In early February, Melanie Greeke was preparing for her hysterectomy with a mixture of joy and dread. The 27-year-old mother of three had been experiencing unbearable pain, headaches and nausea for the better part of a year. Finally, after seeing several doctors and being turned away time and again, she was diagnosed with endometriosis.
Although a hysterectomy is one of the last resorts for treatment of endometriosis, Greeke, who lives in Goldsboro, N.C., had exhausted all other options, and her doctor said her case was extreme.
Endometriosis, in which tissue that would normally line the uterus grows outside the uterine walls, affects 5 million American women. Symptoms and the severity of pain vary greatly from woman to woman, making it difficult to diagnose, said Jill Rabin, a professor of obstetrics and gynecology at Hofstra North Shore-LIJ School of Medicine. There is no cure, so doctors treat the symptoms, such as pain.
The tissue can attach to the outer uterus, the ovaries, the bowels and the pelvic region. Once there, it behaves similarly to endometrium inside the uterus, building up and breaking down, but with nowhere in the body to go. Doctors do not know what causes the condition.
“Who is predisposed to this?” Rabin mused during a phone interview. “Is it genetic? Is it retrograde menstruation gone awry? Is it an interaction between genes and hormones and hormonal environment? Why do some people overproduce prostaglandins and estrogen? If you’re looking for answers, I don’t have them.”
Symptoms start to appear in adolescence but usually get dismissed as painful periods to which an affected girl has not become accustomed, said Heather Guidone, the surgical program director of the Center for Endometriosis Care in Atlanta. So most women who get diagnosed are in their 30s and often have suffered for years.
“Pain is never normal,” Guidone said. “A lot of society tends to dismiss pelvic pain, particularly when associated with a period. It may be acknowledged, but women are told that this is your lot in life for being female. They’re told they’ll grow out of it. They don’t.”
Symptoms run the gamut of affliction, but they usually combine in some manner for a prolonged stretch of time. Both the Mayo Clinic and Department of Health and Human Services list very heavy, excruciatingly painful menstruation as the top symptom. Others include headaches, fatigue, nausea, bowel trouble, bloating, painful intercourse and infertility.
Greeke’s symptoms seemed standard for endometriosis. She had been overweight for a large part of her life and had undergone gastric bypass surgery a few years earlier. Doctors thought that the pain and inability to eat might have been due to the surgery and that the headaches were unrelated. It wasn’t until Greeke quickly shed more than 100 pounds more than three years after her surgery that she was able to convince someone to take her seriously.
“When the pain and nausea started showing up, most people I saw acted happy for me,” she said. “ ‘Oh, you’re finally losing all the extra weight,’ they’d say. ‘If you’ve got to be sick, at least you’re looking hot now.’ Stuff like that. I knew it wasn’t right. I would have to spend days in bed, it was so painful.”
By the time Greeke found a doctor at Wayne Memorial Hospital in Goldsboro, she had nearly given up.
“I walked in expecting to be told everything was fine yet again,” Greeke said. “When my new doctor actually listened to me and did tests, I was blown away. After the labs and images came back, we found out that not only was I suffering from endometriosis, but all my levels were off. My iron was literally nonexistent.”
Guidone said that endometriosis does not directly affect vitamin and mineral levels. But losing so much blood each month, she said, frequently leads to the anemia that Greeke described.
As with the cause of endometriosis, the best treatment plan is contested. The American Congress of Obstetricians and Gynecologists suggests moving very slowly, from superficial fixes to procedures that are more aggressive.
“You have to go based on the individual’s symptoms,” said Rabin, a spokeswoman for ACOG. “For some patients, we can manage their pain with a simple estrogen plan. Others try that and it doesn’t work, so we move to laparoscopy or other minimally invasive procedures. If that still doesn’t help, then we consider a hysterectomy or more-invasive approach. And even then, sometimes the pain reoccurs. Ten to 15 percent of hysterectomy patients still have pain because they have lesions on their bladder or bowels.”
Guidone generally advises against hysterectomies.
“At our center, we much prefer laparoscopic surgery because it’s minimally invasive and doctors can specifically target the areas of excess tissue and remove them,” Guidone said. “Hysterectomies can work for some women, but if the tissue isn’t solely on the uterus or ovaries, the disease will come back. Only by completely taking out the diseased tissue can we be sure we’ve stopped the disorder.”
After extensive discussions, Greeke decided that hysterectomy would be the best option for her. She had finished having children, and although she is considered quite young for the procedure, her pain and nausea were so bad that the surgery was thought to be the quickest and best solution for her.
“People would come up to me and ask if I’d considered all the negatives to the surgery,” Greeke said, “as if I’d just randomly decided to remove one of my organs for fun without doing any research.”
Greeke underwent the procedure after weeks of lab work, blood work and iron-level checks. She was back home two days later, happy to have it all over with before her husband, who is in the armed services, was deployed.
“I’m hoping, after I heal, I’ll be able to parent my kids solo without having to lie down for hours at a time,” she said.
Elizabeth Hawksworth, who lives in Toronto, also faces crippling endometriosis pain, sometimes for weeks at a stretch.
“Hysterectomy has been bandied about as a possible treatment,” said Hawksworth, who is 32. “But doctors are hesitant to recommend that procedure for someone so young and without children.”
Many health-care professionals recommend first treating endometriosis with hormones normally found in oral contraception, which usually stops ovulation. That often helps stop the spread of endometriosis.
“Hormones can work because they stop you from ovulating,” Rabin said. “Without the buildup and removal of tissue, the flow of the condition is interrupted, and the pain can be minimized in some patients this way.”
Guidone said the disease definitely has a hormonal component. “There is something to be said for trying to approach it hormonally through oral contraception,” she said. “But it only buys time, and it doesn’t work for everyone. There is no medicine to cure this disease.”
The pill didn’t work for Hawksworth; it only made her sicker. She said exercise and some supplements have helped. She now takes a daily multivitamin, which she says helps with the nausea. She has learned to live with the pain after suffering from endometriosis for more than a decade.
“After I turned 30, it got a lot worse,” she said. “I started becoming nauseated three weeks out of four, often only getting relief with my period, which still carries a lot of pain and heaviness with it. The nausea is debilitating and causes me to be unable to eat and sometimes unable to work. I have other symptoms, like constipation and diarrhea, and ovarian pain.”
Guidone said that endometrioisis recurs in 15 to 20 percent of women who have hysterectomies and in 7 to 12 percent of women who have laparoscopic surgery to remove the entire tissue. Hormone and diet treatments serve only to diminish the pain, and the endometriosis itself is not affected.
“As a previous sufferer of endometriosis myself, I went through 22 surgeries, and I thought that was simply going to be my life,” Guidone said. “But this doesn’t have to be hopeless. If we work together as a community, we can find the right care for each individual. There is nothing lonelier than taking this journey by yourself. I don’t want women feeling like they’re crazy or making stuff up. There is hope out there, and we can find it.”
Cunha is a freelance writer.