spine or elsewhere. My doctor who is the primary investigator at Walter Reed for the Bion believes that the nerves are involved in some way in IC.

I didn't mean to cause a ruckus talking about Dr. Gillespie's book or anything. I read it a long time ago, I think before I was even diagnosed with IC and I didn't remember much in it to be honest except her concern that women were getting back injuries from running and other things that might be impacting the bladder and I remembered her tip about washing when on the toilet instead of waiting to wash on the shower for helping to prevent UTI's.

Blessings, Lori

[Silverfox]

Donna is very right about being very careful before you have any surgery on the back. Sciatica can be miserable and there may be several causes.

Having a low thyroid (hypothyroidism) does cause nerve compression on the sciatic nerve and results in pain. The compression on the nerve is due to the edema (myxedema) that is in all the tissues of the body. This compression as it passes through the hip can cause severe hip, leg pain and numbness in the foot.

Not long ago I asked just what nerves were damaged and he told me all throughtout my body. Inside my stomach at that moment I felt sick, and like I wanted to colapse because I didn't realize the extent of the nerve damage. It just seemed to great for me to handle, but then I keep asking what can I do to heal my nerves. I take vitamins and eat a healthy diet and I exercise in hopes that helps my blood circulate better. Time will tell, the nerves are delicate and heal slowly.

My older daughter is a vet and she treats dogs who are hypothyroid and have this kind of sciatic nerve pain. Her patients can't talk, but most of the time she can get them well and running again when treating them with thyroid hormone replacement. Her furry patients cannot tell her if they have any bladder symptoms. The owner should be able tell by watching for excessive peeing on the carpet....grrrrrrrrrrrr.... :bunny:

[stephanie00]

[QUOTE=ICLori]it seems entirely possible to me that some cases of IC or irritable bladder might be caused by nerve damage in the spine or elsewhere. My doctor who is the primary investigator at Walter Reed for the Bion believes that the nerves are involved in some way in IC.

I just wanted to reiterate that I think that the common demoninator with most cases of IC is going to involve this nerve, AND I think we will find that many people are contracting this condition from abusing their backs (whether you actually feel back pain or not). Some others may irritate this nerve at a different point along the nerve pathway (i.e. surgery, etc). My objective is to discuss the angle I am familiar with, because that is the only angle I can truly vouch for. My angle is that I came down with IC symptoms at the same time I started experiencing some intermittent back problems. After many years of having this I know that I do not have another illness, I do not have a referral pain, and so and so on. Now, after all of this time, after being fed up, I want to address what I do know about the back-bladder connection. I am so glad to know that I am not the only one out there who experiences IC this way.

I also want to repeat one more time that I never said anything about back surgery. I am not sure why this keeps coming up. I also do not want to squabble with anyone. I started this thread to find share my experiences with the back-bladder connection and I thought with the help of others with this same viewpoint that maybe we can attack the overall IC problem.

[ICNDonna]

I think the surgery discussion began with the discussion regarding Dr. Larrian Gillespie --- she was an advocate of back surgery for IC --- and according to the news reports, was scheduling surgery for patients before they had been seen at her facility.

Donna

[classics]

Interesting discussion. I was diagnosed with degenerative disc desease in 1998. I have a herniated disc in my neck at 5-6. I also have had problems with my lower back for about 40 years but never had the MRI to see if I have a herniated disc there. The neck hernation caused me several years of pain. I went to physical therapy for both conditions which stabilized it.

Since I started having the IC symptoms, my neck rarely gives me problems any more and my lower back kicks out every once in a while. Lying flat on the hard floor or doing some exercises usually straightens any problems out. It almost seems that when my spine problems got better, the IC started.

But this discussion leave me very curious as to whether my IC has anything to do with my chronic spine problems. I did mention to my uro about my spine, but he said I'd be in more pain, if that was the cause.

[Silverfox]

Yes, I thought it was interesting, that one of the questions in the Maryland Genetics of Interstitial Cystitis Study (called MAGIC study for short) they asked if I had Spina Bifida of the spine. This is a congenital birth defect that begins in the infants early development in the womb. My answer was that my Mother told me that when I was born, I had a lump on my lower spine that worried her. She asked the pediatrician about it and he told her "do not worry it will go away".

