Finding an endometriosis specialist

by Ellen T Johnson

One of the questions we’re asked most often is, “How do I find a doctor who knows how to treat endometriosis?”

This is probably one of the most frustrating dilemmas for girls and women who have (or believe they may have) endometriosis. Where can we find the medical help we desperately need?

It can be difficult to find a doctor who has everything we’re looking for:

surgical skills
thorough knowledge of endometriosis
current understanding of various treatments
openness to complementary approaches
and compassion for what we’re going through.

Of course, we’d also like someone who has the training, knowledge, and expertise to identify all manifestations of this disease. And naturally, we’d want someone who would readily refer us to another expert if a unique problem were discovered. Needless to say, those traits are outside the responsibilities of a family doctor or even a typical gynaecologist.

Doctors specialising in endometriosis

Fortunately, several doctors around the world have made endometriosis their primary focus. These respected authorities are usually located in larger metropolitan areas or teaching hospitals, although a few can be found in smaller communities. But the trick is locating them! After all, there is no medical specialty for “endometriosis expert,” (although there probably should be).

In your quest to find an endometriosis specialist, never start with the telephone book! That would undoubtedly be a waste of time and effort. You should also be careful of recommendations from friends and family members unless they also have endometriosis. I squandered two years with a recommended “fertility expert” who made both my endometriosis and infertility worse.

Use national and regional resources

As with most things concerning endometriosis, the best place to start is with a local or national endometriosis support group. They will know which doctors are proficient in treating this baffling disease in your area. Other online forums, listservs, and newsgroups can also provide a wealth of information. If you have a good relationship with your family doctor, you might want to ask for a referral to an endometriosis expert. Doctors often know the authorities in certain fields.

If you have the means, you may want to consider travelling to see an expert, especially if you live in an area that doesn’t have access to an endometriosis specialist. Certain types of insurance may not cover an appointment with an “out of area” doctor, so you may have to pay out of pocket. This can be a considerable financial, logistical, and emotional decision, but might be worth it in the long run. Treatment by an endometriosis specialist may help you avoid years of misdiagnosis or inadequate treatments.

In an ideal world, every woman with endometriosis would have her pick of several specialists. If you are in this advantageous position, narrow your choices down to two or three doctors. Then ask each doctor to review your medical records and outline a treatment plan. There may be a charge for this service, but it is well worth it.

How to decide?

Of course, expertise in treating endometriosis is just one component of a “good endometriosis doctor.” There are other important considerations as well. During the appointment, ask the doctor specific questions about endometriosis (such as its appearance, its staging, and its treatment). Take the time to assess the doctor’s knowledge and expertise. Remember that fame does not always mean superior knowledge and skills.

After the appointment, ask yourself the following questions:

Did I feel rushed?
Was the office staff rude or unprofessional?
Did the doctor initially meet me with my clothes on or off? (I feel strongly that a doctor should first meet a patient with her clothes on. The “clothes off” position is one of vulnerability.)
Did the doctor answer all of my questions thoroughly? Was there any hint of hostility?
Did the doctor dismiss or trivialise any of my symptoms? (If so, find another doctor!)
Did the doctor seem more interested in getting paid than in taking care of me?
Was any of the doctor’s behaviour inappropriate? (If so, you may want to leave immediately!)
Did the doctor talk about other patients in front of me? (If so, the doctor may talk about your medical problems in front of someone else!)
Did the doctor treat me like an intelligent partner in my health care?
Did the doctor take a complete history and do a pelvic and breast exam?
Did the doctor talk with me about my condition while I was naked and vulnerable – or while clothed, in an area where I felt comfortable asking questions and taking notes?
What is my gut feeling? Can I trust this doctor?

Locating a good endometriosis doctor may take time and effort.

Keep in mind that even after you locate an expert, that doesn’t mean you’ll be pain free. Even the best endometriosis doctors struggle with our disease and its treatment.

However, finding expert help early on can help prevent delayed diagnosis, mis-diagnosis, inadequate treatment, frustration, stress, and wasted effort. Trust me on this; it’s worth it!