Finding an endometriosis surgeon in New York City

June 14, 2012 10:37 AM

Finding an endometriosis surgeon in New York City...what's with this "out-of-network" business? I am scared, and I can't find a doctor that will see me.

I have been diagnosed with an 8-cm dilated fallopian tube that my MD says has to come out. And two endometriomas, one on each ovary. I would like to find an experienced laparoscopic surgeon to do this surgery, because this is likely caused by a whole bunch of endometriosis issues, and I would like to have those issues addressed while they're in my abdomen. But Every. Single. Endometriosis. Specialist. I can find is an "out-of-network provider," and I just learned that I have no out-of-network benefits. Crap. My health insurance company website is utterly unhelpful. The people on the phone with my health insurance are utterly unhelpful. I don't want to just go to come random surgeon who does six or seven of these surgeries a year -- I'd really like to retain my ability to concieve a child. This is a big deal for me. A really, really big deal. And I'm terrified that I'm not going to be able to find a good surgeon. $18,000 plus out of pocket is not an option for me. What can I do? I am willing to travel if I have to.

posted by anonymous to health & fitness (11 answers total)

What does your own doctor say?

Your doctor works with your insurance, so your doctor would be able to recommend someone in that network. Your doctor would also know what your overall concerns are, and can help you find a surgeon that s/he knows will be a good match.

Apologies if you've already spoken to your regular doctor about this -- but from the way you've phrased the question, it sounds like you haven't spoken with your doctor about this, and they can be very helpful. Good luck.
posted by EmpressCallipygos at 10:42 AM on June 14, 2012

Your state has an Insurance Commission, and it's part of the Attorney General's Office. Check your state's website for more info. Ask them to help you decipher the rules. Your insurance co. is likely to have to provide accredited care for this problem, and may have to pay for out-of-network care, but doesn't want to tell you that. Or not, depending on the contract and your state laws.

Good luck; I hope it goes well.
posted by theora55 at 10:47 AM on June 14, 2012

Yes, speak with your doctor about this. They can recommend a surgeon for you - in fact, they should be recommending one if they are stating that you need surgery.

You don't mention which insurance you have, but try contacting The Fibroid Center of New York and see if they take your insurance. I know they mostly mention fibroids, but the doctor who runs that practice specializes in all manner of uterine issues and their staff is excellent. They're associated with Mt. Sinai, which takes a lot of different insurance, so you may have some luck there.
posted by bedhead at 10:51 AM on June 14, 2012 [1 favorite]

Sort of seconding bedhead - I have endometriosis, and my doctor back in Texas specialized in women's diseases, but not specifically endometriosis. Still, I was very happy with him, and would have recommended him to anyone. You may have some luck just calling up the doctors who are in network and asking them about their specialties.
posted by backwards compatible at 10:57 AM on June 14, 2012

It would be helpful to know more about your insurance. Specifically, is it a nationwide plan, or is it local (particularly, is it local in another region that doesn't include NYC?). Some plans have a reputation for paying providers late or poorly, so providers stop working with the company (particularly specialists).

It also would be useful to think about where you are getting your insurance from-- if it is job-related, then during the open enrollment period you might be able to switch to a PPO option (which often has better out-of-network coverage).

Occasionally providers, both hospitals and physicians, will be willing to set up a payment plan ahead of time, sometimes even giving you some amount off of the total price (in line with what an insured patient's insurance would pay). 18k is still probably out of reach here, but maybe not.

Lastly, it would also be useful to know how long you can wait for the surgery. If you have some time, you might be able to save some in advance, wait for the open enrolment period if applicable, or shop around different practices to see if there's a lower cost option.

And, yes, of course you should be talking to your current physician.
posted by nat at 10:58 AM on June 14, 2012

What is your insurance?

Cornell has great laparascopic surgeons who focus on maintaining fertility. Specifically Glenn Schattman did a beautiful endo surgery for me and I got pregnant in a hot minute afterwards.
posted by the young rope-rider at 11:50 AM on June 14, 2012

Is the MD who diagnosed this your regular famiy physician, or an Ob/Gyn?

