I Survived, finally some answers!!

[LauraLynn]

Hi there!!!

Well I survived my cysto/hydro yesterday. It wasn't nearly as bad as I feared!!! It was initially scheduled for 11:30. I was supposed to be at the hospital by 9:30. When I got there they said you are a rush, her first case was canceled and she is waiting on you. I was freaked...no time to adjust. Any way after the surgery she went out and talked to my boyfriend and showed him pictures. She told him I had what she thought and used initials. I am assuming IC. My boyfriend forgot. He did say that she said at first the bladder looked fine and then all of the sudden all of these red marks appeared. She showed him a picture of what looked like an ulcer or blister that she had to cauterize. He once again forgot the name of it to. Could this have been a Hunner's Ulcer??? I don't know much about them?? Or what could it be?? Is it common for them to have to cauterize your bladder??? Unfortunally I don't go back to see my doctor until May 21st, that was her first appt. and she said it would be a while for the biopsy to come back. So I guess I still feel a little in the dark here. I want to know it is not cancer or something.

I am feeling o.k. today. My throat is still kinda sore and the intense pain when I urinate is starting to subside. I can not wait to talk with my docter to find out all the answer. I left the hospital with no meds so I can't even begin the road to recovery yet. I want to get feeling better. My boyfriend and I are going to Florida for two weeks starting June 1st and I really don't want to be in pain.

Does anyone know or have experience with Bladder Q, or prelief?? Any suggestions on what I can do in the mean time before I go see my doc???

I just want to feel better SOON!!!!

THanks eveyone!!!

[Sarojini]

Well, I'm glad you survived... it sounds like you probably have IC to me too. I'm sorry about that, and I'm sorry you have to wait so long for your post-op visit!!

I can't believe your doc didn't give you any meds!! Not even pain stuff? Yeeeowwch. My doc wrote out prescriptions and they were given to me before I left the hospital after my cysto/hydro.

Can you call and see if there's anything she can do for you in the meantime??

Other than that, rest up, and try to stay relaxed and positive... :) And we are all here for support :)

[kelly McC]

Its great you survived.. I hope your not in to much pain... My pre-op appointment was several weeks later and my family all had different ideas of what the doctor actually said. lol
It gave me lots of time to write down questions and read up on IC. Best wishes and take care. ,
Kelly

[Iris]

Hi, do hope you are not in too much pain after your cysto/hydro, I know my urologist that I first had, did not give me any pain meds after I had mine done. I had to call in for some after a weekend of pain. I finally got some from the other doc who did surgery on me at the same time as the cysto/hydro. Needless to say I have changed uros, and am really pleased with mine now, who is very caring and compassionate. Hope everything goes well for you on your trip down to Florida. Keep us posted as to how you are doing and hope you get some relief from the after effects of your cysto/hydro. Hugs Iris.:hi: :grouphug: :flower:

[ICNDonna]

First of all, I would telephone the doctor's office if you are in pain and ask specifically for some pain meds for your recovery period. And at the same time, tell the doctor that your boyfriend didn't remember what he was told and you want to know.

Sending warm healing thoughts,
Donna

[Sarojini]

I agree -- my husband forgot some stuff my uro told him when he came out after my c/h. He's normally VERY with it and remembers stuff, but he was so worried about me he wasn't thinking straight. Hubby was babbling something about scars and blood when I was in recovery, and I ended up calling the uro the next day and asking what exactly he saw :)

[LauraLynn]

Thany you all for your thoughts!!!:kiss:

I did call my doctors nurse about finding out what she thought. Man you would have thought I was asking for a strangers info. She wasn't to nice and said she didn't have the information in front of her and the doctor would discuss these thing with me at my follow up appt. I explained that my boyfriend had forgotten some of the terms and she quickly dismissed me by saying that The doctor will go over all of that at my appt.

So I guess I wait. The hospital where I had the surgery (and where I work) did call to see how I was feeling and to make sure I wasn't having any blood in my urine. She asked if I had any questions. I asked them what I could take for pain and she said Ibuprofen. So that Is what I have been taking.

I will update you after my appt. that isn't until May 21st. That stinks!!!!!!:(

Thanks for all of your help. By the way do any of you know about Bladder Q??? My sister said she read that it was supposed to help with IC?? Any thoughts??

[Sue]

CONGRATS

[ICNDonna]

If you're still in pain, you might telephone your doctor even tonight. There should be someone on call for him if he's not available. Or go to ER if you can't get any help from him.

