How To Find an Endometriosis Specialist
It can be really hard to find a specialist. That’s because endometriosis falls under the umbrella of gynecology. But to treat it well, OB-GYNs need advanced surgical training. Usually that’s a fellowship in something called minimally invasive gynecologic surgery (MIGS).
But you can’t just type in “MIGS” or “endometriosis specialist” to find a doctor. With that said, here are some tips to narrow your search.
Check local and national endometriosis groups
There are a growing number of organizations and social media sites that focus on endo. Some are backed by doctors or health advocates, while others are managed by hospitals or universities.
Personally, I came across my latest surgeon — who works at an academic hospital and focuses on endometriosis care — by searching “endometriosis diet.” He'd posted something online about it. I then cross-checked his name on a Facebook list curated by Nancy Petersen, a registered nurse who founded the endometriosis information site Nancy’s Nook.
My specialist is also listed on the iCareBetter platform. That’s a directory of endometriosis specialists approved by other doctors. Fellow warriors in my Facebook group — ExtrapelvicNotRare Endo Support and Education Group — also raved about him.
Check with your health insurance
This is probably the biggest hurdle when it comes to care. At least it was for me. Surgery can cost thousands of dollars if you pay out-of-pocket. And it wasn’t until 2020 that my insurance plan included two excision specialists, including my recent surgeon. That meant that, even though I knew who to go to in the past, I couldn’t afford to see them.
You can also appeal to your health insurance. That's when you ask your insurer to make a special exception. Your doctor will need to provide a referral for a specific out-of-network doctor. They’ll have to explain why you need to see this doctor. For example, if you think you need excision surgery but there are no in-network surgeons on your plan.
Though it's worth a try, this process is a little tricky when it comes to endo. There’s no guideline that says endometriosis has to be treated by excision or a "specialist." The American College of Obstetrics and Gynecologists (ACOG) says endo can be treated by OB-GYNs in lots of ways. That includes ablation or excision, hormone suppression, and birth control.
Ask lots of questions
I write about endometriosis for a living, so I’ve interviewed a lot of doctors who focus on it. They say one of the most important things to ask is: How many cases of endo do you treat a month? There isn't a set number. But you want it to be a regular part of their practice, not something they do a handful of times a year.
Here are some other questions you should ask:
- Do you have advanced training, such as in MIGS?
- Do you look for endo outside of the pelvis? What will you do if you find it there?
- Will you do excision or ablation?
- Do you work with a team, such as a bowel or urinary surgeon?
- Will you check for adhesions?
- How do you confirm that tissue is actually endo?
- How will you address my pain?
- Should I see a pelvic floor specialist?
Don’t give up
The field of advanced gynecologic surgery is growing, and so is interest in better ways to treat endo. I’m hopeful that means we’ll have more choices — and trained surgeons — in the future.
How old were you when you were diagnosed with endometriosis?