If the former, see your Ob/GYn and if he/she can't do the surgery, have them recommend someon in-network who can.

If it was your Ob/gyn, that office should know which specialists are in-network, and again you should get a referral from them.

Don't panic! Echoing that you only need a surgeon specializing in women's health, not necessarily one who very specifically handles endometriosis alone. Most ob/gyn surgeons these days WILL be very familiar with endometriosis, believe me! It is becoming much more common, and there is some speculation as to why (hormones added to our food sources is just one speculation), but the important take away for you is that there WILL be qualified surgeons within your network to deal with this, okay?

Endometriosis sucks. I'm sorry you're dealing with all this, but you'll be okay! Good luck with your surgery.
posted by misha at 2:01 PM on June 14, 2012

How are you looking for specialists? Are you just Googling 'endometriosis specialist'? I would recommend instead that you use your insurance company's website or phone number to figure out which major medical institutions are in-network, and then call that institution's department of OB/GYN and ask about their gynecologic surgeons and their experience with endo. They may not be labeled or advertised as a 'endometriosis specialist' and yet they still perform procedures like this very regularly.
posted by treehorn+bunny at 2:57 PM on June 14, 2012 [1 favorite]

If you can travel, Camran Nezhat (or any of the Nezhats). I cannot say enough good things about him. The father of laparoscopic surgery for endometriosis and has performed 10,000 plus surgeries. It's all he does. He is a saint whose interest in helping women is motivated by his family history which I will not write about online. He and his two brothers are all reproductive surgeons. His office handles insurance stuff really well and he is in-network for many of the main providers, including BCBS. He saved me. He will not cut out anything he doesn't need to. He will preserve everything.

Do NOT ask your doctor and expect good info as some of these people have suggested. I asked a dozen ObGyns over more than a decade and there was no solution until I did my own research and found the Nezhats. I traveled to California for it and it was entirely worthwhile. My endometriosis was Stage IV, with all my insides congealed together with scar tissue. I had trouble walking at age 30. I had 7 gigantic fibroids and now I have none. I was offered Lupron... randomly given birth control pills... told there was no solution... told there was no solution besides hysterectomy... and even offered antidepressants by some douchebag. Most doctors are not up to date on their knowledge of this.

Caveat - endometriosis recurs and people can need surgeries again sometimes, though usually not forever. 3 years after, I am probably going to get another one as my endo is pretty aggressive and has come back about 20%. Taking anti-inflammatories and some various herbs and drugs can help avoid that. Message me offline if you want to discuss. I've done a ton of research.
posted by killiancourt at 3:49 PM on June 14, 2012

Also -- the Nezhats are so kind that even if they weren't in-network for you, they would probably be willing to offer you suggestions about who else to go to. They are so absolutely top-notch skilled, and spend their time and energy training other surgeons, that they might be able to give you good recommendations and avoid charlatans.

Some of the endo docs are charlatans. You really have to cut out ALL the endo, including in hard to reach places, and with a scalpel and not a laser (which only gets the surface). It's grueling surgery that takes many hours. You really want to go to someone good who comes highly recommended.
posted by killiancourt at 3:54 PM on June 14, 2012

I'm sorry to hear about your situation.

One point - the surgeon is only part of the bill - the hospital and the anesthesiologist are other major factors.

While you're doing your research, find out what hospitals are in-network, because that will go a long way towards helping with the bill. And even if the anesthesiologist at the hospital isn't in-network, the insurance co will be forced to cover them as if they were (can't have surgery w/o the drugs).

FWIW - I just had a collarbone plated. Hospital was in-network, surgeon was not. Don't ask me how, I don't know what was done on the other side, but his fee ended up on my in-network bill, and ended up paid for.
posted by swngnmonk at 5:35 PM on June 14, 2012