All in Your Head?

No woman should have to suffer the pain of endometriosis.  At Mimic Technologies, part of our social mission is to create awareness of diseases that can be treated through robotic surgery. We commend the surgeons who are well trained in order to heal women of this devastating disease.

The following is a Guest Blog Post by Mary Lou Ballweg, President/Executive Director of the Endometriosis Association   

Imagine that you have developed pain—sometimes severe, sometimes excruciating, sometimes “just” nagging. Being a responsible person when it comes to your health, you go to a physician only to be told that it’s mental, not a real physical condition. You search out another doctor and are told that it’s “nerves”, “stress”, or, more ominously, “somatization disorder”. Perhaps the doctor doesn’t tell you the label that has been put down in your chart—but appears to shrug you off as if your pain is unimportant. (Pain, however, has been shown to be the most common reason for seeing a physician.)

It is just such an experience that so many women and girls affected by endometriosis have. In the Endometriosis Association’s large research registry (now housed at the NIH where we collaborate on studies), three-fourths of the women later surgically diagnosed had been told that their symptoms of endometriosis were in their heads or normal.

Recently, a young woman wrote us that her (now-past) boyfriend, a medical student, had told her she had somatization disorder. A few weeks later she was diagnosed with endometriosis and other health problems. She posted her story on endo Facebook pages and within a day over a hundred women had responded saying they had also been accused of making up their symptoms by both physicians and family.

Now, the DSM-5, just published, has made it even easier to label someone with somatization disorder—this over the objections of former DSM editor Allen Francis who wrote, “. . . for reasons I can’t begin to fathom, DSM-5 decided to proceed on its mindless and irresponsible course. The sad result will be the mislabeling of potentially millions of people with a fake mental disorder that is unsupported by science and flies in the face of common sense.” The new criteria is so broad and over-inclusive that it could mislabel one in six people with cancer and heart disease and one in four with irritable bowel and fibromyalgia, according to Francis, based on the American Psychiatric Association’s own field trials.

Since endometriosis is a relatively recently recognized disease (and up until twenty years ago thought to be rare) and significant delays to diagnosis greatly increase the suffering of girls and women (and perhaps makes treatment far less effective since started so late in the disease process), this development may further hamper efforts to reduce the now ten-year average from onset of symptoms to diagnosis.

For more information, see The Endometriosis Sourcebook, Chapter 9, “It’s All in Your Head,” and Ballweg, M.L.  “Blaming the Victim:  The Psychologizing of Endometriosis.”  Obstetrics and Gynecology Clinics of North America, Volume 24, number 2, 1997. Physicians and laypeople alike are welcome to contact the Endometriosis Association, http://www.EndometriosisAssn.org/index.html and endo@EndometriosisAssn.org  to obtain brochures, to help increase awareness and understanding of the disease, for questions, and to contribute to our support, education and research efforts.

Mary Lou Ballweg is also the author of the following books:

 

 

• Endometriosis: The Complete Reference for Taking Charge of Your Health
• Overcoming Endometriosis: New Help from the Endometriosis Association