Most gynecologists will tell you that one of the most difficult patient encounters they will have in their clinic is someone with pelvic pain. Pain comes in many forms and is different for every individual. Sometimes pain is straightforward. If I were to give you a generous throat punch (a hollow threat I often use) you will be able to precisely locate your pain and know its cause. Some painful events are less straightforward. Let’s say your appendix has decided to become inflamed, infected and will try to rupture in an attempt to ruin your life. That pain will usually start around your belly button before it moves to the lower right side of your belly which is home to the offending organ. Pelvic pain is often like the latter. It is difficult to find the cause and can present in a variety of different ways.
About 15% of women will experience chronic pelvic pain at least once in their lifetime. Chronic pelvic pain is pain that lasts 6 months or more in duration. It could be daily or constant pain or it could come and go inconsistently. About 5 to 8% of women will struggle with chronic pelvic pain for a large portion of their life. When I see patients who have pain in my clinic I remind them that I can list probably a dozen things that might be causing their pain. Usually we can narrow down what we call the differential diagnosis (list of potential causes) to a few most likely causes or maybe even the exact reason for the pain. In other circumstances we have no answer. Nothing. A list of maybes, a list of treatments, but no name, no diagnosis for the face that sits in front of us.
Most women with pelvic pain have endometriosis. Endometriosis occurs in less than 10% of women but is the diagnosis for at least 70% of patients who present with pelvic pain. The American College of Obstetricians and Gynecologists state in their practice bulletin on the topic that “the clinical manifestations of endometriosis are variable and unpredictable in both presentation and course.” No sentence could be more true. Endometriosis is, to put it too simply, when the lining of the uterus is implanted inside the body, usually in the pelvis. When visualized during surgery it can appear red, black, white, clear or even be difficult to see. Harder than finding it is getting rid of it. Many women with endometriosis have infertility from their disease. We have few medications and surgery is often not curative.
Some other women with chronic pelvic pain have muscle spasms that are often long-standing and difficult to reverse. These women often have a difficult time being diagnosed and once they are, the road back to health is quite long. Still others have gastrointestinal disease, inflammation of their bladder, scarring from previous surgery or pain caused by previous trauma or abuse. Even depression and anxiety are known to cause pelvic pain. Can you have pain without a cause? Sure. Just like you can be sad and not know why or be upset and not exactly know what you are upset about.
If you know someone with pelvic pain, know their pain is real. If you are someone who has been diagnosed with chronic pelvic pain, please know that your doctor wants to help you get better. My best advice for you is to find a provider you trust; to know the road will be long and will require patience and strength; and to find someone who will support you on the journey back to health.