Debunking Endometriosis: With The Help Of Whoopi Goldberg, Lena Dunham And Julianne Hough

03/14/2017 10:38 am ET Updated Mar 15, 2017

You may be surprised how many women are affected by endometriosis, including many famous and prominent women who have spoken out about it publicly.

Whoopi Goldberg, a well known advocate for raising awareness on endometriosis, spoke about it at the 2009 Endo Foundations Blossom Ball stating “It never occurred to me that somehow women didn’t know about it.” She added “You have to take whatever stigma people think that is there. You have to take it. It’s not male or female. It has nothing to do with that. It has to do with, here’s a disease you don’t know about and you need to know about it. It’s that simple. It’s not rocket science.

“Girls” star Lena Dunham bowed out of the the press tour for the 2014 season of the HBO series to battle endometriosis.

In addition to posting about the condition frequently on her Facebook and Instagram accounts, she chronicled the condition in an earlier memoir Not That Kind of Girl, describing the pain as feeling like “someone had poured a drop of vinegar inside of me, followed by a sprinkle of baking soda. It bubbled and fuzzed and went where it would.”

Julianne Hough had intense stomach pains, which she later learned was endometriosis. She told People magazine “It felt like a knife was being stabbed in me.”

Julianne underwent laparascopic surgery in the middle of the 2008 season of “Dancing with the Stars” to treat her endometriosis so that she could have children.

Endometriosis is a chronic and frequently debilitating disease, that affects 10% of all reproductive aged women. This article from the National Institute of Health’s website notes that endometriosis is most common in women in their 30s and 40s.

This percentage rises when looking at specific groups of women: 60% of chronic pelvic pain sufferers and 50% of women with infertility have endometriosis. Very likely, you or someone you’re close to suffers from this condition.

So what should you know about this frequently misunderstood and under-diagnosed disease?

What is endometriosis?

The cells which normally line the inside of the uterine cavity (endometrial cells) appear in parts of the body where they don’t belong (basically, any area beyond the uterine cavity). Immune system activity mounts and leads to progressive inflammation and scar tissue formation over time. Because endometriosis most frequently involves the organs in and around the pelvis (ovaries, fallopian tubes, tissue lining the pelvis; bladder; intestines), pain involving the pelvic/low abdominal area is one of the most common signs associated with endometriosis. Over time, this disease, which feeds off of naturally occurring female hormones such as estrogen, can spread, which is why the associated pain tends to worsen with age. And the pain isn’t just limited to mind-blowing period pain (“dysmenorrhea”); it can occur throughout the month; some women have pain with intercourse; endometriosis in the bladder area can lead to chronic pain with urination while endometriosis in the intestines can lead to pain, as well as, passage of blood with bowel movements. Endometriosis is sneaky and can pop up in parts of the body far away from the pelvis such as the lungs (which can lead to a collapsed lung or blood in the sputum) or even the brain.

How does someone “get” endometriosis?

Endometriosis tends to run in families—genetics is a factor in determining who will develop endometriosis. So if your mother/aunts/sisters have endometriosis, you’re at higher risk of developing it over someone without the same family history. Other risk factors include early age at menarche (first period) and shorter menstrual cycle intervals (less than 27 days).

Besides pain, how else can endometriosis impact a woman?

Because endometriosis can lead to scarring of the tissue in and around the pelvis, infertility is more common—up to 50% of women with infertility will be diagnosed with endometriosis as well. Pregnancy complications---preterm delivery, preeclampsia, and Cesarean deliveries—occur more frequently in women with endometriosis. Women with endometriosis are at slightly higher risk of developing ovarian cancer later in life.

Interestingly, MRI studies have shown that women with endometriosis who suffer chronic pain exhibit less gray matter in the brain, which is the major component of the central nervous system that allows various sensory perception such as sight, hearing, memory, emotions, speech and muscle control. This is compared to women without endometriosis, or women with endometriosis but no pain. This article on the National Center for Biotechnology Information website underscores the functional connectivity associated with altered brain chemistry in women with endometriosis associated with pelvic pain.

Pain management:

Unfortunately, there’s no cure for endometriosis. Treatments for pain range from over the counter medicine (NSAIDs like ibuprofen or naproxen) to continuous birth control pill use or, in severe cases, injectable drugs like GnRH agonists to shut down estrogen production. Progestin-based IUDs (i.e. Mirena or Skyla) may also help with pain relief. Surgical resection of endometriosis is an option for those who don’t respond to any of the medical therapies though not all women find pain relief after surgery.

In 25% of sufferers, the endometriosis resolves and, because hormone production drops with menopause, some women post-menopause experience an improvement in symptoms once their menstrual cycles cease.

Future developments and treatments:

Researchers are looking into novel ways to block the spread and/or associated pain of endometriosis. Currently available medications that block the production of estrogen (aromatase inhibitors like letrozole) or the growth of new blood vessels or the cascade of immune system chemicals associated with inflammation are now being investigated as potential treatments for endometriosis. Recent studies, published in this National Institute of Health article, have demonstrated the efficacy of a combination of physical and psychotherapy for endometriosis patients with chronic pain.

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