Endometriosis is a rather mysterious condition that causes endometrial tissue (uterine lining) to grow outside of a woman’s uterus. These painful endometrial lesions respond to a woman’s hormonal cycles, growing and then shedding and then growing again. It’s surprisingly common, affecting around 10% of women worldwide. The symptoms can vary greatly in presentation and severity, but some of the most common are excruciating periods, heavy bleeding, irregular bleeding, pain between periods, pain with intercourse, and infertility. Some women experience mild discomfort, while others find themselves practically disabled from the condition, particularly during their periods.
Endometriosis is an invisible illness; it is not accompanied by any outward signs. To the passerby, a women suffering from endometriosis looks the same as any other. Usually the only evidence of her condition is her own description of her symptoms. As with any invisible illness, this can cause unspeakable frustration on top of the difficulties of managing the condition itself.
The first challenge is often a proper diagnosis. It takes an average of 7.4 years for a woman to get diagnosed, which is the essential first step in establishing any sort of treatment plan. She also may encounter a lack of empathy from family members, friends and coworkers when her condition interferes with her daily life. Missed work, canceled social engagements, and lack of participation in once beloved activities can be difficult for others to understand when the cause is invisible. There is no broken bone, no wheelchair, no outward wound to visually demonstrate a woman’s pain to others. And because endometriosis affects the reproductive system, there can be certain shyness over the intimate nature of the condition that can make it even more difficult for the woman to speak about it openly. For all of these reasons, invisible illnesses in general and endometriosis in particular can be an extremely isolating disorder to deal with.
So what can be done? If you suffer from endometriosis, how can you bring this invisible illness to light? And if you know someone with endometriosis, how can you support her and be an ally?
First, simply spread awareness. March is Endometriosis Awareness Month so it’s a great time to start! Have conversations, share articles, and ask questions. With such a common condition affecting so many, if you don’t have endometriosis you probably know someone who does. Don’t be afraid to ask a friend who suffers, “How are you feeling? How are you managing these days?” When someone has an invisible illness, they often bear it in isolation and silence. Having a compassionate, curious, listening ear can be incredibly encouraging.
If you have endometriosis yourself, speak out. Don’t be afraid to voice your needs and let people know just how deeply the condition is affecting you. You may be surprised at the support you receive.
Know what’s normal. Just because period pain and difficult menstrual symptoms are common doesn’t mean that they are normal. Periods should come fairly regularly, without too much difficulty other than some bloating and mild cramping. Do your research, start paying attention to our own cycles and periods, and ask yourself, is this healthy? There are many possible reasons for period problems, but if you think you might have symptoms of endometriosis, advocate for proper testing and diagnosis and don’t settle for less! Even if you don’t have endometriosis, it’s important to eliminate the possibility so you can focus on other possible causes for your symptoms.
And while it may be tempting cave in to your doctor’s suggestion of taking hormonal contraception for symptom control, I encourage you to resist, or at least pause. Masking the problem will only hinder your ability to investigate and hopefully treat the root cause. Don’t be afraid to get a second opinion, see holistic practitioners, and widen your circle of care.
You can work to be a part of breaking the taboo. As long as talking about menstruation considered off limits in polite conversation, barriers for women accessing proper support and treatment for conditions such as endometriosis will exist. The more women (and men!) can be comfortable discussing women’s health, the more likely it will be that we’ll create a culture where invisible illnesses in general and gynecological problems specifically are taken seriously.
And finally, believe women. If a woman says that her pain is interfering with her daily activities, believe her. If she’s losing hope after years of infertility, be there for her. If she asks for help, rise to the occasion. Advocate for her. Lend your voice to hers. If we unite in this effort, we can create a supportive community around endometriosis sufferers that will give them a safe space to speak, confidence to seek excellent treatment, and an environment in which they can thrive.
Endometriosis Foundation of America
Note: Please use caution if you are sensitive to pictures of babies who have been delivered too early. This post contains such photos. Three years ago, this May, I experienced a second trimester loss of my monoamniotic (MoMo) twin sons. Before this, simply contemplating that 1 in 4 pregnancies ends