nerve damage and ic

[michaela]

Do you any of you think IC could be caused by some type of nerve damage? I read an article posted by emerald on the success stories boards and another by kim (vm). My discomfort feels like it's right around the bladder neck and the trigone and according to the diagram there are alot of nerves that go there. My discomfort is worse when I sit. Sometimes it does go away but is more irritating than painful. Here lately I don't really have frequency at least i can deal with what i do have. It's just the feeling that I have to pee. Like pressure on the bladeer neck and when i sit it feels like it's laying on my urethra. My bladder lining was inspected thru a hydro and there were no breaks or glomerulations or inflammation. Please read the article and give me your opinion, pay attention to the diagram. the area highlighted in yellow is where I feel my annoying discomfort.


http://www.ic-network.com/guestlectu...ranscript.html

If it doesn't highlight, just copy and paste it into your browser.
Thanks,
Michaela

[ICNJess]

Michaela--

I had my hydro and I had the bleeding and scar tissue, and I've had every test under the sun imagineable, including MRI's, (I am so chlostraphobic now after that ughh!!!) and x-rays and etc, even on my back because of back pain. I have seen chiropracters as well, and I didn't have that L5 problem. Everything came back normal. Maybe there are different cases of IC, who knows, but I just know that I'm not one of those L5 people. I wish we could get closer to a known cause soon!!!

Good luck on your search.

Hugs,
Jess

[michaela]

Jess,

According to the diagram, alot of the nerves come from the S2 and S3 region. Doesn't the interstim you just had done work on the nerves somehow? From what i understand nerves are usually involved when there is pain or discomfort. If you were to completely cut the nerves then there would be no pain. I know in some IC patients there is damage to the bladder lining but it's the nerves behind that lining that cause the pain and frequency. With me, my bladder lining is intact with no scar tissue or lining damage and I am wondering if it could be the nerves that are causing my discomfort. Especially given the fact when I sit I feel it worse, I'm thinking maybe when I sit the nerves around the bladder neck become compressed and cause that irritating sensation. What do you all think?

Michaela

[ICNJess]

I am not sure where the interstim is put, all I know is that it is on the sacral nerves, not sure where that is in the body. (Not that far in my medical class, give me time! ) As for the pain aspect, ahhh my pain came back the other day, but the frequency and urgency are gone. I think you are right about where the interstim is at. You should ask Brat when she comes back. I don't know, everyone's got their own opinions, and until one set known is out there, it is just that, opinions. I agree, there might be a role in nerves. I just don't know why Interstim doesn't work for everyone, then? It has helped with my IBS, and I believe that that's nerve related. I'm sure others will chime in with their opinions, and I'm sure a lot of them will conflict with what I have to say, but at any rate we're all in this together. Has your Uro said anything more about what might be causing your discomfort? I hope so, it is not fair that the Potassium test told you one thing and that hydro told you another.

Hugs,
Jess

[vm]

Michaela: If you haven't been to Medtronics site you ought to check it out. Here's a link to some physician product info and you should be able to navigate around from there:

http://www.medtronics.com/neuro/interstim/solution.html

[Silverfox]

Michaela,

I agree with you, that IC is caused by nerve damage. I did find out the cause of my bladder frequency and pain that I suffered with since I was a small girl.

At the height of my illness, my Dr. thought that I might have MS and I had a spinal tap done. The results were not so good because they found out I had a very high protein level in my spinal fluid. eek (Thats how I knew I was not crazy.) That meant that this fluid was also in my brain and around the spinal cord. Has anyone else had a spinal tap?

They ruled out MS, but were very puzzled as what that meant for me. Finally,I was diagnosed with low thyroid (Hypothyroidism) It will cause you to have high protein level in the spinal fluid.

I was quickly put on thyroid medication and many of my symptoms slowly began to get better. When I asked my Dr. which nerves were damaged he said that it was damage all through my body! eek They wanted to do a nerve biopsy, but I didn't want to have any cutting... and would have to look at the nerves under an electron microscope to see damage.