When I saw a urologist in London, I asked him about that as I was aware that the UK has a high rate of "spina bifida".(my ancesters are from the UK) They did ex-rays that I have had done earlier in the US. Then, a Dr. came up to me while waiting in the hospital and asked me if anyone had ever told me I had a hole in my lower spine. I told him "NO why?" Well he explained, that I also had an extra vertebra in my spine and these were birth defects. It seems that many people have them and they are running around the planet and never are aware that they have this, and they don't all have back pain. Many people who have normal back ex-rays have back pain.

I still wonder about those ex-rays and I wish I had a copy and had asked the Dr. to show me the hole, I was just too tired, shocked and embarrassed to ask. Dumb me!

I was looking on some spinal nerve diagrams on a web site. It showed the sacral nerves are 5 pairs, and that these nerves (S1 to S5) supply the thighs and lower parts of the legs, the feet, most of the external genital organs, and the area around the anus...........then it also showed the lumbar section, they are 5 pairs (L1 to L5) and these nerves supply the lower parts of the abdomen and the back, the buttocks, some parts of the external genital organs, and parts of the legs..........OH DEAR!

Well, I don't know what to think about this, but it is very interesting. It's such a big puzzel, and I am so glad researchers are finally looking at this, it will help a lot of people some day, I feel.

My 2 daughters are not married, but they talk about it, and they might have children some day, so I told them I was buying them some folic acid as they have found that women should take this before becoming pregnant and during the pregnancy and this seems to prevent spina bifida in infants.
I worry, and I will be the grandma, and so I care deeply and I want my daughters to take the folic acid to prevent such birth defects. They usually just laugh at my preaching, and sometimes put me on ignore. I'm just trying to help! :bonk:

[kygirltaytay]

I agree with donna, mine started after my total abdominal hysto. I truly do think there is a connection with surgery. Perhaps trauma during the surgery? I only know that this has affected mant aspects of my life. good luck to all and god bless.

[stephanie00]

Hmmm....a lot of people getting this from adominal surgery. I am still looking for a common denominator and I still think that this ties in to the "nerve" end of my theory. I think for some people they irritate this nerve in their backs and others irritate it from another point along that same nerve, which runs through the abdomen and/or pelvis. Keep in mind we are talking about the same basic area, now if you got it after foot surgery, I would think you may have blown my theory out of the water.

I wanted to add (for those who feel a back-bladder connection) that I got mine when I took a job where I had to sit and type a lot. Previously, I had always had jobs where I stood up and walked a lot, but when I took the desk job within 2 weeks my symptoms started.

[Leslye]

What about the Children & Men who have not had abdominal surgeries that have IC? Although, almost All of the women that I have talked to that have IC have had endometriosis,& or C-sections,& or Abdominal Hysto. Also, alot of them are or used to be in the medical field(nurses,nurse aides,respitory therapist,etc........)& school teachers. I am not saying that everyone who has IC has been in this proffesion, just that almost all of the people that I know with IC were in these fields. In saying all of this we go back to the children with IC. Is it hereditary? Maybe if we knew ALL the answers to some of our questions we could have a cure. Myself, I have had ALL 3 of the surgeries plus some that were not mentioned. I did not start having severe problems until after my C-section with my first child. Also, I have been in the medical field for over 12 years or more. Again, I am not saying that I feel that you have to have had these surgeries nor have to be in these work fields in order to have IC. This is just what I have noticed.

[stephanie00]

Leslye I am only showing how it ties to my theory because others keep dismissing my theory because their IC started after surgery.

My theory is that a nerve is irritated that travels from your spine, passes through the abdomen and on to the bladder. Men can get this and I suppose children can too, and I am assuming that women are more likely to get it because anatomically we are predisposed to it. For the record, I have not had any type of abdominal surgery.

I really shouldn't say it is my theory because it has been mentioned by and tested by doctors. I just didn't see a category on the IC Network Message Boards talking about the back-bladder connection and I definitely think their should be one. I think there are a lot of people who will find a connection with their backs and bladders. If you go to the IC Association's website I just found a bunch of articles that do bring it up.

