To the giving up point...

[colourmetwice]

O-K:

Last week I went to Madigan Army Hospital. They did a cysto/hydro and pelvic exam under anesthesia (I mean I was all the way out, because last time they tried I was almost screaming).

I have ulcers on my bladder. Regular ones, not Hunner's ulcers.

They think its from recurrent bladder infections. (Although I have only ever had one and even that one was questionable becasue its what started this whole IC thing-ya know, initial tests keep coming up that you have an infection but when they culture the urine there isn't any bacteria there).

Okay.....

Take Levaquin for 7 days and Macrobid for 2-3 months.

Okay...

Bladder held decent amount and no pinpoint bleeding was found.

Okay...

Hopefully this will all go away with the antibiotics.

WHAT?!

NO! Suddenly, THIS Doc doesn't think I have IC, just a really bad infection.

I told him about all the research I have done. That pinpoint bleeding isn't needed for a diagnoses. Not all people with IC have pinpoint bleeding and actually some normal people without IC have pinpoint bleeding. Therefore not a good indication. Also, capacity isn't the biggest issue. Okay, so my bladder can hold a "decent" amount. I still have to pee! It makes me feel better.

And, by following the diet (and then trying to re-introduce foods) I found some things that DEFINITELY triggered me. The Doc was curious for a moment, but then he waved it off again.

AND he's not explaining the severe pain. When I asked him he just said, "I don't know. I don't know what's causing that pain". No $&#^! But that's the problem with IC in the first place. There is no definitive answer. Not yet anyway.

So now I have a military doc who supposedly specializes in IC and doesn't think I have it. He thinks these ulcers are the only problem even though he admitted he didn't understand where my other pain was ciming from. he wants me to wait 2-3 MORE months to see if the antibiotics work.

This is insane. I'm in an awful flare-AGAIN-and the stress from the new Doc is SOOO not helping.

I can tell he hasn't done any research on IC since he graduated med school. And the thing is I tried to give him material but he took such offense to it.

Here's the major problem/difference with military doctors: They don't have to care about their patients. They see SOOO many people. They can't get sued, only transferred (you sue the military, not the doc). They have nothing to lose or gain. This is also why I am very against socialized health-care, by the way.

I don't know what to do anymore. Who can a speak with?! What do I do?! I have done so much research...I just need someone to give it to , someone to listen to me!!! That's pretty much all I do all day: go to work, then go home and do research (when I'm feeling somewhat decent). I have stacks and stacks, I'm a wealth of information! But no one will listen to me.

I'm crushed. I'm tired. Sometimes it seems like my whole body hurts.
The pressure on my bladder is so intense I can't stand it. I visited my husband last wednesday to sunday and we went to another couple's house. They had a little 3-lb dog and it jumped on my bladder and I almost screamed. If my husband accidentally pokes me there or goes to lay his head there I have the same reaction. And sex...well....yeah...

The cysto/hydro changed thing a little bit. I don't feel like I have to pee all the time now, but not I can't tell when I have to pee until I get this dull ache and sit on the toilet for a few minutes, then I can eventually go.

Does anybody have a good doctor with guts that's willing to speak to a military doctor and talk some sense into them.

Right now, IC is diagnosable primarily on symptoms alone. All tests are just to eliminate other things like kidney stones and bladder cancer.

So why am I meeting so much freaking opposition!!!!???

[Freckles]

I'm so sorry for your situation. Unfortunately us IC'ers have been through this with doctors that aren't in the military. Some doctors really don't like it when their patients try to diagnose themselves. It does something to their ego. They don't like you telling them what you have. They want to play God. Doctors have big ego's and it's obvious in the way they treat IC'ers. Every doctor I have been to though as said I have IC. Most doctors will diagnose based on symptoms. If I were you I would ask to see another doctor if possible and keep it up until you have one that will listen to you. Has he given you anything for the pain? Do they really expect you to just be in pain until they figure out what is wrong with you. Sometimes you really just have to get mean to be heard. It's such a common problem with IC. These doctors just don't understand how painful this is. Demand treatment! Demad that they run tests to rule out other things! Demand something for your pain while they are twittling their thumbs. Go over your doctors head to his boss. I know nothing about how the military works so this may not be much help to you. Military or not unfortunately we all go through this. It takes years sometimes to get diagnosed because doctors won't consider it to be IC. It's great that you are doing the research, keep it up. Best of luck to you.
Karen

[glassd18]

Hi Colourmetwice,

Can you go to a civilian dr? My husband was looking into the military and the recruiting officer told him that we could use a civilian or military dr. Just curious. When I'm not satisfied with the care I'm receiving I get a second opinion. Don't stress it makes things worse!!!!! I'm sorry you are not feeling well, and I hope things get better soon. I grew up in Canada with social medicine, and I received good care, and sometimes questionable care, but I've had the same thing here in the US too. They are regulated.