Sometimes the myelin coating around the nerve is damaged. I have researched and read that as of now they do not understand how the nerves become damaged, but they think its a metabolic nerve growth problem in Diabetes and Hypothyroidism

I believe that I had nerve damage to the entire area around the vagina, bladder and urethra.
I also have neuropathy pains in my hands, fingers and soles of my feet. They tell me it takes a very long time for the nerves to heal from the spinal cord on out. I keep asking for a medication that will speed up nerve regrowth. I think it is vey experimental, and there is little research going on with nerve repair in the USA

The shorter the duration of Hypothyroidism and the less severe the Hypothyroidism, the quicker the patient recovers.

I also have nerve damage to the autonomic nerves to my bowels, causing me years of IBS and severe constipation. I also had symptoms of sjogrens (lack of tears saliva) of which I have now recovered. The autonomic nerves to the heart and lungs can be affected. My breathing has improved lately.

Yeah! I'm greatly improved but not fully recovered. Not long ago the Dr. raised my thyroid medication and I do feel better.

I belong to the Neuropathy Association support Group at a hospital near my home. Next summer a lady is going to start a walk across America for the Neuropathy Association. I would like to join her, as she is starting her walk in Seattle.(my home town) Hey, learn more about neuropathy go to www.neuropathy.org .... Johnny Cash suffered from autonomic nerve damage due to his diabetes, and it affected his lungs. Guess the Drs. couldn't fix his neuropathy.

Now I understand why top IC Drs. look into patients bladders and quite often see no reason for all the complaining and terrible pains. I was told by some top IC Drs. my bladder looked normal, that I was a crazy lady, but that I was the worst IC patient they had, who had end stage bladder .....and all they could do was take the bladder out....... Are there others who think it is nerve damage?

I hope and pray that someone else can be helped by my story....... My current top IC Dr. is shocked by my medical history, and I told him I will keep him in my prayers! angel

Are there other IC patients who might be like me?
My current top IC Dr. says that I am very rare! I really wonder if I am so rare???

[ICNDonna]

When I had shoulder surgery and the shoulder froze after surgery, they had to break it loose under anesthesia. One of the things that was done to help control my pain was a TENS unit. The transcutaneous electronic nerve stimulator does just that --- it sends tiny shocks into the body, which stops the nerves from transmitting pain. It's my understanding that the interstim is similar, except that it is placed in the body directly to the nerves.

I do not believe I have nerve damage. It's totally normal for the nerves to transmit pain messages when the bladder and/or urethra are raw and inflamed.

Donna

[michaela]

I see points in all the replies but how would you explain my case? My bladder and urethra are not raw. there is no break in my gag layer and my bladder nor my urethra are inflamed. I feel the pressure right around the bladder neck and the trigone and this is an area with many nerves coming to it. I honestly believe that nerves play a part in IC. I'm gonna investigate further. Keep in mind I have no pain just that incomplete emptying feeling and pressure on my urethra. It's even possible i damaged those nerves when i had my second baby due to the fact that it was a hard birth and my bladder and urethra were damaged during the delivery. I hope I'm on to something here.

Michaela
PS Thanks silver fox for the info.

[Silverfox]

Donna, when you mentioned anesthsia, I am reminded of what one of my top IC Drs. told me after he did a Hydrodystension and look in the bladder. (This was after some other top IC Drs. diagnosed me with end stage bladder,peeing every 15 mins,and recommended that I have my bladder removed.)

The top British Dr. said that my bladder looked very normal and of normal size, and that if he stretched anyone's bladder far enough he would get pectechial hemmorages and cause bleeding. He told me that true IC was very rare. He was British, and said he disagreed with the Americans, although he trained many US urologists. He told me that while I was under a lighter anesthsia he tested me to see if I was telling the truth about being in severe frequency and bladder pain. He told me that while lightly having me under anesthesia and distending my bladder, my slow pulse very quickly changed to a very, very rapid pulse. Don't know if I jumped off the table.

