Third Cysto Yesterday

[Hollydoll85]

I really like this new doctor. He did a cysto w/hydrodistention and a bladder biopsy. First doctor to actually pay attention to my opiate allergy and he actually sent me home with pain medication. They said I have severe IC (well imagine that...known that since 04) and my capacity is now less than 700cc. He is going to treat me "aggressively," but says that the best option may be to remove part of my bladder and make a new one with intestine. I didn't know exactly where to put this thread, but I just wanted to update everyone on what's going on with me.

[donnadb40]

You mentioned an opiate allergy... what are your syptoms??? I am having alot of problems with my pain meds that seem to me to be allergy related. My main symptom is that my vagina actually seems to swell almost inside out and BURNS!!! Not sure if this is something else or not but it seems to happen mostly when I am taking pain meds.. Also have itching and hives but taking the meds with a benedryl seems to help that... Nothing helps the pain down there!!!!

[marsi4]

Hi Holly

From reading all the posts of people who have had augmentation surgery it has not been successful. Don't put yourself through a surgery that isn't going to make you better. If you have this surgery done it is very likely that you will have to have your bladder removed completely. If you are not willling to have a cystectomy I do not recommend it. Please do your research on this procedure and see what the outcome and results are. I don't know why doctors are still doing this. They are not doing their research and are putting patients through pain and suffering needlessly. If you are in a lot of pain and distress and bladder removal is recommended by your doctor and you consent to the surgery you , it would be a better choice for you. Most doctors are no longer doing bladder augmentation. There are several people on the board who had bladder augmentation and it wasn't successful and they had to have their bladder removed.

Marsi4

[SrMaggie]

I would be in heaven if I had 700cc capacity. Mine is 150cc under anesthesia. That's enough to drive me crazy. I look at a glass of water and think about how many trips to the bathroom it means.
Do the research before you have surgery. I was contemplating having some sort of augmentation or removal and don't think it's for me right now. I can't picture myself in the hospital for all those days, nor having the recuperation time. Now, when I'm in a flare I have other thoughts and would like to rip it out myself. So, take the time when you are feeling a bit better to make the decision rather than when you are in pain and desperate for any solution.
Maggie

[ICNDonna]

I was just thinking the same as SrMaggie. My capacity is far less than that. Normal bladder capacity is about 500 cc when awake, but can be double that under anesthesia.

Donna

[Trishann]

Holly, please do a full research on augmentation surgery with IC, not just augmentation surgery. Please find out what you might be facing with this time of surgery. My doctor did this type of surgery before with people who have IC and now he refuse to do surgery leaving part of the bladder in. But whatever you do, I just ask you to do your research and let this be part of your decision to and not just your doctor decision.

Trishann

[ICLori]

Holly, I echo everyone's concerns about augmentation with IC. I have yet to hear of a single case of this on a person who has IC, where it has turned out well. If a doctor suggested that surgery to me, I would say "no way!" so fast that his head would be spinning from it! I might consider outright bladder removal, if my symptoms come back, but I would never personally consider augmentation because I have only heard of failures with IC and no successes.

Blessings,
Lori
P.S. I'm glad you like your doctor, though - that's so important, to have a compassionate doctor!

[Babs RN]

I'll throw in my 2 cents as another severe ICer--first of though, I am thrilled that you have a good doc. Please research the augmentation and cystectomy options before making a decision. My bladder capacity under anesthesia is around 200cc with multiple returning Hunners and awake bladder capacity is about 90ccs. Just want you to go into any major procedure with your eyes wide open.

Hugs,
Barb:smile tee

[akrose]

I recently recovered from ovarian cancer with my final chemotx 11-6-06 and total abd. hysterectomy 09-12-06. Now I really want to find out what is in my bladder/urethra that has caused almost 2 years of urinary freq., urgency, pain- as most of you already have. I have had office cysto- showed nothing, then had another doc dilate urethra, cysto and office hydro- he saw nothing except dilated urethra to 32fr which caused severe urethral pain for 3 months back in aug 05, severe unrelenting burn. So as you can imagine I am scared to death about this cysto/hydro coming up. I will be in outpt surgery, so I will be asleep, he promised to not dilate urethra - will use a 22fr cystoscope. I know I need this to get the info on what is wrong with my urinary tract for the past 2 years ( the ovarian tumor did not cause the bladder/urethral pain- ovarian cancer is painfree at stage 1c), but I need some encouragement from any of you here who have had the procedure and did well afterward. Thanks for your support.