Trying to describe pain to someone is never easy. It's kind of like trying to describe the sound of a flute to someone who was born deaf. This can be particularly difficult when describing pelvic pain because it can be so hard to even know exactly where the pain is coming from.
Thus, it's not surprising that a survey from the Endometriosis Association found a 10-year delay from the time women start experiencing symptoms until they receive a diagnosis.
That's a long time to live in pain.
Pelvic pain is inextricably linked to endometriosis—a medical condition in which tissue lining the uterus exists outside the uterus, where it grows and shrinks according to hormonal changes. An estimated 71 to 87 percent of women with chronic pelvic pain have endometriosis, which occurs in 7 to 10 percent of all women. And, contrary to what many health care professionals think, the condition can be quite common in adolescents and is often behind their chronic pelvic pain.
Chronic pelvic pain may occur during menstruation, intercourse, when having a bowel movement, or simply exist all the time. In some women, the pain exists along with other painful conditions such as irritable bowel syndrome, interstitial cystitis, kidney stones, vulvodynia, fibromyalgia and migraine headaches.
One important thing to realize: Your pain is not normal, and you deserve a diagnosis and treatment. Simply receiving a diagnosis and realizing that the cause of your pain is not cancer can help relieve anxiety and, believe it or not, sometimes even the pain itself!
If you are experiencing chronic or even acute pelvic pain, your first stop should be your health care provider, whether a physician, midwife, or nurse practitioner. Be honest and clear about your pain, and be as specific as possible. A good idea is to track your pain in a monthly diary, ranking the level of pain from 1 to 5, with 5 being so excruciating you can't function and 1 being the level of mild menstrual cramps. Also note anything you were doing that might be related to the pain. For instance, did the pain occur during or after intercourse? After eating a large meal? During menstruation?
During the conversation with your health care provider, don't be afraid to tell him or her what you think is causing your pain. Did you have pain like this during a previous ectopic (tubal) pregnancy? When you had an ovarian cyst? This gives your health care professional a starting point for diagnosis. It is also important to talk honestly and openly with your health care professional about any abuse or sexual trauma you experienced in the past or that may be occurring now. Such trauma can be a cause of pelvic pain.
The first step in diagnosis is a complete medical history and full medical examination, typically including a pelvic examination. Sometimes your health care professional may be able to begin treating your pain medically, even without a clear diagnosis. This might sound a little disconcerting—how can someone treat your pain if they don't know what's causing it?—but can often work quite well.
Sometimes, however, your health care provider may need more tests, including a vaginal ultrasound, in which a small wand is inserted into the vagina. Sound waves from the wand create a picture identifying any masses that may be contributing to your pain. Sometimes a laparoscopy is needed, where a thin tube is inserted through a tiny incision in your abdomen. A small camera on the end of the tube sends a picture back to a screen, allowing the doctor to see any abnormalities in your pelvic region. This is considered surgery, however, and so is used only when the doctor thinks the findings might change the course of treatment. It is not required to begin treatment.
The treatment for your pain depends on the diagnosis. The primary options are medical: nonsteroidal anti-inflammatory drugs (NSAIDs) for the pain, continuous oral contraceptives or a shot of Depo-Provera, a progestin contraceptive.
Another medical option is a drug called leuprolide (Lupron). This medication suppresses estrogen, essentially mimicking menopause. However, Lupron is only used for three to six months at a time because the loss of estrogen could affect bone density. One option if you need Lupron is for your doctor to "add back" supplemental progestin to help maintain bone density and alleviate some of the side effects.
While surgery to remove endometriosis tissue or scar tissue that may be causing the pain can provide short-term relief, the pain tends to return in most women within a year or two.
Your health care practitioner should also talk to you about nonmedical options, such as counseling to help you better cope with chronic pain, physical therapy and a referral to a pain management clinic. Often, you will need a multifaceted approach to your pain involving medicine, counseling and behavioral changes. And, as with anything so complex, you will need to give your health care team time to find the right options for you.
The most important thing, however, is that you don't let anyone minimize your pain. Even if no organic reason for the pain can be found, it is still very real. Just think about people who have a limb amputated and still feel pain in the missing limb. This occurs because chronic pain rewires your brain so you misinterpret normal sensations as painful.
But you are not crazy, and there are solutions for your pain—even pain that can't be seen.
Levy BS, Apgar BS, Surrey ES, Wysocki S. Endometriosis and chronic pain: A multispecialty roundtable discussion. OBG Mgt (supp). March 2007; S3-S22.
Ozawa Y, Murakami T, Terada Y, Yaegashi N, et al. Management of the pain associated with endometriosis: an update of the painful problems. Tohoku J Exp Med. November 2006;210(3):175-88.
Stratton P. The tangled web of reasons for the delay in diagnosis of endometriosis in women with chronic pelvic pain: will the suffering end? Fertil Steril. November 2006;86(5):1302-4; discussion 1317.
McGowan L, Luker K, Creed F, Chew-Graham CA. How do you explain a pain that can't be seen?: The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. Br J Health Psychol. May 2007;12(Pt 2):261-74.
© 2008 National Women’s Health Resource Center, Inc. (NWHRC) All rights reserved. Reprinted with permission from the NWHRC. 1-877-986-9472 (toll-free). On the Web at: www.healthywomen.org.