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I haven't been on the site in over a month, due primarily to the fact that I've been working part time and spending the rest of the time trying to resume my previous life.... life pre-nephrostomy bag, pre-horrorysterectomy. I was shocked to see so many of you with problems similar to mine. Several months ago when I first posted, I felt so alone. I felt like no one had gone through what I had gone through. Unfortunately, I was wrong...
I had to wear a nephrostomy bag for 80 days due to a damaged ureter that occured during hysterectomy!!! Since January I had 5 surgeries, four week long hospital stays, 3 ER visits and just day after day of severe pain, depression, and just all over ickiness. Believe me, there were days I didn't think I was going to make it. I was sooo depressed! I'm happy to report that now, after my last surgery every day is getting better and I have more good days now than bad. However, I still don't feel 100% and I certainly don't feel like my bladder is working the same as it used to. I still have occassional bladder spasms and it seems like it takes me sooo long to pee and it still really hurts sometimes... I also get a lot of pain in my abdomen like stitches pulling or something. I just wonder... is this just for awhile or for the rest of my life?
I'm interested to know how all of you, with nicked, damaged, stitched ureters and bladders are doing. I certainly feel for all of you! I NEVER want to have to go through anything like that again. I'm also curious as to whether any of you have pursued a malpractice suit against your doctors. I just don't understand how doctors perform bypass surgeries everyday and you never hear of a dr accidentally cutting an artery or vein... yet it seems more common that bladders and ureters are nicked more often than not. I saw on Oprah that in Prostate surgery they are EXTREMELY careful not to cut any of the nerves around the prostate. Why is it that doctors seem to be more careful with male anotomy? Why do women have sooo many problems with their surgeries? Am I just bitter???
Damaging a ureter was what my gynocologist was trying to avoid during my hysterectomy, so he referred me to a urologist so I could set up with her to be on-site at the operation to place "stents" on my ureters. During my pre-op visit with her, however, she started asking me if I had ever had stress incontinence. I had never even heard of it called that before. After I sneeze about 4-5 times, sometimes I would wet my pants. She ran some tests on me and told me it was a slight case of it, but after the hysterectomy it would get worse. She discussed doing a "bladder sling" on me, which would fix me right up. I had some reservations, especially when she said I would probably have to self-catheterize for about 1-2 weeks post-op which she assured me was no big deal. The very idea of that scared me, but after she reassured me repeatedly and told me I was "too young and active" to have to worry about stress incontinence, that this would be a great idea.
With some fears, I stupidly signed up for it. Well, as you can tell from my previous posts, my hysterectomy went fairly well, but after 3 1/2 months I'm STILL having to catheterize. Several times when I've called her after developing problems - pain, infections - she's been out of town, leaving no one to refer me to. I just happen to know her father is a urologist who works out of the same office, and after repeatedly insisting on talking with him, the nurse would ask him and he'd give her some instructions for me. Usually to just be patient and keep catheterizing. I went back to my own GP who prescribed antibiotics to clear up the infection and Detrol or Ditropan to cut back on the urinary output (which, by the way, was not a real good idea, but they weren't the experts, of course)
To make a long story short, from my own experience (of course, I'm not a doctor, I just feel like one after having to treat myself) if anyone has to get an abdominal hysterectomy, I would look into the possibility of stents being placed on the ureters to protect them, but think LONG AND HARD about having the bladder sling, especially if the incontinence problem is not that bad. Prolonged catheterization doesn't occur real often, but when it does, it sure can affect your whole life. I've missed LOTS of work and lost LOTS of income from this whole fiasco (I'm an independent contractor and when I don't work, I don't get paid)
I haven't pursued any legal recourse yet since it's too soon to tell whether any actual malpractice was involved. Being somewhat involved in the legal system (court reporter) I know what's involved in a lawsuit and I always swore I'd avoid it at all costs. Contrary to the press lawsuits get, the plaintiffs don't recover as much as you may think. It's an expensive, tedious, painful process, and those who are truly damaged very often don't have the strength to fight. At this point I'd just be happy to be able to get up at night and pee like normal people do, instead of going through the process I have to go through now. This constant catheterizing CAN'T be good for the bladder either.
Best of luck to anyone else who's going through this,
Regards, Lynn (Lily200)
You're not bitter....it's normal to feel that way. I know I did. When I found out that I had nerve damage and that there were so many more just like me...I was angry, dissollusioned, and shocked that I'd never been told that this could happen. You're going thru the normal stages of grief. I've come out the other side of this thing intact and fairly upbeat. I know you will too...it just takes time, patience, and a whole lot of work. Be good to yourself and let yourself be angry if that's what helps.