[stephanie00]

(By the way I realize that the nerve probably travels through the pelvic floor, but if you are having abdominal surgery or a hysterectomy that's all pretty interconnected.)

[Leslye]

Hey Stephanie, I was not dismissing your theory at all, actually I have read alot of info on the back & bladder & how there is a connection. Being in the medical field I do think that there is a connection. Sorry, for the confusion. When I posted my reply I was mainly talking about the over all posts & All of our different theories. For me, I had severe endometriosis for 6 yrs that I knew about. 4 different times I had to have surgery to have my bladder removed from my uterus. Finally, in 2001 I had a total hysto & thought my problems were solved. Little did I know was that they had only begun. I guess what I was trying to say in my post was that we All have different opinions,theories,ideas,etc.......I do not feel that anyone should be dismissed & if it were an easier disease to pinpoint the cause maybe we would have a cure. I enjoy everyone's post & ideas it gives me hope & something to think about.Thanks

[sweetpea40]

It sure has made me think about the back. I was born with the 3rd vertabrae not there so after i had my twins, this ic all started. So now maybe it has some conection i am 5 feet so this must have put a strain on my back. Thanks for sharing.

[mags]

I'm hearing that alot of people started having problems with ic after some type of abdominal surgery. I have never had any surgery at all. I think mine started after getting a bladder infection. Did anyone else have their ic start that way?

[sleepyangel30]

I'm hearing that alot of people started having problems with ic after some type of abdominal surgery. I have never had any surgery at all. I think mine started after getting a bladder infection. Did anyone else have their ic start that way?


Yep.. My IC started doing a uti and yeast infection... i had yeast in my bladder and a uti at the same time.

[Judith56]

Stephanie, I feel that there are several types of IC and that they can be caused by different things. I was born with it, my mom noticed my problem as soon as I was toilet trained. I have never had back problems. At age 30 my bladder got so bad that I needed to have it taken out. Judith

[stephanie00]

I never meant to imply that IC is not multifaceted from the way it is contracted and the way it is experienced. I think that the most important thing is to treat the pain and the degeneration of the bladder which is what is being worked on with the APF study. Still, they will also need to figure out why this happens, which is what I have been getting at. For the last time, you do not have to feel back pain to be straining something, pushing a nerve, in your back. I also made it clear that not everyone irritates that nerve through the back, but from another point. I am sure most of you have got this by now....

Judith, I am very sorry for what happened to you. I am sure everyone who read that is very down about that. As far as linking it to this thread, well...I know zilch about your medical history, so I cannot comment.

I want to thank all of the people that came forth and shared their back-bladder connections. I hope that others will start to look for that connection because I think a lot of you will be helped by that. I would like to wish everyone good luck and....don't give up!

[darlene]

I agree with everything Donna said, and would like to add that the cause probably is in our genes. I have had IC since 1969, and I have never had back problems.

[Betsie]

I have not been to the ICN for sometime. I find myself on an old computer and home from summer home to tend to some things. I also find myself signed in :hmm: and a gazillion unread threads....well, I also noticed this thread.

Without getting into the variety of theories, and I strongly believe we will find that more than one become viable contributors to IC, I notice there is a back and forth concern over the "implied" message here by the thread starter and the way people are interpreting the back theories.

I think when we "title" threads with specific statements, our message gets tied to that. In this case, when you put the information together with the thread title, it gives folks the impression that one person has THE ANSWER.

Having survived many a debate here, I can pretty much understand how words are "heard" vs. "what is being said".

I hope that is a healthy response without having any theories of my own to add.

Happy Fourth to all!!!!

Back in the fall sometime :)

[msasser]

I really dont know what causes IC. I am 28 and was diagnosed 10 years ago. One month before my symptoms started I had a etopic miscarriage so is it hormone related I dont know but a few months before that I was in a very bad car accident and hurt my back. I find that I agree with Donna though I think we always had it something just had to bring it out. Also my mother has it so does that mean it is genitic? :bonk: So many questions hopefully someday we will all get our answer.

