Need Some Info Please

I have not posted in a while I have been battling this stuff for some time. For those that have not read any previous post I had A TVT-O done on January 26,2006 with removal of early stage bladder cancer. As for the cancer I am free to date from all tests to date. I came home from surgery with a catheter removed few days later to start with in and out cath. In April two and a half month post surgery foley was put back in as I was only able to void 25cc on my own with residuals being 500-600cc. The surgeon that did the surgery was a real jerk and told me to stop drinking that I should not drink more that 1 or 2, 8oz glasses a day. I made my family doctor get me a new one. 6 months after surgery I got in to see a uro-oncologist he was pretty good and told me he thought that the tape they used for the TVT-O may have eroded throught the urethra or that it was to tight or 20 other reason he suggested me having a cystoscope under anestetic as he did not want to put me through more discomfort. I had the scope done on July 25/06 almost 6 month to date from first surgery he said all seemed fine in the fact that there was no tape erosion but he said there was alot of swelling where the tape is the swelling is on the inside of the urethra he did a urethral dialation hoping that may help. I woke up in recovery in some discomfort not so much pain as alot of cramping and burning feeling the recovery nurses dosed me with morphine which made the room spin.I said I was not in major pain just discomfort they told me being comfortable made all the diffrence in recovering so they doped me up. Needless to say I went home without peeing yet back to in and out cath again surgeon put me on a medicine called Duvoid the most horrible stuff I have ever taken. It made me sick to my stomach and gave me major cramps and the shakes like 90. I did nothing to help me pee. The diffrence this time was I feel no sensation at all to void even when bladder is full they scanned my bladder and it was 600cc the nurse said your body should tell you at about 200cc that you need to pee not mine. I do not understand how there could still be swelling at the site 6 month later and the doctor could not give me an answer. I went to see my gynocologist on Aug 3 he did a biopsy of the uterus because of the bladder cancer he said, I will say it hurt like the dickens I have had bad cramps since then and still spotting from it not enough to worry just when I wipe myselfwe also talked about the repair of a rectocele and also about a hysterectomy due to the ongoing battle of endometreosis and cronic cysts since the age of 17. He was not to sure about a hyster due to the fact I am only 34 but I said 17 years is enough of this. He said that would mean no more kids I said that is not a problem as I am not in a relationship and I do not see another child anytime soon in the picture he wanted me to think about it more as he said it is permanent I said I know. It is to the point I have maybe 1 week a month without bleeded as is and it is heavy and very painful. I said if I have it done I would like him to remove the ovaries because of the cronic cysts. I have fibroids that he said are small and should not be a problem at this point. He is also talking about having the TVT-O tape removed at the same time as over 6 month and still unable to pee on my own. My problem is I can't go back to wetting myself everyday when I stand or run or cough or sneeze, it is not just a small amount it is quite a bit. I am not sure I want him to remove the tape but in the same token I can't live like this forever. Is there something else I can ask to have done in place of the TVT-O. The other thing is about having the hysterectomy done is I will go into surgical menopause and do not want to take HRT as that would only feed the endo still and there is just to much about HRT that I am unsure of can anyone give me idea's on what I can take in place of HRT so when I go back to see the Doc on Sept 12 I can have a list of things to talk to him about so I am not walking in blind. I am scared of having a rectocele repair does as well as I heard it is quite painful. I am wondering if having a total hysterecotmy with rectocele repair and removal of TVT-O tape is in my best interest or not. I have tried all kinds of treatments for years without any help and I am at my wits end I am scared of a hysterectomy but it has to be better than what I am going through right now. My great concern is the removal of tape and going back to wetting myself everyday I don't know which is worse catheter 6 times a day or wearing a diaper because I can't control my bladder. Please Help me ladies.

Hi Lost2006
You poor thing, you have been through so much. I'm not sure I have very much to offer you, but in reading your post I had the dominating thought that you need to get more than one opinion on this. You have so much going on and so much at stake. I know if it were me I would want to hear from more than one dr just in case one would have an insight or know of an option that the other had missed.

There are other options with your bladder. I had a Burch sling done and it has been great. I have no regrets and it totally took care of my incontinence problems. I don't know what your risks are with undoing one procedure and having another one done. I would be sure to ask the dr about that.

You mention the rectocele repair too. I might have missed seeing it, but have you been diagnosed with a prolapse too? If that is the case I would evaluate how bad it is. Sometimes they aren't so bad that they need repaired. Depending on how much work you need to have done maybe you could let that go.

Having said that I will also add that if it really does need to be done I feel its best to do it all at once and not have to go through this all again. I had the rectocele repair along with the sling and a TVH. I won't hesitate to say it was painful, but nothing unbearable. I feel my recovery was prolonged some and I couldn't sit or stand for long periods of time for several months. I would do it all again though to gain the quality of life I have now.

