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michele31
LIF Adult
Member since 5/05 3372 total posts
Name:
Michele
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Looks like my sister need endo surgery AGAIN
My poor baby sister...her endometrois has grown back pretty bad AGAIN...this time in less than 3 months It will be her 4th surgery in 3 years for it. And she has scar tissue, again, forming around her bowels which is putting her in incrediable pain. THey are running the tests but we are 99% sure that the GYN is going back in. She is so upset and there is nothing any of us can do to stop this
Have any of you seen an herbalists or used non-surgerical treatement for endo? She can't take BCPs because of her blood disorders. The BCPs make her bleed FULL-time for months..and put her life at risk for a clot. So that is out.
Thanks for letting me share what is happening.
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Posted 7/3/06 8:47 AM  |
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Tah-wee-ZAH
Kisses
Member since 5/05 15952 total posts
Name:
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Re: Looks like my sister need endo surgery AGAIN
I have no advice. I would just keep looking for second, third, fourth opinins if necessary. the right doctor is out there to help your sister. It's just a matter of finding him or her.
I can't imagine the pain. 
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| Posted 7/3/06 8:51 AM |
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juju
Welcome to the World!
Member since 5/05 6747 total posts
Name:
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Re: Looks like my sister need endo surgery AGAIN
Posted by Tah-wee-ZAH
I have no advice. I would just keep looking for second, third, fourth opinins if necessary. the right doctor is out there to help your sister. It's just a matter of finding him or her.
I can't imagine the pain.
I am soo sorry about your Sister!!! But, Theresa is right......she should go get another opinion. I truly believe the right doctor is there for her.
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| Posted 7/3/06 9:22 AM |
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michele31
LIF Adult
Member since 5/05 3372 total posts
Name:
Michele
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Re: Looks like my sister need endo surgery AGAIN
She is not trying to get pregnant...just trying to preserve her fertilty. There are no endo specialists on LI, that we can find. She has been to a number of GYNs- most of which just tell her to "take it all out"
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| Posted 7/3/06 10:40 AM |
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Tah-wee-ZAH
Kisses
Member since 5/05 15952 total posts
Name:
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Re: Looks like my sister need endo surgery AGAIN
Posted by michele31
She is not trying to get pregnant...just trying to preserve her fertilty. There are no endo specialists on LI, that we can find. She has been to a number of GYNs- most of which just tell her to "take it all out"
OK, I might seem a bit harsh here and I don't mean it towards you or your sister. It's directed at some of the doctors out there who are always looking for the quick, billable fix.
Oh, I knew she wasn't trying to get pregnant. I am a BIG believer in TTC, or not, a woman should still have excellent gyno care. Trust me, I didn't get married until I was 33 and had 4 separate ob/gyns poo-poo my symptoms of PCOS for over 11 years Just because I wasn't trying to have a baby didn't make me not have PCOS any less or mean that the symptoms should not have been treated. Perhaps if my system was not suppressed for over a decade it wouldn't have taken me 5 months to ovulate on a triple dose of standard meds. Even if I never planned on having children the PCOS should have been treated.
I spent YEARS going to gyno offices feeling like I was "taking up their time" because I wasn't one of the ones with the big belly walking in the door. At least that's how I felt I was treated.
Single, married, having kids, not having kids your sister deserves the same standard of excellent care that is afforded to other women out there.
If she does have any plans on possibly having kids in the future I'd say she has a severe case and needs to seek a specialist in NYC. Also see if a "woman's hospital" or univerity that has one can be contacted.
I know I would go anywhere, no matter how old I was, to help save my ability to have children.
Good luck to your sister. The right doctor is out there you just need to find him/her.
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| Posted 7/3/06 10:50 AM |
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rose825
Best Friends
Member since 6/05 10228 total posts
Name:
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Re: Looks like my sister need endo surgery AGAIN
no advice, just for your sister
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| Posted 7/3/06 6:26 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name:
Donna
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Re: Looks like my sister need endo surgery AGAIN
My friend had a very bad case like your sister. She saw a host of drs from age 17-age 23....In NYC, all over. They finally told her she had to get PG now if she wanted any more kids(she had one already)....They told her the pain she was in would keep returning and she couldnt take it anymore. She had 4 surgeries since age 15.
she had a baby after 2 m/c 's in a year of trying and had a full hysterectomy immediately after.
I am a blunt one so Im sorry if I sound insensitive, I dont mean to be, I just know I saw what she went through and all the specialists said the same thing, only a hysterectomy could solve a severe case of endo to that degree.
I think she should be having like T said....many consults to see if there is anything she can do to postpone the inevitable, but if shes trying to save her fertility, chances are she has little time left to be perfectly honest. With what you describe , it would likely be difficult to conceive at all and if she went this course for another 5 years, I would say impossible.
I know its such a sad thing. My friend was 25 when she had her hysterectomy and was severly depressed over it, but she was lucky enough to have 2 children in the end.
I feel for your sister, I hope she can make some choices that are right for her.
Has she looked into Acupuncture???
Message edited 7/3/2006 7:17:26 PM.
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| Posted 7/3/06 7:15 PM |
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Jillybean28
LIF Adult
Member since 1/06 1018 total posts
Name:
Jill
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Re: Looks like my sister need endo surgery AGAIN
I hope that your sister is OK. I am having surgery this week (for the first time) for endo, I can't picture myself having to do it so often. I would suggest having her get a second opinion. You may want to research doctors in Boston. My girlfriend had a very bad case and I remember that there was no shortage of doctors (including a women's health center)
Hope she feels better soon
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| Posted 7/3/06 9:52 PM |
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michele31
LIF Adult
Member since 5/05 3372 total posts
Name:
Michele
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Re: Looks like my sister need endo surgery AGAIN
I found a specialist in NYC who takes no insurance at all..and the cost is $10K to see him and have the special surgery he does. He is not a regular GYN, just an endo surgerical specialist. She can't afford anything close to that at all and her insurance does not have out of network benefits. We also found a place in GA, same deal- cash, no insurance.
Right now she has a great GYN, who finally treats her like a person, not just some uterus. It is making a difference, but of course, that doctor can't stop the endo.
I am going to look into the Boston women's hospital for her.
I just started trying to find her acupuncture and a chinese herbalist that may help.
She has been told to have a baby- now or never. But in her situation, unmarried, living in a studio, going back to school (again), no money ever, in a dead end job...having a baby is not really an option right now. So she has to try to save her fertility as long as possible.
Thanks girls!!
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| Posted 7/4/06 8:37 PM |
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