God Bless,
Melissa

[AnnieMac]

Hi everyone,
I haven't been on in a while, but I got caught up in reading this thread and thought I would drop my 2 cents in...
My thought has been that it was hormone related, but this thread has got me to thinking and I realize that my IC symptoms came on shortly after I got a job doing medical transcription at home...sitting for most of the day.
I wonder....

I was thinking it was hormone related, because I've had changes in my periods since I was 37...I'm 43 now...and IC symptoms for the past 4 1/2 years or so...I can't urinate on my own. Chronic urinary retention with IC. I have a suprapubic tube and get it changed every 2 months, which isn't fun. As a matter of fact, I am going tomorrow for my tube change...

Anyway, I definitely like the way this board gets you to thinking about our condition. There's definitely a wealth of information on this board...Thank you everyone for sharing their stories and concerns...

[Silverfern]

What an interesting thread!

Ever since I was a kid I've had frequency issues. Used to drive my parents crazy when we went on car trips as we were always stopping for me to pee. I can remember seeing the uro for the first time when I was about 16.....got a prescription for valium if I remember correctly, and told to do some bladder retraining. None of that worked and the uro accused me of not being motivated to do the bladder retraining.... :mad: I never did like that man! :cussing:

Fast forward thirty-five odd years and I had an abdominal hysterectomy because I had large fibroids pressing into my bladder. I was also about 18 months postmenopausal. Following this surgery my bladder symptoms got so much worse over the next year or two (so much for those fibroids being the only cause of all my bladder woes). Was this from the actual surgery or because of the lack of hormones....I don't know!

Just to add to the mix, I've had a lot of back pain for the last few years, especially behind my right shoulder blade, but I've also had increasing lower back pain, mainly in bed at night. I've started doing stretching exercises which seemed to have helped as well as loosen up my pelvic area. I'd have to say though, that the lower back pain definitely makes my IC worse.

Anyway, my point is that I pretty much agree with everyone as I think all of the theories can relate to me in one way or another, although if I had to choose I'd got along with Donna's theory. I think it's very complicated and I'd be most surprised if there was a simple 'one size fits all' cure for this disease. I sure hope I'm wrong!!!

:grouphug:
Lynne

[snooks]

I believe I have had IC for many years.It just was not diagnosed properly.But it got worse after a C Section then even worse after a hysterectomy for endometriosis.I can also tell you mine gets worse when I am really stressed out.I sure have enjoyed finding the support I have longed for with these message boards.I dont feel so alone now.Well I gotta go I have IC so I gotta pee.lol! I think laughter is the best medicine there is. Snooks

[Sharon]

It took 10 years for my IC to be properly diagnosed. It was only diagnose once it became severe. I wish it had been caught in the mild stages, but it wasn't and I try not to live in the past. Like you Snooks, I believe a positive attitude goes a long way with this disorder. I really noticed how much of a difference my attitude made when my IC was at it worse.

[Cheries]

I believe IC is related to three things. First all of us have a substance in our urine which impedes the gag layer from reproducing. I believe this substance is called APF or something like that. Then we get an infection which attacks the bladder which creates an injury which does not heal due to our damaged gag layer. On top of this I believe a lack of estrogen or something related to ovarian cysts (as many with IC seem to have them in their history), exacerbates the situation. We get this cyclical problem of inflamation and pain related to the substances in our urine. I think we will find a cure within 5-10 years. The APF factor is a MAJOR breakthrough!!

[Imustpee]

I hope you are right about that cure thing.. 39 years living with this nightmare is long enough! :mad:

[pingpong]

I'm new to this message board, but I've had IC for 13 years. My problem started during a VERY stressful time in my life. I also have lupus (for 19 years) and hypothyroidism (for over 20 years) - two autoimmune diseases. I'm thoroughly convinced that IC is just another autoimmune disorder, since I've met a few people with both IC and lupus. And why is it more common in women than in men? Because autoimmune diseases are more common in women - the ratio for lupus is about 1 male for every 8 females.

[Babs RN]

Ping Pong,
I agree autoimmunity maybe a cause since alot of my dx have included that--as the antiphospholipid antibodies that I have are in the lupus family of markers. Just wanted to add my 2 cents worth.

Hugs,
Barb :grouphug:

[.T.]

