Tips From An Excision Specialist: Getting An Endometriosis Diagnosis
It took me seven years to get an endometriosis diagnosis. Sadly, that's about average. I wanted to know how new patients could find answers quicker. So, I asked Dr. Ken Sinervo, an excision specialist and medical director at the Center for Endometriosis Care in Atlanta.
Here's what he said. (Responses edited for clarity.)
If you think you have endometriosis
You want to know how your doctor will approach making a diagnosis. It’s perfectly reasonable for them to offer a trial of birth control if you have painful periods or pelvic pain. But there’s no reason to try more than two options. This is one of the problems: doctors go birth control hunting to try to find one that suppresses the patient’s symptoms without too many unwanted side effects.
If you haven’t seen a response within six months ‚ from an endometriosis perspective — there’s no evidence that you need to try birth control for longer. That can include other types of progestins, Mirena, the Nuvaring, or the patch. But I think anything stronger than that — like Lupron or Orilissa — is not necessary for a diagnosis.
When hormonal options don't help
The next step should be a laparoscopy to confirm or rule out that you have endometriosis. If your doctor says, "We need to try you on some other medication," that's a red flag. The step up to hormone-suppressing drugs can have a lot more significant side effects. And it's not an effective way to find out if you have endometriosis. That's because 85% of patients who don't respond to that kind of therapy are found to have endo on a laparoscopy.
Making sure you have endo
You want to find someone who’s actually going to confirm the diagnosis. A laparoscopy is the only thing that’s going to do it.
Are they going to excise (meaning cut out) the disease? Are they going burn it or destroy it? If they’re going to do anything but excision, that’s a bit of a red flag. That's because you have a much higher rate of having recurrent pain and disease when ablation is used.
Endometriosis on your intestines
If you have a lot of bowel symptoms — or you have a diagnosis of IBS — there’s a possibility that you could have endo on your bowels. You want to ask your doctor this: If I do have endo on my bowels, what are you going to do about it? If they say they’re just going to leave it alone because it’s too dangerous to treat, that’s not an appropriate response. Because it can be treated.
If you have symptoms, will they look for endo in other places?
You want to be able to determine if your doctor will address all of your concerns. If you have bladder or chest symptoms, will your doctor explore that? Or will they only partially treat the disease and leave you with symptoms that may be a problem?
Your doctor's long-term treatment goal
Your doctor should have a plan for what they'll do if they find endometriosis anywhere. Are they going to say: I’m sorry, there’s nothing that can be done. Or are they going to be more helpful and say: I can’t do that myself, but I’m going to find someone who can help you with that.
Prepare for appointment
Sinervo told me that endometriosis is one of those diseases that doctors are poorly equipped to deal with. And training for treatment varies widely across the country. That can make it hard for patients to know what the best possible option is. Research can help prepare you for your appointment.
"Patient education is probably the most important thing for someone with endo," says Sinervo. "A lot of patients aren't given the best surgical options in the first place. Or the second or third or tenth place. And they end up continuing to have pain. If your doctor isn’t going to offer you (treatment that helps) or recommend someone who can, then you have to go out seeking doctors who can."
Do you know someone that has made a difference with endometriosis advocacy?