March is Endometriosis Awareness Month, but the disease has been on a lot more people’s radars as of late. Celebrities and health-care professionals are coming forward and talking much more openly about the debilitating illness, which is still under-diagnosed. It causes exceptionally heavy periods and excruciating cramps that leave women unable to get out of bed.

Fortunately, the more we talk about it, the more we know. We’ve covered endometriosis a few times before at The Lily, including it on a list of chronic illnesses that can affect our work life and how health-care providers can ignore women’s complaints and concerns. It’s a disease that affects 1 in 10 women and can take about a decade to diagnose because of misinformation.

Endometriosis occurs when the lining that typically grows inside of the uterus grows outside of that space. Those growths can result in abnormal bleeding, extreme pain – including during or after sex – digestive issues and impact fertility. These symptoms typically show up in women between the ages of 15 and 44. Only a medical professional can officially diagnose endometriosis.

For the past several years, Lena Dunham has been open about her struggle with endometriosis. In an essay for Vogue, Dunham revealed she had a hysterectomy at 31 to treat the illness. “Top Chef” host Padma Lakshmi has come forward about her experience with endometriosis, which she wasn’t diagnosed with until her late 30s. Pop singer Halsey, 23, recently spoke about her struggles, noting that talking about a reproductive illness “doesn’t make you weak.” Australian radio host Mel Greig shared photos of an endometriosis-caused flare-up on her Instagram, noting that she had to back out of a speaking engagement because of it.

THE REALITY OF ENDOMETRIOSIS: One minute you can be getting ready to talk on a panel in Sydney for @redagencyau and @endometriosisaustralia and the next minute it feels like someone is stabbing you in the abdomen with a knife . . . A pain that I and many women know too well. Within 5mins my whole reproductive system was inflamed and I started to vomit. Nausea is a new symptom for me. I now can’t physically sit in a car for 2hrs because the pain is too unbearable and the pain medication that I once used has now been taken off pharmacy shelves, within a few hours I predict I’ll be in the emergency room begging for pain medication. This is the unpredictability of Endometriosis. It can literally come from nowhere without a trigger and render you helpless, I now can’t attend the event. This isn’t the first and it won’t be the last time this chronic illness has controlled my life. Ironically there are a few days left of Endo March the month of awareness. Luckily for me I was attending an Endometriosis event so my cancellation and flare up was instantly understood. For many women they feel embarrassed to call in sick or cancel with the truth of their condition, it’s much easier to say you have gastro. We need to end the silence and start the conversation. Endometriosis affects 1 in 10 women and it doesn’t discriminate, whether you are an Olympian like @emcbomb or a model like @tasha_rossxx or an everyday Mumma. We can’t ever feel ashamed to say ‘I have Endometriosis’ we don’t want a stigma we just want a god damn cure. #endometriosis #endosisters #7yrstodiagnose #nocure #chronicillness #endobelly #notashamed #thisisme #endthesilence #notpregnant

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Everyday women are opening up about the disease as well. Since endometriosis can take on many forms, not everyone’s experience is quite the same, and sharing their stories is one way to get a better picture of what the illness looks like. Here are a few that stood out:

Watch

"Me and my endometriosis”: In this video, the BBC features a group of 12 women from the United Kingdom who are dealing with the illness.

“At the minute, I feel like I’ve got a knife in both my ovaries,” Lauren, 26, says. “The pain is like the rest of your womb being carved out like a pumpkin. It is horrific.”

Listen

Heba Shaheed on “Healthyish”: Shaheed, co-founder of the Pelvic Expert, a website that specializes in women’s health, shared her story on the podcast “Healthy-ish.”

“It got to a point where I was in severe chronic pain on a daily basis with pelvic pain, nerve pain, migraines all the time,” Shaheed said. “It just escalated.”

Read

"My life with endometriosis”: An anonymous sufferer told her story to the Cut: “The pain is truly debilitating, and the lack of information and solutions can be extremely depressing and anxiety-inducing.”

"Is endometriosis the most under-recognized women’s health crisis of our time?”: Another woman named Kate opened up to Well + Good about caring for herself, saying: “I can only continue to educate myself while focusing on my health and wellness and managing my pain.”

• The BBC also talked to two other women, Megan and Melissa, who described how they were diagnosed.

If you do have endometriosis, there many online resources and support groups. If you think you may have endometriosis, remember nothing replaces talking with your doctor or finding a specialist.

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