Don’t know what endometriosis is? A new Houston nonprofit wants to fix that.
Doctors told Alison Landolt that getting pregnant might solve her endometriosis. Or maybe menopause would solve it. Or even a hysterectomy.
They prescribed her continuous birth control. But when that stopped working, they shot her up with Depo-Provera, the brand name for depot medroxyprogesterone acetate, a hormonal medication that contains progestin and is supposed to prevent ovulation.
When that didn’t stop the unbearable pain she felt in her pelvic region, doctors recommended she go on Lupron, a hormone suppressant that stimulates estrogen production but can cause brittle bones and osteoporosis. Landolt said no, but she was growing increasingly desperate.
“One day, I woke up, and I was not functional anymore. I had to leave my career behind and move back home and live with my parents because I was so debilitated,” Landolt, a former psychotherapist, said. “There were days I couldn’t get out of bed. I would be out grocery shopping and stop in the middle of the store, doubled over in pain. I had no energy to function because this is a battle that really takes a toll on you.”
Though the definition is debated by medical professionals and patients who suffer from it, the Mayo Clinic defines endometriosis is a disorder in which tissue that would normally line the uterus grows outside it. The tissue can be found on the ovaries, fallopian tubes or the intestines.
Landolt said this definition is incorrect and defines endometriosis as “similar to the lining of the uterus, but distinctly different tissue.”
“The distinction has significant implications for treatment. The disease can be found anywhere in the body, not just in the pelvis,” Landolt said viaemail.
Endometriosis has no visible symptoms — just an unbearable pain that is usually diagnosed as “just a bad period.”
“A lot of us get called lazy because it’s an invisible disease, but it causes chronic fatigue. It interferes with our lives in every capacity from sex and intimacy to jobs and our social lives,” Landolt said. “People aren’t OK with talking about it, which contributes to the isolation. When you feel as bad as you do, that also contributes to the isolation.”
Earlier this year, Landolt’s organization, Endometriosis Foundation of Houston, received 501(c) (3) nonprofit status. Its mission is to raise awareness of the disease in Greater Houston and dispel the myths, rumors and mysteries that surround it.
“What we really need to improve is informed consent. Women need to know what their options are, what the disease is, what you can do about it and what is likely to help,” she said. “All of the (foundation’s) knowledge comes based on our interactions with experts and doctors in the community.”
Endometriosis occurs in 6 to 10 percent of women of reproduction age, said Dr. Yesenia Blancas, an OB-GYN affiliated with Memorial Hermann Memorial City Medical Center. It affects 38 percent of women who are unable to have children and 71-87 percent of women who have pelvic pain.
Blancas, an assistant professor at McGovern Medical School at UT Health, said it’s a difficult disease to diagnose because of its variety of symptoms and organs that can be affected.
“Some women may consider it normal to have pelvic pain and will not see their doctor in regard to this until symptoms become severe,” Blancas said via email. “There are several other conditions that may present with similar symptoms …”
Endometriosis could be misdiagnosed as pelvic inflammatory disease, irritable bowel syndrome, painful bladder syndrome or ovarian cysts. “Even when there is a high suspicion for endometriosis, it is not a confirmed diagnosis until tissue is obtained confirming it, and that requires surgery,” Blancas said.
There’s no cure for the disorder — yet. However, there are a number of hormone treatments, two types of surgeries and possible changes in diet that could help those who suffer from it. For many women, hormone suppressants and pain medication are temporary fixes to a lifelong problem.
Two surgeries associated with the treatment of endometriosis are ablation and excision. Both procedures are typically put off until all medicinal possibilities have been exhausted.
Endometrial ablation surgically removes the lining of the uterus (endometrium), usually by burning it, according to the Mayo Clinic. The goal of the surgery is to reduce menstrual blood flow. The Center for Endometriosis Care details laparoscopic excision as a procedure to cut out diseased tissue from all affected areas without damaging surrounding structures.
Excision can be challenging for surgeons because lesions can be found near major blood vessels, ureters, the bladder and bowel, Blancas said.
“Women with endometriosis who require surgery often need repeat surgery 20 to 50 percent of the time,” Blancas said. “Using excisional or ablative procedure does not permanently remove endometriosis, and thus it is important that medications are used after such procedures in order to help prevent further development of endometriosis.”
Landolt, who has undergone excision surgery, said that excision performed by an expert can permanently remove endometriosis lesions and said that ablation and endometrial ablation are ineffective.
Samantha Bowick, author of “Living With Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options,” underwent six surgeries before she turned 28.
Her first was an ablation when she was in her early 20s; she then underwent a complete hysterectomy (removal of uterus, ovaries and cervix) by age 23 and an appendix removal soon after. A sixth surgery removed her gallbladder.
It wasn’t until her fifth surgery that she saw an excision specialist, Dr. Ken Sinervo. He is the medical director for the Center for Endometriosis Care. She said she has finally experienced a life with no pain since the surgery.
Bowick wrote the book to help girls and women like herself who enter a void of misinformation and mystery when they get their diagnosis. She had trouble finding a publisher, she said, because endometriosis “is a women’s disease, and people don’t want to talk about it for that reason.”
“I definitely want people to know they’re not alone, even though it feels like they’re alone,” Bowick said. “Maybe you don’t know people personally that have endo, but there are people out there. Finding support has been essential to me in getting information about different treatments available to make informed decisions on treatments.”
Knowing when pain isn’t normal is key when deciding to go to a doctor, Blancas said.
“I would encourage women to be their own advocate. Don’t write off pain as ‘normal,’ and do your best to keep track of the details surrounding the pain and your period and come prepared with that information to your visit with your physician,” she said. “By providing that information to your physician, they can better understand if your symptoms align with endometriosis or another condition. Treatments vary, so if one type of treatment isn’t working, talk to your doctor about other options.”