Finally got Hydro Pictures and Report!

[mela414]

After calling the hospital and demanding to see my hydro pictures....I got them in the mail last week. boy was it upsetting! The report read "severe Interstitial Cystitis". When I saw the pictures it was upsetting. The first picture (when they went in) didn't look too bad. There were a few petecchiae and some "cracky" looking areas. The second picture which they took when they distended was pretty scary. I could see areas of irritation/erosion/bleeding all over. The third was very bloody! Of course after seeing the pictures I felt more hopeless.....like how the hell am I going to fix this!
then I started to think that........anyone who had their bladder stretched that much would look like that. has anyone been stretched during the hydro and not have the pics look so bad. For the dr to write "severe" must mean that it's pretty bad. I'm sure he does this often enough that there are other cases that didn't look this bad.
I'm so confused, so upset, so angry and feeling so hopeless. In addition...I am in constant pain and all the while trying so hard to watch what I eat or drink........I also have to watch all the supplements but then again...you guys already know that.
ugggghhhhhhhhhhh :(

[traceann]

Hi Mel! Well, I am glad you got your report and your pictures! Knowledge is power, right? Just keep doing what you are doing, don't let them discourage you - just vow it's going to get better, you can do it!!! ;) You will find something to work, and you will get the diet just right for you :) Just don't get discouraged!!! Please please please!! Just think, ok - I've seen them and read the report, now I know what I am dealing with and it's onward and upward from here! Well, or at least try, :biglaugh:

Hugs!

[ICLori]

Now you have a diagnosis - and the good news is, your case has been labelled severe so hopefully the doctors will be more motivated to help you.

Now is the part that you are waiting for - finding a treatment that allows you to be comfortable most of the time or all of the time!

Blessings,
Lori

[mela414]

Thanks for the support guys. I am such a basket case lately and so stressed over not feeling well. There are so many other things going on too that I feel like my body is breaking and nothing I do helps. I am in tears so much of the time from the depression. I am so grateful to have found a place like this that is supportive and informative. you are right knowledge is power. Getting a dr to help is the next step as the uro that I am using now is very limited in the help he can or wants to offer.
thanks

[Sarojini]

Never saw the pictures, but read the operative report on mine. Also had my husband describe to me how my diagnosing uro came out of the surgery area, took his mask down, knelt in front of my husband (instead of making hubby stand to greet him) and said, "Well, what we have here is a girl who literally has to pee ALL OF THE TIME. If just ONE drop of urine touches that bloody little bladder, she will have to pee. I distended it to 600cc but I would be VERY surprised if it would hold more than 90-100 cc if she was awake."

And then at my post-op appointment with him a week later: "I don't normally give Percocet 10's to my patients after the hydro, but you ... I could tell you were going to have a REALLY hard time so I gave you 40 of them. How many did you need?"

So with all that, I think I was probably in a similar place to where you are now -- like, oh great, I have severe IC. I can deal with incurable, but is this EVER going to get ANY better?? Is it ever going to be normal again???

But -- the good thing is, it DID get better :) My coping skills got better, and when I found the right combo of treatments, the symptoms got better too. Oh, yeah, I still flare and complain of pain sometimes, but I look at it this way -- I went from laying in bed most of the time to working 50 hour weeks again in the space of about a year and a half :)

You can do it! :) :grouphug:

[sweetangel2080]

mel
I think for most people past diagnosis, things have only got better or stabilised. There are people that have got worse but the majority as I know do get better.

[Babs RN]

Mel,
I know how overwhelming it is to be told something is severe...I about died when I was told mine was end stage--it was a horrible realization at the age of 35. I did learn that there are ways to intervene, not exactly the way I intended to see my life at this age but at least there are ways to make my life tolerable.

Hugs,
Barb :grouphug: