These Photos Show What It’s Like To Live With Endometriosis
By Erika Smith
“I got sick when I was 13 years old, and I didn’t get better,” says Georgie Wileman, a 30-year-old photographer based in Brooklyn. “I struggled, but tried to live a normal life between ambulance trips and hospital stays. I was in and out of a wheelchair from pain and fatigue… yet I didn’t get a diagnosis until I reached 26.”
The diagnosis? Endometriosis, a condition in which tissue similar to uterine lining grows elsewhere in the body — usually on the outside of the uterus and nearby organs. During menstruation, this tissue acts like uterine lining does: thickening, breaking down, and bleeding. But, because it’s not actually in the uterus, it has no way to leave the body. As a result, endometriosis — which affects one in ten people with uteruses worldwide — can cause severe pelvic pain, especially during menstruation and during or after sex. It can also cause heavy periods, bleeding or spotting between periods, fatigue, digestive issues, and in some cases, difficulty conceiving.
Wileman’s thirteen-year wait for a diagnosis isn’t unusual. According to the Endometriosis Foundation of America, it takes an average of 10 years for a person to receive a diagnosis. People with endometriosis (sometimes shortened to endo) often say that when they sought help, their pain was dismissed as normal period cramps.
“Endometriosis is an incredibly isolating disease,” Wileman says of her decision to document her experience in 2017. The first photo she took was a with a self-portrait: she is curled up in pain on white sheets with her partner Asher’s feet in the frame. When she started the project, Wileman was in severe pain, so she focused on self-portraits. But she soon began photographing other people with endometriosis, documenting intimate moments of pain, fatigue, and frustration. The photos — both the self-portraits and the images of others — form a series called This is Endometriosis.
Wileman’s self-portrait, “2014–2017,” was displayed in London’s National Portrait Gallery in 2017. It shows her bare abdomen, black pen dating her scars and connecting them to form a five-sided shape. Now, in honour of Endometriosis Awareness Month, she is launching a social media campaign based on this image: with help of her assistants Sadie Sanders, Sayaka Ueno, and Martina Tuaty, Wileman has photographed other people’s endometriosis scars, and invites others to take their own photos as well. Search #ThisIsEndometriosis on Instagram and you’ll see hundreds of others sharing what Wileman describes as “constellations of scars.”
“Before meeting others, and seeing myself reflected, I felt that maybe I was alone in my symptoms,” Wileman says. “Years of misdiagnoses and disbelieving doctors had left me with a distrust in my body and what was happening to me. With every person I meet, we find our lives have crossed and merged, a story repeated with every subject. It has been an incredibly painful, but cathartic experience.”
“Abby In The Shower”: Abby Norman (@abbymnorman)
Abby Norman: Almost a year ago to the day, in fact, [Georgie] came to my hotel room while I was on my book tour in NYC. I was trying to get presentable for press [for my memoir about endometriosis Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain] but felt miserably sick. Travel is always difficult, and heat is my go-to pain management strategy. That was my second scalding hot shower since I’d checked in the night before.
What Georgie understood immediately, and what I feel she captured so well in those photos we took, was the understanding that I would never emerge from the shower feeling better. It didn’t matter how many I took; I only felt OK while I was in it. While I might have had a moment of being soothed physically, the emotional toll of being confined to the space, trapped and completely reliant on it, to not be able to see or talk to anyone, to be quite literally stripped naked and vulnerable, had become the truth of my life — and only I knew that truth. Allowing Georgie to witness that was powerful and ultimately empowering.
Untitled: Cori Smith (@cori5mith) and Deon Skye
Cori Smith (left): [This photo] was the hardest part of the shoot for me. Here I was being loved and supported — but you can see the distance in my eyes, of just how far I am from the man I love… just how deep inside my own head I am. No matter how many kisses on the back of my neck, nothing can shake the trauma felt, the worries always present. Whether you’re waiting for test results, or you’re waiting to be discharged… The waiting to feel better always lies beneath, among other feelings of hopelessness, loss, self worth.
“2014–2017,” Georgie Wileman (@georgiewileman), self-portrait
Georgie Wileman: I always knew I needed to photograph my own journey with this disease. A series like this hadn’t been made, and it was too important not to create it. In my own work, I always ask my subjects to be open, honest and vulnerable. If I can’t apply those qualities to myself, I shouldn’t ask it of the people I photograph.
A big part of why I do this work is to raise awareness of the multiple surgeries that are performed for endometriosis, many causing nothing but more damage and pain. The current best treatment is excision surgery with an endometriosis specialist. Without being told this in a support group chat room, I would still be on my back, covered in heat pads, semi conscious on pain medication. I need to pass this message on. Photography is what I can do, so it’s how I’ve done it.
I had originally intended for this work to mostly be of other people. I was recently wheelchair bound for a year due to endometriosis, and was unable to photograph anyone other than myself, with the help of my family and carers. When I was able to, I started focusing on people with loud voices in this sector, like actress and director Lena Dunham and author Abby Norman.
It was also very important to me that this series was inclusive and demonstrates that endometriosis is not just a white women’s disease. Endometriosis does not discriminate against race or gender identity, despite common opinion in the medical field.
“2014–2017”: Latia Lee (@fearlessly_defying_endo)
Latia Lee: I had just had surgery the day before, because [Georgie] came to visit me the following day. That was my third surgery in 22 months — it was a six hour surgery. In that picture, I was just tired and thinking, Please, let this be the last surgery.
It’s pretty much consumed me since 2017: Having three surgeries in less than 2 years is pretty heavy. And I was one of the patients that had lung collapses due to endo — I had two surgeries on my right lung where they removed endo from my diaphragm. That surgery was 2014, and in 2017, I had another surgery for my lung. That’s why I was so mentally drained and just praying that this was going to be the last one.
That was in December. I suffered some pretty bad nerve pain from it; when they took one of the big nodules, it had nerve fibres and tissues, so i’m dealing with that right now. But most of the endo symptoms I had before my surgery in December are gone, so I’m pretty thankful for that. The next step is I’m very fortunate that, despite having stage 4 endometriosis and so many excision surgeries, my uterus is in really good shape. So my next journey over the summer is to try to have a baby, and I’m pretty excited about that.
If I could have a word for anyone who has endometriosis, or thinks they have symptoms of endometriosis, I want to let them know that their symptoms are real. If your healthcare provider is dismissing you, seek another healthcare provider until you are heard and they’re listening and they want to help you. Don’t give up hope, keep the faith, and keep fighting.
“2009–2019,” Natalie Archer (@natalie__archer)
Natalie Archer: When this photo was taken, I was only a few weeks out from a major surgery. A month on, I am still overwhelmed by fear most days that the surgery will not be successful and I will continue to live in debilitating pain. I love how Georgie’s project brings visibility to a mostly invisible illness.
Use the hashtag #ThisIsEndometriosis to see more photos or to contribute your own.
Originally published at https://www.refinery29.com.
