12 Things Women With Endometriosis Wish Everyone Knew
It took far too many years and way too many doctor's visits for me to realize that I have endometriosis. My pain was downplayed; I was misdiagnosed; I was told to "suck it up" and I was told I had a slew of other potential problems before I realized that what was ailing me every month wasn't just a "bad period," but a very real, very debilitating, chronic disease. It didn't take me very long, however, to realize that there are so many things women with endometriosis wish everyone knew, because I am one of those women and I have been faced with some rather uncomfortable, rather frustrating conversations because people either don't know what endometriosis is, or don't care.
"Period talk," in this country is considered "inappropriate" or "uncomfortable'" or "gross," so we don't talk enough about what is ailing an estimated 176 million women worldwide, and 1 in 10 girls and women in the United States. Instead, women whisper about endometriosis with their close friends and loved ones and healthcare physicians, pushing through a horrific pain and remaining relatively silent because, sadly, we've all come to learn that a woman's health (especially a woman's reproductive health) isn't much of a priority in this country. As a woman with endometriosis, I have learned that my pain, no matter how severe, is rarely, if ever, taken seriously. So, instead of focusing my precious time and energy on attempting to convince those around me (sometimes even my loved ones and doctors) that my pain is legitimate, I simply deal with my symptoms as best as I can.
But that's not good enough, and no woman living with chronic pain should be forced to suffer in silence. As a society, we need to value women, their reproductive health, and their overall health, in general. So, with that in mind, here are just a few things women with endometriosis wish everyone knew. It's time to start a conversation. It's time to stop whispering.
What Endometriosis Actually Is
So many people in this country, honestly, have no idea what endometriosis is. This makes it pretty damn difficult for women who are suffering from endometriosis to adequately explain what exactly they're living with on a monthly (and sometimes daily) basis.
So, for those who don't know, endometriosis is what happens when tissue usually found inside a woman's uterus, is found in other parts of her body. Most commonly, this uterine tissue can be located in a woman's ovaries, bowel, fallopian tubes, the exterior of the uterus and other internal parts of the body. As a woman experiences hormonal changes during her menstrual cycle, the tissue breaks down into painful adhesions or scar tissue. Symptoms can include painful cramps (that can occur even when a woman isn't menstruating), nausea, vomiting, a heavy menstrual flow, periods that last longer than a week, painful sexual intercourse and infertility. Most women don't realize they have endometriosis until they try to conceive a child, and approximately 30-40 percent of women who have endometriosis experience issues with their fertility.
No One Knows What Causes Endometriosis
So many aspects of endometriosis are misunderstood, and require further research so that we can better understand endometriosis and, most importantly, how to treat and help the women who suffer from it. So, sadly, there is no known cause for endometriosis. What's important to know is the following:
- Endometriosis is not "contagious" and cannot be passed from one person to another through sexual activity (or any other kind of activity).
- There may be a genetic component to endometriosis, although it has yet to be isolated. However, women with a close female relative who has endometriosis are 5-7 times more likely to have endometriosis themselves.
- It's believe that the immune system and the body's inflammatory response system may contribute to endometriosis, although more research is needed to confirm this suspicion.
- Some research suggests endometriosis can be present in developing fetal tissue, and is activated by puberty, as autopsies performed on infants have shown evidence of endometriosis.
That Our Pain Is Real...
Our culture is cavalier at best when it comes to women's health, especially women's reproductive health. Unless certain government officials are attempting to control women's bodies, they don't seem all that concerned with caring for them.
I can't tell you how many doctor's offices I have sat in, begging a physician to take my menstrual pain seriously. I can't tell you how many romantic and/or sexual partners I have had to "convince," when it came to my pain and how real it was (especially when it hurt to have sex). I can't tell you how many people have told me I have a "low pain tolerance" when I need to take a day off school or work, because I can't walk during the first few days of my period. My pain was rarely, if ever, validated because I am a woman and it's a "woman's pain."
...And We're Not Making It Up For "Attention"
I've never understood the notion that a woman would simply make up or lie about having a horrific pain in order to "get attention." I mean, trust me when I say that the attention a woman gets when she openly speaks out about menstrual pain (or any pain, for that matter) is rarely if ever positive. We're called "babies" and we're called "weak" and we're ridiculed for not being "as strong as men."
The women who speak openly about endometriosis and how painful it is, are doing so because it's a necessity. They're doing so because our culture needs to start caring about women in a real, tangible way. They're doing so because far too many people have no idea what endometriosis is, and that ignorance is no doubt keeping women from seeking the treatment and the support they need. Instead, women are in pain, suffering in silence, because no one takes them seriously.
