@VallyWillis I'll have to check out that group. So far I've liked a lot of articles I read from him. I'd really like to read the report he did on Lupron, but I guess it's court sealed. So bummer.

@pup I had a phone/online consult with The Cleveland Clinic and a phone consult with an RE a couple cities over. The RE was free, but the Cleveland Clinic one I had to pay for.

Really thought the video you suggested was very informative. I am at a point in my life where I am considering going to see someone like Dr. Albee. So far, I have only received palliative care and realize it is a "revolving door" of temporary treatment. Is there anyone who is considering going to The Center for Endo Care in Georgia at this point ? I would love to hear about your journey with this tricky disease!

Thanks, Ladies for the info and encouragement. It means so much=) I've begun to believe what "specialists" are telling me basically that I'm too old and damaged to matter (my interpretation)

~~Pup

PUP! Don't let them defeat you, you aren't out of options. Im not sure where you are located, but there may even be an endo expert in your area. Unfortunately we are short on experts but they are out there even if travel is required, it may be worth it. Also even if you need to travel, the doctor may still take your insurance. A lot of them are out of network, but some aren't and it is worth looking into. In the very least I think you should take advantage of a free record consult which some of them offer for free.

Imckittrick: Unfortunately, Dr Albee is now retired from surgery, but Dr Sinervo at the CEC is suppose to be amazing. I plan on having my records reviewed by him, though I have no idea if I will have surgery there since my insurance is a little stingy, lol.

To get started you need to go to the CEC Website and register. They will then send you a getting started packet by mail or email (i got mine in a email). There are a bunch of papers you need to fill out (history, symptoms, ect...) and you will need to write a personal statement explaining your symptoms (the packet explains everything). They ask for certain medical records to be given to them and sent in with the rest of your packet.
Once everthing is sent in I guess Dr Sinervo will review you case and will call you personally with his recommendations. If you plan on having surgery with them they then have their coordinator call you to set up insurances and what not.

The CEC is out of network...but even if they are out of network from what I understand the hospital they use (Northside) may not be. So there are 2 billing portions 1. from the CEC and 2. from Northside.

I have no idea how it works after that since I am still getting my records together (impatiently waiting on my medical records to come).

In the very least it is worth looking into.

http://www.centerforendo.com/treatmentatcec.htm

Thank you so much for all of this information!