I find it hard to believe there isn't some way to achieve a balance between no control and no sensation. I hope they can figure out why this has happened so you can be assured they can fix it. You have a lot of decisions to make. Don't hurry, keep asking questions and get all the input and information you can. I wish you well. Keep us posted.
's,Rita

Hi there Rita Thanks for your reply.
About getting more than one opinion, I have had five or more since the age of 17 and have been battling endo. Surgery in Jan 2005 for removal of appendix and ovarian cyst revealed that the endo has attached my bladder, bowels, ovaries and uterus all together. This gynocologist is one I have seen since the age of 17 myself and I am now 34. He was surprised that the uro-gynocologist that did my TVT-O and bladder cancer removal did not do the hysterectomy at that time with all the problems. He is 100% qualified to do that but he said oh don't worry people live with it all the time you are not the first and will not be the last. I felt belittled and like what I felt like or thought of did not matter. This TVT-O was suposse to be 2 weeks of work with light lifting for 12 weeks It has now turned out to be almost 7month off, because of major complications. Following the doctors order to stop drinking I became dehydrated and ended up with a sever infection in the bladded and kidneys for over three month. He then basically said that was a lie and I could not become dehydrated if I was drinking at least one glass of fluid a day. I then said call the hospital where I live and ask for my medical reports. Even his nurse told me that I would dehydrate on what he was telling me to drink.
How is the burch procedure done? I am a little aprehensive about have more surgery done vaginally as right now I feel things look so deformed down there as is. I would really like the hyster to be done abdominally even thou it is longer recovery I have heard alot of cons against vaginal hyster.
As for the rectocele repair I have a grade 3 recotcele that was there Jan when the TVT-O was done and no diffrence than now and the doctor said he could not see anything wrong.I have a mild cystocele and my uterus is dropping and retroverted to put it one way I can not get a tampon in at this time sorry TMI and there the slender for teens size. I am not in a relationship at this time and I can tell you that mainly has to do with how I feel and look I feel like a freak of nature there. There is stuff down there that should not be there and for the gyno to do an exam he had to use a pap speculum to see thing correctly because of all the swelling there. I am a single mom and I can not take anymore time off work as is because the money through works disability is only 65% of what I was making working. I can't keep doing this. I basically covers rent then i have 70 dollars to spare bills don't get payed and i need to put food on the table as well. The thing is I need to wait to get this sugery stuff under my belt before I can go back as i took 4 month before I could cliam it so being off for recovery would be bringing in no money.
And family support is just not there I don't mean finacially I mean emotinally as well I came home from this last sugery the same day and had to watch my daughter I don't remember a single thing anything could have happened.I was so out of it from the anastetic and morphine i really don't remember the hour car ride home. I am ready to trade in my family for a new one. At least one that may be willing to help out a bit when needed. All I get is well would should I do about it you are the one going through this not me. Go back to work and just never mind having things changed learn to live with it and don't let it run your life I keep getting well your work will fire you if your off any longer which I know is not true but this is the last thing I need to hear or worry about at this moment. The thing with work right now they can handle me off work because they have sombody covering my hours what they could not handle is me saying well I feel really sick today and can't make it or I have another doctors appointment so I won't be there today As all my appointment are 1 hour away from where I live. So can ya see where I am confused on what to do.

Tracy

I, too, have endo so I can drop you some information about that. You may want to read through the Hyster Sisters' Endo/Adeno Resources to learn more about the affect of endo on your body, and no, a hyst does not cure endo. Meeting with an endometriosis specialist or a reproductive endocrinologist who treats endo patients might be a great idea for you.

We also have several Prolapse resources that include information about rectoceles as well.

It sounds like you are having a rough time and may need a team of experts to help you decide what is best for you. If you are not comfortable with your current medical professionals, see if you can be referred to others.

For my health, I have found it very important to have an excellent GP to help coordinate my health care.

I wish you the very best and hope you are able to find support and information here on the site to help you with the choices you need to make in the future. in there!

Hi there Weiser thanks for your reply.The gynocologist I am seeing specialize in endo he has already told me just having a hysterectomy won't get rid of it that they need to treat and remove that as well. I am going to check out the links you gave me to read up on it. I am at my wits end right now and don't think I can wait any longer to see someone else I am looked at another 6 month or more and I am getting tired of doing the in and out catheter and the pain that comes along with it. Family doctor around here are useless but not driving I don't have a choice who I see.We have 4 family doctor's in our area and there are all the same then we need to wait a 3 week wait just to get into see them and that is a good time. You don't ever want to get sick where you need them now cause it just does not happen.
Thanks for the links I have some reading to do do right now.