Wow- My doctor has asked me to have my back checked before. I had a scan done, but nothing wrong was found. I do have back pain and neck pain. Back pain on my left side and lower back right above my bottom and sometimes this pain ruds down my left leg. I've had spinal blocks done, but didn't get much relief from that. But a lot of my thinking is it must be nerve related somehow--because movement causes me to flare...simple movement like walking for a while, car rides, lifting, and I HATE stairs.. Hmmm It is something I would really like to look into-- and now my entire body is super sensitive to touch...
.T.

[sweetgirl]

That's amazing... I am just in the first stages of this... being diagnosed today (or in a few weeks) by my new urologist, hopefully :) And, this all started about 1 month ago when I re-injured a herniated disc in my lower back... AMAZING! if this is a connection... I'd love to know... :woohoo:

[sweetpea40]

Yes, i think there is a connection - somehow but to really get the answers may be a while since ic is still unrecognized by most people. I was born with a vertibrae missing in my spine and most of my life i had bladder problems. And after my twins were born caring them dislocated my hips and then the ic really flared after that. I really think there is a definite connection, also with infections. To me there is a connection but that is my two cents anyway.

[Janie Miranda]

One of my most persistent symptoms is lower back pain. I wear a TENS unit with the leads on my lower back for 3 to 4 hours a day and it helps my back and my bladder symtpoms.

[ettegirb21]

I never thought of that, but it would make sense. For what seems to be all of my life, I can remember a lot of times where I would get back pain and at least once every few weeks a painful, shocking sensation up my spine....I've never been to a chiropractor....probably b/c I see my urologist enough, I don't want to be paying another doc's salary....But, I think you might be onto something with the spine thing....

[Silverfern]

I've just finished my second week of visiting a chiropractor as my lower back was driving me crazy in bed at night. When I first went I told him about my IC (he'd never heard of it!) and suggested that it might have something to do with my back pain. He didn't comment one way or the other. He's made a huge difference to my aching back and a very slight improvement in my bladder symptoms, but not enough to get terribly excited about. I'll be interested to see what the final outcome is when I finish up with him.

[SandyRN]

I am glad you brought up Dr. Gillespie. She ultimately came to the conclusion that Interstitial Cystitis is caused by back problems. I think she said, to paraphrase, that the bladder can pick up on back problems long before there is any other sign of a back problem. My MRI's are negative and the sciatica and lumbar pain is totally something I can live with, but I became aware of the cause and effect relationship between my back and my bladder.

As far as men getting ic less often, well, that might be as simple as anatomy.

What does anatomy have to do with it if you believe that the back is responsible for IC? Men do not have a different spine than women do...

Is it odd to anyone else that this person wrote their 'views' about this, basically said goodbye in another post, and hasnt written since?

[ICNDonna]

You can read about Dr. Gillespie at http://www.ic-network.com/newsroom/296.html
I'm not certain whether or not she is, or will be, practicing again.

Donna

[SandyRN]

Donna,

I saw that article. People tend to prey on those of us that are vulnerable sometimes and that Dr. Gillespie was the ultimate predator from what I've read.

It's so hard to believe in anything anymore. I got a call from some goofy guy from the IC study going on now, and he was incapable of speaking to me in a professional manner. He said, "just wanted to make sure everything was going alright for you in the study", even though I told him I am not yet IN the study. Dont know, but I'm having my doubts about becomming ANYONE's guinnea pig.

It's disheartening.

[stephanie00]

I keep an eye on my thread from time to time, motivated by the fact that my thread seems to have helped some people. I choose not to respond to everything I miscommunicated or that others miscommunicated, because it was getting to be time consuming and futile.

As always, I am amazed by some of the aggression I encounter. I did not say that men and women have different spines, I said anatomy in general, and I assumed (perhaps wrongly) that everyone would know I meant the obvious anatomical differences with sex organs and urinary system and therefore where the corresponding nerves might be placed.

