Finding an Endometriosis Specialist
The statistic is not new, but it’s still shocking: In the US, people may have symptoms for 7 to 11 years before endometriosis is diagnosed. We know, too, that many people living with endometriosis try multiple treatments and still have pain. Endometriosis is complicated, so you want a health care practitioner who understands it—and who understands you. A certified "specialty in endometriosis" doesn't yet exist. Here are some tips on finding a specialist to help you with your journey.
It’s important that you feel heard and that your doctors clearly explain your options. If you already have a long-term, trusting relationship with your local doctor, that person may be the best choice for you. If you’re uncertain about a major treatment decision, you can always get a second opinion. Then you can go ahead with the plan with your regular doctor with confidence.
When your situation is more complex - you know you have kidney endometriosis, for example, or infertility - ask your family doctor or gynecologist for referrals. They’ll often know which doctors in the community have the right skills.
Gynecologists or clinics that focus on endometriosis care will see a lot of endometriosis, as may doctors at larger referral hospitals. They will also be connected with non-GYN specialists that can handle complicated endometriosis. You may have to travel to be seen at a clinic like this. Make sure your health insurance provider will cover your care there.
A doctor who is board-certified in Minimally-Invasive Gynecologic Surgery does extra training and maintains up-to-date knowledge in laparoscopic surgery. This certification is from the American Board of OBGYN and is often listed in the doctor’s bio. A surgeon may have lots of experience and not be certified, so it’s just one factor to consider.
Some teams treat endometriosis from different perspectives, rather than only surgery and hormonal therapies. The care team includes pelvic floor physical therapists, fertility specialists, counselors, pain specialists, massage therapists, and nutritionists. This full-scope care is helpful for people with other chronic health problems. Because it’s new for endometriosis, there’s not a lot of research to tell us how useful it is. If this sounds like a good fit for you, look for a “multidisciplinary” endometriosis clinic.
Your insurance provider website may provide a list of specialty doctors.
The endo community
People in an endometriosis support group may know about health care providers in your area, and this may give you a place to start—but do your own research, too.
Endometriosis can feel overwhelming. Finding a doctor or team with the right mix of surgical skills, experience, empathy, and willingness to explain your options can help you make the treatment decisions that are best for you.
How old were you when you were diagnosed with endometriosis?