Not Ic!!!!!!!!!

[LauraLynn]

Well I went for my post op appt. today. She said I don't have IC. She said that I only had a few hemmorages and my bladder held 800cc which was not consistant with IC. Also my biopsy came back as normal!!! She was baffled because my symptoms and history all scream IC. She suggested that I go see my gyn that maybe it was my endometriosis. She also suggested I see a GI dr. I am so very frustrated. Although I am happy I don't have IC I am still having bladder pain????

I will continue to pray for all of you:pray: I thank you all for your support during this very trying time of finding a diagnosis. With out some of your kind words and support I would have had many a sleepless night.

I am giving up right now on finding a solution or answer. My boyfriend and I are leaving for Florida in a week an I just want to put this all behind me. I will continue my search when I get home and just pray I don't have any "flares" while I am there!!

THANK YOU ALL AND GOD BLESS!!!!!!!!!!:kiss:

[kelly McC]

glad to hear you dont have IC hope you feel great for trip and hope when you get back you can get some answers.
Best wishes and take care,
Kelly

[Sarojini]

HI LauraLynn,

Please don't give up. I agree, go enjoy your vacation, and begin again when you get back...

I just want to let you know that there is a subset of IC patients who DO NOT have any glomerulations/pinpoint hemmorhages in their bladders upon distention... however, they have all of the symptoms of IC. There is a woman here, MelanieJ, who is one of those patients... I haven't seen her on in a while but her story is in the "Patient Stories" section on the ICN main page.

SO, it is possible you have IC even if your bladder didn't look that bad.

You may want a second opinion at some point -- but until then, enjoy your Florida trip :)

[Zanni2]

I agree with the last lady who replied. You could be a mild IC case; however, I also agree with your doctor who recommends going to a gynecologist. Endometriosis often makes bladder symptoms worse, especially during ovulation and PMS. This was true in my case. Birth control pills might help, but they didn't help me. I had a complete hysterectomy with the removal of my ovaries. Although I was glad to be rid of ovulation and PMS symptoms, my bladder symptoms continued. My recent cysto/hydro and bladder biopsy did prove me to have a mild case of IC.

It wouldn't hurt to seek a second urologist's opinion as well. Whatever you do, don't give up. Sooner or later you'll find the right doctor who'll be able to help you.

Take care,

Zanni2

:grouphug: :pray: :angel:

[vm]

I agree with the last 2 ladies... My bladder held 750 ccs, I think, and I do have IC. Keep looking for what is going on. I hope and pray your doc is right and you don't have it, but press on to find the source of your pain. :kissing:

[darlene]

Is it possible you have early IC? My bladder only holds 300ccs and has glomurulations, but I have had IC over 30 years. I believe many women have had gyn surgeries they didn't need, because doctors know so little about IC and tend to think pelvic pain has gyn origins. Get other opinions, and don't agree to any surgery unless you are sure it is needed.

[ICNDonna]

I have to agree --- not all IC bladders show the pinpoint bleeding when distended. And a large bladder capacity does not necessarily rule out IC.

On page 28 of "The Interstitial Cystitis Survival Guide," referring to bladder capacity under anesthesia, author Dr. Robert Moldwin states, "...the average capacity of most IC patients is approximately 600-700 cc. Does this men that if a patient has an anesthetic bladder capacity of 1,100 cc, that the patient doesn't have IC? Absolutely not ....."

You may want to consider a second opinion.

Warm hugs,
Donna

[Sarojini]

Yep, my bladder capacity under anesthesia, according to my medical record, is 600cc. Probably smaller than normal, but still large enough...

I just wish I could use more of the 600cc while I was AWAKE.... :)

[LauraLynn]

Thany you all for your replies!!

I was begining to think that this pain is all in my head. Like I said she did show me the picture and pointed out the hemorrages but said that the typical (sp?) IC bladder would be covered. I only had minimal. I am already taking birth control continuous for endometriosis. I guess I will go to my GYN when I get home and if he feels it isn't that then I will seek another opinion. I am so frustrated. Does someone that has a normal bladder have hemorrages upon distension??? Even minimal???? They did not appear until my bladder was distended fully.

Thanks again!!:kiss:

[ICNDonna]

It's possible for a normal bladder to have some pinpoint bleeding when distended, but a normal bladder is not painful.

Symptoms are an important part of diagnosis.

Warm hugs,
Donna

[jason16]

I've spoken with Dr. David Wise, who is one of the co-authors of the "Headache in the Pelvis" book. According to him, studies have shown that there is an imperfect correlation between IC symptoms and the bladder hemmoraging that is revealed by hydrodistension. He cited a study in which nearly half of the women tested showed some signs of IC, yet had no symptoms. Also, many of the women who had IC symptoms had no visual bladder abnormalities.

These studies have inspired IC experts like Dr. Parsons to look at the results of hydrodistension as one piece of the puzzle, but not necessarily concluding evidence.