LOWER SAUCON TWP., Pa. — Danielle Meyers sipped an iced coffee in a corner booth, enjoying the calm she fears may not last.
She wore a smile on her face — and her frustrations and hope in a message on a hooded sweatshirt she designed.
For now, Myers, 22, an Emmaus High School graduate, goes about her day — working part-time, enjoying being with her two cats and boyfriend, loving her dad and grandparents, playing video games at her Quakertown home, meeting with friends — as though the world will forever embrace her with loving arms.
“You just never know if and when it may come back. It’s frustrating.”Danielle Meyers
But beneath the happy exterior, worry lingers: When might endometriosis return?
“Everything is OK right now, except for heart palpitations and occasional chest pain,” Meyers said this week. “You just never know if and when it may come back. It’s frustrating.”
Here, during Endometriosis Awareness Month, Meyers shared the story of her seven-year battle with the incurable, debilitating, underfunded condition that necessitated a three-hour surgery in September to relieve her pain.
'How long you can deal with the pain'
Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside the uterine cavity.
The ectopic tissue can implant in various areas of the body, including the ovaries, fallopian tubes, pelvic peritoneum and even the lungs.
The condition can cause excruciating pain throughout the body, infertility, nausea, swelling, menstrual bleeding, fatigue and depression — all of which Meyers said she has experienced.
“Sometimes, the pain was so bad I’d ask myself how much longer I can take it. I would never take my own life, but you wonder how long you can deal with the pain.”Danielle Meyers
“Before the surgery, I couldn’t work out because it hurt so bad,” she said. “I couldn’t go out to eat, couldn’t hang out with friends. Last summer, I couldn’t even leave home, I was so sick.
“When it first started, when I was 16, the pain felt like razor blades on my back and stomach. I’d wake up crying at 3 in the morning from the pain.
“Sometimes, the pain was so bad I’d ask myself how much longer I can take it. I would never take my own life, but you wonder how long you can deal with the pain.”
'They said it was normal'
Meyers suffers from three types of endometriosis:
- Deep Infiltrating — which affects multiple organs, creates deep lesions and forms cysts.
- Thoracic — which causes lesions on the diaphragm.
- Pericardial — in which endometrial tissue grows on the pericardium, the outer layer of the heart.
From those early symptoms as a mid-teen until the proper diagnosis last year, Meyers suffered through misdiagnoses from a variety of medical providers.
One said she had irritable bowel syndrome, while another told her the pain was caused by painful menstrual cycles.
“The doctors came in the room and said, ‘The good news is you don’t have cancer. You have endometriosis.' I didn’t know what that was.”Danielle Meyers
Meyers said she always believed it was something more — something more serious.
“The doctor who told me it was from my period put me on birth control,” she said. “But endometriosis feeds off estrogen, which birth control contains.
“I was at work one day and left crying because I had so much pain in my left ovary. I went to the ER and they found a 5.2-centimeter cyst.
"They said it was normal and would go away. I followed up with an obstetrician who also said it was normal.”
Two months passed, but the pain persisted. A subsequent ultrasound was performed at Lehigh Valley Health Network Cedar Crest campus.
“The doctors came in the room and said, ‘The good news is you don’t have cancer. You have endometriosis,’” Meyers said. “I didn’t know what that was.”
'Too young to be dealing with this'
She said doctors suggested removing her whole ovary and fallopian tubes.
“I didn’t want to do that at that point,” Meyers said.
“My dad found an expert in New York at the Endometriosis Foundation of America. They did another ultrasound and found another cyst growing on my left ovary.”
Surgery was performed in September to remove both cysts from her ovary, as well as remove endometriosis tissue from 27 places including her back, diaphragm, bladder and completely removed her appendix.
“So many times before the surgery, I would ask why, at only 21 years old, should I have to worry about endometriosis on my heart. I wondered why I should have to worry about maybe becoming infertile, having no kids someday."Danielle Meyers
“They also found it on my pericardium, but didn’t remove that because they didn’t have a cardiologist available,” Meyers said.
“After three hours of surgery and no cardiologist available, it was too risky, that I might not make it out of surgery.
“My ovaries function just fine. But I have that trait; my ovaries will keep growing massive cysts. My mother has endometriosis too.”
As she spoke, Meyers blinked her blue eyes, looked away and shook her head.
“So many times before the surgery, I would ask why, at only 21 years old, should I have to worry about endometriosis on my heart,” she said.
“I wondered why I should have to worry about maybe becoming infertile, having no kids someday. I love children so much. I might lose my eggs. I’m too young to be dealing with this.”
'Get checked early'
According to the World Health Organization, an estimated 10% of women worldwide, or 190 million, have been diagnosed with endometriosis.
Despite the high incidence of the condition, funding to battle it is sorely lacking, experts say.
The NIH allocates nearly $48 billion annually to the study of various diseases and conditions.
The total U.S. funding for endometriosis is $16 million, which translates to just $2 per patient per year.
The message on Meyers’ sweatshirt? Endo Sucks. Fund Research.
“That’s why it is so important for awareness months like this, to let women know what to look out for and to get checked early."Danielle Meyers
“That’s why it is so important for awareness months like this, to let women know what to look out for and to get checked early,” she said.
“My doctor said I was lucky I had the surgery so young. If I had it later, it could have gone to my kidneys or caused a collapsed lung.”
Meyers emphasized the importance of becoming a member of an online support site to help navigate dealing with the condition.
Come June, Meyers said, she will revisit her doctors for an examination. Her fingers are crossed.
Endometriosis is a burglar — jiggling door knobs, trying to pry open locked windows, daytime, nighttime, all the time, looking for a way back in.
Danielle Meyers, fingers crossed, is looking to keep it locked out.
One hopeful coffee sip at a time.
For more information on Endometriosis, visit the Endometriosis Foundation of America website.
