In your local Lucille Roberts gym, you may have noticed a new poster that says, “Killer Cramps Are Not Normal.” This poster was created by the Endometriosis Foundation of America (EFA) to raise awareness of a problem that many women suffer from and that many of us know little about.
Tamer Seckin, M.D., is a leader in the area of medicine seeking to improve the lives of women with endometriosis. His practice is based in New York, and he serves on the EFA’s Executive Board of Directors. Dr. Seckin generously agreed to answer questions we had about this condition, including symptoms, causes, and treatment.
Lucille Roberts: What causes endometriosis, and what are the symptoms?
Dr. Tamer Seckin: Endometriosis is caused when the endometrium, the lining of the uterus, implants in areas outside of the womb. As the woman’s hormones fluctuate and as she menstruates, the implants have no way to exit the body in the way that the endometrium is supposed to. This causes pain and develops into endometriosis.
The symptoms are painful periods, particularly from the first day of the period. The pain can last beyond the period at times and can also be problematic when the period is over. Gastrointestinal symptoms may be present. These are identified by trouble with bowel movements during periods, diarrhea, and gas pains. Women with endometriosis may also have painful intercourse, and they could develop leg and back pain. There is an overall sense of feeling tired. Elements of exposure to chronic pain can cause some changes in the personality and an overall feeling of lower self-esteem and distrust, so there may also be some psychological changes in the personality.
LR: How common is this condition?
TS: Endometriosis affects around one in ten women that we recognize in the clinical situation. The disease may be more common, but we don’t know the exact incidence. In America, we think there is around 10 million women affected. In the world, we think it is close to 180 million who have the disease. It must be remembered that this disease affects not only women, but it also affects their relationships – their relationships with their loved ones, their families, their work, their bosses, and their careers. It affects women at the most productive time of their lives in terms of their work and their career. The disease hugely affects all of these aspects of a woman’s life.
LR: What’s the difference between normal menstrual cramps and abnormal ones? How does one measure pain?
TS: First of all, many girls are made to believe (from family and friends) that pain during menstruation is normal. In some respects, this is correct. More than half of young girls experience pain with their periods. However, we need to do a better job of defining the difference between normal and abnormal. Cramps are normal. Chronic, debilitating pain, vomiting, bloating, and abnormal bowel movements is not.
By the time women with endometriosis get to college, they have learned to suppress their pain. And, when they begin sexual activity, they have another set of problems: pain during intercourse. At this point girls, often go to a gynecologist or nurse. OB/GYNs prescribe birth control pills, which often do not alleviate the pain.
After years of seeing physicians and other health professionals and receiving little help, women with endometriosis often begin to distrust the medical establishment. In addition, if they are prescribed powerful pain medications, there is a chance they may begin to abuse or misuse them. Alcoholism can also become a problem.
LR: What happens if endometriosis goes untreated?
TS: One of the unfortunate physical consequences of inappropriately-managed or ignored endometriosis is infertility. Endometriosis is one of the top three causes of female infertility. While it is one of the most treatable, it remains the least treated. In addition, there is evidence that endometriosis can play a role in some cases of ovarian cancer.
Late-stage endometriosis is very difficult to manage. But, if we address it early and treat it appropriately, we will have a lot fewer women with the condition becoming infertile or having unnecessary hysterectomies.
LR: Can women of any age have endometriosis? What about girls who have just started their periods?
TS: If a woman is menstruating, she can have endometriosis, no matter what her age. There is little comfort with teaching young girls about the physiology of sex so that they understand what is normal and what is not. We also need to do a better job of teaching men to be sensitive about what women go through during times of menstruation. If we take steps to educate our young men and women, we will be in a better position to recognize and manage endometriosis early, when it first begins to manifest itself during the teenage years.
LR: Is there a cure for endometriosis, and if so, what is it? Can all cases be cured?
TS: Endometriosis is a treatable condition. We have found that we must take the disease out—via excision surgery—rather than engaging in inappropriate treatment practices. The longer a case of endometriosis goes inappropriately managed or ignored, the harder it is to cure.
Some important things to know are: many cases of endometriosis can be successfully treated with Laparoscopic Excision Surgery; hysterectomy should only ever be considered as a last resort, and there is no oral medication to cure endometriosis.
LR: Why are you so passionate about spreading awareness of this condition?
TS: In my practice, I constantly see women with chronic pelvic pain desperate for an answer. Many go from physician to physician in search of relief only to be misdiagnosed with irritable bowel syndrome or pelvic inflammatory disease. In many cases, their doctors don’t find anything physically wrong and dismiss their symptoms as psychological in nature. This is a tragedy.
It must be understood that pain is not normal. Chronic pain has a reason, a physical cause, and is valid. Endometriosis awareness is crucial, both for the public and for the medical community so that this disease can be detected early and treated properly.
The Endometriosis Foundation of America’s awareness plan consists of three main objectives: research, continued medical education, and public outreach. We have multiple program initiatives including a Tissue Bank (in partnership with Lenox Hill Hospital), funded research projects, an annual medical symposium, and various educational workshops.
In so many cases, awareness begins with a conversation outside of a doctor’s office or medical journal. At the forefront of the EFA’s outreach efforts is our originally designed “Do you have endometriosis?” poster series. In 2011, we launched the first ever awareness poster of its kind, “Killer cramps are not normal.” We are so grateful to Lucille Roberts for sharing our passion in spreading this message.
LR: Some women don’t have insurance and may be reluctant to seek medical help. What advice can you offer to them?
TS: It is important to understand that women of all backgrounds with endometriosis face tremendous obstacles when seeking treatment for the condition. It takes an average of ten years for a woman to receive an accurate diagnosis and even longer to find a physician willing and able to provide appropriate treatment. I think that we can address this problem at the educational level. If teaching hospitals are receiving female health-related grants from the federal and state governments, training on endometriosis should be mandated. This will help improve the odds that endometriosis will be recognized as a major disease that has a significant impact on a woman’s physical and mental well-being. Endometriosis is not a cosmetic condition; it is a public health threat. We can also solve this problem at the policymaking level. We need legislators to pass laws recognizing endometriosis as an important condition. A more accurate diagnosis as a result of greater education to medical professionals and women will save people time, money, and suffering.
LR: Anything else you’d like to add?
TS: Our mission is clear: to educate the medical world and women about endometriosis. For more information on endometriosis, you can visit www.endofound.org. Debilitating pain during menstruation is not normal and should not be accepted. It’s important for women to educate themselves and to feel comfortable seeking help to find answers.