sick of "diapers"!!

Hi Sisters
I am so happy to have found this site. It is so good to have others to talk about these embarrassing problems. I had TAH June 30, 2004 for stage 1b1 cervical cancer. I had been haveing some stress incontinence before the hyst, but since it has been worse. Now I wear a thick overnight maxi pad, (I don't want to admit that this has become a way of life and give in to wearing depends) 24/7. I have to change at least 2 x daily. Sometimes I let loose like niagara falls, and even overflow the pad. I try not to drink much at work for fear I may not make it to the bathroom. Even if I don't have much urine I still dribble whenever I move. I mentioned this to my gyn/onc and he didn't seem too concerned. I use to think that it was a small price to pay for being cancer free, but after reading so many post from y'all, I think I shouln't have to live with this. Do I mention it again to my gyn/onc or do I need to see a urologist. How bad is the surgery for these problems?
I ended up with complications from my hyst, that ended with me having another emergency abdominal surgery 4 months later, so I really don't want another invasive surgery. I also have lymphedemia in my lower extremities due to lymph node disection. I have faced the fact that I will never be the same or "normal" again, but I would like to be as normal as possible.
Thanks for listening.
Hugs to all,
Nancy (bkl2629)

Nancy,
I'm so sorry to hear about everything you went through. And you're right, you shouldn't have to live with "the falls". The good news is that this is a relatively easy repair that can be done without general anesthesia. IIt also has a short recovery time, although you'll need to watch your heavy lifting and straining for the rest of your life. Since you have lymphedemia, IMHO you should at least run this by your onc. Assuming that condition does not preclude a bladder sling, I would get a first opinion from your onc, and a second from a urogynecologist. The first step should be a urodynamics test to identify exactly where the leaking is coming from and how best to repair. Then, the repair method selected will depend upon what is causing the leaks. Make sure they also check to see if you have a cystocele. If so, it's good to get them both repaired at the same time. I found a really good site that explains the various repairs, recovery times, etc. Check out Burch, TVT, and TOT for various bladder repairs. Click on the procedure on the left and then scroll down on the right. Most of the procedures have multiple pages, so click at the bottom to move forward. It is very graphic though, so don't look if that is too much for you. Click here for that site. I wish you the very best as you move forward in your quest to correct this problem.
Ashley

So sorry to hear that you are experiencing these problems, but so glad that you are cancer free!

Did you have to have radiation or anything after your surgery? Radiation can really cause problems sometimes.

It seems that this has really become a problem for you, and so you should pursue solutions. As previous replies have indicated, there are several procedures available now and most are much less invasive than was true even a few years ago.

In the meantime you may want to experiment with pads designed for urine leakage. I believe they hold more, and they are usually designed to deal with the odor situation as well. And they'd still be less obvious than Depends.

Best wishes to you. I hope you are able to find something that will restore the quality of life you deserve.

Nancy,

First of all: Congratulations on beating the ugly monster!

Second, IMHO, I would consult with a urologist...maybe your gyne/onc can recommend a good one, and then he/she would also be aware that you want to address this problem. There are a number of drugs even that can help with urge/stress incontinence. Due to a fistula, I also had to use the giant pads for a long time, and they are not fun. Also, I agree with the previous post; I know that radiation can cause some problems.

Hope you find some answers soon!
Dee

Thank you sisters,
The information you all provided was very informative. The link from Ashley I have read completly. I am going to talk with my gyn/onc to see his opinion / recommendation to a uro. I am thankful to think I may be able to take care of this without another invasive surgery. I will let you know, as I get some answers. Thanks again, and my best to you all!
Love & Hugs,
Nancy (bkl2629)

I agree with Ashley. You need not live with this. For the time being, switch to the Poise pads. They are designed to deal with this problem without a diaper feeling. I had a tvt done in June. You do need to be a good patient and avoid heavy lifting and straining during recovery, and I am sure the recovery advice will differ due to each person's overall health and physical condition. My urologist said I could go back to anything I used to do after a month, but I am playing it safe and avoiding heavy lifting for at least a year. I am a big gardener and I haul wheelbarrows full of dirt, etc... I was leaking horribly. I couldn't walk down my driveway without continuous leakage. While working in the yard, I would have to change a large Poise pad three times within the afternoon. After my tvt I still leak a very very little if I overdo, but what a difference!! I would leak uncontrollably prior to the surgery, so this minor leakage is nothing!! As for pain, nothing. I came home without a catheter, had to self cath for one day but had no trouble with it (and I was completely freaked about doing it, but it is no big deal) and have been very glad to have gone ahead with the surgery. So please don't suffer with this problem. There IS help out there. Find a good urologist and go for it!!