Anyway, for those who do see a back-bladder connection I wanted to give an update on my progress. I found that I was able to almost completely eradicate my back problems by not lifting anything over 5 lbs. with my right arm. This, as I suspected, has immensely helped my bladder problems, which are almost completely non-existent. I am not 100% yet, because life goes on, and hey, it is hard to not lift anything over 5 lbs. each day. I also have to say that it isn't as bad lifting things if I do it symmetrically with both hands. I believe my main cause was lifting my cameras off the ground hundreds of times in between shooting. I would think lifting a child would give a similar result. Anyway, I should give more details and perhaps I will later, but I have to get back to work. Bye!

[vm]

That's great that you have found some ways to help your bladder discomfort. :)

[SandyRN]

As always, I am amazed by some of the aggression I encounter. I did not say that men and women have different spines, I said anatomy in general, and I assumed (perhaps wrongly) that everyone would know I meant the obvious anatomical differences with sex organs and urinary system and therefore where the corresponding nerves might be placed.

I am not being aggressive...and I should say right off that I agree with VM, I'm glad you found the help you need for your bladder....but, you should know that it's not that easy for many of us. If I could get relief of my symptoms by simply not lifting anything heavier than five pounds I would be a whole lot more physically active than I am able to be now, and I would honestly be ecstatic. There would be no need in spending 100's of dollars a month in copays for pain medicines, I would not be afraid to work, I would have a better life with my children.....everything would be wonderful.

I realize that the sex organs of males and females are obviously different, but, if there is such a high regarded back correlation, then men should, I would assume, have just as high a rate of IC as women do.

It would not matter that the man has a longer urethra, etc, because the spine would be the definitive causative factor. If you look at charts, drawings, and textbook pictures of the central nervous system, etc, it does not differenciate between male and female.

Which leads me to this....I DO believe that back problems aggravate the bladder, I do believe that nerves in the spine and other places play a huge roll in the overall well being of our bodies...I also believe that the bladder can cause back pain---and SOME pain is referred pain from other parts of the body, including the back...but, if it were that simple, someone who does this for a living, a well respected doctor who is not simply out there to make money and steal people's lives from them, would have found the answer long ago.

My urologist has written articles on IC, is well respected in the SE and well known, and has told me that while there is progress out there, there is no definitive cause......and he's never recommended back surgery to me, (no, you did not suggest anyone have surgery) nor does he think that the cause of my IC, or any of his other patient's is in the back. He, along with my other doctors, think there is a whole lot more going on. I have many autoimmune symptoms, and illnesses related to autoimmune disorders.....and frankly, that makes much more sense. For some reason the body is turning on itself, and whether that cause is from repeated bacterial infections, abdominal surgery, or other trauma to the body that activates immune responses that researchers do not fully have a grasp on.

When people make choices on their healthcare, and what is done to their bodies for the sake of a cure, I really hope that their decision is based on well respected research done by well respected researchers and doctors that are not out for the all mighty $. When anyone tauts a cure, or THE answer, without the AMA's backing, will always be questionable to me.

What I have seen over the last many years of my illnesses is people who are so vulnerable because they want a cure, and help for their pain and symptoms, that they are decieved by people who claim they HAVE THE CURE, or the answer, when nobody in the medical community as a whole claims to have the cure...and I'm not insinuating this is what you are doing, I am referring to the snake oil, greed loving surgeons, who also claimed that they had the answer by ripping people's spines apart.

Respectfully,

Sandy

[Godwillhelp]

I was so excited to see this thread. There are many theories out there as to the cause of IC.
I for one have also had the sciatica theory. I have seen a chiropractor in the past and if you ever look at the charts while you are in there and all the nerve endings that come from your sacral area and wrap around and go through to your bladder....it would be amazing if the two were not related! Plus pain is sent from your brain down the nerves of your spine before it reaches the area of irritation....
As for the men vs women thought...personally my sciatica didn't start bugging me until after I had babies. Something men don't have to deal with right?
I believe there can be actual trauma that can bring on IC. What if during surgery there was nerve damage? All of the sudden WAM....you've got IC. Or it could be brought on slowly over time.....nerve gets damaged....doesn't get the help it needs and as we all know when our body is not getting the help it needs it will cause more symptoms to get our attention. Or compression of the sacral nerves in the spine. A hard to reach area that can have damage caused to it during the birth of a child...thus sciatica problems.
I have also read the "said" aritcle. Read it quite a while ago.....found it to be interesting since I had already been thinking on that theory. What concerns me is....if there isn't anything we can do for the sciatica....aside from pt which hasn't helped me or getting surgery which I am not willing to do, what is going to keep our IC from continually getting worse?

