Re: Looking for the best endo surgeons?
From: Vicki (anonymous@obgyn.net)
Sun Dec 3 13:05:11 2006
Claire,
Thanks for the kind words. The most infuriating thing for me right now
is that the last surgeon saw the endo on my bladder, and commented on it
in his op notes. But when he spoke to me and my family, he said he
didn't find as much as he expected considering the amount of pain that I
was in. He bascially said that it was all in my head and that I was
whining too much. It's completely amazing that someone who is supposed
to be helping his patients could have such a blatant disregard for their
welfare. I knew that it wasn't in my head, but I thought there was
nothing more that could be done short of a hysterectomy.
Now that things have gotten so much worse I've made a much better effort
to be an educated patient, and what a difference that makes! I'm going
to look into the doctor's that the other folks have recommended (thanks
to everyone for the input!) and hopefully get back to normal. You're
exactly right, I'm not looking for a miracle here. I just want to be a
normal 24 year old woman that can live her life without a stash of
Darvocet in my purse.
--
Vicki
At Sat, 2 Dec 2006, Claire wrote:
>
>Dear Vicki,
>I had bladder endo. Infact when I was first diagnosed the endo was at
>its deepest and most extensive on my bladder. He removed it from the
>bladder and from the other places that he could see and I had about 7
>months of releif. That can be the problem with laparascopic surgery as
>they cannot see all areas with a scope for obvious reasons. There are
>some endo specialists that claim to beable to remove all endo with a
>scope but I am skeptical of this.
>
>I had a total hysterectomy and BSO only 2 weeks and 2 days ago and he
>found endo on my colon and a whole load hiding under my fallopian tubes
>and ovaries on removal which he could not see with a scope previously.
>My bladder had adhered to my uterus with scar tissue from my endo before
>and had folded in two. I am not a fan of multiple excisions and
>laparospies as scar tissue from these can be an issue and wanted to keep
>them to a minimum- You excise endo over and over again of course you can
>get scar tissue and then you get what happened to one poor woman on here
>that endo formed under the scar tissue that noone can get to. I am
>recovering from my surgery at a remarkable rate. I have normal bowel
>function for the first time in 3 years and my bladder after a full year
>of horrible pain after passing urine is starting to feel normal again
>but it has been slow and my bladder pain is the last thing to be going
>away-I dont think it likes being handled very much!. I am only slightly
>over 2 weeks post op and I know it could come back but if this gives me
>only 5 years or so of good health then it will be worth it. After all
>none of us are asking for the world just to feel normal for a while.
>
>I chased some statistics on hysterectomy and endo and this is what I
>found. Endo reoccured in 40 % of women after 5 years and 13% at a
>lesser time and this was held up as dreadful and that women were being
>chemically castrated for nothing. I looked at it as an endo sufferer
>and I thought they were pretty good odds and wondered whether the 60%
>that had been cured thought that they had been castrated for nothing.
>Hell! anything under 50% is good enough for me -I had come to the end of
>my rope with it all.
>
>You are very young Vicki and my heart goes out to you as I dont think
>there is much out there for us women. I am considerably older than you
>and didnt want children so a hysterectomy was a relatively easy decision
>and endo didnt rear its ugly head for me until I was 32 years old and I
>am now just 36. I dont know how these women who have battled it for 10
>years plus have survived mentally. You would think after so much
>advancement in medical science that they would have a little more on
>this disease. They still dont know for sure what causes it!
>
>I am sure someone on here will beable to head you in the right direction
>as regards a new Doctor. Doesnt your current Doctor know of any
>specialists with a good reputation?
>Good Luck Vicki
>
> At Wed, 29 Nov 2006, Vicki wrote:
>>
>>I've been battling endo since I was 16, 8 years now. I've had 2 laps. I
>>just found out that the last one, done in 2004, showed endo on the
>>bladder that the surgeon made no attempt to remove and did not tell me
>>or my parents about. After learning this from the op reports, my new
>>doctor recommended I have another lap but to have it done with someone
>>who is more experienced with this type of surgery. Does anyone have any
>>experience with bladder endo? I've read about a few surgeons that are
>>widely recognized, like Dr. Redwine in Oregon. Does anyone have any
>>recommendations? I live in Maryland, but I'm open to doctors pretty much
>>anywhere in the U.S.
>>Thanks!
>>Vicki
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