There is nothing wrong with you, your tests are all normal...

Your test results are fine. There is nothing wrong with you. 

You probably just need to lose some weight.

You’re just experiencing what every other woman deals with.  You’ll learn how to handle it someday.

I can’t tell you how many times I heard statements like these.  I’d finally get the courage to visit a new doctor about my constant abdominal and pelvic pain.  I’d go through all of the lab work, the excruciating physical exams, the imaging studies, the awkward health history discussions.  I’d anxiously await the news – I just wanted answers.  And instead, they would dismiss me.

Pain had already become a common part of daily life: exercise, trips to the bathroom, annual exams, sitting for too long, standing for too long—it was all excruciating.  And then, after gaining the courage to go to yet another doctor, after suffering through all of the dismissive reactions as I told them what was wrong, after enduring the painful exams and shelling out thousands for imaging studies, they always told me nothing was wrong.  But SOMETHING WAS WRONG.  No one believed me, even when I couldn’t get pregnant.  There was nothing wrong with me – the MRI showed nothing, the CT was “unremarkable,” the blood work looked “great,” the physical exam was fine. The STD studies were clear (obviously, since I was either a virgin or with my husband). After several rounds of these visits over the years, I began to experience mental and emotional issues in addition to the physical pain that no one could figure out.  I started to believe them that nothing was wrong.  I started to believe them. 

About 1 in 10 women have endometriosis.  On average, it will take 10 years for them to receive an accurate diagnosis.  And sadly, most of them will never receive proper treatment.  Many women experience the same frustration as I did – and many of them lose years of their life—they don’t finish their education because of the constant interruptions, they don’t advance their careers because they need too much sick leave, they don’t have families because, even when sex isn’t painful, carrying a child is often a challenge. 

Endometriosis occurs when inflammatory tissue similar to endometrial tissue is located throughout the body. The tissue swells and bleeds with hormone changes, which causes bloating and pain. Despite the common occurrence, there are many myths circulating regarding endometriosis—even among the medical community. Although most women are told it’s a “reproductive system issue,” it can also affect the bladder, ureter, colon, pelvic sidewalls, diaphragm, and other areas.  When the tissue swells, it can affect all of the areas in the pelvis. The pain can be cyclical or constant, sharp or throbbing. And since so many doctors use failed, outdated treatments, it can often seem very hopeless.

All OB-GYNs are qualified to conduct laparoscopic surgery for endometriosis – and they all seem to think they are pretty good at it.  But the procedure they use, which simply burns the endometrial tissue with a laser, has an estimated 80% failure rate.  Doctors know when they take their patient into the OR that they will probably see them again in 2 or 3 years.  They put women through surgical procedures every two or three years, put them on chemo drugs that have lasting effects on bone health and memory, and belittle the persistent pain.  And the community seems to have accepted that this is okay.  Despite the documented effectiveness of more advanced techniques, medical schools still teach our newest doctors to burn the endo every 2-3 years and to put women through hormonal hell in the interim.  Insurance companies refuse to pay higher fees for the more intricate and skilled procedures available. This is not okay.  It’s inefficient for the insurance companies, it’s ineffective for the patient’s health and quality of life, and it’s misrepresentative of the health care we could provide. 

In June 2014, I was lucky.  I found a surgeon in Atlanta who has dedicated his life to properly treating endometriosis.  He uses the laser to perform excision, a specialized surgical technique, to completely remove the endometriosis from the body.  He doesn’t burn the top of the endometriosis tissue off with the laser, he cuts it out and eliminates the problem completely. Of the thousands of GYN surgeons in the US, only a handful have taken the time to become skilled with excision.  And that’s a shame.