Agonizing Pelvic Pain? Speak Up and Get Help
Endometriosis is an autoimmune disease that affects as many as 1 in 10 females today worldwide. It can cause excrutiating pain and interfere with regular activities. Proper diagnosis can be difficult due to the intimate nature of the symptoms.
The growth of uterine tissue outside the uterus can cause intense pelvic pain, painful menstruation and sexual intercourse and contribute to infertility. If you’re grappling with the pain of endometriosis, you’re certainly not alone. According to the Endometriosis Foundation of America (EFA), the problem may affects as many as 10% of women during their reproductive years.
But despite the widespread and debilitating nature of this disease, many women suffer in silence, in part because of the intimate nature of the symptoms, and in part, because it can be difficult to get a proper diagnosis.
As a result, many women go undiagnosed. In fact, the Endometriosis Association estimates that only 13% of women with this condition in the United States ever get properly diagnosis. And even those who do get diagnosed may not be taking advantage of the many strategies that exist that could help them get their pain under better control.
Global Public Awareness Campaigns
In an attempt to encourage more females to speak up and explore their treatment options, March 2016 was designated as Endometriosis Awareness month—a global effort to shine the spotlight on this disease. March 19, 2016, was also named World Endometriosis Day. As part of these international campaigns, thousands of women participated in a series of events held around the United States and the world to highlight the condition, garner support for more research, and empower women to share their stories.
These campaigns also play a valuable role in connecting women to information and resources that can help them better manage their condition and find new ways to treat the symptoms.
What is Endometriosis?
"Endometriosis is a condition where the uterine lining, or ‘endometrium,’ implants and grows in areas outside of the uterus," explained Linda C. Yang, MD, MS, Division of Minimally Invasive Gynecologic Surgery, Department of Obstetrics and Gynecology at Loyola University Medical Center in Maywood, Illinois.
“The most common body locations where endometriosis can occur include the ovaries, behind or in front of the uterus, the fallopian tubes, the bowel, and sides of the pelvic cavity. Less common sites include the urinary tract, abdominal scars, or distant sites from the pelvis (lung, diaphragm, etc.),” she said.
The pain from endometriosis is caused by lesions that produce chronic inflammation in the nearby tissue. “This results in the release of cells (macrophages) and substances (cytokines) that promote pain. Certain pain-mediating factors called prostaglandins are also found in higher levels in endometriosis-affected tissue,” Dr. Yang said. “The nerve fibers that transmit pain signals may also be more sensitive or increased in number in or near endometriosis lesions.”
Who is at Risk?
Endometriosis is commonly diagnosed in women between the ages of 25 and 35 years old. "Other risk factors include: early onset of menstrual periods (occurring before age 11), prolonged menstrual periods, never having been pregnant, and short intervals of time between menstrual periods,” Dr. Yang explained.
While there’s no way to prevent endometriosis from occurring, there are factors that may reduce a women’s risk. Breastfeeding and a history of multiple births tend to reduce risk. Women who have late onset menstrual periods (after age 14) also appear to be less likely to develop the disease.
The only way to formally diagnose endometriosis is through a procedure called a laparoscopy, which is an outpatient surgical procedure used to view the organs. Other signs of endometriosis include an abnormal basal body temperature, as well as results of an ultrasound and pelvic examination.
“Endometriosis can also be detected in women who are undergoing pelvic surgery (tubal ligation surgery or ovarian cyst surgery) but these women may not necessarily have any endometriosis-related symptoms,” she says.
The Need to Speak Up About Pelvic Pain
Although it's hard to ignore the pain of endometriosis, women may find it difficult connecting with a health care provider who takes their symptoms seriously. That's why it's so important to find the courage to speak up about the level of pain you are experiencing.
“Menstrual pain can be mistakenly perceived as ‘normal’ and women may not be offered appropriate evaluation and treatment,” Dr. Yang said. “Some women may also feel embarrassed and choose not to discuss their pain symptoms, especially painful intercourse. Other non-gynecologic causes can mimic endometriosis-related pelvic pain including: painful bladder syndrome/interstitial cystitis, musculoskeletal disorders, and irritable bowel syndrome,” she added.
Therefore, it’s important to get to the bottom of any type of pelvic pain and find out the cause and how best to treat it. Gynecologists are generally the best choice to diagnose and treat the problem.
Differing Degrees of Symptoms
The level of pain caused by endometriosis can be very different for each person. “Some women describe cramping, burning, or tugging, but pain characteristics may vary. Some women may be able to continue their day-to-day activities without any disruptions. In other cases, the pain may be debilitating and cause significant emotional and physical distress for the women,” Yang said.
For those females who have mild discomfort, no medication may be needed. But for women coping with more severe pain, there are a number of options to manage their condition that can make a world of difference in how they feel.
