Ever since I took over the running of the Yahoo Support Group "Goddesses of Endometriosis", I have been bombarded with the constant question of how does someone find a specialist who knows something about this disease. For those who have read my first online posting detailing my journey to date with endo, you may recall that I went through doctor after doctor in my search for someone who understood and was able to treat me. It is a frustrating and exhausting part of many of our experiences, and it shouldn't be a reality in this day and age. And yet it is. Doctors out there still hold tightly onto such myths as "this treatment will cure you" (there is no cure), "you're sick because you delayed having children" (it used to be thought that only women in their 30's and upwards had this disease), "it's not that painful" (umm, hello? internal bleeding?)... and many more. So what is a woman who is either diagnosed with endo or fears that she may have this disease supposed to do?
The answer (or at least one of the better options): Find an endo specialist. Easier said than done for a lot of people, especially those who are knew to this journey and are unsure of what to look for, what to ask, and where to even begin. After all, should a regular gynaecologist, someone who specializes in treating women's basic reproductive health matters, be knowledgeable on a disease that effects 1 in 5 or 20% of all women? If only it were this simple.
For whatever reason, it seems that quite a few ob/gyns out there are completely aware of the complex aspects of this disease. Many of us often get the "vibe" that our ob/gyn is throwing up their hands in a display of defeat when the treatments that they are aware of fail to resolve our symptoms. For a woman who is already deep in the throes of despair, this can drive them even further into feeling like they should just give up.
An endo specialist is typically a reproductive endocrinologist, a doctor who has gone beyond the ob/gyn designation to study hormonal diseases of the reproductive system. Word to the wise: not all reproductive endocrinologists are endo specialists, many of them only concentrate on the disease from a fertility aspect rather than a management perspective. We know from research that in many cases, women with endo have "out of whack" hormonal systems, which makes seeking someone who explores hormonally related illnesses a better option right off the bat. If endo feeds off hormones, then it is in part a "hormonal disease of the reproductive system". So what else makes these doctors a better choice?
1) They tend to see more patients with the disease. If a regular doctor is only seeing a handful of patients who have the disease, and their condition is being "well-managed", perhaps they don't have the full picture to deal with more complex cases where the patient doesn't respond so easily. In seeing more patients, we can also assume that they are going to have a wider perspective based upon the collective experience of the women that they treat. If they see more patients, they also likely have better surgical skills. After all, doctors can only improve their skills with experience. Improved surgical skills also means that they may feel more competent at removing endo from places that some other doctors won't touch, such as the bladder and bowel.
2) They tend to keep informed on the latest research. Who wants to know only about the developments that occurred 20-30 years ago with this disease? And yet, if a doctor doesn't bother to read anything on the illness post-graduation, how are they going to know all of the advances that have been made?
So, how does someone go about finding one of these more knowledgeable doctors? Here's how I help others locate specialists in their area:
1. The Endometriosis Research Centre facilitates a Yahoo support group called EndoDocs. This is a list of doctors that other women with the disease have recommended throughout their experiences.
2. Women's Surgery Group has a smaller list of specialists.
3. Victoria's website keeps a list of specialists as well.
4. Next up, I will look at the following medical associations which provide doctor finding services:
The Society for Reproductive Endocrinology and Infertility
American Association of Gynaecological Laparoscopists (AAGL)
American Society for Reproductive Medicine
Society of Reproductive Surgeons
5. You might look at sites such as locateadoc.com (and click on infertility under the area of specialty), ratemds.com, suggestadoctor.com
6. You might also look at your local hospital's webpage and search out the doctors that work at that particular hospital, most of the time they will have some type of bio available online.
With the names of the doctors that I find, I will then put them into google so that the search bar reads "Dr. Name" endometriosis. Of course you will put the doctor's name in question into the quote marks. So for Dr. Redwine for example, the google search bar will read "Dr. Redwine" endometriosis This should pull up any association the doctor has with the illness. If they do specialize in the disease, you'll likely gets hits for research that they have done, you might come across other women who have mentioned him/her, etc... The more hits, the better. Of course, if you don't find any hits at all with the connection between the name and endometriosis, they are less likely to truly specialize in the disease.
I hope that this helps to lessen people's search for medical attention and relieve a bit of the frustration that this disease carries with it.