The Women Living With Endometriosis — & Fighting For Change
“It feels like there’s a little demon inside me that’s wringing my insides and trying to crawl out,” Jenny Oh, a Manhattan-based retail worker, says of her endometriosis pain. She’s not the only one to put it this way. Camellia Hartman, a musician living in Brooklyn, who also suffers from endometriosis, echoes, “I live in this sort of fear that the demon that chases me is going to finally catch up to me.”
Camellia Hartman, 23
"I got my period for the first time at age 13. A couple months later, I was having extremely violent reactions to it. My mom was like, 'Welcome to womanhood! This is what happens.' But I was experiencing extreme vomiting, and I’d never heard of any of my friends experiencing that, so I was suspicious early on. I sang in a choir at the time, and I’d have to leave because I was going to throw up. It was a major interruption in my life from the beginning."
"Every time I went to my paediatrician, I’d mention the pain and was told do yoga or go on birth control. But I knew something was wrong. I got comfortable talking about my period at a young age because I’d ask everyone, 'What is your experience? Why is mine different?' All my friends knew that if I had cramps, shortly after I’d be over a toilet — it became my routine.
"I have five-week cycles, basically. Sometimes they're 29 days, sometimes they're 37. I know it’s coming when I start to feel pain in my lower body — it feels like my hips and my legs are made of cement, or like that part of my body is rotting. That makes it a lot harder to move around, so I have fatigue, and often my immune system starts to weaken. I have two-week windows of PMS symptoms. When I get my 'cement hips,' it’s still usually another two weeks until I start menstruation.
"The mug with my name on it is emblematic of the safety and comfort I associate with home: the number one place I go when the pain strikes. And my Carnelian stone travels with me during times of endo-induced pain — it represents balance and vitality. Grabbing it in acute moments of cramping or anxiety helps ground me and reminds me that the moment will pass. Finally, I’ve been playing violin for almost twice as long as I’ve suffered from endometriosis, but they carry almost equivalent weight in my life. They share a body and a spirit, and both are so inextricably tied to my identity that it’s actually difficult to imagine life without either."
"It’s quite alarming how many people in my life have heard me talk about my experience and sort of acknowledged it but haven’t really validated it until reading the accounts of celebrities who have spoken out about it. And I don’t hold that against any of my friends at all. People always send me the articles as they come out, and when I see them, I start crying. It’s such a unique kind of pain, and I think it’s really important for people to feel a sense of community. I’m very lucky; I have two close friends who struggle with endometriosis, and we rely on each other so much — they’re my endo sisters."
"Probably the degree of pain that it can cause. There are women with intense periods that don’t have any conditions, and there are women who live with endo but don’t know until later in life because their symptoms are mild. I think for an outsider, it’s sort of hard to make sense of that spectrum. And it takes me saying, 'Yeah, I deliriously vomit over my toilet uncontrollably once a month,' for it to sort of sink in. Obviously that’s not information I want to be sharing, but I sort of figured out how to talk about it in a way that will make sense to other people.
"Teenagers are so, so fragile in every way — their brains are evolving along with their bodies in ways they don’t understand. To be told that you’re 'crazy' at a time when everything is confusing and new can have very real, toxic, long-term effects. To make someone question their own understanding of their body at such a young age when they’re most likely already questioning it, to tell them their pain isn’t real or isn’t valid...it just seems glaringly obvious why this should be a serious concern in conversations surrounding physical and mental health.
Jenny Oh, 37
"I’m one of those [endo sufferers] that thought what I was feeling was normal. I was diagnosed three years ago, at 34, though the pain began when I got my period at 13. Because it’s all inside, nothing is visible — even to me — so it’s very hard to explain the kind of pain that I experience.
"I was experiencing pain for four days straight. I thought it was indigestion or gas. After four days of complete, utter pain and trying everything over-the-counter to appease it, I had to rush into urgent care. And that’s when they advised me to see an Ob/Gyn, who told me I had a 9-millimetre cyst that was tilting my uterus backwards, compromising my bladder, and all this pain and heaviness was not normal."
"I tend to isolate myself when the pain comes. I think it’s really hard to show that side of pain to anybody and to show that kind of vulnerability. I rescued a senior dog, and he brings me a lot of comfort and gives me another focus. But it’s really my art that I use to channel all my pain and worries and anxieties. I call it 'human awareness,' or 'body awareness.' It’s mostly sketches, watercolour, acrylic paint, even collages. Any way for me to express myself and what I’ve been going through and to become more aware of my body. This whole experience has really empowered me, even though I’m still going through so many rough patches of it.
"I’ve met with this group in San Diego — they’re my endo sisters. I’ve also helped some of my coworkers notice the symptoms early on. I know I don’t want to be my disease, but I know that I have to be an advocate for it. That’s why I participate in focus groups and studies.
"We still don’t think about others. We don’t think about others suffering. I hope that kids are able to go to the nurses' offices in their schools and be able to freely express their pain and for nurses and teachers — because it’s such a sensitive, personal subject — to be more empathetic. This condition affects one in 10 women. And nobody sees it. I pray every day that there will be an award-winning film role showing someone with endo. This is a human issue, just as much as lupus or any autoimmune disease or prostate cancer."
Alice Odhiambo, 29
"My journey is interesting. I got my period when I was 13, and it was never normal. One month, I’d bleed for like a week straight; the next month I’d bleed for two weeks. It got to the point where I’d have my period for full two months. It was heavy bleeding, too. And then it would completely go away for a few months. I started suffering from anemia, and one of the side effects of that is fatigue. I was playing a lot of sports at the time and was always passing out. One time after I passed out and went to the hospital, they started looking into my period and diagnosed me with endometriosis. By the time they realised that, I was 16. But I didn’t start having the major symptoms until 10 years later, at 26."
"The best way to describe it is it felt like there was a battle happening inside of me. It felt like getting stabbed from the inside with a blunt object. And it was constant. Even today, when I get the pain, it’s almost impossible to sit up — I have to curl myself into a ball and rock myself until pain medicine kicks in. You don’t have any warning that it’s going to come. In my case, every month is different. Sometimes I get the symptoms before my period, sometimes it’s when my period arrives, other times it’s after my period. Occasionally it’s all three. There are times when for a full month I’m just living in constant pain. It’s like living in a world of the unknown, and it’s mentally taxing, because you don’t really know how to prepare."
"Tea helps me a lot, as do heating pads. There’s also a couple of mugs that I have in my office and home that I use all the time, and all of them have some form of scripture on them. That really helps, because scripture is something that has gotten me through a lot of things. And talking to my mom — even though she’s all the way in Kenya."
"It doesn’t matter how strong you think you are, sometimes the pain will knock you off your feet. And as much as I want to be an independent, strong woman, when I do have an episode, I can’t always be that. I rely on friends, some coworkers, and my faith. I’m all about being empowered, but I think on top of empowerment you still sometimes need support. Even if it’s someone saying 'I’ll bring you a tea' — when you can’t move, that means so much."
"My favourite bible verse is Philippians 4:13, which says, 'I can do all things through Christ, who strengthens me.' So when I do have an episode, it’s like, Okay, [endo] is something that I have, but it’s not me. Me having endometriosis is like me being a woman from Kenya or me having long hair — it does not define who I am. I refuse to let it be my crutch, and I will do everything I possibly can to get past it."
"Most people don’t know how bad the pain can be, how crippling it makes you feel, and that when that pain kicks in, it really feels like you cannot do anything. I wish [those of us with endo] didn’t have to use sick days and were just granted the opportunity to work at home [when we’re in pain]. You find ways to get your work done; even if I can’t sit up, I can still lie on my bed and work. I shouldn’t be penalised for that. Because if you’re using your sick days for the flu, and you still have endo, what happens?