Three Categories of Pain Management Options
“Management of endometriosis depends on whether the goal is to decrease endometriosis-pain or to improve fertility,” Dr. Yang said. She explained that such management can fall into one of 3 distinct categories: analgesic pain medications, hormonal therapies, and surgery. Which one is best for you depends at least in part on your desired outcomes. Here is what to expect from each treatment approach:
1.) Analgesic Pain Medications
"The first-line therapy for endometriosis-related pain is nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs work primarily as antiprostaglandin agents. They are used commonly due to minimal side effects, low cost and availability,” she said. “These medications work best when used one to two days prior to the onset of the menstrual period. Most NSAIDs can be obtained without a prescription (ibuprofen or naproxen sodium).” Physicians can also prescribe NSAIDs in higher doses, if needed.
2.) Hormonal Therapies
There are many different types and forms of hormonal therapy—each has its own pros and cons. “Combined hormonal contraceptives that contain both estrogen and progesterone have been shown to be effective in relieving pain associated with endometriosis,” Dr. Yang said. These medications come in pill, patch, and vaginal ring form. They work by causing the endometriosis lesions to regress.
“These regimens can be used continuously (no placebo interval) so that the menstrual periods are suppressed, which allows for fewer days of menstrual bleeding, resulting in fewer days of pain. The most common side effects include nausea, breast tenderness, and unscheduled/irregular vaginal bleeding. The most serious, but rare, side effects include blood clots in the legs or lungs, stroke, or heart attack,” she said.
Progestin therapies work in a similar manner as combined hormonal contraceptives to cause the endometriosis lesion to recede. “The progestin IUD releases a low dose of progestin to the uterus and may have fewer systemic side effects compared to the progestin pill or injection,” the doctor explained. “Side effects may include bloating, weight gain, irregular vaginal bleeding, and/or mood changes. Progestin medications are useful in women who cannot use estrogen (such as women over 35 years of age who smoke).” Progestin therapies can be taken as a pill, injection, or intrauterine device (IUD).
“Gonadotropin-releasing hormone agonists (GnRH agonists) induce a transient menopausal state. These medications cause the ovaries to stop estrogen production, which causes regression of the endometriosis lesions,” Dr. Yang said. “GnRH agonists have been well-studied and are effective in reducing endometriosis-pain in up to 80-85% of women.” This treatment can be taken in a nasal spray or as an intramuscular injection. “Side effects include hot flashes, decreased libido, vaginal dryness, and bone mineral density loss. GnRH agonists are mostly used for up to 6 months due to concern about bone loss associated with prolonged use due to the induced hypoestrogenic state,” she added.
When most of these medications are used properly, Dr. Yang said that the side effects are minimal and most will resolve once treatment ceases.
3.) Surgical Interventions
For some women with severe forms of endometriosis and/or infertility caused by this disease, as well as for those who can’t tolerate medicines or hormones to treat their pain, most viable non-medicine approaches to endometriosis pain management involve surgery. (Note: Alternative methods have not been studied enough to have outcome data that proves they are effective to treat endometriosis.)
“There are two approaches to surgery: conservative surgery and definitive surgery,” Dr. Yang said. “Conservative surgery is intended to treat endometriosis in women who desire future fertility or who desire retention of the uterus and/ovaries. Although effective in treating endometriosis-pain, conservative surgery may not have lasting results.” The condition may reoccur and this may require a second surgery.
“Definitive surgery (removal of the uterus) and in most cases, bilateral oophorectomy (removal of the ovaries), may provide better long-term pain relief than conservative surgery,” Dr. Yang said. “Definitive surgery is not ‘curative,’ but may provide significant improvements in pain and reduce the chance of needing a repeat surgery in approximately 90% of women,” she said.
In many cases, endometriosis surgery can be performed via a minimally invasive surgical approach using laparoscopic incisions. “For more advanced cases, surgery may be performed via laparotomy or a larger abdominal incision. The surgical approach depends on the severity of the endometriosis and the surgical plan recommended by a woman’s treating physician,” Dr. Yang added.
A Final Note
The key to properly managing the pain of endometriosis lies in finding a gynecologist or other health care provider who specializes in endometriosis and who can deliver compassionate and evidence-based therapies, along with helping women select the best treatment plan for their own circumstances.
“Endometriosis can be a challenging condition to treat, but women should not lose hope in their battle against this disease. Know that endometriosis can be treated,” Dr. Yang stressed. She also says that women may be empowered by gaining knowledge about the condition through a wealth of national organizations accessible online, including the Endometriosis Foundation of America, the Endometriosis Association, and the Endometriosis Research Center. You can also visit Endo-Resolved.com to find a health care provider in your area.