Why did I wake up screaming in pain after TURBT

7 years 4 months ago #52475 by Jack R
Buttons5,

It does happen to an (apparently) few of us. I have been there.

Most important is that you talk to the doctor. Hold nothing back. Tell her/him what happened, how you felt, how long it lasted and what helped with the pain.

Then ask the BIG question: What can we do to avoid this in the future. A full and complete answer, entered in your chart, and forwarded to the facility where your next TURBT will take place. There is no reason you need to be in pain, no reason to fear a repeat TURBT.

Talk to the doctor. Get a Plan. Expect follow through.

If you cant talk to the doc, or the doc is not able to craft a solution to the problem, it may be time to search for another doctor.

You are the one who is in charge of your care. That is why you have to sign all those papers before anything is done. Teh doctor is your partner and employee. Tslk to the doc.

Best
Jack

P.S. My doc and the hospital staff was great. A plan was made for me, and TURBT recovery pain is history.

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: Frances64

Please Log in or Create an account to join the conversation.

7 years 4 months ago #52472 by Cynthia
Buttons, I am sorry you have to be here but welcome. What you are experiencing is not the norm. Tell your Urologist what you have experienced and tell him of your fears. What type of treatment are you to have BCG? BCG treatment is different than having a TURB its effects are cumulative and not associated with pain as much as irritation. If your Urologist does not listen to you and work towards a solution a new doctor may be in your best interest. If you are still in pain you can't control call your doctors office and tell them what is going on. We are here if you need us and keep us updated.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: Frances64

Please Log in or Create an account to join the conversation.

7 years 4 months ago #52471 by sara.anne
Replied by sara.anne on topic Why did I wake up screaming in pain after TURBT
So sorry to hear of your experiences. During the TURB, the urologist takes samples to send to the pathology laboratory so that an accurate diagnosis can be made, and also tries to remove any tumors possible. Most of us do not feel pain afterward, but depending on how much tissue and how deeply he goes, it can happen.

Have you asked your doctor why this happened to you? You should be able to ask your doctor ANY question about your treatment. YOU ARE PAYING HIM BIG $$$$$$ so why shouldn't you discuss this with him? If you feel that you cannot ask questions, and get honest answers, you need to get a different doctor!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: dani

Please Log in or Create an account to join the conversation.

7 years 4 months ago #52470 by Frances64
The last two TURBTS I had I woke up screaming in pain. Begged them to shoot me .
Last week the same I felt like they left a carving knife in my urethra. I am still in terrible pain . I am scared to have anymore treatments now. How do I ask the surgeon why this happens . Thank you

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne