New Indiana pouch bladder & pelvic pain

5 years 6 months ago #55808 by Cynthia
Replied by Cynthia on topic New Indiana pouch bladder & pelvic pain
Ask away I may not have an answer but I will listen. Hope that they find the reason for the pain and it is an easy fix.
Let me know how it goes.

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

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

5 years 6 months ago #55802 by anstreet77
Replied by anstreet77 on topic New Indiana pouch bladder & pelvic pain
I just wanted to update you on my doctor appointment today. My doctor agreed that the walking/pelvic issue was not normal. I had a CT scan done this afternoon. He said I could have fluid built up in the pelvic area that may need to be drained. I hope to get results sometime tomorrow to get answers. Thank you for answering my questions. I may have many more since you are a pro now.

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

5 years 6 months ago #55783 by Cynthia
Replied by Cynthia on topic New Indiana pouch bladder & pelvic pain
LOL I forgot about the back wall of my vagina, I will not even comment on that. I also had chemo and radiation. Very similar in more ways than one.

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

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

5 years 6 months ago #55782 by anstreet77
Replied by anstreet77 on topic New Indiana pouch bladder & pelvic pain
Thank you for your response. We had a very similar surgery. We took my urethra, lymph nodes (4), my cervix, my uterus, and part of my vagina. I have discussed the pelvic pain with my doctor and it’s normal. The surgery was major, as you know, and the amount of chemo and radiation that I had also plays a factor. I do go into my doctor on Wednesday and will again discuss this with him.

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

5 years 6 months ago - 5 years 6 months ago #55781 by Cynthia
Replied by Cynthia on topic New Indiana pouch bladder & pelvic pain
Hi sorry this took so long. First of all let me say that everything I say is coming from a crazy lady on the internet and should of course be discussed with your health care team. In 2006 I had my ureathea, complete hysterectomy, radical cystectomy, 32 lymph nodes removal with a navel Indiana constructed. I have talked to 100’s of people who have had Radical Cystectomy from what they have told me their pain situation was different than mine was. The only real difference was the ureathia removal. I was in more pain than I can explain for three months post op that gradually diminished with time until it disappeared by about five months or so. I have a high tolerance for pain so I felt that something wasn’t typical. I don’t share my expiriance when I am talking to someone facing a RC with out ureathia removal because I have a feeling there is a difference or was in my experience. Five weeks isn’t that long out I found walking helped get things moving in the right direction and a balanced diet, when in dought back to basics right? There is nothing wrong with calling your surgeons office and leaving a message with his nurse asking if this is normal is there? It would be the best thing to do because no one on the internet can tell you why you are feeling pain and it is better to error on the safe side.
Let me know how you are doing.

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

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

5 years 6 months ago #55776 by anstreet77
Replied by anstreet77 on topic New Indiana pouch bladder & pelvic pain
Thank you!

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

Moderators: Cynthiaeddieksara.anne