[colourmetwice]

This was the second opinion.
I got to read their report and of course it stated "possible psychological issues" which is what they thought the first time.
I was already evaluated, by a Captain no less, and she laughed when we were done and said, "You aren't crazy, you don't have any psychological disorders, you're just in pain and no one is helping you."

At the time, I thought she was a breath of fresh air...now I'm back to square one again. This is ridiculous.

*********

I just had another appointment with just a gynecologist. I went to discuss family planning issues, but of course the IC thing came up.
He started going off in a totally different direction--he said he wants to treat my husband and myself for chlamydia!!!
I said I've been tested for it a million times over because of this. He said the tests often come up negative because it can hide in your body.
I don't have any weird discharge, but he says because my urethra hurts and sex is painful (is a pressure-related sort of way) we should definitely rule out this particular STD.

I'm horrified! Blah! Now what do I do!?

Its so difficult to write off what a doctor says all the time.

[Smacciemac]

There is no harm in being treated for Chalymidia.. It is just another course of anti-biotics for you and your husband to take at the same time. Who knows.. maybe the antibiotics may rid you guys of some other infection that may be being passed back and forth.

Either way it can't really hurt..

I would definately ask if you can see a civilian doctor as glassD18 advised.

Good Luck with it all..

[colourmetwice]

Actually, there is harm is putting MORE meds into my body that I don't need.
I'm on way too many as it is.

There could be serious repercussions down the line because of all this.

[ICNDonna]

:grouphug: Is there any way you can go back to the doctor who seemed to understand? I'm really sorry you're going through this.

Warm healing thoughts,
Donna

[colourmetwice]

I actually see the doc who "seems to understand" on a monthly basis (and more if I end up in the ER).

Unfortunately, he deals in pain management and family practice-his specialty isn't in uro-gynecology. So thankfully, my pain is being treated, but I'm not making any progress with an actual diagnosis.

SOoooo....I called a doc in Bremerton today that someone on this website referred me too saying she really liked him. He's a civilian, so I have to pay out of pocket, and the military does not under any circumstances have to give a darn about anything he says, but hopefully he will at least put me on a feel-better plan.

That's the hope.

They're calling me back tomorrow. I want to ask how much experience he has in dealing with IC, his views on it, and how much I'm going to have to spend.

We need to start turning this into one huge IC campaign...a non-profit organization...we could raise a bunch of money to send to people who can't afford to go to doctors their insurance won't cover...or for meds insurance won't cover.

We could make this really big and actually HELP people, not that we aren't right now, but let's face it--we need more than a place to go and complain and sympathize with eachother (although its a wonderful start)-we REALLY need an organization with funding that can help fund research AS WELL AS people's medical bills. That's how you really help people.

I want to get involved in something like that.

In fact...I'm determined to.

I wish I could do it while I'm in the military.

I have to figure out something.

This is just entirely unacceptable.

[ICLori]

I'm sorry you are going through this. But I am very excited for you that you might actually have a disease that can be cured through antibiotics!

BTW, when I have had UTI's (infections) before I had IC, I would get triggered by foods too. I drank some wine one night when I had my first UTI (didn't know what it was, thought the wine would make the pain go away) I thought I was going to DIE!!!! from the pain.

You get the same feelings from a UTI that you do with IC. So you can get reactions to foods and meds and beverages if you have a UTI, just the same as IC. Having a reaction to a food is not a way to distinguish a UTI from IC, is what I'm trying to say anyway.

Keeping my fingers crossed for you - how happy I would be if you wrote in a month or so, "I have no symptoms now and the antibiotics are working, my doctor was right!"

Blessings,
Lori

[Imustpee]

You should see my uro in Silverdale...he is kind, caring and understands IC...PM me...