UOAA Discussion Board

Hello to all,

I am 2,5 months after the surgery. I had a radical hysterectomy and continent urinary diversion, and am having a Miami pouch. My vagina was reconstructed too. I had cervical cancer. Had chymo and radiation when they first found it last August, and everything was all right, but in 3 months it reccured. So, had my surgery on May 04, 2009 in MD Anderson! Great, emazing Dr. Wolf performed the surgery!!!! She and her team did a great job.

I was hoping that with every day I will feel better but not yet. I have a very bad pressure on my anus which gives me burning, pain and an urge to go. And I do go very frequently. Sometimes I have bowel movement up to 15 times a day. I also developed hemorroids. I know that they give much pressure too, but not that much!
Some time ago for some reason my vaginal discharge increased, and I have a lot of pressure on my vagina too. My doc said that discharge is normal because of reconstruction.

When I take pain pills, the pressure gets less, and I don't feel so much urge to go. But I can't live on pain pills forever or can I?

Oh, nearly forgot, CT of my spinal found a little fracture on my bone somewhere close to my tail bone, so they also think that all the pain and pressure comes from it. The fracture is not cancer related. I also had a bone scan, but it didn't show anything. I was so releaved when the test came good. But how in the world did I get the fracture?? I didn't fall, didn't hit, anything. Today am having a test for bone density. Maybe I am just having osteoporosis??? I am blond with blue eyes, they say that I am a great candidate for it.

Everybody says that I am a very strong person. And my surgen called me the most motivated person she has ever met. But with all this pain every day I become sooooooo desperate, and don't believe that it will ever get better.

The only good thing is that my Miami pouch is more or less behaving. At least I can sleep the whole night until my anus starts burning and activity in my bowel ( intestines) and pain wake me up.

Has anybody had the same thing? Will it ever get better? Sometimes I get so desperate that I wonder if it was worth it ( forgive me Lord for such thoughts). I am only 46, have always had a very active life, actually came back to work only in a month after the surgery. Because of my work I have to traveol a lot, including overseas. Gosh, I am so much scared of my first upcoming trip in a month......

I have a great family, very much support from my family, friends and great people at work.....But I cry every day feeling very miserable, but playing happy on the outside that nobody could see my misery.

I need to talk to somebody with the same experience.

Thanks a lot.

Liudmila

My gosh friend! You are still very early in your recovery. It is totally normal to be feeling like you do. Not only have you had your urinary system redone, but you have also had a hysterectomy, both of which can cause depression. You have just been through MAJOR, MAJOR surgery and have gone back to work at what sounds like a pretty demanding job what with the travel and all. As for youe bowles, this too takes time to readjust as they also operated on your bowels. I had trouble with diarrahea after my surgeries too. I have an Indiana pouch due to Interstitial Cystitis, but I had had other bladder srugeies before that one. Initially I had my bladder rebuilt and then when that did not work I had the cystectomy with an ileal conduit. That was in 1986. My conduit had many problems so after 6 years I had it converted to my pouch. It has been almost 17 years now since I had that done. I love my pouch . I had a total hysterectomy done in 2001 which put me onto immeadiate menopause. Do you still have your ovaries? I know after that surgery I had terrible feelings of pressure that lasted many months. If possible you should give yourself a big break, maybe cut back on your work hours? They say it really takes full year to fully recover from from big surgery even though you will feel better much before that year is up. I know after my cystectomy I even saw a therapist a few times to talk about my feelings, it was big help. Please feel free to PM me. I would be happy to message with you. Hang in there, it talkes lots of time but things will get better. Hugs, Judith

Dear Judith,

Thank you so very much for your support. It's so valuable.

I had my CT of my pelvic area and abdomen yesterday. It showed a lot of masses deep in pelvis. The general practitioner doctor thinks that it might be my cancer came back. I don't want to believe in that!!!!!!!!! I went through hell, and it's back??????
I am going to mail the films to my surgen in MD Anderson, and I pray so much that she thinks that those are natural p/o things, like swellings, maybe even p/o fluids.

I am so scared, I am so upset, I don't want to give up, but I am very close to it.
I would love to talk to you over the phone if you don't mind. my cell is 316-213-4380. I am usually at home at about 6 pm central time. I live in Kansas.