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Want uterus out!! Want uterus out!!

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  #1  
Unread 06-23-2005, 02:00 PM
Want uterus out!!

HI,
I recently posted the "beggin dr.'s to remove uterus post", and did meet with the dr. for a surgical consultation to have a laproscopy done ( sp.????)
Once he explained the procedure, he said he would butn off any adhesions when he was " in there". The only other alternatives he gave me if that didn't work were:

1. Lupron.,........which I will not do, concidering side effects
2. Cut the nerve endings supplying the uterus for a " dull effect"

When I asked him about poss. having adeno. and what you could do to detect it, he described it and said hysterectomy was the only way and that it was not an option in my case!

Well, I would rather have a sub - total hyst than having "nerves" cut!! whats the point of holding on to my uterus if it comes to this?! I want the thing out!!!!!! I have no interest in having children, so fertility isn't an issue, but why does the Dr. seem to think that " nerve cutting' is less evasive than a sub-total hyster? Why does there seem like there's no Hope? I want a permanent fix, not something temp.

Thanks for listening!!!
Star
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  #2  
Unread 06-23-2005, 09:48 PM
Want uterus out!!

Gods, where to start? First, I am sure you already suspect this, but your doc is an outdated ***. Severing nerves is a questionable procedure in any case, particularly where there amy be more serious issues than simply pain involved. Cutting the nerves that serve your uterus may dull your pain, but they also leave you extremely vulnerable because you can't tell when something is wrong. Also, the idea that adenomyosis is undiagnosible except by a post-hyst pathological inspection is obsolete, the newer MRIs can detect adenomyosis in almost 80% of cases, according to research done at the NIH. Sometimes the scan does miss very diffuse, mild adeno, but it never gives a false positive. The fact that your doc either doesn't know this or doesn't acknowledge it makes me think that you need to find a different doctor. And, while I am ranting about his disturbingly severe stupidity, may I say that his absolute refusal to consider a hysterectomy makes me wonder if he isn't simply indulging his own prejudices about women's reproductive choices. You need a doctor who is not only up to date on gynecological issues, but one with whom you have input in the direction of your care. This doctor obviously offers you neither.

Okay, that is my rant, for what it's worth.
  #3  
Unread 06-24-2005, 06:35 AM
I agree with DawnRae

Your doctor is WAY out of date, you need to find a new doctor. I can't believe what he is saying to you! I have endo and adeno and it took me forever to get a DX, because I listened to incompetent doctors and did not listen to that inner voice in myself that said I know there is something wrong with me and I need to keep going to different doctors until I find one who will listen to me.

Look for a new doctor, one that specializes in women issues and will listen to you. I found a great doctor, by going on google and typing in my city/state and endometriosis, I then went to every link until I luckely had found a doctor that had participated in a forum chat about endometriosis and was saying all the right things, ie.. that is can only be dx through laproscopy, and the only way to treat it is through excision, and that it is painful and needs to be treated, and the pain is not in your head, ect.... I then called his office and made my first appointment. I asked him all the questions I could think of, and he answered every one of them the way I wanted/expected him to. I then agreed to let him to a lap on me, which every decision about my treatment he has left up to me, he's given me options and let me choose which one I thought would be best for me.

You need to find someone who will treat you like a human and will let you decide how you want to be treated. Please keep searching until you find that "right" doctor, this is your body and you need to make sure who ever is working on it is the best doctor for you!

Take care,
Debra
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  #4  
Unread 06-27-2005, 02:14 PM
Want uterus out!!

hi,
Thanks for the input gals!!! I figured I might as well let him dothe scope just to find out what is in there. He came highly recomended by a friend of mine and is one of the only dr.s who actually does his own scopes, instead of sending his patients to another surgeon. Plus, I know that people come from albany to have him do their scopes. But I do think that his two options were very limited! I mean, fertility isn't an issue with me, but I feel like any time I tell a doctor that, they look at me like a monster!! But I know deep down that having my uterus out would make a world of difference. I know I'm only 27yrs, but that should not take presidence over the fact that I'm in serious pain all the time, and want a permanent fix, not something temporary with tond of side effects. I also have a pituitary tumor that I have to be careful with, and taking hormones that screw with it could make things worse..... so I would rather have the uterus out than having a problem with my Brain!!!!!

once the scope is done and I'm still not getting the answers I need from him, I will switch again!!!!

thanks though, I appreciate your support!!!

Star
  #5  
Unread 06-28-2005, 07:45 AM
Want uterus out!!

I just wanted to advise you on something...
The procedure you're doctor is talking about, which he refers to as "burning nerve endings," is called a pre-sacral neurectomy. What it actually is, is burning of nerve endings, but also REMOVAL OF YOUR PRESACRAL NERVE, which is a fist-sized bundle of nerves in your abdomen. I had this done in January of 2004 before my hyst for "pain management." The statistics I was given were 50/50, but I went ahead because I desparately needed pain relief. Not surprisingly, it did not help my pain.
****THIS IS THE MOST IMPORTANT PART****
What your doctor did not tell you, is that those "nerve endings" not only attach to your uterus, but also to your bladder! I still to this day, and always will (and i'm 23!) have bladder and urinating problems because of this procedure. I have no signal from my bladder to my brain telling me when my bladder is full, I often leak and have accidents, I have to try to go every hour on the hour like a child because I don't know when I have to go and when I don't. I can't empty my bladder all the way....the list goes on and on. Also, when they opened me up for my hysterectomy, my uterus was unable to be found by the surgeon for twenty minutes because it was encased in endo and adhesions, and was almost completely unrecognizable when they did find it. It had literally been eaten up/destroyed. I had NO idea that it was that bad, and I have a strong feeling that it was because I couldn't feel anything--yet I still had pain!
I feel I should also add that this may not be the norm for everyone. You should do what you want. I'm just saying, and I know its my fault for going through with the procedure without being totally knowledgeable about what I was getting myself into, but I was only 21, nd hey it made sense--cut out nerves=no more pain.
PLEASE get a second opinion before you do this! Your doctor is not being very upfront with you. Just my advice. Please let me know what you decide. I'm NOT trying to talk you out of it--I just want you to be informed.
With concern,
Christina
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