Old Colony Memorial Plymouth, MA
Women get together to lend support
Group helps cope with endometriosis
by Suzanne Colonna
MPG Newspapers
PLYMOUTH-- A strong support system can be a powerful tool in coping with disease.
That's why jennifer Coffey, a plymouth resident, started the EndoCenter of Plymouth in September of last year. "Basically it evolved out of frustration," she said.
Coffey was diagnosed with endometriosis in 2000. After discovering there were no support groups for endometriosis on the South Shore, Coffey decided to start a group in Plymouth. Her work is volunteer. Starting the EndoCenter is a way for her to help other women with the disease and to direct her own energy and emothins, she said.
The EndoCenter of Plymouth is a local support group sanctioned by the Endometrisis Research Center (ERC), a national non-profit organization, which offers information and support to endometriosis sufferers.
Endometriosis is a reproductive and immunilogical disease. Acccording to the ERC, it affects more than 7 million women and teens in the country. Symptoms often include chronic abdominal pain and fatigue, Coffey said.
For years, Coffey did not know the cause of her own pain. "The pain can be so debilitating that you can't walk," she said. It can interfere with a woman's ability to work and to raise a family, she said. Coffey said the disease is misunderstood by many people. In the 1800s, women with endometriosis where said to suffer from "husbanditis," she said. Even today some people dismiss the disease as "part of being a woman," Coffey said.
However, it is a major disease with immunological and reproductive effects, she said. "There's nothing you do to get endo, it just is." Living with endometriosis, like any disease, can be difficult, Coffey said. The disease causes physical and emotional stress, she said. "I work, I'm a mom and I'm active in my community, and something's getting in my way," she said, "I'm not happy about that." Helping other women with endometriosis is a way for Coffey to keep the disease from winning, she said. Coffey said she has been getting calls and e-mails from other women with endometriosis. Some of them have questions about the disease, she said, and others simply need someone to listen and understand.
The cause of the disease is not known. It occurs when the endometrium builds up outside the uterus and causes lesions and internal bleeding, which forms scar tissue. Lesions can occur throughout the pelvic area and other areas of the body. Symptoms include abdominal pain, bloating and cramping, nausea, fatigue, infertility and miscarriage. Because many of the symptoms mimic signs of other disorders, endometriosis is often misdiagnosed. Coffey said she was misdiagnosed with pelvic inflammatory disease in 1993. Some women go through serveral misdiagnoses before being tested for endometriosis, she said.
Endometriosis can only be diagnosed surgically, by laparoscopy or laparotomy. A laparoscope is inserted into the abdomen to examine the organs for endomteriosis lesions. There is no cure for endometriosis. hormonal treatments, contraceptives and surgical treatments are used to treat the symptoms, Coffey said.
The EndoCenter can provide informaiton on the disease and some of the treatment options available, Coffey said. The monthly support meetings are held at Jordan hospital, Coffey said. However, the EndoCenter does not endorse hospitals, physicians or treatments. What is successful for one woman may not work for another, she said. The purpose is to provide non-biased information and support to help women communicate more effectively with their doctors, she said.
The ERC also sponsors online support groups, for women who may not be able to attend the meetings. The online groups can help provide daily support, she said. Coffey said she thinks it is important for women with endometriosis to feel comfortable with their physicians. Being able to discuss their pain and their symptoms is crucial to monitor the progression of the disease, she said. Like any chronic disease, endometriosis has its ups and downs. "I have my good endo days and my bad endo days," she said. Through dietary changes and medication, Coffey said she has been able to cope with the disease. "Right now, I'm OK. Will I always be OK, I don't know," she said.
Coffey said she hopes more people will become aware of the disease and more research will be done to discover the cause, and hopefully a cure. "We want to not exist," she said " We want there to be no reason for us to exist." Until then, Coffey said she hopes to offer support to endometriosis sufferers, their friends and family and women and teens who think they may have the disease.
Coffey said the next support meeting will be held on Feb. 16, 5 p.m. to 6 p.m. in the Funkhouser Conference Room, at Jordan Hospital.
For more information on the ERC, visit the web site at www.endocenter.org . To contact Coffey of the EndoCenter of Plymouth, call (508) 746-3624, or visit the web site at www.geocities.com/elkinbow/ .
