not sure but here's an interesting theory

[Shelka]

Hi Gals!

Well, I've thought about it (& thought about it & thougt about it etc! :p ), but I'm not sure what may have caused my IC.

What I can say for sure is that it has definitely been a gradual thing in my case.

When I was in my teens I used to go to my family doctor often wiith what I thought were UTI's but test results were mostly negative....it went on like this without really bothering me (just a minor annoyance) for many years until it started to become more frequent around the age of 22-23 (I know, because I had a cysto done) but I was told my bladder looked fine and was offered no explanation. It seemed to go away for the most part until about the age of 28 when it really became more frequent and more severe and I had another cysto done and was given the diagnosis.

In any case, although I'm not sure what caused my IC, I did want to mention an interesting article I read which suggests there may be a genetic link between IC and Panic attacks. This is something that would not surprise me as I had very bad anxiety attacks starting around the age of 16. Although the anxiety attacks are better now, the IC certainly isn't and I thought this was a very interesting possiblity. Here's the link if anyone is interested:

http://www.reuters.com/newsArticle.jhtml?type=healthNews&storyID=4559214

Also, if any of you have the time, maybe you could pop over to the "Related Conditions" board because I've created a poll there to see, just out of curiousity, how many of us have a history of anxiety attacks. If you could take a second to answer the poll I'd really appreciate it since I'm hoping that people who DON'T have a history will respond in order to make the poll a bit less biased (I'm guessing that people who have panic attacks & see that written in the header will probably be attracted to the topic, whereas others who don't will probably just skip the topic) so again, it would be really nice if even those of you who don't have a history might answer as well! :D

Who knows, maybe there'll be nothing to it, but still, the more hypotheses and subsequent investigations into possible causes, the sooner a cure may be around the corner!!:D

Shelley

[Silverfox]

Hi Shelley,

Thank you for posting this article. I have pretty close to the same type of history that you explained. My IC began when I was just a small child and worsened over the years. Usually an annoyance, until years later coming on suddenly more severe. My bladder looked very normal and normal size yet the urologists told me that I was the worst case of IC ever seen. I was even seeing some surgeons about having my bladder removed.

This was when I was at my worst and at the end of all hope. I had been studied for Lupus, arthritis, and in a spinal tap looking for clues they found that I had a very "High Level of Protein" in my spinal fluid. This fluid was also in my brain. This was the first clue that turned up some real bad results. This is common test result when someone suffers with too little thyroid hormone.

Then I made a startling discovery, that I was severely Hypothyroid and my symptoms including Bladder, Migraines, shortness of breath and with feelings of panic, also the mitral valve prolapse. I was finally put on a good dose of Armour thyroid and many of my symptoms have gone away. (I still have some frequency.) My IC doctors now tell me that I was really suffering from Hypothyroid Neuropathy. This is a nerve damage that is due to the lack of oxygen and nutrients needed by nerve cells in order to function normally. Nerve cells need an extraordinarily high amount of oxygen!... Without this they are damaged or could die. A dead nerve cell can never return, but damaged nerve cells can repair and get near normal, and as in my own case depending on the length and severity of the Hypothyroid disease.

Now my Doctors also tell me, that I have nerve damage throughout my entire body. You cannot see the damage with the naked eye. You would have to do a biopsy and look under a very powerful microscope to see it. They say they are surprised that no one has done a biopsy yet. I don't think its necessary, nor do not want to be cut on. I also suffer with Peripheral neuropathies that are in my distal nerves of my hands, feet, and bladder area.
(Carpal tunnel syndrome is a common neuropathy, from too little thyroid hormones.) My severe case took a long time to reach this intensity, since I know I had symptoms since I was a little child.
Treated early, I might never have reached such a severity of symptoms. How dare all those Drs. tell me for half my lifetime that I was making it all up. They were very cruel to me when I was so sick.

Some of my nerves were caused damage to the Autonomic Nervous system. These are the nerves that you never think about. They do their work and when they are damaged, you can end up with many problems.

Some examples of Autonomic nerve damage, are the intestines, and the organs in the body. Heart, lungs, stomach, and they result in symptoms such as constipation, mitral valve prolapse, slow stomach and bowel function. They also cause symptoms by affecting the blood vessels and this can casuse very low blood pressure, which can cause you to feel faint when you stand up suddenly. To learn more about this go to the National Dysautonomia Research Foundation. " Dysautonomia" means autonomic nerve damage. If you search this out you will understand this better.

My IC doctors are looking for something to help my symptoms, but I wish they had treatments that will heal my nerves. My pain Dr. tells me that nerves heal slowly from the spinal cord on out, and that the body has a wonderful way to heal. The most recent symptom to go is Migraine headaches, I haven't had a headache in 6 months!(I had these since I was a child on and off)

I noticed that at the end of the article the authors "suggest that abnormalities in the central nervous system may be the underlying cause of all these disorders." Well, from my own situation and my own observations I think that the low thyroid disease, Hypothyroidism, is more likely the cause of my entire illness. My Doctors agree with me... and they have treated many IC patients for years, and are located at a University Medical School, and even attented the IC conferences last winter.

My Grandmother, Mother, and my 2 sisters, and my 3 children also suffer with many of the same list of complaints, bladder, migraine, fibro, IBS, depression and several other problems related. They all have been diagnosed with Hypothyroidism. In my family Hypothyroidism is the genetic link!

Again, thanks for posting this article, I think they are getting closer to finding the cause of IC and its related problems. When they do women will no longer have to suffer under the cloak of secrecy any longer, and when treated early they can prevent the severity of the nerve damage.

Well, this is my own experience and I am very sincere.
This is not a time to give up hope, take care, and may God Bless.

Silverfox