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Re: Back from my doctors visit. Does this sound right to you - thank you everyone
From: kathryn (anonymous@obgyn.net)
Fri Jan 4 23:59:45 2008
You will be in great hands with Dr. Orbuch, so breathe easy. Endo can
be removed, and she is a good excisionist.
Dr. L, if he advised removal of organs, does not know what the heck
he's talking about.
At Fri, 4 Jan 2008, anonymous wrote:
>
>Just a note to say thanks to everyone for their support and input. I
>can honestly say, I am more confused now than before. I have heard from
>both sides of the endo story, and I truly dont know what to do. I am so
>tired today - this disease is sucking the life out of me - literally. I
>couldn't get out of bed - so exhausted - mentally and physically.
>Unfortunately, I cant afford Kanayama. I will apply for support from
>the ERC, but I dont have any money left. I am broke from not working
>and tons of doctors bills. I feel like my life is over at this point. I
>cant fight it anymore. I am too tired. I am going to see Dr. Orbuch
>next week - and will set up excision with her ASAP. Otherwise, I am
>beat and have no real hope left. That is how I feel today. Dr. Levey
>really got me upset. I didn't think anyone would recommend removal of
>all those organs! I thought endo could be removed, not the organ? Why
>would they want to remove the organ if it is working?
>
>Mary
>
>At Fri, 4 Jan 2008, Michele wrote:
>>
>>I have never been to NYU mainly because I did not here very good success
>>stories. Really try to have Kanayama do your surgery. I took out a
>>loan and it was the best thing I did. He is worth every penny. I am in
>>the medical profession and if I was a Dr. I would not take ins either.
>>Endo will ruin your life it ruined mine for 18 years and in 18years I
>>cant tell you how much $$ I spent on crappy Dr.'s surgeries meds etc.
>>Why do you think there are not alot of endo specialists out there?
>>Because the majority of them do not except ins because the ins companys
>>tell these reg obgyn and other so called "endo spec" Dr.'s that taki ins
>>what to do how much to charge. They have to see a certain amount of
>>patents to make money they have no time to research endo which still
>>needs alot of research. Good endo specialist like Kanayama Redwine etc
>>spend alot of time researching endo writing abstracts going to
>>confrences on endo all over the world.They still do not know why endo
>>happens they have theories but they do not know. Most Dr.s think if
>>they take out all your female organs the pain will go away it is like
>>they are taking a gamble. Time and time again I read on this post esp
>>women had a hyst and they are still in pain then what. I do not know
>>how old you are but if you have no kids would you really want to do
>>that. Even dealing with early menopause do you want to do that? From
>>your post it sounds like you did not like his answer go with your
>>instinct. I wish you all the luck :)
>>
>>At Fri, 4 Jan 2008, anonymous wrote:
>>>
>>>Until you have tried every last resort to treat your endometriosis, I
>>>would run from any doctor that tells you to get a complete hysterectomy.
>>>99% of the time these doctors are unskilled enough to know how to deal
>>>with endometriosis, and they dont see the whole woman and the health
>>>risks that surgical menopause will put her in (which there are many
>>>scientific studies showing) such as heart disease and osteoporosis to
>>>name a few of the biggies.
>>>
>>>I had a complete hysterectomy with removal of both ovaries almost three
>>>years ago and it has done almost nothing for my pelvic pain (surgeons
>>>still need to be highly skilled in removing ALL presence of
>>>endometriosis). I have since had to have another surgery. In addition,
>>>surgical menopause has been a nightmare despite hrt (which I can not do
>>>without as I go crazy). I now have fibromyalgia triggered by the
>>>hysterectomy, I have severe osteoporosis, I am unable to work fulltime,
>>>I have spent thousands of $$$ out of pocket for every conceivable
>>>treatment trying to get my life back. I have to take hrt and meds for
>>>osteoporosis for life which are not cheap.
>>>I made the decision to have a hysterectomy out of desperation and was
>>>made to believe this was the "cure all". It is not and it is major life
>>>altering surgery. Do not take it lightly! Find a specialist!
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