Warm healing thoughts,
Donna

[moelissat]

I agree. Even if you call at night and get another URO on call,maybe they could at least call you in something for pain.That just doesn't seem reasonable to have to go through that kind of pain when they could prescribe you something.

[Kimberly31]

OK all I can say is OUCH!!
No pain meds?????? Man I couldnt even hardly get out of bed for 4 days and also had a terrible time with retention I am sure that is part of it.
It is four weeks from my surgery and much better but still have pain while urinating but it is very common to get into a flare after having this surgery done.
Your one tough woman to be able to do it without any pain meds.....
Take Care of yourself,
Kim:thumbsup:

[blue]

I didn't have any pain meds after mine either, and I had a tumor removed. I did ok, not alot of pain.

Are you in pain? If you are, call and ask for pain meds!

How long until your follow up?

[Zanni2]

To answer your question about Prelief. It's a dietary supplement you take with meals to lower acid content in food. I do find it helpful for preventing flares caused by acidic foods. This way I don't have to give them up.:thumbsup: I just had my cysto/hydro and bladder biopsy yesterday. I also had a lot of pain while urinating yesterday, but today not much. My frequency, however, has increased (about every 30 minutes) and I feel more inflammed than before. :( The doctor just told me to take Ibuprofen. He didn't give me anything else to take. Fortunately, I have the rest of the weekend and Monday to recover. Hopefully the flare I'm in will wear out by then!

Zanni2 :angel:

[crystilclear]

I would look up the IC diet if you think you have it try to avoid foods that might aggrivate your bladder. Drinking water could help to dilute it and call and get some apin meds if it gets too bad. If you don't live in WV you shouldn't have too much of a problem getting some. I hope the biopsy comes back with no problems. Good luck. Sorry to hear that you have IC. I'm still trying to find help as well. Take it one day at a time. One thing I'm learning the hard way is not to push yourself. If you start hurting take a small break and get some rest. Good luck. You're at the right place! These ladies are wonderful! - Chris

[Donna L]

I'm glad the you survived the cystoscopy...but am sorry your doctor did not give you meds for pain. My uro,who is familiar with IC, prescribed vicodin for pain. urised, and elmiron. I had to use a bladder bag for the 1st night as I was not able to urinate, but was fine after the bag was removed, even tho I was afraid to "go" at first. A friend who is a nurse suggested just blowing out,as if through a straw, and that was very helpful. If you are in pain, I would do as ICNDonna suggested, and call the dr's office at night. At least you will be able to speak to a doctor and not a nurse who wins the "most uncompassionate"award!! Shame on her for the uncaring way she treated you. I hope you feel better soon.
Donna L

[tarasmiles]

Wow- I can't believe that you are getting through it with out pain meds.. I get my done on Wednesdays (because thats the only day my uro is at the hospital here in my town---I live in a small town and don't want to drive to the city--it's takes at least 45 min to get there and the drive alone is awful) anyway-- I'm down from wednesday 'till Saturday or Sunday with pain.. I usally see blood for at least the first day and often for the first two days. I get the ulcers caterized everytime I go (I have it done about every three months)

It's out paitent and I really wish I could stay the night with a cath and IV pain meds because after the anthesia effects are gone the pain is extreme... I go by myself. I usally ask a friend to drop me off and then either my Dad drives up from the city to take me home or I wait for my husband to get off work and pick me up. I almost never see the doctor after the procedure and if I do I don't remember so, like you, I have to call to get info..

The pictures I have of my bladder look like one giant ulcer. He said there wasn't any part of my bladder that wasn't very inflamed and full of ulcers.. He's done only one biopsy.. and that was done about 6 years ago.

My doctor send me home with cipro and darvocet. Elmiron made me throw up constantly and I was recently switched from Elivil to Zoloft... I also have Vicodin from the pain doctor I see...

I really hope you find all the answers you need. If it takes so long to get in to see your doctor would there be anyway to look for a different one that may be able to fit you in his schedule better?

Tara

[Ginny]

It sounds like you are doing ok. If the pain gets bad call the doctor after hours. This way you can bypass the nurse who sounds like she is not going to do anything to help. You will end up having to leave a message with the service but you should get a doctor (yours or covering) calling you back. Maybe while you have him on the phone you can ask him what he told your boyfriend. After living with this illness you learn the tricks.
Feel better.

Ginny