It took far too long for someone to take my pain seriously and, in the end, diagnose me with endometriosis. Prior to that day of absolute relief, I spent my time trying to convince doctors and nurses that the pain I felt when I had my period wasn't, in fact, "normal." I spent time trying to convince boyfriends that I wasn't "faking it." I spent time, essentially, working my way through the struggles women with endometriosis know all too well, trying to live with a debilitating pain that so many people don't even consider "real."
There's a severe lack of general, social knowledge when it comes to women's reproductive health, or even health in general. That's easily the main reason why so many people don't know what endometriosis is, or have never even heard of it until they meet someone who suffers from it. Endometriosis is when the tissue that lines the inside of your uterus starts growing on the outside your uterus. That same tissue can also, in some cases, end up in a woman's fallopian tubes, ovaries, bladder, vagina, and even the rectum, intestines and appendix. The pain is extraordinarily horrific, in a way that can make it difficult to describe, let alone live with. In my many attempts to prove to someone (hell, anyone) that the pain I was experiencing was, in fact, real, I have settled on describing it as a screwdriver swirling your lower abdomen, stomach and back all together into a mess of hot, singing pain that makes you nauseas. It doesn't even begin to cover it, but it's the best I've yet to come up with.
There's no cure for endometriosis, although there are treatments available (ranging from pain management to major surgery) that can, at times, give women relief. For most living with endometriosis, however, there's a monthly (if not daily) struggle that people without endometriosis just can't understand. Sharing that experience helps, though. It helps you find solidarity with other women who know what it's like to live with endometriosis. It helps people understand what you're going through, even if they can't entirely. It helps you realize that you're not, in fact, alone. So, with that in mind, here are 13 struggles women living with endometriosis know all too well:
When No One Believes You're In That Much Pain...
This is, without a doubt, one of the hardest parts of being diagnosed with endometriosis. So many people, in my life at least, don't seem to believe that the pain that accompanies my period is at all real. It's so much more than just a cramp. It's debilitating. It's so much more than just inconvenient. It's life-altering. Knowing that, and living with that pain, only to have someone tell me that I'm "faking it" or that I don't have an adequate tolerance for pain or that I'm simply "seeking attention," is not only enraging and wrong, it's heartbreaking.
...And You Spend Your Time Trying To Prove That Your Pain Is, In Fact, Real
I've stopped trying to convince people that the pain of endometriosis, or endometriosis in general, is real. However, for far too long, I was emphatically trying to convince people my pain was real, in order to validate it. I would try to describe the pain to past lovers and even went so far as to invite a former-boyfriend to a doctor's appointment, so my need for pain medication and time on the couch and sleeping or hot showers was finally, for him, understandable. I look back and shake my head, almost embarrassed that I felt like I needed people to believe me. My pain is real. Endometriosis is very real. In fact, 1 in 10 women, approximately 170 million women, are affected by endometriosis. Just because there's a gross lack of general awareness about women's health, and primarily reproductive health, doesn't mean that people are entitled to tell you that your pain, your experience, isn't real.
When Even Standing, Let Alone Walking, Is Painful
When my period arrives, I can't move. I mean, I can, but it is extremely painful. If I am to walk anywhere, I have to do it hunched over. If I am to sit, it might as well turn into me laying down in the fetal position. Every step hurts; every position I sit or stand or lay in, hurts; everything I do, just hurts.
When You Dread Going To The Bathroom, Because It Hurts
Because endometriosis is essentially endometrium layers ending up in places outside of the uterus, and one of those places can be in and around the bowel, going to the bathroom can hurt. I mean, really hurt. I loath going to the bathroom when my period comes around (and even before and afterwards), to the point that I don't necessarily want to eat or drink.
When "Normal" Menstrual Cramp Remedies Don't Work
I can't tell you how many times I have had someone tell me, "Just take some over-the-counter pain medicine" or, "Just use a heat pad," as if these aren't common options I have already tried a thousand times. I've been prescribed pain medication from a doctor for my endometriosis, the pain is that severe, so, no, Ibuprofen isn't going to cut it. I can spend a significant amount of time in the fetal position in the shower, but the hot water only does so much. For the most part, sadly, I just have to "ride it out," and suffer and wait for the "storm" to pass and that's, you know, not fun.