Sometimes, It Hurts To Simply Walk
For the first two or three days of my period (sometimes a few days prior to my period actually arriving) I can barely walk. In fact, I can barely move. Every step in any direction is painful, and it's extremely difficult to cope with that kind of pain without a steady regiment of narcotics.
That's the kind of pain we're talking about (for some) and it's deplorable at best that we, as a society, don't take women seriously when they say they're in pain. Endometriosis isn't just menstrual cramps (and, honestly, those are horrific, too) and so many of the symptoms of endometriosis can't be "managed" or "cured" by over-the-counter medicines. This is why additional research is so vital, so that healthcare providers can better understand endometriosis and figure out a more effective way to treat it.
It's Just As Important As Any Other Chronic Pain And/Or Illness
Perhaps it's because endometriosis is, for the most part, found on a woman's reproductive organs. Maybe it's because our culture gets all weird and certain people cringe when we talk openly about a woman's uterus or fallopian tubes. Maybe it's because sex and reproductive education in this country has been lacking for so damn long. Maybe it's just good old fashioned sexism.
Regardless, the pain a woman experiences at the hands of endometriosis is just as real, just as valid, and worthy of just as much attention as any other pain any other person could possibly experience on any other part of their body.
Not Every Woman With Endometriosis Wants Children...
While it is sad that endometriosis can cause infertility, that isn't the only reason why it's debilitating and why science needs to spend time better understanding it. A woman's worth is not determined by whether or not she wants to, can and/or does procreate, so simply saying, "We care about endometriosis because it causes infertility," is not enough. We need to care about endometriosis because it causes countless women pain. Period.
...But The Fact That Endometriosis Can Make It Difficult To Conceive Can Be Debilitating
However, I am one of those women currently experiencing fertility issues because of endometriosis. I am one of those women who got pregnant with twins, than lost a twin at 19 weeks and, while it can't be said for sure, endometriosis very well could have been the reason why. I am one of those women trying to get pregnant again, and have suffered a miscarriage. Again. I am one of those women who might need to invest thousands of dollars on IVF in an attempt to get pregnant, knowing that IVF (when you have endometriosis) only increases your chance of securing a healthy pregnancy by 9 or 10 percent.
Endometriosis Can Make Sex Extremely Painful
It's a symptom that's not often talked about, because sex isn't talked about enough. However, it needs to be. A woman shouldn't feel like she needs to put herself in physical pain in the name of intimacy, yet so many men in relationships (and men who aren't in relationships, actually) feel they are owed sex by their partner or the women in their lives. So many women feel like they need to put their physical comfort on the back burner in the name of sexual gratification or intimacy.
Consent is vital (and necessary) when having sex. Anything else, from coercion to sexual assault, is wrong on a number of disgusting levels. If we, as a society, were more open and honest and transparent about the number of women who feel pain when they have sex, perhaps more women would feel empowered to tell their partners that they don't "feel like" having sexual intercourse when their endometriosis symptoms are at their worst (or, you know, any time they just aren't up for it).
Telling Us To "Suck It Up" Doesn't Help. At All.
"Pop a Midol," isn't helpful and, "Man up," isn't helpful and, "Get over it," just isn't helpful. Again, and sadly it is worth repeating; just because a woman's pain is found in or near her reproductive organs, doesn't mean it isn't valid and real and worthy of treatment and someone else's empathy. We must, must, start valuing women and their bodies. We must start believing women, instead of downplaying their very real pain and asking them to "act like men," as if men don't experience pain (and complain about pain and cry because of pain and seek treatment to ease their pain), too.
We've Probably Had To Fight And Advocate For Our Pain To Be Taken Seriously
If a woman with endometriosis looks exhausted, her symptoms aren't the only reasons why. Chances are, she has had to fight for treatment. Chances are, she has had to convince someone that her pain is real. Chances are, she has learned how to advocate for herself on a daily basis, and that is as exhausting as it is frustrating.
There Is No Cure For Endometriosis
There's a pretty powerful myth constantly circulating the internet that claims pregnancy to be a cure of endometriosis. Nope. There is no known cure, so a woman who has endometriosis, for now, will have it the rest of her life.
It's More Common Than You Think, So It's Time You Start Caring About It
An estimated 5.5 million women in the United States have symptoms of endometriosis,and 176 million women suffer from endometriosis worldwide. Yet so many people have never even heard of it. It's time that we start caring about women's health, in any and all capacities. Educate and inform yourself, talk to other people about endometriosis and, most importantly, listen to women and believe women and trust women when they say they're in pain.