DEAR DR. ROACH: I’m a woman who had terrible experiences with menstruation. I’ve probably seen two dozen different gynecologists, and I complained to every one of them about my painful periods and …. nothing. Not even a painkiller was prescribed.
Most of them seemed to think debilitating pain is part of being female. This pain is so bad that it is incapacitating. I’ve missed work and school because of it. I would throw up anything that I tried to eat or drink for a full day. It drives me nuts that everyone can empathize with a migraine headache, but no one has empathy for someone with menstrual cramps.
Once, I told the nurse practitioner that I had a really painful episode, and she asked, “Why didn’t you come into the office? You might have ruptured something.” Had I come to the office, it would have required an ambulance. By then, I had heard about endometriosis. I asked her if she thinks I have it, and she said, “Oooh, you probably do. You’d have to get laparoscopic surgery to know.”
Well, that would have been great to know 40 years ago. I could have gotten the surgery and spared myself years of agonizing pain. Did I explain myself incorrectly all those times when talking to the doctors? It’s too late for me (thankfully, I’m past all that), but please help us learn how to talk to our doctors to get through to them. These are not your garden-variety cramps that can be treated with Midol. — S.N.
ANSWER: I am very sorry to hear of your experiences, and I’m glad you have written to try to help others avoid this outcome. While it is true that most women have discomfort during menstruation, some women experience a lot more than discomfort, and what you had is not typical at all for dysmenorrhea.
When a woman has pain that doesn’t respond to first-line treatments, such as a heating pad and regular exercise, most primary care doctors, including gynecologists, consider pain medication as well as a trial of hormone treatment (such as combined oral contraceptives — “birth control pills”). I’m honestly surprised you weren’t ever recommended these treatments, even though I have heard horrific stories of pelvic pain being ignored before.
If pain medication and hormone treatment are inadequate, it’s time for a primary care doctor like me to refer to a specialist. The specialists I choose are gynecologists who have special expertise and training in pelvic pain. They consider multiple reasons for this persistent pain, including adenomyosis, fibroids and endometriosis.
With endometriosis, there are lesions outside the uterus near the ovaries, pelvic ligaments, bladder or the lining of the pelvic wall in the cul-de-sac (an anatomical structure in the pelvis). Just like the endometrial tissue in the uterus, these lesions outside the uterus react to hormone levels, and at the time of menstruation, they can typically cause pain or pressure, bowel or bladder symptoms, painful sex, fatigue, and other symptoms.
While I can’t be sure you had endometriosis, it is the most likely diagnosis. The diagnosis is often supported by an ultrasound, not usually by surgery at first. Medical treatments for endometriosis (such as GnRH-analogue drugs or aromatase inhibitors) are generally preferred to surgery, but surgery is still necessary sometimes.
I am concerned about your having seen two dozen gynecologists. One should have been enough to treat you with increasing levels of aggressiveness. I’d advise women in your situation to seek out a gynecologist with expertise in pelvic pain.
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Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Dr., Orlando, FL 32803.
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