I had a tah/bso on April 18th. Two weeks later I had absolutely no control over my bladder. After taking several antibiotics for an infection, I saw no difference. To make a long story short, I was told I have a fistula (hole) in my bladder. First I was told it could have been a slip on the knife, now after going to a urologist specialist, I am being told it was from pressure from a fibroid that eventually killed the skin on my bladder which fell away leaving this hole.
I have had to wait until the surrounding skin healed before the repair surgery, which I am scheduled for on July 11. I have lost alot of work, but worst of all is the depression.
I did contact a lawyer, but they told me that unless I can prove that it was an act done by the doctor, they can't do anything, and if it can be fixed, I haven't got a case.
I am so sorry that you are going through this, but I thought that you would like to know that you are not alone.
Months ago when I first posted, it seemed there was NO ONE who had gone through what I was going through. Depression was a normal part of my day, and in fact I still have days I have to battle it. The thing to remember is that your problem will be fixed and that you will be able to go on with your life. As far as the lawsuit is concerned, the more I hear about others out there who this has happened to, the more I begin to worry that perhaps I don't have a suit either. I have been told otherwise, but who knows once a specialist reviews my files. It seems that is the only thing that reassures me that maybe I might get justice for what I've been through. I can't imagine having to go through what I did, suffer as I did and then not be compensated for that. I know there are many of you out there who were not/cannot be compensated for what you've been through. How do you deal with that?
As I had posted before, I had a punctured bladder :burning: due to hysterectomy on April 18th. Had a catheter in for a few weeks, but still had to wear a pad. Was depressed and WET! Will be having surgery on July 11th to correct the punture. Two weeks ago my urologist took the catheter out, said I would be more comfortable but would have to go to "depends". She was right, I feel so much better, but still WET!
A few days ago I took my yr old grandaughter to visit my mother. Several relatives were there. I had to change the babys diaper, my mother offered to get it for me. She walked out with a diaper, started to unfold it in front of everyone, and stated that they looked different than she remembered and alot "bigger". "How is this this gonna fit on her". LOL, I had to announce that it was my diaper!!!LOL, thought I would die!!!!
For anyone going through this, PLEASE, for your sake...try to find humor in some of the things you are going through. I am now 12 weeks post, had a very hard time for awhile, but I am finding it alot easier when a little humor is added to the recipe. :LOL:
Good luck to you all. Will let you know how surgery turns out.
I hope you are doing well since your surgery! I haven't had major bladder problems, just spasms. When ya gotta go ya better go now ya know! You are in my thoughts and prayers! And I also think Sandy is right, Humor and Laughter is the best way to deal with what is dealt! I've been depressed for so long since surgery, that I had to do something. So my family and I are living on laughter and jokes daily and it is really helping! ( and a little shoppin' also!! )
Good luck to you and a speedy recovery!!
Yes, I have been in your shoes too. 2 weeks after my total Hysteroctomy, I began to pee out of my vaginia. ANd yes, they found the tare or rip in the bladder. They too wanted to have surgery, but I sure did not want to go back in to have surgery. I decided to let nature take it's course and let the hole heal up on it's own. Well to make a long story short, the hole DID after they said it would not heal up. Yes, it took time, it will be almost a year in August! I did have a catherter in me when it first started for 2 weeks. I also began to take organic sulfer, which helps the boby to heal, and a whole host of other things too. I do still have a small amount of incontenence, but slowly it gets better!
Only you can decide what route you want to go. I just did not want another surgery, and was willing to take the LONG road to recovery. What ever you decide, I hope for the best.
Laughter and not taking things too seriously has been one the tools I have used to cope with all of this. My spirituality and lots of prayers has been the primary tool to get me through all of this.
I've had days where I was in tears one minute and laughing hysterically the next. One of the funniest moments was when I first had to start wearing diapers. My mom picked some up for me (bless her heart, the clerk probably thought they were for her) and she got the kind that have the tabs on the side just like baby diapers. (I wanted the pull ups)... Anyway, I had to have her help me put them on and it was a comedy routine!!! The tabs wouldn't stick right and the diaper kept falling off. I was crying and laughing at the same time because I felt like a big fat baby Huey!!! lol Plus to boot, I have a really big butt and so I just looked so funny in the diapers. Oy vey! I'm telling you it was not funny! It was HYSTERICAL! When I finally did get the pull up kind, I just couldn't help but sing the song... "I'm a big kid now!"
Oh well, hopefully my story brought a few laughs.... but my point is that yes, you must find the humor in all of it.