Finally an answer

So what the dr thought was endo turned out not to be. The lupron injections didn't do anything other than give me hotflashes and night sweats. Wait it did shrink my two baseball size cysts. So back to the dr I went to find out why I was still in pain.

Since my insur wouldn't pay for injections the drug company paid for them entirely. They were curious about how I reacted to shots since I bad migraines prior to starting shots. No chNge for me u til I got Botox and then mg M got better. But anways.

Dr did ultrasound and we went over a whole lot more "stuff" and she said she had no idea what was going on but that she wanted me to see a dr at a local college who specializes in gynecology/urology/cancer she wanted to review my records and if he wanted to
see me they would try and work me in within the next month.

I've been in pain for three years, had laprascopic surgery during which they removed my appendix and still no relief. What's another month to wait.

That was Tuesday and on Thursday I get call saying new dr has reviewed my records and wants to see me the following Monday. He is opening office 1/2 hour early to work me in. I ask why and all I was told is dr feels I need to be seen immediatley.

Well I went to dr on Monday and after 3 hours in office, several tests and one painful one and many, many more questions I have a diagnosis: interstitial cystitis. There is no cure only treatment. A lot of symptoms make sense including with chronic bladder problems I had when I was little.

so now it's to the dr every week for about 5 weeks to have meds directly inserted into my bladder until my oral meds start working. I have to make a change to my diet. To most people it would be a huge change but a lot of the restricted foods are foods I don't eat now because of migraine/IBS.

Which was another subject he brought up. Apparently most people who have interstitial cystitis also have IBS and fibromyalgia. Although I haven't been diagnosed with fibro my doc has mentioned it. Then he said people with IBS are known to be more likely to have migraines. He said not everything is understood about the four but in some way they are apparently connected. Oh and this dr is teacher at medical school of college which his office is part of. Med student/resident was one who brought up my potential diagnosis before he tested and confirmed.

Thought I would share my latest info and see if anyone has interstitial cystitis and what your thoughts on what my dr said.

Glad you got some answers. It is always such a relief to get an answer - any answer.

It is interesting that this is yet again another possible autoimmune illness.

http://ezinearticles.com/?Is-Interstitial-Cystitis-an-Autoimmune-Disease?&id=635957

That was the first website I came to when I searched IC and autoimmune.

The notion that the majority of the people on this site are sufferring from autoimmune is becoming quite entrenched in my mind as more and more people find answers.

This is the easiest site I have found so far re autoimmune.

http://www.gethealthyagain.com/autoimmune.html

Congratulations again on getting an answer - at least you know have a starting point.

Thanks for those links. I have the starts of an aura, and not to mention that it's 315 am and I should be sleeping. I will read them later today. I am going to try and see if I can sleep to avoid an M. I have plans for today and a M wasn't one of them.

Just loved this comment out of the first link on CI.

"Not so long ago, it was believed that IC was a psychological problem and that the symptoms were a manifestation of this. That belief left people, especially women, confused and wondering whether they were imagining their symptoms or not."

How familiar is that!

Yup...I think it was ten years ago my GP asked me to see a shrink because "nothing was wrong". I did...nothing for a shrink to take care of either.

Guess I'm just a hysterical female. At least we have a diagnosis though...where does that leave MBG and the rest of the guys? Why do we never hear of hysterical males?

Well as you know all men are the strong, silent types who suffer in silence. Ha ha ha.
(Sorry guys)

Marion,

Since you're not a guy, how would you know? I was born in Texas and that makes me strong, tall and handsome. Male Texans never cry, they just tuff it out.

Paradox,

Men never get hysterical. Never, Never, Never, no, no, no, no, stomp, stomp, stomp!

Hal

"Strong tall and handsome". Hal, maybe I will be over to go storm chasing with you.

Hal wrote: I was born in Texas and that makes me strong, tall and handsome. Male Texans never cry, they just tuff it out.

So you're the reason C&W songs were written. And Marion, I have dibs on a date.


Becky - glad you have some sort of answer. Hopefully it helps and makes your life more comfortable. I'm glad that they took you seriously and you got answers. Sorry you had to endure Lupron for nothing - that stuff is awful.

Thanks. I only had three shots but I'm still having the hot flashes and night sweats. Hoping they go away soon.

Tngirl,

I have had night sweats since I was a kid. I have also found that if I turn up the air conditioner in the summer, I don't sweat as much. In the winter, I leave the window open. When I lived up north, I woke up one winter's day with an inch of snow on the bed! I sure slept good that night.

I get hot flashes now, but it only happens when I open the oven to take out the roast.

Hal

The strangest part of the hot flashes seems to be they are worse now that I have stopped the shots. I was in the grocery store this evening in the frozen food aisle and opened a door to
get ice cream out and continued down the aisle when my mom noticed I was sweating.

The temps at nite have been down in the 50s here and I have the fan on high still and I am still burning up. Hoping It gets better!!

Becky,

On the serious side, what are you having these problems for at the tender age of 26? That is a real bummer. I could understand it at 62. I would also think the MD could find the problem and fix it. I'll bet if you were the First Lady you would already have a solution.

Migraines are bad enough without having to deal with that other junk.

Hal

Hal,

She was on a medication that chemically induces menopause. They thought she had a "female problem" and this is one way to fix it (been there and done it too).

Becky,

Hang in there. It might just be taking longer for your body to flush it out than you think. Keep track of when you get them and if not stopping soon, talk to the doc.