Best friends from Moorhead battle debilitating pain of endometriosisFARGO - Sonja Peterson was at a Minnesota Twins game with her dad and two younger brothers the first time she felt the pain.
By: Meredith Holt, INFORUM
FARGO - Sonja Peterson was at a Minnesota Twins game with her dad and two younger brothers the first time she felt the pain.
That pain – the agony of endometriosis – would take so much from her over the next 10 years, including her fertility. “It destroys everything,” she says.
The Department of Health and Human Services estimates that more than 5 million women in the U.S. suffer from the disease, yet it’s widely misunderstood.
Endometriosis occurs when menstrual tissue leaves the uterus and attaches to other abdominal organs, Dr. Jordan Coauette, an ob-gyn with Sanford Health, explains.
There’s no consensus on what causes endometriosis or how it spreads to other parts of the body. To further complicate matters, diagnosis requires surgery, there is no cure, and treatments are hit-and-miss.
Endometriosis goes far beyond “killer cramps.”
When Sara Culwell showed symptoms right away with the start of her period, her mother told her, “That’s how it is” and gave her some Advil.
But what best friends Peterson and Culwell, both 27, endure affects school, work, finances, relationships and plans for the future.
“There’s not an aspect in my life that isn’t directly affected,” Culwell says. “It’s the great battle of our lives.”
Endometriosis is assigned stages, but they don’t correlate to the severity of a woman’s discomfort, Coauette says.
Peterson’s endometriosis is Stage 2 and Culwell’s is Stage 4, but they both experience debilitating pain.
“On bad days, I can’t empty my dishwasher because the plates are too heavy,” Peterson says. “Vacuuming is out of the question.”
She says she’s had to grab onto walls just to get to the bathroom without doubling over and lean on the shopping cart at Target.
Culwell adds, “There are days when I don’t bathe until Dan (her husband) gets home from work because I’m afraid to get stuck in the tub.” The Moorhead women don’t expect to be pain-free; they just want to struggle less with the day-to-day activities most of us take for granted.
Many women don’t realize they have endometriosis until they start struggling to get pregnant.
Most signs of the disease don’t show up on digitalimaging, so an exploratory surgery called an endoscopic laparotomy must be performed to diagnose it.
Even with surgery or a biopsy, the spot can be so small that it’s easily missed. “They can still have it, and we just can’t see it,” Dr. Coauette says.
Doctors first try to rule out other problems, such as irritable bowel syndrome or interstitial cystitis/bladder pain syndrome.
However, women with endometriosis are more likely to have other conditions, too, which is the case for both Peterson and Culwell.
The National Institute of Child Health and Human Development found that endometriosis patients are more than 100 times more likely to experience chronic fatigue syndrome and more than twice as likely to develop fibromyalgia.
Higher rates of depression, addiction, allergies, asthma, hypothyroidism, eczema and adenomyosis – a condition in which endometrial tissue grows inside the walls of the uterus – have also been reported.
EASING THE PAIN
Doctors often start with hormonal treatments such as birth control pills, intrauterine devices (IUDs), and monthly shots.
Although they help regulate a woman’s menstrual cycle and may help alleviate the pelvic pain, hormones don’t stop the disease from progressing, Coauette says.
Surgeons use lasers or other instruments to destroy it, but that only removes surface tissue. “You might just be getting the tip of the iceberg and there might be more below,” Coauette says.
The Endometriosis Foundation of America considers “excision” surgery – deep removal of all endometrial tissues – to be “the gold standard” of treatment.
Most women who suffer from the disease are on pain medication. Some swear by the “endo diet.” Peterson is trying pelvic floor physical therapy.
The treatments aren’t without side effects. Peterson and Culwell went through chemically induced menopause. They’ve experienced weight gain and dental problems. Painkillers affect their ability to function.
Not to mention the cost. Culwell has more than $1 million in medical debt alone.
NO ‘UNDO’ BUTTON
Two weeks after her 26th birthday, Culwell had a hysterectomy. That same day, her sister gave birth to her first baby.
After years of trying different treatments with little or brief periods of pain relief, she knew the surgery was the next step. It didn’t work, but she knew there was a chance that it would.
“I regret it almost every day, because I’m in just as much pain now, only I have an empty feeling,” Culwell says.
She and Peterson encourage women facing a hysterectomy to go through extensive counseling and soul-searching beforehand and to seek help dealing with the grief and sense of loss afterward.
“There’s no ‘undo’ button,” says Peterson, who had hers when she was 24.
According to the EFA, more than half of the women who have the disease are affected by infertility.
Though most doctors consider it a “last resort,” many women with endometriosis undergo hysterectomies. According to the National Women’s Health Network, 600,000 hysterectomies are performed each year in the U.S., but not all are medically necessary or related to endometriosis.
Coauette says women with endometriosis who are able to conceive are pain-free during pregnancy. “Pregnancy is actually good for endometriosis,” she says.
YELLOW NAIL POLISH
In her practice, Dr. Coauette sees an average of two to three patients a week for pelvic pain or presumed endometriosis.
But many women still don’t know about this painful, baffling disease. The ob-gyn says women in severe pain sometimes ignore the symptoms, not realizing their discomfort could be a sign of a more serious problem.
“I never even heard the word (endometriosis) until I was almost 20 years old,” Culwell says.
Some celebrities with the disease have worked hard to raise awareness.
Padma Lakshmi, the Emmy-nominated host of Bravo’s “Top Chef,” co-founded the EFA, and actress Susan Sarandon gave a much-publicized speech at the organization’s 2011 Blossom Ball.
When Peterson and Culwell were diagnosed, they turned to the Internet for help. There, they found information, encouragement and support. They first connected through a Facebook support group, and now they’re starting a local face-to-face one.
March is Endometriosis Awareness Month, with women sporting yellow ribbons to signify the disease. The friends even wear matching bright-yellow nail polish.
“I would hope that one day when people see a yellow ribbon, it would be like them seeing a pink one,” Culwell says.
Readers can reach Forum reporter Meredith Holt at (701) 241-5590
Possible symptoms of endometriosis
Signs of endometriosis may include:
• painful periods
• pain in the lower abdomen before and during menstruation
• cramps for a week or two before menstruation and during menstruation; cramps may be steady and range from dull to severe.
• pain during or following sexual intercourse
• pain with bowel movements
• pelvic or lower back pain that may occur at any time during the menstrual cycle.
Note: There may be no symptoms.
Source: U.S. National Library of Medicine