I see women who have painful cycles all of the time. Most are controlled with over the counter medications or some degree of rest, and after ruling out other causes of pelvic pain (ovarian cysts, for example) I can start my patients on pain medications or hormonal contraceptives that significantly improve their pain. That’s the norm. Every once in a while, however, I come across a patient who has REALLY awful pain with cycles.
I recently saw a young woman, in her early 20‘s, who came to see me with complaints of periods that were so painful that she was unable to get out of bed for the first 2 days of her cycle. She would load up on prescription pain medication, call off of work and literally lie curled up in a fetal position with hot compresses on her belly to try to ride it out. Some months she could. Other months she would end up in the emergency room needing stronger pain medications. She was frustrated and angry at the course of these progressively worsening periods, and by the fact that every ultrasound she had showed normal anatomy. The pain was disruptive to her work schedule and her relationship. She had pain with intercourse. She had pain with bowel movements. In short, it sounded like endometriosis.
Endometriosis is best described as a condition where the normal lining of the uterus (the kind that comes out of the vagina every month as menstrual blood) ends up lining the pelvis and abdominal cavity. There are a variety of theories as to how it manages to do this, but the take home lesson is that this tissue is stimulated every month by the hormones of the menstrual cycle. It “bleeds” into the pelvis, causing inflammation and scar tissue formation. That is why the treatment to endometriosis almost always involves suppression of these female hormones. This can happen via any form of hormonal birth control, or an injection medication called Lupron. This is also the reason that endometriosis can often cause infertility, through scarring of the fallopian tubes.
I always stress to my patients that I can only clinically assume that they have endometriosis. The definitive diagnosis can only be made surgically. We ob/gyns do not take every person with painful cycles who we think has endometriosis to the operating room just to confirm our diagnosis. Rather, we treat as though it is endometriosis, and if things improve, that can confirm our suspicions. The key to treatment is to minimize the number of cycles that occur.
Every so often, a patient has to be taken to surgery for a suspected endometrioma (ovarian cyst filled with endometriosis tissue) or for pain that doesn’t resolve with medical treatment. Endometriosis can surgically be removed. And this is where things can get really strange. In residency, the mantra that was often repeated to us regarding endometriosis was that the extent of pain does not predict the extent of disease. I have seen patients with debilitating pain taken to the operating room and when upon entering the abdomen, we were hard pressed to find 2 or 3 spots of endometriosis. Then again, there are patients who are having no pain whatsoever who end up in surgery for often unrelated reasons and their pelvis is plastered end to end with endometriosis. It is a medical enigma, no doubt.
For women who have endometriosis, the reproductive years can be challenging. The only definitive treatment is not just hysterectomy, but removal of both ovaries as well, since the ovaries are the source of the hormones of the menstrual cycle. This is not a feasible option for most, because ovaries provide a host of important and necessary functions, especially in younger women. That leaves us with hormonal medical management and surgical management when needed, at least until we understand more about this disease.
