I visited my GP for a myriad of symptoms that she suspects is endometriosis. I'm headed to my Lady Doc on Monday, but wasn't terribly concerned. I thought it would be similar to the LEEP I had last year, as in "Zap zap, you're done." I wasn't even bothered—that is until I emailed a friend about her experience with endo.
Help me parse what my friend is saying vs. what my GP said I should do? I'm feeling some pressure to move quickly.
. (All except the second one, surprisingly.)
Two previous questions I found relevant: 1
This is a bit weird, but I'm going to copy and paste exactly what my friend wrote. See below:
I am SOOOOO glad that you contacted me about this. There are really only like 5 doctors in the US that know how to deal with endometriosis properly, my surgeon is one of them and if you need contacts in NYC I will get them to you right away.
It's a really tricky disease and unfortunately there is no way to know if you have it/how bad it is until they do surgery. But please please don't just get surgery with just any gyn because there is an 80% recurrence rate within 6 months if you don't see an expert, and surgery has its own set of complications that you want to avoid. Best to have one really good surgery than like 12 bad ones!
My surgeon here in Atlanta is like the best person I've ever met, so if you want to come "home" to deal with this, you can't go wrong. His name is Dr. Sinervo and his practice is called the Center for Endometriosis Care. They offer a free records review, and you don't need any prior diagnosis (I had none).
The most important thing is your detailed personal history, because they do this all day long every day they are super good at recognizing the subtle symptoms--I had none even though
I had the most advanced stage disease and had to lose 3" of my colon, my appendix and some parts of my utero-sacral ligaments.
I don't say that to scare you, but I kind of do because it's so important to understand how serious the disease is. Not to mention if you ever want a family, you need to take care of it NOW. I may have waited too late and that has been the saddest thing to ever happen to me.
I belong to a gigantic network of women with endo all of the world so I have a lot of information about the disease. A great place to start learning is the CEC website, here: http://centerforendo.com/endoq&a.htm
Do NOT listen to your gyn, I am dead serious. They learn 1920's information in med school and will completely ruin your life if you do what they tell you. Most importantly, DO NOT TAKE LUPRON. It is the most evil drug ever, my surgeon wants to see it completely off the market in his lifetime. Birth control pills don't work either, they may control the pain but they basically allow the disease to keep eating away at your insides.
Ok, sorry to be all up on my soapbox about it, but I'll need a lifetime of therapy to get over how angry I am at all of the doctors who screwed me over before I finally found a good one. Give me a call if you want to chat, I don't know if I addressed any of your concerns and I am happy to help a fellow lady! I'm sorry that you're dealing with this, I have been through hell on this journey and I absolutely understand how isolating and awful it can feel.
So, yeah. I need some help figuring out what to do, now that I've read that.
I have an appointment with my usual OBGYN on Monday, but it sounds like she won't be able to do anything bit say, "Yep, sounds like it to me. Let's schedule you a laparoscopy." Which is exactly what my friend says NOT to do. Or put me on birth control, which only seems to treat the symptoms, and on which I do terribly. I also really think my OBGYN will put me on Lupron, which again, sounds miserable—both from my friend, and a few ladies in the above linked AskMes.
Should I skip the OBGYN and head straight to the endo specialists
my friend recommended? They do a free records review, so it can't hurt. But they're in Atlanta and I'm in New York, and if I'm a farther along "stage," it might be an extended recovery time—away from home*.
Can you guys help me figure out next steps are? Share some of your experiences? Cut through some of the noise?
*I'm aware I might find a specialist in NYC that is just as great as the center in ATL that my friend recommends.