Worse than pain?
The shame

Unresponsive doctors and others who don’t understand add to the anguish endured by women with endometriosis.

March 2, 2017 Story and photos by EVE EDELHEIT
Times Staff Photographer

I couldn’t believe it was back.

I was in Jacksonville, about to photograph my first out-of-town college football game as the solo shooter, and there I was, crying on the floor of the media bathroom, clutching my abdomen. It felt as though a shadowed figure was stabbing me again and again. I gripped the toilet bowl to try to stand, but was frozen in pain.

I’d had surgery three years earlier to make that feeling stop. But endometriosis has a habit of coming back for more. It develops when the lining that’s supposed to be inside a woman’s uterus grows, instead, on the outside. That tissue thickens. It gets trapped in places it doesn’t belong, irritating organs, forming scar tissue and cysts. Mine had left little noncancerous tumors all over my uterus, bladder and ureter, making every menstrual cycle feel like I was passing a kidney stone.

I still don’t know how I made it onto the football field that Saturday in 2014, how I managed to waddle from end zone to end zone for four hours and turn in 42 photos. I did it to show I could, just like any of the men holding cameras. But it wasn’t just determination driving me; it was shame. I didn’t want to let on that there was a problem, because I was embarrassed by it.

You can’t talk about endometriosis without talking about your period. Hormones from that time of the month command the misplaced tissue to break down as if it were a normal uterine lining, except instead of breaking down, these cysts just stay where they are and inflict pain. The worst days found me in bed, unable to move.

I imagined finally having that conversation with my male boss and colleagues, talking about how menstrual cramps feel like birthing contractions, how peeing hurts so much, it makes me cry. I pictured a subtle look of disgust flash across their faces. Or the thought that I was a complainer, that I couldn’t handle what every other woman could, that maybe I couldn’t handle other things, like challenging assignments.

So I told them I was out with a cold.

I chose to live in pain for more than a year rather than schedule a surgery. I withdrew from my friends and fell into depression. My work suffered; it was hard to stay present, to be ambitious, when I was so distracted. I was lashing out at my fiance, who bore the burden of being my caretaker. Questions kept me awake: What would it mean to miss so much work? Could I continue on a career path I loved so dearly but was so physically demanding? Would I ever be able to get pregnant? Even if I had surgery, would the pain just come back again?

Endometriosis cast a cloud over my wedding and honeymoon, and that’s when I decided I couldn’t go on like this. I got the surgery last summer, and finally had that conversation with my boss that I had put off for so long. The only look on his face was concern. “You’ve been so stoic,” he said. “I wish you would have told me. I had no idea.”

So many people have no idea about this disorder that afflicts millions of women around the world. That’s why I set out to do this photo essay. I joined online support groups and found others with stories just like mine, who have suffered with perhaps the worst symptom of this disorder, loneliness.

I photographed nine women of different races and ages; endometriosis doesn’t discriminate. I traveled from Tallahassee to Miami trying to make them feel like their voices were heard, like they no longer needed to be ignored or afraid, but empowered to speak up.

In talking to them, I felt less alone.

•••

Erin Shell Modglin, 36, New Port Richey, unemployed

Her symptoms started at age 10, but she wasn’t diagnosed until she was 22. She has had 14 surgeries.

The person you were before endo is no longer there. They’re gone. You have to find your new self, your new normal and your new happy. … If you dwell on your life before endo, it will put you into a deep depression, because you can’t go back, you can’t be that person.

•••

Aleka Sapp, 39, Tallahassee, unemployed

She had symptoms when she got her first period, but she wasn’t diagnosed with endometriosis until she had a total hysterectomy.

I don’t want to have sex. It changed my whole view about sex. Everyone is like, “Sex feels so good, it’s great.” And I’m like, “But doesn’t it hurt?” When I was young, it was more pleasurable to have sex. But now I don’t want to go out on dates because I don’t want that responsibility of having to fulfill that sexual part of the relationship. Because you don’t want to feel that pain”

•••

Katie Gowan, 34, Brooksville, unemployed

She was diagnosed with endometriosis three years ago and has had a total hysterectomy.

Sometimes family is the hardest to deal with. They will say things like, “You looked fine yesterday.” Or, “This, too, shall pass.” I fear death every day.

•••

Stephanie Lebow, 23, Celebration, works at Disney World

She was diagnosed one year ago by her sixth doctor, and she has had three surgeries.

She found the endo. It was there. I wanted to cry. I was so happy. It’s an incredible feeling to have a doctor believe you and do something about it.”

•••

Rachael Pressley, 33, Tampa, social worker

Rachael Pressley was diagnosed with endometriosis in 2015 and has had two endo surgeries.

Each appointment, each month I would come back and say, “Hey I have this pain. Hey what you gave me isn’t working and I’m still in pain every day. I’m still crying when my period comes and my gremlin is scratching to get out.”

•••

Meg Connolly, 25, Miami, entrepreneur

She was diagnosed with Stage 4, or severe, endometriosis at 23.

I still have that scar in my mind of what I went through and I’m always afraid it’s going to come back. … One word to describe endometriosis and what it’s done to me? Hell.

•••

Bianca Semprit, 25, Hialeah, computer programmer

She was diagnosed with endometriosis in 2012 and has had one surgery.

If I could just run again. If I could just take off and I decide when I stop. There’s something that you take for granted. When you have one thing after the next against you, especially something that doesn’t go away, you just want to be able to say, “I’m okay right now.’” I want to be able to get to that point. I’m not there yet, but I’m really trying.

•••

Darcy Frick, 24, Holiday, works at Jimmy John’s

She was diagnosed with endometriosis 1 1/2 years ago. She has had one surgery.

I think it’s a really lonely disease. You spend a lot of time turning down plans. I felt like a terrible friend. I felt I was the one not being attentive enough to my other friends. I couldn’t. I would go to work all day and it would just suck the energy out of me. You have no energy when you are in that much pain.

•••

Mandy Miller, 34, Winter Haven, stay-at-home mother

She was diagnosed in 2009 and has had two surgeries.

I was going to school to become a teacher and work with children. Then all of a sudden I’m thinking I can’t be around other people’s children if I can’t have my own and that’s an everyday reminder of something we have no control over.

•••

About this story

For this project, I wanted to take a different approach than I normally do on my daily newspaper assignments. I wanted to slow down and challenge myself, so I opted to photograph the portraits on medium-format film on a friend’s Hasselblad film camera. Taking time to focus the camera and being more selective about why I was making each portrait allowed me to spend more time talking and connecting with the women. The photographs were taken where each of them experienced the most pain.

I relied heavily on social media throughout this project and shared it on multiple platforms under the hashtag #endosistersfl while working on it over the past six months. As I plan to continue this project, please reach out to me if you would like to be a part of the series or know someone who would.