Radical Hysterectomy blues.........
 

About 16 years ago I had a radical hysterectomy and developed bladder, and bowel nerve damage. My "plumbing functions have NEVER BEEN THE SAME".
Of course because I was 33 and young I was to have no side effects.
My new diagnosis at that time was adenocarcinima of the cervix. By listening to my inner soul I DID NOT take radiation treatments. My lymph nodes were negative. I know now without a doubt I would have had a urostomy, and a colostomy by now.

Since that time my bladder is in poor shape: Between the urine retention, due to no urge to void, and large amount's of urine incontinance. I now have a suprapubic cathter, along with 2 inter-stim's pudendal nerve implants that do not work. I have been told that when I get tired of it all a contient diversion is what I will end up with at least for my bladder function. with my bowel it is just a motility issue, and I am very lucky there.

Anybody out there with this similar problem?
Thanks all for reading my story, but I want the world to know all this has happened to me. Beleive me, there is MORE!

:hug: i haven't been there, but wanted to give you some :hug::hug:

i'm a good listener.

Hi,

I have no experience with hysterecomies, but rather with endometriosis.

We are here for you though. :hug::hug:

:hug:Sally. I too had a hysterectomy at the same age as you after several years of problems. My dx was cervical cancer. I did not have radiation nor chemo as everything was clear as well. 11 years later, I did develop fibroids on the one ovary that was left and had to have it removed and it also was clear.

I have had bladder problems the past 8 years due to Multiple Sclerosis and have learned how to self-cath, but nothing like you are experiencing.

I hope you have a good support system and if not, you have us. It's difficult at best but we are good listeners as our resident "Monkey" has already said.

:hug:

Hi Sally. I'm sorry for what you're going through and I wanted to give you a big hug. :hug:

Did no-one tell you at the time that radiation would do that sort of thing to your bladder and bowels? I'd have thought it was one of the things even a nurse could have discussed with you.

I too went through the hysterectomy thing at a young age, 31 years old for me, but I didn't have cancer of the cervix. Mine was done for heavy bleeding that couldn't be contained any other way, so I didn't have to go through what you did with follow up treatments.

My mother however, died from cervical cancer at the age of 57, and I've always been glad that I lost my cervix at an early age, so I wouldn't go through what she did. Little did I know that I'd be hit with bowel cancer, then nose cancer instead.

I had no intentions of trying for any more children when I had my hysterectomy, as I'd already lost 4 babies by then with only one live birth, but I still went through a period of mourning for what might have been had I still had a uterus.

Apart from a temporary supra-pubic catheter for a while post operatively, I didn't start to have any bladder problems until long after I'd been diagnosed with MS, so although hysterectomies and bladder problems can be related, for me it wasn't so.

My initial bladder problem was a sudden neurogenic bladder, where the urine simply "fell out" without any warning at all. That eased almost as suddenly as it started and my bladder went the other way. I then had urinary retention and was unable to void at all. I had to learn to self catheterise, which I did intermittently, but at the moment I seem to be having a reprieve. I haven't had to use a catheter for several months now, but I assure you I have no delusions that it'll be this way forever. For me, these bladder problems I've listed can be directly related to MS and not the hysterectomy.

My bowel problems (at that stage it was constipation) started around the same time as the urinary retention, but whether that was completely due to MS, or whether the bowel cancer had something to do with it, I just don't know. I only know that at the moment all my exhaust pipes are functioning satisfactorily, and I don't want to do anything to change that.

I'm sorry I have no words of wisdom to impart, but I hope things settle down for you, at least enough to make you comfortable.

Thanks EVERY-ONE
 

Thanks everybody for your wonderful support with helpful words.
I do feel alone most time with this bladder problem. I really feel urologist and there SO-CALLED supportive staff are useless in totally understanding voiding dysfunction.
Last week I had a suprapubic cathter placed. It does mentally give me some peace of mind in wearing a bag. No one can see it under your clothes and you do not have to worry with peeing on the floor. Which I never realized how much stress there is in worrying about the bathroom all the time.

Hugs to all......::grouphug:

Hello!
 

I had a radical hysterectomy almost 23 years ago. I was 25 years old. Still I remember signing that piece of paper stating "you will no longer be able to bear children." I feel very grateful that my cancer was caught quickly, thank you Mayo Clinic. I tried to take hormone replacements but the endometriosis tissue remains forever and hormones feed it. I can say I did not notice too much except it instantly threw me into menopause, and as I could not take hormones summer, and humidity has become my bitter enemy. I adopted a son at age four and managed to do everything with him as long as 3/4 of my body was immersed in water. I have a prescription for Ativan at night which helped but doctor increased it to two. One half hour of sleep, dreged in sweat, up an hour, doze off and same thing. Over and over. I am almost 48 years old and asked my doctor "How long does this go on!!!" I love fall and winter.
Hang in there, best to be rid of disease causing organs.

:) Hi CindyRae:

Just wanted to send you a :hug:

I hope you feel better soon. hot flashes can be miserable. :(

I agree with you though it is better to have diseased organs removed. I also feel strongly if organs do not work you need an alternative,
Do you? ;)

Hi CindyRae and welcome to NeuroTalk.

I'm sorry that you're another who've had to go through this at such a young age. It's been a little over that period of time for me since my surgery, but you never really stop thinking about it, do you? You can put it out of you mind for extended periods of time, but then it sneaks back in again.

I hope you soon see an end to those unpleasant symptoms. :hug: