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."

Despite affecting one in 10 people worldwide, endometriosis is an oft-misunderstood condition that’s only recently been brought into the public sphere thanks to celebrities like Lena Dunham, Amy Schumer and Padma Lakshmi, who have opened up about their own personal suffering.

The condition occurs when tissue that normally lines the inside of the uterus grows on the outside instead. Said tissue acts as it normally would (breaking down and bleeding during every menstrual cycle), but it has no way to leave the body. This can cause severe pelvic pain (normally during one’s period but also during intercourse and ovulation), as well as a myriad of other symptoms like nausea, vomiting, and fatigue. For some, endometriosis can lead to difficulty with pregnancy. But the pain also operates on a spectrum — some people who have endometriosis feel very little pain and may not even know they have it.

Because it can be hard to diagnose, many endometriosis sufferers are frequently misdiagnosed or have their symptoms dismissed — even by medical professionals.

What’s spoken about even less is the fact that many women with endometriosis have chosen to fight back against the pain (and the doubt cast upon them) by empowering other women who suffer from the condition — many referring to fellow sufferers as their "endo sisters."

To find out more about what living with endometriosis really looks like, Refinery29 sat down with three women who have the condition, each of whom sees herself as an advocate for change when it comes to the way we speak about and understand endometriosis. In addition to opening up about their individual struggles, all three women showed us the unique objects that bring them a sense of comfort and empowerment.

Can you talk me through your history with endometriosis?
"I got my period for the first time at age 13. A couple of 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."

When did you decide to go to a doctor?
"Every time I went to my paediatrician, I’d mention the pain and was told to 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.

"One day, when I was 19, I went into a sort of delirium from the vomiting and nausea. At that point, I decided to do my own research. I read an article about conditions that cause painful periods, and PCOS [polycystic ovary syndrome] and endometriosis were listed; I sort of self-diagnosed my endo. After that, I went to my first gyno appointment and told her I thought I had it. She said, 'I have other patients who suffer much more than you do — I don’t think you have endometriosis,' without examining me or asking anything about what I had gone through. It was incredibly demoralising and infuriating — especially after years of people telling me I was being overdramatic.

"After an extreme episode that led me to the ER, I made an appointment to see the lead endometriosis specialist in NYC. At that point, I finally felt like I was talking to someone who was listening to me. Technically you can’t make an official diagnosis until the tissue is cut out, but after one examination, he said, 'I’m 99% sure you have endometriosis.'"

What does the pain feel like? Is it different every time?
"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.

"I get hot flashes, too, and the next phase is usually vomiting. When I start feeling queasy and hot, I try to go home as soon as possible. Since I’ve become so comfortable talking about endometriosis, there are very few people in my life that will question that.

"Several times in my late teens, before I knew what was going on, I really thought I was dying. And two of the times I’ve been hospitalised for it I really felt that way. That’s a really crazy thing to experience at a young age — the total loss of control of your body in a consistent way. Your whole life is on hold; it’s a cycle that really controls your life. I’m lucky as a musician and freelancer that I can create my own schedule most of the time. But I made those decisions in my career path because I knew that I have this thing attached to me and probably always will."

What items bring you a sense of comfort or in some way serve as a representation of your endo?
"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."

Do you think the growing discussion about endo — largely fueled by people in the public eye who are opening up about their own personal experiences — is going to bring some much-needed awareness to the condition?
"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."

What are some key things most people still don’t realize about endometriosis?
"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.

"I feel like it’s partially my duty to help empower other women. I hope that my openness and comfort level with speaking about this will help other people get to that point themselves. Until I have a platform to do that on a larger scale, I do what I can in my immediate community."

What do you think is the overarching danger in dismissing young people’s pain or telling them they’re being "dramatic"?
"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.

"My adopted mantra is, 'Nobody knows your body better than yourself.' I always knew something was wrong inside of me. I never let go of that truth. My experience has made me a much more empathetic person in general. Endometriosis is known as an 'invisible illness,' and the invisibility of my own pain has helped me to see the pain in others."

What does endometriosis pain feel like for you?
"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.

"Sometimes the pain gets so severe I get brain fog, and I can’t speak so articulately. I’ve also fainted. I have a lot of anxiety because of the pain. It comes in waves, so sometimes I feel it coming and I know I’m screwed because I didn’t take any pain medication in advance. I usually go home at that point, or sometimes at work they’ll let me lie down under the desk. I had to change my career to something that I know I can manage without so much pain and stress."

When you first started feeling this, what made you decide to go to the doctor and figure out what it was?
"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."

How do you allow yourself to feel comforted when you have severe pain?
"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 try to keep a positive outlook, because that’s the person that everybody remembers me as and not this worrisome, pain-induced girl. I haven’t cut my hair since my diagnosis, and the thing is, I look fine on the outside; I get stopped by people that say, 'Your style is so cool,' but seriously, I’m faking it ‘til I can become it."

Do you meet with other women that have endometriosis?
"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.

"I don’t care if other people say, 'You talk so much about this on your social media, your artwork is so depressing.' Because this is the way that I’m telling my story. If you don’t want to hear it, you can unfollow me. It’s not that big of a deal. I will always and forever be a voice for all the people that suffer from endo."

What do you hope the future looks like for people who suffer from endometriosis?
"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."

When were you diagnosed with endometriosis?
"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."

What did that pain feel like, when it came 10 years later?
"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."

What brings you comfort when you’re in pain?
"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."

What have you learned about yourself in the process of dealing with endometriosis?
"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."

Do you have any personal methods of staying empowered and not letting endo define you?
"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."

Are there things people still don’t realise — or understand — about endo?
"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?

"I also don’t want any of my employers to ever look at me and say, 'That’s the girl that has endometriosis.' I just want more people to know about this and be open to having a conversation about it. I bet there’s a lot of people who will read this and wonder how many of their family members or friends are silently suffering from this, because it’s not spoken about. And there’s so many women that probably have endometriosis and haven’t been diagnosed, too."