Student's endometriosis takes years for doctor diagnosis
by Connie Yu Managing Editor

A special presentation from the Endometriosis Association and Harris Methodist Fort Worth Hospital
Time: October 16, 2003, 6:15-9 p.m.
Where: Harris Methodist Fort Worth Hospital, 1301 Pennsylvania Avenue, Fort Worth 76104, 817-882-2000
What: Presentation from Mary Lou Ballweg, president of the Endometriosis Association; Dr. Deborah Metzger; Dr. Alan Johns and Dr. William Rea on causes, treatment options and other endometriosis issues.

   TCC student Sallyann Hoernke spent 20 years trying to believe that the massive bleeding and severe pain that came with her periods were normal.
   Since the age of 13, her menstrual cycles seemed endless, and the excruciating pain often left her curled up on the couch for hours, if not days.
   Growing up was imbedded with constant diarrhea, fatigue and immune disorders, and sexual intercourse to her was like "a thousand-knife stabbing."
   But every time she complained about it, people around her would tell her that the pain that had increasingly plagued her daily life was "just cramps."
   Doubting her family's diagnosis, Hoernke remembered confiding with her school nurse.
   "One of the things that I remembered was the school nurse saying, 'Oh, you are just trying to get out of class; they are just cramps. Everybody has cramps,'" Hoernke said. "So what I learned from this experience is that pain is normal, and later I just learned not to talk about it."
   Eventually, Hoernke sought help from doctors when she couldn't bear the pain anymore. But instead of receiving treatments, she was repeatedly told to go to a psychiatrist.
   "The gynecologists and the family doctors I had talked to about my symptoms in the past would always dismiss it by saying, 'it is in your head,' or 'you need a psychiatrist because you are complaining about something that really isn't there,'" she said.
   Confusions, unexplained pain and the lack of support left Hoernke angry and isolated, which has driven her family and friends away throughout her early adult years.
   "Sometimes, you felt like you were really crazy," she said.
   It was not until she turned 33 and started seeing yet another new gynecologist that she finally found the root of her suffering-she was diagnosed with endometriosis, a hormonal and immune disease for women in their reproductive years.
   The pain, bleeding, fatigue, digestive and intestinal problems that Hoernke endured are all common symptoms of the disease. Women with endometriosis are also prone to infertility, immune disorders and ovarian cancer.
   During each menstrual cycle, the endometrium, tissues that line the inside of the uterus, grow, break down and shed out of the body through the vagina. Endometriosis occurs when the tissue is found outside the uterus-usually in the abdomen, fallopian tubes and ligaments that support the uterus.
   Like the ones inside the uterus, the misplaced tissues also build up, break down and shed. But the blood and tissue shed from the growth have no way of leaving the body, causing internal bleeding and breakdown of the blood and tissue from the growth and inflammation.
   Hysterectomy and the removal of ovaries are the most effective treatments for endometriosis so far. In some cases, however, doctors have found recurrence of the disease after treatment, according to the endometriosis Association.
   Other common treatments used to control the disease include surgery, pain medication and hormonal treatment.
   Causes of the disease remain unknown. Some research suggests that it is associated with dioxin, a toxin found in chlorine-based products, pesticides and air pollutions. Others believe the disease is hereditary and the growth tissues are genetically located in abnormal areas outside the uterus.
   An estimated 89 million women in the world suffer from endometriosis. Like Hoernke, many found themselves going through an even more emotionally draining ordeal to receive accurate diagnosis and get the proper treatments they needed.
   For that reason, Hoernke started an endometriosis support group in February for patients who live in the Dallas/Fort Worth Metroplex. The group will be a part of the EA network, and Hoernke said she hopes it will offer a place for patients to learn and exchange knowledge on the latest research as well as get emotional support.
   Her own experience with a previous support group in the area has given her a sense of belonging and support she wanted for years, Hoernke said.
   "It was such a sense of relief," she said. "The feeling of 'oh, my God, that's what I've felt like'-It confirms and validates your experience." That group dispersed a few years back because one of its organizers had other engagements at the time.
   Proper education of the disease and solid emotional support are crucial for patients of endometriosis to cope with the disease, Penelope Vogel, EA support program coordinator, said.
   A long-time endometriosis veteran herself, Vogel said she understands the frustration many women feel when it comes to communicating with their doctors and deciding on the appropriate treatments.
   "They are intimidated to ask questions," she said, "because they think that the doctors have got the schooling and the experience."
   But sometimes asking questions may be essential for a patient to get the accurate diagnosis and decide on the treatments specifically for her, Vogel said.
   "Medicine has become so complicated that sometimes [doctors] have this tunnel vision that it will go away," she said. "If I take a pill, it will go away; if I have a hysterectomy, it will go away, and it's not true."
   For example, hysterectomy and ovary removal take away women's ability to conceive, and some hormonal treatments inflict uncomfortable side effects. Patients also need to be aware of their higher risk for immune diseases, such as Lupus, multiple sclerosis and arthritis, she said.
   Her group offers step-by-step instructions for talking to physicians as well as information about the disease from its latest research. Vogel's support program includes a network of support groups nationwide, online chatting and a 24-hour hotline service.
   "The whole key to this is empowering our women," she said. "We are providing them with the key resources for them to deal with their doctors."
   Dr. Reynold Dilena diagnosed Hoernke's endometriosis, but said the characteristics and locations of the tissue growth make it difficult sometimes for physicians to diagnose the disease. Its cramps-like symptoms can also mislead them, Dilena said.
   "You can presume that it might be endometriosis," he said. "But the only way is to look at it directly [through a laparoscope] because you can't feel it."
   Through laparoscopy, a surgical procedure, a physician inserts a laparoscope into a tiny incision in the abdomen to check for endometrial implants. Dilena said some lesions of tissue growth are so small that physicians find it hard to see even with a scope. "Surely, women have a lot of frustration," he said. "Because it's not easy to diagnose."
   Dilena said he would recommend women who have severely painful menstrual cycles and pelvic pain to consider laparoscopy. However, not all doctors are familiar with the procedure, and patients who desire it should consult a gynecologist with experience, Dilena said.
   Ovary removal remains to be the most successful treatment for endometriosis because it eliminates the source of the hormones that stimulates the endometrial tissue growth, Dilena said.
   But many women have reservations.
   "It's a big trade off to take your ovaries out when you are 35 years old," he said.
   Hoernke's condition has dramatically improved since she had her hysterectomy a few years ago. While she said she feels grateful for the surgery, its side effects continue to impinge on her life. She now has menopause-like symptoms, and she fears having estrogen replacement therapy, a typical relief-treatment for menopause, will reactivate her endometriosis.
   The future for Hoernke may still be unclear, but after the success of the first meeting, Hoernke knows she will not have to fight alone this time, she said.
   "If I run into problems down the road," she said, "I can get the support [from the group] and find out the latest information."
   For more information, contact Hoernke at sallyannhoernke@hotmail.com.