WHAT IS ENDOMETRIOSIS?

Endometriosis affects 176 million women worldwide and causes untold suffering, yet both the public (and much of the medical community)

are in the dark about it.

The first thing everyone should know about endometriosis is that it is a condition in its worst form is marked by severe pain. Endometriosis (endo for short) affects a staggering 176 million women worldwide and over 5.5 million women in North America alone. It is the third leading cause of hospitalization for gynecologic reasons in the US.

In my experience treating women with pelvic pain—more than 25 years of residency, private practice, and fellowship—the medical definition doesn’t even come close to describing what it’s like to experience this disease. Having endometriosis is like having tens or hundreds of excruciatingly painful blisters or bee stings covering the inside of your pelvis. It occurs when lesions similar to the inside lining of the uterus, the endometrium, implant and grow outside the uterus. When this tissue gets outside of the uterus and inside of the body, it can be very caustic and damaging. Endometriosis lesions, (think blisters full of acid), can be found anywhere in the pelvic cavity, including all the reproductive organs, the bladder, bowel (including the colon and rectum), and appendix as well as other places in the body such as the lungs. Endometriosis can also cause scar tissue (adhesions), connecting internal organs to each other and sometimes even cause internal organs to fuse together as if they were encased in cement.

If you can imagine those blisters, perhaps you can better understand how women with endo can feel intense, horrific pain that few of us, we hope, will ever have to experience. Some women describe it as worse than labor pains: knifelike stabs in the pelvis, aching, stinging, and burning. The pain isn’t limited to the uterine area; it can be side pain, ovarian pain, hip pain, thigh pain, and fairly severe lower-back pain. It can be grinding pain, like that experienced by advanced cancer patients. In addition, women can experience nausea, pain with intercourse or bowel movements, flulike symptoms, and incapacitating fatigue. Endometriosis can truly be torture.

I think the closest way a man can relate is to imagine getting hit in the testicles -- repeatedly. If men were describing that kind of pain to their physicians, I’m guessing they’d be taken a lot more seriously than are many women who complain of the pain from endo. As one of only a handful of gynecologists who specialize in the treatment of endo, I’ve seen women from across the globe who have come to my center desperate for relief. Unfortunately, many doctors aren’t adequately educated in how to diagnose and treat this potentially devastating condition.

The teenage years are typically when most women experience the onset of endo.

While similar in timing, this pain is completely different from normal menstrual cramps. It is not uncommon for girls who are suffering from the first stirrings of endo to miss a couple of days of school each month from cyclic pain that can be worse than the level of pain experienced after major surgery. This, of course, is the time to begin to suspect and treat endometriosis. But because there’s a general lack of awareness of the disease, many of these girls don’t get a correct diagnosis or any support. Most families, knowing nothing about endometriosis, believe the girls are suffering menstrual cramps that are in the realm of normal, and are perhaps making too big a deal of the pain, after all, she looks ok. In some families, there’s a tendency not to discuss "private parts" and "women’s problems," and often, girls who feel embarrassed about their newly changing bodies haven’t learned how to stand up for themselves and say that something really hurts.

GETTING HELP

So, what do you do if you suspect that you or your daughter is suffering from endometriosis? The first step is finding good care. Unfortunately this can be difficult as even some of the best doctors are horribly misinformed about this disease.

It’s shocking to think that worldwide, the average delay in diagnosing the disease is six to 11 years—vital, productive years when a woman shouldn’t have to live in pain. So, finding a doctor who can accurately diagnose and adequately treat endo is crucial. The following will help you do this. But if you are not getting the answers or treatment you need, it may be necessary to travel to an expert who routinely sees and treats your type of situation.

Find an Ob/Gyn Who Is Informed about the Disease (and Recognize that Not All Are)

You’ll want to get a referral to a doctor who has a special interest in endometriosis and has advanced laparoscopic surgical skills and treats endometriosis with wide excision rather than coagulation. The easiest way to determine if your doctor has advanced laparoscopic skills is to find out what percent of hysterectomies are done laparoscopically. Ideally he or she is doing almost all hysterectomies through the laparoscope rather than at laparotomy (big bikini incision) or even vaginally. Some times a local endometriosis support group or one of the national endometriosis organizations can be helpful finding a doctor who has a special interest in endometriosis.