Endometriosis specialists

Finding an endometriosis specialist
by Ellen T Johnson, USA

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.

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.

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. Also consider asking for opinions online at the Endometriosis Forum, where women with endometriosis gladly share information with others. 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.

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: