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Old 09-08-2012, 02:03 PM   #1
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Michelle200 HB User
Exclamation Need opinions if I should do surgery or not! Please

Hi, I'm holly. I'm only 22 yrs old and I have endometriosis all over my right kidney. It's very painful all the time. My Gyno is telling me not to do surgery right now because the endo is wrapped around a major blood vessel. It's risky. But I'm thinking if I wait until it gets more painful it's going to spread and get worse. My whole family is telling me to do the surgery, but I'm not sure. I'm very scared about this but I also want to feel better. I have an 11 month old boy and I want to feel better instead of laying down most of the days and not being able to play with him right now. I'm torn I dont knoW what to do please give me some advice and opinions on what you think I should do. Thank you

 
Old 09-20-2012, 02:33 PM   #2
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losinghope37 HB User
Re: Need opinions if I should do surgery or not! Please

Hi Holly,
I'm not sure if you'd made a decision about your surgery or not at this point? But I wanted to say you're not alone in wondering what the right thing to do is. It's all so overwhelming and the fact that you have an 11 month old to care for makes your decision that much tougher.
I've been suffering with endometriosis since my mid-teens and I'm now 29 yrs old. I've spent most of those years just trying to get a diagnosis going from doctor to doctor not getting any answers but always in pain. The local ob/gyn's felt that I had endometriosis and were always trying to shove another birth control pill or ibuprofen at me to relieve my symptoms. I even had a consult with an ob/gyn surgeon who seemed experienced with the disease only to refuse performing the surgery because he would probably have to take my reproductive organs too.
Most recently though i found an Endometriosis Specialist who excises the disease. If you get a chance it might be worth doing a web search for Endo Specialists (if that's not already who you are seeing)--there are only a few of them across the US---but if you can get an appt they are wonderful because this is what they deal with every day. And they take on the difficult cases that most ob/gyn's won't--simply because they don't have the training with excision. I'm tentativley scheduled to have my first surgery done in a couple of weeks. I'm really scared not knowing if I'm making the right decision and I've gone back and forth in mind a hundred times. But I also know that i can't live my life the way a normal 29 yr old should and this disease has taken a huge toll on my life and my family's life. I don't have any kids yet---but I'm hoping to soon. So I know this surgeon is worth traveling for....rather than having multiple surgeries by someone who can't get it all.

I really think that its worth going forward with a surgery IF you can find a specialist who has the training and confidence in being able to successfully remove it for you without damaging the vessel. Your current gyno is being honest with you because they know their limitations and don't want to put you at risk. Thank god for that! Most of them can't admit that.

but please...do yourself a favor and search for a specialist...I know you're in pain but you don't want to go into surgery with a doctor who is already hesitant. you have too much to live for.

good luck!
-E

 
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Old 10-07-2012, 09:00 AM   #3
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Michelle200 HB User
Re: Need opinions if I should do surgery or not! Please

Thank you, its really nice to get an opinion from someone who suffers from endo also. =) i really appreciate it

 
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