Can anyone tell me if their doctors gave you a picture of your bladder.

[Teresa Stokes]

I had a lap and a hypo. I want you all to look at the video of my bladder. My bladder is almost completely red except for some spots. Let me see if I can attach the video.
The bad thing is the video gets more red as the time goes on. Is this considered mild or moderate. Please help because I can scared.
Attached Thumbnails

[Teresa Stokes]

Here's my picture, I could upload the video though. I am trying to find out if this is normal looking because I am really afraid at this point.

T...

[ICNDonna]

I can't tell from the picture what your symptoms might be like, but the bleeding definitely shows.

Donna

[april ryan]

Teresa,

I can't really see the cracks very well, but clearly the bladder is inflamed. This doesn't condemn you to a severe IC, because once inflammation has gone down a little, it won't be that bad..

My bladder was completely red too, but I have not been in much pain so far. Sometimes moderate, but tolerable.

Important is how you feel, not how your bladder shows; in fact, adding stress and worry it's probably causing more distress than you need!

Good luck

[stac7_8]

I was not given a picture of my bladder, but I was told that is was badly inflammed and that I had the red spots, but no ulcers....

I agree it's the way you feel, adding more stress to yourself, will make that worse.

Just ask your doctor what he considers it to be and then go by your level of pain as to how bad your IC is....That's what I would do, but I'm not a doc ok

Good luck to ya:smile tee

[mary124]

With all the hydros that I have had I have never received a picture. I have looked at my bladder- let me tell you its not a pretty site!

[BT2008]

I have never seen the inside of my bladder, and I really wish I had a picture of what it looks like! I want to "see" what is causing me so much PAIN!!

All I know is what the OR Report says: "scattered areas of hemorrhage and glomerulizations w/bloody efflux"

hmmm...no mention of inflammation at all...

Even though I have seen pictures of this on the internet, I still wish I could see mine! If I ever have to have another cysto/hydro, I am definitely asking for pictures!!

~Beth

[Briza]

I received a copy of my photos but only b/c I insisted on them before the surgery...otherwise they were only going to make one copy for my files. Would post them but don't have the means do so...but the photos ARE handy to have on hand, I have found, particularly when seeing new drs.

I was diagnosed with "mild IC" however, I can tell you that my pain and other symptoms for the year leading up to the hydro and for many many months afterwards ranged from moderate to severe on a 24/7 basis!!! So I go by how I feel much more than what the dr wrote on the post op report!! I also had hunner's ulcers that were burned off and many glomulerations and a very inflamed bladder!!! SO you would think I would have been dxd with at least mod IC given my level of symptoms and pain at the time in addition to the results of my hydro, which biopsies also confirmed inflammation indicative IC:confused: So for me I just go by how I feel to judge how severe or mild or mod my IC is on any given day! Luckily most days for me now are very good. I wish the same for you in the near future.

[valkay18]

Yeah, that looks very familiar! I just had my cysto w/hydro a couple weeks ago, and I did receive a picture for my records. My bladder does look like that. I have the red spots in every quadrant of my bladder. The doctor did not say I had a "severe" case of IC. He said he has seen much worse. From the pic, I definitely see the red, but I can't tell how "severe" the IC is by looking at it.

I suggest you call the Uro's office, and talk to the nurse. Ask her to have the dr look at your record and tell you how severe your case is.

[Briza]

Yes, you should ask your dr to explain the results that should be written and in your file on your post op report. If you have not yet had a follow up appt after your hydro then that would be a good time to discuss those things in person and see the post op report yourself...personally I would prefer that to just calling for the info/explanation, b/c from my experiece I have been given much more time to discuss these things at an appt rather than a rushed time limited phone call.
You can even ask for a copy of those results for your own personal files. I have my own copies not of my entire med files, but of each and every surgery/ dx procedure/ biopsy/post op report results. Those few copies were provided to me when I requested them at no cost.
I was not told that I had hunner's ulcers were found and burned off during my hydro. Would have liked to have known that!! Did not find out til much later when I asked for my own copy of post op hydro results and read it myself!!! (among a few other new to me surprising things that dr did not tell or explain to me at post op appt...live and learn;))...so now I always ask for post procedure results as soon as they are available!!! Take care!