My body's physical reaction to this while being under anesthia, told him how very sensitive and told him my bladder distress was very real. eek
His advice to me was not to have my bladder out as he felt I might discover what was the cause for the bladder distress. I didn't ever think of telling him and other top Drs. about my other
symptoms that I also suffered from.(ending the bladder frequency and pain was all I cared about)

Well, I had seen a whole lot of top IC Drs. and he seemed to me to be the most sincere and honest urologist that I had seen. kissing

Turned out shortly after this(4 months later) I learned that I was severely hypothyroid. When my top IC Drs. said "but you don't look it". When I went to them a few weeks after treatment with thyroid they said I looked so much better, and they saw the improvement thyroid hormone made in my health and appearance. Didn't look like the tired, old, and worn out 37 year old Mother. The British top Dr. said "It is possible,anything is possible" and that he was "a thyroid expert and would have gladlly given me thyroid."

Well, I believe that true IC does exsist, but I think if they were wrong about about my Hypothyroidism they could make the same mistake with others. I don't think I am a rare woman, Hypothyroidism can be very sudden and severe and very slight and subtle. Just darn sneaky. Symptoms are not the same for all hypothyroid patients.

Also wanted to mention the thyroid tests are not 100% correct. Many patients go for years and some go into a comma before "Hypothyroid"is diagnosed.

Well, another reason I say that I am not unusual is that my Mother and my two sisters also suffer various degrees of bladder frequency and pain for many years, they have had all the tests and have tried various bladder treatments, and medications. They are now all diagnosed as being hypothyroid. My Mother is now in a nursing home, and it has been so tragic for my Dad.

Well, my current top IC Dr. looked surprised and maybe shocked. eek I don't think he ever thought the thyroid could be involved with the bladder. He told me that I was a rare case. I do not think am that rare....... Thyroid diseases are seldom mentioned or given serious thought,and yet go untreated in the millions.

I have no medical training, this is what happened to me and take it very seriously!

[michaela]

Silverfox

I PM'd you.

Michaela

[tigger_gal]

Hi all, I guess I am pretty confused with all the posts, wondering what is true IC and what is not. My mother has IC and has had it for over 30 years, and her bladder capacity is 250.. I have IC with a bladder capacity of 350 undersedation. I do have pin point bleeding and its obvious that my bladder was not streatched far at all when a normal bladder can hold over 1000 cc's, a good uroligist would never over stretch a persons bladder and cause them dibilerte pain. I have had every test run on me and then some. No thyriod problems and no nerve damage, no bad disks... every doctor you go to has a different opinion. I lerned that quickly. In my opinion if it aint broken don't fix it... why treat something that came back with normal results, so many meds go thru your liver and are damaging. so many diseases mimic others so please find a good doctor and take his asvice.
Brat

[ICNDonna]

There's absolutely no doubt in my mind that I have IC. I have pinpoint bleeding on distention and Hunner's ulcers. That along with my symptoms and the fact that the IC diet helps me is enough to remove any doubt.

I understand that some bladders will show bleeding on distention, but if it's coupled with symptoms, it makes diagnosis more certain.

Hopefully one day soon a specific cause will be found --- and a cure will not be far behind.

Sending healing thoughts,
Donna

[tigger_gal]

I second that Donna, I have no doubts that I have IC, I should have stated that in my post... tiny bladder pinpoint bleeding. urgency, frequency, pain, bladder spasms... not to mention IC is an inflamatory disease. painful sex and paps...gggggggggrrrrrr
Brat

[ICNJess]

Brat--

You and I sound exactly alike. I had the pinpoint bleeding, low capacity, spazms, frequency, urgency, pain during paps and such...I am so glad that I didn't have Hunner's like Donna. Those sound to incredibly painful.

Anyways, some people don't have the pinpoint bleeding, and some do. I have read that a smaller amount of patients do. It was in one of my IC books. I do agree with Brat, if it ain't broke, don't fix it. Although if you do have a thyroid problem, Michaela, I hope that you do get treatment and feel better.

Hugs,
Jess

[peiti]

I think my ic is related to my nerve. It may not be a never damage, but I've found something very interesting. Everytime I ate the acid/spicy food, my bladder would be in pain in about half hour. At the same time, my lower right back was in pain too. The spot (a very small place) near the S4 hurt a lot. Only my right side of bladder was painful and my right lower back felt the pain too. I have seen my doctor for this. He didn't find anything wrong for that. So I guess (in my opinion only), maybe it is not about nerve damage. It is something that our nerver trasmitting to the bladder that causes the damage. Who know?