Endometriosis, a condition in which endometrium (the tissue that lines the inside of the uterus) grows outside of the uterus, affects approximately 10 percent of American women between the ages of 15 and 44. The hallmark of this condition is pain, often debilitating, particularly during but not limited to one's period and/or sexual intercourse. It can also come along with heavy bleeding and fertility issues. And yet despite its prevalence and intensity, endometriosis is often overlooked by friends, family, and even doctors of sufferers. I spoke to women with endometriosis about how their pain was dismissed, and, people, we need to do better by each other.
Dismissing, ignoring, and just not understanding women's pain is nothing new. The so-called "research gap" between the medical needs of women and men is clear and yields real-life, dire consequences. For example, because our medical understanding of heart disease comes largely from research of men, doctors are seven times more likely to send a woman home in the middle of a heart attack simply because her symptoms present differently than what's considered "normal."
In short, healthcare is not built for women. This is to say nothing of the compounding factors of race, sexuality, and perceived socioeconomic status. But while this is not an issue we can solve overnight or on our own, we can take the first tiny step of believing those who are strong enough to share their vulnerability and struggle with us.
"I don’t even bother expressing my pain or discomfort anymore because people just don’t get it. I usually just take a ton of Advil and deal with it. If I do express the pain, women usually end up talking about themselves and their periods. I get it though: not many people are aware."
"I can barely remember a period that didn't knock me on my ass since my first period at 13. I still spend days curled into a fetal position and sobbing. My family all rolled their eyes and said this was just another example of what a drama queen I was. ... Since then I've had three surgeries to try to clear it out, and they understand but they don't really understand. I don't think you can get it unless you've experienced it for yourself."
"During high school I would usually miss school during the first three days of my period because of the pain. It’s so severe during those first few days that I am usually vomiting from the pain. I would take Midol or Pamprin and get no relief. ... My primary care doctor wrote me scripts for Vicodin, which helped tremendously. Once I finally found a gynecologist in my area ... they tried to urge me to get the shot that puts you into temporary menopause, but I didn’t feel comfortable with that.
She told me the pain wasn’t as bad as I was saying and that every woman has discomfort during their period and therefore she wouldn’t give me pain medication. She made me feel like an idiot and that I was just trying to get pain medication. ... My primary care doctor has taken over my pain management again and we are working on getting my medical marijuana card so I can be pain-free (legally). I still get narcotic pain medication and feel extremely judged by the pharmacists every month when I go fill it, but they don’t know what I’m dealing with each month so let them give me their dirty looks and just smile and say thank you."
"[My endometriosis is] the number one reason why I prefer/only see female doctors! Seriously, [I've heard] 'Well, obviously, it happens monthly. To half the population. You really need to toughen up/get over it' ... And I was young and believed what I was told. [I thought] I should stop 'complaining' and get over it"
"Everyone has doubted me. ... Even the people who really love me and want what's best for me. They think saying things like, 'Have you tried exercising?' or, 'Maybe if you lost weight?' or, 'I have an herbal supplement for that' is supporting me. ... I get it — they want to help and they don't understand just how horrible it is — but it's so frustrating. Anything they say to try to help just shows how much they don't understand and that makes me feel worse."
"I had to beg my doctor to do the surgery because he thought I just needed to 'toughen up.' ... When he opened me up and saw how covered my entire insides were, he didn't apologize, but he realized I wasn't faking it for attention. Then when I started to feel pain again within a year he dismissed me yet again. He didn't think it could have possibly come back as bad as I was saying it was. Another surgery showed that it did. ... I've switched doctors since then, and my new one is compassionate and kind."
"I’ve had it since I was 15. My mom let me miss school when I had my period because it hurt so bad, [but] the doctors never believed my pain. I searched for doctors to believe me as an adult. I finally had my first surgery at 22. I’m now 29 and have had eight surgeries to clear it out. It always comes back in less than six months.
It’s an invisible illness. Most doctors don’t even try to understand how bad it is. Mine didn’t until it started attacking other organs. It truly feels like thorns are wrapped around your lower stomach and back. The pain never goes away. Strong pain pills helped a lot, but that wasn’t a healthy solution. Thankfully I haven’t been bothered with it during pregnancy, but I'm dreading its comeback after baby. I had a surgery two months before I got pregnant and it was all in my back and tale bone. I’ve had my appendix and gallbladder removed. It has caused permanent bladder damage.
Thankfully I finally found a gynecologist to help me, but as far as doing something for my pain there was nothing he could do besides surgery. I had to go see a pain doctor which was horrible! Not only did they not believe in the severity of my pain, they didn’t believe how often it was. ... Almost all women think their periods are painful. My family just keeps telling me to get a hysterectomy, but that could bring new issues of its own. No one truly believes my severe pain besides my gynecologist, who has done every single surgery, or others who struggle with it as well. It seems as if you can’t see it,it’s not there."
"Women try to sympathize but they always try to talk about their period cramps and it's so much more than that. ... In my early 20s I had a boyfriend break up with me because sex was too painful to do as often as he wanted [and] he thought I was trying to "control" him by withholding sex and using a 'fake disease.' ... Two words: dodged bullet, but it's still painful to know that something that literally controls your life and makes you miserable is seen as made up."
"I only talk about endometriosis with other women who have it. There's no point in talking about it with anyone else."