Reader’s Choice : How to find an Endo Specialist in my Area

 

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It’s a New Year!  Time for new beginnings, fresh starts, and resolutions!  And time time for me to start writing again 🙂

Today’s question is from one of our Readers, and she asks, “Do you have any advice on how to find a local or local-ish doctor who ‘specializes’ or at least is studied in endo more so than your averge ob/gyn? I’m looking for someone like that, but no luck so far.”

So, how do you go about finding a specialist in your area?  It will take patience, research, and balls.  That’s right : balls.  And, I want to make it clear that I am not endorsing any of the physicians identified in this blog, or any of the links provided.  Just hoping to point you gals in a direction…hopefully the right one for you.

Step One: Ask Your Doctor

One of the best places to start is by asking your current doctor, primary care physician, or OB/GYN for a referral to an Endometriosis specialist.    Make sure they understand you’re not looking for a referral to just an OB/GYN, but someone who has experience with or knowledge about Endo.  They might know *just* the right person…This may actually be a fruitful step.  It may also be a big disappointment… But it never hurts to ask!

Step Two: Ask EndoSisters in Your Area

If you know of any EndoSisters in your area, find out where they treat.  And how they feel about their doctor.  Word of mouth is a very valuable resource!  And could also save you a lot of misery…

Don’t know of any EndoSisters personally who live in your area?  Check online forums or social pages and ask for recommendations.

Step Three: The Internet (Research & Patience)

I’ve found a few sites that may be helpful in your search.  See “Resources” below for the links to these pages:

AAGL.org.  The American Association of Gynecologic Laparoscopists has put together a Physician Finder function.  You just plug in “Endometriosis” as the Practice Specialty and toss in your location and *poof* a list pops up.  Each entry offers a little blurb about the doctor; however, it appears each is a member of AAGL.  Some really good physicians may be out there waiting for you to find them and may not be members of AAGL.

Angryuterus.com. Not only does it have a very catchy name, but the author of this page has listed the “Top Twelve” Endo excision specialists around the US.

Docspot.com.  DocSpot is an online directory you can search for physicians in your area that have interests in conditions.  For example, I punched in “Endometriosis” in the Find field and “San Diego, CA” in the Near field.  It brought up a list of 27 different physicians in my area with a “relevant interest” in Endometriosis.  It also offers patient ratings and reviews.

Endopaedia.  Endopaedia created a Google map identifying supposed Endo specialists around the globe.  Each entry contains information on the physician and their practice.  Curious?  Click here.  Zoom in and find your area!  You may just get lucky.

Endometriosis Association.  The Endometriosis Association has created a list of Endometriosis physicians and specialists; however, it is not available to the public.  You must be a member of the E.A. in order to have access to this list (which is mailed to you).  Even as a member, you must pay for it.  Yearly dues are $35, and the physician list is $4.  I have no idea how this list was compiled, or when it was last updated.  But if you’d like to receive it, sign up.

Endo-Resolved. This site has a great page about trying to locate doctors in your area and they have created list of well-known specialists around the globe.  One may be near you!

EndoVictims. This webpage was last updated in 2005; however, has a long list of doctors that likely specialize in treating Endometriosis.  This list was submitted by patients and EndoSisters.  If you scroll down a bit, there’s a list of states and countries; click on yours and it will bring you to the list of physicians in your area.  A lot of the links on this page are dead, but some of these physicians may still be in practice (I saw Dr. Cook on this list!).  I didn’t want to rob you of this resource if there’s a small chance it may pan out for you…

Google.com (or whatever search engine you prefer).  Feel free to type any number of inquiries in the search field.  I started with “Endometriosis Specialist San Diego” to see what popped up in my area.  You have to scroll passed the paid ad links and start clicking and opening new tabs like a madman…This may be a helpful step in identifying facilities or physicians near your area that claim to specialize in Endometriosis and may be a starting point.  Take notes!  And make calls.

Lifescript.com. This site allows you to find a doctor in your area who supposedly works with particular conditions.  Click on “Doctor Finder,” scroll down and click on “Conditions,” then click on “E” and find  Endometriosis. You’ll then be prompted to select your state and, once loaded, use Ctrl+F to search for your city.  Click on that link and it brings up a long (hopefully) list of physicians in your area.  Each physician entry identifies their fields of interest, as well as their education and licensing history, background, patient ratings, and comments.

Myendometriosisteam.com. This is a website sort of like Facebook, but only for women who suffer from Endometriosis.  There is a “Provider Directory” on this site where women can submit their physician information and identify they treat Endometriosis.  If you haven’t already signed up, it may be a valuable resource for you.  However, don’t break the terms of service of you get the boot immediately (despite the best intentions…).

