Lena Dunham, most commonly known for the HBO show Girls, has become somewhat of a household name in recent years. With the start of her online newsletter Lenny Letters, she’s been sharing her opinions and experiences about women’s issues. In particular, she’s been very vocal about her experiences with endometriosis. She’s certainly not the only woman who suffers from the condition, but her celebrity status allows for her voice to stand out as an advocate for those who do.

Last November, she opened up about her symptoms and struggles with endometriosis. As she illustrates in her post, the condition doesn’t present itself with any obvious, outwardly, physical signs. It’s an invisible disease. Endometriosis is when the tissue that usually grows inside the uterus starts to grow outside of it, which can happen on organs nearby like the ovaries, bladder or stomach. In some cases, the tissue can appear as far away as the lungs or brain. All of this manifests itself as pelvic pain, intense cramping, and irregular bleeding. It can also cause diarrhea, chronic fatigue, and headaches. All of these are internal. None of these symptoms make it obvious to other people that there’s anything happening within the body. There are no casts or braces to show the body is need of support. No bandages to signal that anything needs healing.

Unfortunately, the only way to definitively diagnose endometriosis is with laparoscopic surgery, which is normally not needed unless the symptoms are severe and interfering too much with everyday life. Doctors may even glaze over endometriosis since the symptoms of it are so similar to other conditions. Even with a diagnosis, no two women will have the same symptoms to the same degree or find relief in the same ways because there’s no blueprint for a treatment plan. Different medications and diet changes may help, but different combinations will work differently for each person. Always talk with a doctor before making any changes to a treatment plan, or if a certain medication is causing side effects.

For the 1 out of 10 women who suffer from endometriosis, it can be a frustrating battle to get through the week – or even just the day. Adding to the struggle, other people often mistake the symptoms as menstrual-related cramps or something that will just pass with time as if it’s no big deal.

A huge factor in coping with endometriosis is understanding – whether that’s your partner, friends, or employer. Endometriosis can be difficult to talk about since it requires a certain degree of openness about the female anatomy. Maintaining open communication with your loved ones might seem intimidating or burdensome, but it’s important for other people to know what’s happening. Without any outwardly symptoms, it’s hard for others to know which is a bad day and which is a good day. If the conversation seems particularly hard, talk to a doctor first for advice or reach out to a support group. Ellen Johnson wrote a particularly helpful post about how to talk to unreceptive friends or family for endometriosis.org. This list also provides resources for endometriosis organizations around the world – each one has suggestions and tips about coping, as well as resources for family and friends.

Not all of us can have our voices heard to the extent Lena Dunham can, but we can all be advocates for our own health with those around us. Endometriosis doesn’t discriminate between famous celebrities or “normal” people and the journey to cope with the condition is the same for everyone. But it’s not a journey that has to be done alone – let your voice be heard.

 

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