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What To Say And Ask...

A MyEndometriosisTeam Member asked a question 💭
Horseheads, NY

So I have an appointment with a surgeon on Monday. She isn't an Endo doc, but my PCP is hoping that the surgeon's specializing in adhesion removal and laparoscopy would at least help point us in the right direction. (I love that my PCP hasn't just given up on me)

I am not sure what I should say or what questions I should ask. Should I come in with a list of Endo info and grill her or...I don't even know. I have my symptom list on my phone, but knowing that this surgeon doesn't specialize… read more

March 6, 2020
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A MyEndometriosisTeam Member

I would ask the surgeon what they know about endometriosis. Will they know what to look for and in what areas? I would definitely keep looking for an excision specialist as well. I would hate to see you have a surgery where they can’t do anything and just close you back up.

March 6, 2020
A MyEndometriosisTeam Member

Personally I dealt with both a surgeon who was not an endo specialist who did my first op and then a doctor who was a specialist and who did my second op.

First time I was new to all of this. I was overwhelmed, scared, naive (now I see that) but above everything I was in so much pain that I would do almost anything to make it stop. I didn't ask the right questions and when I did I tried to dismiss the fact that she wasn't really giving me the answers. I desperately wanted to believe that she could help me.
It was a mistake. She didn't do much during the first lap which meant I was back on the operating table six months later (but this time with a different surgeon who knew what he was doing).

The thing is, dealing with endo specialist is not just about making sure that the operation is done properly and the number of surgeries is minimised. It is also about having a comprehensive care: having all the right tests done, having discussions about what treatment is best for you. And making sure you feel confident about putting yourself in the hands of that person.

This is my personal experience and my situation might be different to yours. But knowing what I know now, I learned the lesson the hard way and if given a chance I will always advocate for insisting that endo is such a complex illness, that only experienced specialist should be allowed to deal with it, not to mention operate on us.

Hope all goes well for you, best of luck!

March 7, 2020
A MyEndometriosisTeam Member

I know how tiring and exhausting this gets with doctors. There are more specialists out there you can look into. Are you part of Endometropolis and Nancy’s nook on Facebook? They have both have files you can search with doctors. I am in New York as well and even looked at doctors in PA, MA and so on.. I just don’t want to see you settle for something that may not really help and you could find yourself back in the same position.

March 7, 2020
A MyEndometriosisTeam Member

I love you guys! I am so grateful that there is this site and that there are others like it. I honestly don't know where I'd be without all the support and kindness. Thank you all so much! Also, @A MyEndometriosisTeam Member, I never know if I'm uplifting or just corny, perhaps a bit of both. I'm glad to know that it helps. Lol, Betty White is amazing!

March 11, 2020
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member ahhh I'm truly sorry that you've been through all that. It makes me so angry as well! All you're trying to do is to get the best care possible for yourself and yet the stupid system and incompetent people in it make you feel like you're crazy. How messed up is that! It's like in one of the articles @A MyEndometriosisTeam Member shared: 'medical gaslighting'...
All I wanted to say by sharing my story is don't give up.
You also know better than anyone how frustrated, disheartened and lonely fighting this disease can make us feel. And I think we would not be humans if we've not let ourselves cry once in a while.
I really hope that after the down days you'll have your ups again. And that you will finally find a good understanding surgeon that will take proper care of you.
Hang in there, you will get through this!

March 11, 2020

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