Yelp.com. Really?  I was surprised to bump into a Yelp search feed about Endometriosis (thanks to the Google search from above).  If you go to Yelp’s webpage and type in “Endometriosis” in the Find field and your location (i.e., San Diego, CA) in the Near field, you may be surprised to see what pops up.  It identifies patient reviews, as well as facilities that list they specialist in Endometriosis.

Step Four: Ask Questions (Balls)

So you think you’ve found your doctor (or a list of several doctors) to check with about treating your Endometriosis?  Get on the phone and call.  First, make sure they take your insurance! That’s a big one.  And if they don’t, ask about payment plans, financial assistance, etc.  Then let the receptionist know you’d like to either talk to the physician, physician’s assistant, or the office manager to answer some questions to see if they’re the right fit for you.  What’s the worst they can say? No?  Well, that’s okay.  They may insist you make an appointment…

Now what do you ask?  And make sure you write down your questions and bring them with you…otherwise you may be overwhelmed and forget (I know I do)!

Ask them about their educational and medical background. How many Endometriosis patients do they treat? How many Endometriosis surgeries have they performed? Which surgeries to they prefer? Have their surgeries/treatments been successful?  How do they feel about hysterectomies? How to they feel about pharmaceuticals (GnRH, pain killers, etc.) treatments?  Are they comfortable treating your Endometriosis?  What do they believe the cause of Endometriosis is?  Do they have a plan for your treatment?  Do they coordinate with others specialists for cases of Endo on the bowels, bladder, lungs, etc.? Endometriosis.org has an extensive list of questions you may want to ask, too (click here).

If you are not comfortable with the physician, their office, their staff, or any of their answers, walk away.  Keep searching.

Dr. Camran Nezhat has put together a list of five characteristics to look for when seeking your Endo specialist.  These areas include if they’re published or have been involved in studies/research about Endo, their experience, if they’re a specialist, their education, and (some consider this the most important) compassion.  You can read it here.

Just my Two Cents

An “Endo Specialist” doesn’t have to be someone who purely works at some well-known Endometriosis facility or is identified on some list.  My OB/GYN, Dr. Mel Kurtulus, is just a regular OB/GYN who happens to treat several patients with Endometriosis.  He also happens to be the man who diagnosed, and excised, my Endometriosis in 2014.

Did I know I had Endo when I met Dr. Kurtulus? No.  But would I go anywhere else for surgeries or treatment of my Endo?  No.  Dr. Kurtulus has answered all of my questions, supports my treatment plan, and is an incredibly skilled surgeon (he uses the DaVinci robotic system).  He listens to all of my questions and concerns, has excellent bedside manner, and his staff are amazing.  He may not be listed in any of these sites as an Endo Specialist, but I consider him one.

So what’s my point?  Don’t feel like you have to find someone who is labeled an “Endo Specialist.”  You just have to find someone that fits your needs and requirements.  And you will…through patience, research, and balls. Good luck!!  I hope this helps.

Resources:

AAGL.org

Angryuterus.com

DocSpot

Endometriosis Association

Endometriosis.org – Finding an Endometriosis Specialist

Endometriosis.org – How to find a specialist

Endopaedia – Facebook page

Endopaedia map

EndoVictims

Google

Lifescript

Myendometriosisteam.com

Nezhat.org

Yelp

 

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

 

 

 

4 thoughts on “Reader’s Choice : How to find an Endo Specialist in my Area

  1. Hey Lisa! Just wanted to let you know that I used this post to find an endo doctor in my area… almost 9 months later! I had a few doors slammed in my face along the way and I hit some other dead ends, but I *finally* managed to find a promising doctor from one of the links. I have a surgical consult scheduled with her in a month’s time, so THANK YOU for all this massive info.

    Liked by 1 person

    1. Eeeeeeeeeeeek!!!!!!!!!!!!!!!!!! Look at you and your perseverance!! I’m SO happy you stuck with the fight, didn’t lose yourself with the slammed doors, and pushed forward! Good luck at the consult and hoping for the best possible bedside manner available!!!! ❤ Thank you for letting me know 🙂 I'm sorry it was such a roller coaster.

      Like

      1. Thank you for your encouragement. It really means a lot. And a thank you for all your diligent hard work in Bloomin Uterus… I think you and I are endo sisters! Too bad you live so far away. 😦 If you ever move out east, Philly’s a great place to live. 😉

        Liked by 1 person

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