When You Spend All Day Feeling Nauseous And/Or Actually Vomiting
I didn't think anything would be worse than a few of my horrific college hangovers, but I was wrong. Every time I get my period, I feel like I have downed a few too many shots of tequila without any of the fun associated with such a careless act (oh god, tequila. Just, no.). I can't eat and, when I do, I throw up. I exist in a constant state of nausea, never too far from a bathroom for fear that I'll need to stick my head in a toilet just to feel an ounce of relief. The only other time I have felt that miserable was when I was experiencing morning sickness and, well, that was easier to tolerate, considering I knew (eventually) that it would end.
When You're Trying To Get Pregnant...
Around 25 percent of women with endometriosis have fertility problems. In college, I was told that I, in all likelihood, wasn't going to be able to have children. I didn't think much of it (although it was odd and surprisingly hurtful to have that choice taken away from me) because, at the time, I didn't want children and never wanted to be a mother. I did, eventually, get pregnant (with twins!) and I was thrilled, but that pregnancy was very difficult and one of our twin sons died at 19 weeks.
Of course, not every woman wants to get pregnant but, for the ones who do make that life choice, getting pregnant and carrying a pregnancy to term, when you have endometriosis, can be very difficult. Women who choose to (and can afford to) undergo rounds of IVF are only offered an additional 9 to 10 percent chance of getting pregnant, per treatment cycle. Women with endometriosis have a 2 percent chance of getting pregnant without any assistance at all.
...And When You Find Yourself Afraid To Get Pregnant
I'm currently trying to get pregnant again, and it's been a difficult road. Every time my period comes, I'm more and more afraid that another child just isn't in the cards. However, my fear of never getting pregnant again is trumped by my fear of actually getting pregnant. I'm afraid my pregnancy is going to be dangerous; I'm afraid I'm going to lose the pregnancy; I'm afraid something horribly wrong will happen because, well, it's happened before. I'm just not sure I can handle it for a second time.
When You Hurt So Much You Can't Work, And Coworkers Or Bosses Don't Understand
I've had to call into school and, later, work, because I just couldn't bring myself to walk from my bedroom to my bathroom, let alone commute to school or work. In high school, my mother would have to call the administration and let the powers that be know I was sick, so I didn't have to deal with any intrusive questions. However, when I was working for two men at a real estate company, trying to explain that for a few days, every month, I wouldn't be able to come into the office was, well, awkward. They didn't get it and they didn't believe me and I was made to feel like an unreliable employee.
When You Don't Have Any Energy
One of the common side effects of endometriosis is fatigue, which really doesn't even do that overwhelming zombie-like feeling any sort of justice. I don't feel like myself when I get my period. I feel like a shell of a human being, like not only has my energy has left my body, but my personality and the things that make me, well, me, are long gone. I don't have the energy to laugh when I'd normally laugh or even smile when something is particularly funny. I try to summon enough energy to continue with my day but, for at least the first three or four days of my period, I feel completely useless.
When You Get Another, Yes, Another, Ovarian Cyst
Another common side effect of endometriosis is frequent ovarian cysts. Normally, these particular blood-filled growths are called ovarian endometrioma or an endometrial cysts, and can vary in size (anywhere from 1 mm to more than 8 cm across). I am constantly, consistently, annoyingly and painfully developing ovarian cysts, which usually lands me in the hospital with some great pain medication and an ultrasound to see if surgery is necessary. For the most part, in my case, I just have to wait for the cyst t to burst (also extremely painful) but, always, I'm afraid of the day a doctor has to tell me that the cyst is too big, and I'll need surgery to remove it.
When It Hurts To Have Sex
It's very common for women with endometriosis to experience intense pain when they have sexual intercourse. Unfortunately, that pain can translate to some emotional and mental pain, too. As a sexual assault survivor, it has been extremely difficult for me to separate the pain I feel when I have sex because of endometriosis, and the pain I suffered when I was sexually assaulted. Counseling, constant communication with my partner, and more counseling have helped me, but I can't say it's not a constant struggle.
When You Start To Resent Your Body
I don't want to resent my body, I want to love my body. Hell, my body has done some absolutely miraculous things (play basketball, stretch to great lengths to carry and birth another human being, sit around and watch The Office, carry myself to amazing placed=s and hold my brain so it can learn amazing things) but it's difficult for me to not, at times, hate my body, too. Endometriosis makes me feel like my body hates the person inside of it; like my body wants to hurt me; like my body is faulty and not to be trusted. It's hard to feel at war with the skin and bones and flesh that allow you to experience the world, even if, sometimes, that experience is painful.