Breaking the silence about endometriosis
March 29, 2018
March is Endometriosis Awareness Month, a welcome opportunity to shine a light on an under-reported, under-discussed condition that affects 1 in 10 women – an estimated 176 million women worldwide. Called a “Silent Epidemic,” endometriosis often presents as pain accompanying periods, chronic pelvic pain, or pain during sex. The condition occurs when endometrial tissue, which normally forms the inner lining of the uterus, grows in other places in the body, most commonly in the pelvis, on ovaries, fallopian tubes, bowel, and bladder but also sometimes in the lungs, nose, and almost every other organ.
An elusive condition
Endometriosis is a tricky disease that can be challenging to diagnose and, at times, even more challenging to treat. For many, it can take up to 10 years to receive the correct diagnosis of endometriosis. For patients, this long delay often means seeing countless specialists, being subjected to multiple tests and studies, going through failed therapies, and enduring years of unnecessary distress and suffering. It also means that, meanwhile, we’re allowing the condition to progress over this time, and this can lead to infertility or dysfunction of organs such as the bowel and bladder.
The main reasons endometriosis can be a challenge to diagnose is because symptoms can vary from woman to woman and can change over time. For some women, pain is terrible with periods; for others, the pain is constant and unrelated to menses. The quality of the pain can vary, too, ranging from crampy midline pain to sharp and shooting pain on one side. For some, the pain happens during sex; for others, it accompanies bowel movements.
Unfortunately, we don’t have great diagnostic tools for endometriosis – there isn’t a specific blood test or an imaging study that can confirm the condition – so it’s difficult to pinpoint. Even more unfortunate, is that endometriosis too often is not top of mind for physicians, including pediatricians, ER doctors, and the general adult primary care providers who might be the first and only people who patients speak with about their issues. Also too often: women and girls don’t talk about it, or learn not to bring it up.
Speak up, be heard
I frequently meet women who were told that painful periods are just a normal part of being a woman. There tends to be a “suck it up” mentality in which girls and teens are advised at an early age to put on baggy sweatpants, grab a heating pad, take some Pamprin, and wait out the pain. The (incorrect) message is, “Pain is normal, so stop talking about it.” As women get older, they become accustomed to minimizing their experience. Padma Lakshmi, host of TV’s “Top Chef,” says, "I think . . . I hid it to a certain degree – not intentionally but, you know, it’s weird to talk about your period all the time. It’s like the least sexy thing in the world to do.” So women decide to downplay their pain and their symptoms, leading others to do so as well.
The point I want to make is that it is not normal to have to miss activities such as work, school, sports, or social outings because of pelvic pain – or for it to interfere in women’s lives at all. I encourage women and girls to speak up, be heard, and seek care from someone who will listen. Only then can we start making the right diagnosis and start treating the condition. Unvalidated and unrecognized pain in general can lead to a whole host of other conditions, including depression; in the case of endometriosis, it can also lead to infertility or abnormal functioning of the bowels, bladder, and other distant organs.
Think about 10 women you know, love, or work with. 1 of them is probably suffering from endometriosis. Encourage them to talk about their experiences and seek care with specialists trained to take care of endometriosis. We need to break the silence about this epidemic.