[BT2008]

You know, I don't think my uro ever said after the cysto/hydro whether or not my IC was mild, moderate or severe. He just said "IC"...and at the time I didn't know there were three different levels to dx.

He has, however, told me since then (on several occasions) that I have "Severe IC". And, I just got a copy of my medical records the other day, and that is what is listed in my chart.

~Beth

[Zygala87]

Teresa I have four pictures and they all look like road-kill. It has been over two years now since they took the pictures. I do not know what my bladder looks like now but I can tell you I am doing great. Very little pain and never have to get up at night. I stick to the IC diet and take 200 mgs of Elmiron a day. We are all so different so one can not go by my results but I would not let that picture stress me out. Also stress can put me into a flare more then anything else. We all care about you here. Keep us posted. Thinking only positive thoughts for you. Hugs, Ziggy

[Preacher-Girl]

If somebody hands me a pic after my procedure it will certainly make me vomit. I am wondering if this pic is freaking you out more and adding stress. I agree with the ladies that said they go by how they feel. I guess I understand if people want to look at theirs. But I never want to see mine. Ever.

[A-Thompson]

I'm New... But I had a Lap surgery to see about endo and they found the spots on my bladder during a cysto. I did have a little endo but not much. I was diagnosed with IC. My gyno thought that 90% of my pain must be coming from that. I was diagnosed on the 7th of april 09. so pretty new. She gave me pictures of it...pretty cool to see it.

[ouch_a_lot]

Theres an actual video (of a distention) on youtube if anyone cares to take a look. Theres a few other things of interest, including a speach from Dr Moldwin and some speel from a guy from Pfeizer. Just type in Interstitial Cystitis.

[L. Thomas]

I did not get a copy of the video but as the cysto was preformed I watched on the monitor and Dr. Dell explained everything he was seeing, including the anatomy of the bladder and the sling from surgery for stress incontinence. My bladder looked like a blood shot eye.

[bri25]

I have a picture of mine. Annoyingly enough it looks like a normal bladder. The only thing the doctor noticed is my bladder holds half of what it should. Made me wonder if everything was in my head.

[MommaWuzzi]

My bladder is red with darker red patches at fill; the doctor said that he saw three possible hunner's ulcers at fill. It begins to bleed when they have it at 500cc, and blood is very visible (called it bloody efflux) when they are draining.

I've considered posting them here (I've seen some put it on their signatures), but realize that visual cues do not equate to pain levels.... and that a lot of the comparison stuff isn't healthy - you end up wondering if you're being "strong enough" or if your pain is "worse" or "better" ... in the end, it's IC, it hurts, and your IC experience is uniquely your own. We are just sharing the common parts with each other because it helps each of us. :)

[Bekah79]

Teresa, My bladder looks a lot like yours. I also have Hunner's Ulcers that could be claearly seen. Kinda scary isn't it. When I first saw the pictures I was like OMG! so that's what why my bladder feels like it's on fire so much of the time. I hope you respnd to treatment and your bladder gets better.

Good Luck

[serinity]

I have four pics as well, I wasnt expecting to recive them however it realy made me understand the severity of the condition we suffer from every day. I was only 18 so they have also helped me educate docters that were not listing to me when i ended up in the er. There not the best site to see but use them to inform others when you need to, and going by w you feel is very good advice. My doc never said the severity of my IC after the sergery but as tyme went on he noticed that i was geting worse. And have yet to find a comfortabl amount of relief even when doing everything i was told to. I wish you luck, try to stay away from stress, the slightest amount of it has me doubled over. Remember your not alone!

[MommaWuzzi]

When I went to the urologist he said the redness can be an adjustment of the camera white balance, and not red at all. He said most of his cystoscopies looked yellow, actually.

He did agree with the Hunner's ulcers diagnosis, and I realized after watching a video of a cystoscopy that my bladder was only filled ONCE instead of twice. Usually the pettichial areas (glomerulations) show up at the refill, which makes me suspect the initial red patches that bled at the first fill are the Hunner's ulcers...? This is just a guess though, because it finally occurred to me a few days after the visit with the urologist...