[Godwillhelp]

It appears that a lot has been said about this issue....when I posted my thoughts...I didn't realize there were already five pages written. Sorry if I repeated thoughts already said. I can see how things can be misconstrued and regardless of whether we have medical backgrounds or not....I think we can all show different ways that IC COULD be brought on.

[stephanie00]

There is nothing easy about what I have been going through. If it were, I would have done this five years ago, but back then I only focused on my bladder. It has taken 5 years to get to the point I am at today. I will tell you that once I started to address my back issues, which to me were no big deal at the time, my overall health improved.

I really am sorry that not everyone is going to fall into this category and that I can't explain why. However, I do think that a lot of people will find relief from this, and to keep going on about how this or that person does not relate is counterproductive. I have nothing to gain from telling people my experiences. I just know that 5 years ago when I thought their might be a connection with my back problems, I could not find anything on the internet on it. I had to really dig to start to find things about it. If anyone has another good theory, by all means, start your own thread. I for one will probably read it; I do think this thing is complex and multifaceted.

I also want to add that I believe in trying to cure yourself as naturally as possible. Sometimes medications and treatments are absolutely necessary, but you would also be surprised how a simple shift in your posture can deteriorate your overall health.

[SandyRN]

Counterproductive? How is what I'm saying counterproductive? Does this make your theory the only productive one?

My point was that there are MANY, MANY, MANY people out there with IC that have autoimmune related disorders/diseases, and it makes a lot of sense if you stop and think, and read about it, that the body is turning on itself----autoimmune. I'm certain I can find detailed articles on the web if anyone would like, or simply google "autoimmune + IC".

No, not everyone has other problems, but if you read old posts on here where people ask "do you have fibro, or other diseases?" you would see how interlinked they all can be.

I UNDERSTAND how the body is affected by the back/spine, it's impossible not to be because it is the nerve center of the body, literally. But, it does not explain ulcers in the bladder, it doesn't explain pinpoint bleeding, it doesn't explain soooooooo many things related to IC.

Perhaps if we all walked around with books on our head to better our posture we'd be cured? Not to be snide, but there is SO much more to the body, immune responses, etc, than just the spine.

At this point, I will say, I agree with you partially, that the back is an integral part of overall health, but, with true IC there is surely a more complex answer. If the answer was that easy we wouldn't be suffering.

I'm honestly glad your symptoms have receeded, but you insulted someone at the beginning of this thread, and accused them of not wanting to get well because they questioned your theory. That instantly had me question the thread.

I hope you continue to have good health, and I hope the rest of us find the answer for us very soon.

[Hangin' Tough]

Anyone who has spent any time on this board and has gotten to know all of the wonderful people here, and would suggest that someone doesn't want to get better is obviously out of touch. There are many of us on this board who have years of medical experience in one field or another. Does this make us any more able to decipher this puzzle? No. Does it make us any less ready for a cure? No. I for one have no use for people who don't know anything about me or my situation questioning my desires and needs. Sandy, pay no mind. You have been one of my favorite posters here for sometime, because of your head-down attitude toward this disease, and your support of everyone here. See my signature line.

Steve

[stephanie00]

So sad. Well, you guys have fun with your soap opera. I am on my way to getting better!

I am sorry so many people have had to wade through this nonsense. If anyone wants to learn more about my experiences, please continue to send me private messages.

[SandyRN]

Thank you Steve.

Soap opera? You must continue slinging insults? Sorry, but my gut feeling tells me there is more to your endeavor here than simply trying to help....there is no room for being so blatantly rude, and insulting. This is just another example of a reason to doubt your intentions.

I will repeat something I said earlier. I hope that when anyone considers choices for their body and their healthcare I hope they do it after research, and know all the options before getting into anything that is not "mainstream", or not approved by your doctors who know you and your medical history.

[ICNDonna]

It is my humble opinion that this thread has served its purpose. I am now closing the thread.

Donna