For women, the symptoms of Crohn’s can include pain during sex, fertility problems, missed periods, and a host of other issues. Here are a few things to be aware of.
1. Crohn’s disease in women tends to fluctuate along with hormone levels.
A rise and fall in hormone levels appears to affect Crohn’s symptoms. For example, “Women with Crohn’s disease may report more bowel movements and cramping around the time of their period,” says Marla Dubinsky, MD, codirector of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai Hospital in New York City and the president and cofounder of We Care; the organization is devoted to improving the quality of care for all women with IBD at every stage of motherhood, from planning to post pregnancy.
2. Crohn’s disease is associated with missed periods.
Crohn’s disease may worsen premenstrually and during menstrual periods, but missed periods — a condition called amenorrhea — can also be tied to the disease. “This may occur due to Crohn’s disease medications, weight loss, hormonal changes, or problems with absorbing nutrients,” says Felice H. Schnoll-Sussman, MD, a gastroenterologist, an assistant professor of clinical medicine at Weill Medical College of Cornell University, and the director of the Jay Monahan Center for Gastrointestinal Health in New York City. “Lack of menses isn’t uncommon in a woman with active Crohn’s disease.” Young girls with Crohn’s can be affected, too. According to a review published in January 2022 in the journal Digestive and Liver Disease, IBD-related inflammation can interfere with sex-hormone production, which may delay puberty.
3. Body image issues are more common in women with Crohn’s disease.
Women with Crohn’s disease may be more likely to be dissatisfied with their body than men with the disease, according to a review published in the February 2019 issue of BMJ Open Gastroenterology. Exactly why is unclear, Dr. Dubinsky says, but the Digestive and Liver Disease review suggests that surgical scars, stomas, and weight fluctuations may take a toll on women’s body image.
4. Having Crohn’s disease can affect a woman’s sex life.
“Crohn’s disease in women can affect the vaginal area,” says Robynne Chutkan, MD, a gastroenterologist at the Digestive Center for Wellness in Chevy Chase, Maryland, and the author of several books, including Gutbliss, The Microbiome Solution, and The Bloat Cure. “In addition to making life in the bathroom more challenging, it can complicate life in the bedroom.” Specifically, Crohn’s disease may cause swelling in the genital area in women. The development of fistulas — unwanted passages between two organs — can affect sex, too. This is particularly true for rectovaginal fistulas. “Some women with Crohn’s disease develop a fear of intercourse because of pain, and others may avoid sex because of fear that stool will leak,” Dr. Chutkan says. Some women may avoid dating altogether, because they’re embarrassed by the symptoms, including gas or frequent trips to the bathroom. “If your doctor doesn’t mention it, it’s up to you to start the discussion,” Chutkan says. It’s possible to have romantic relationships and a healthy sex life with Crohn’s disease.
5. Fertility may be a concern for women with Crohn’s disease.
“If you’re in remission from Crohn’s disease [when trying to become pregnant], you’ll likely be able to conceive and have an uncomplicated pregnancy and healthy delivery,” says Dr. Schnoll-Sussman. If your Crohn’s disease is active, though, it may be more difficult to conceive and have a healthy pregnancy. “Discuss your plans with your doctor well in advance of conception to help assure a healthy pregnancy,” Schnoll-Sussman says. Some Crohn’s medications are unsafe for a developing baby, according to the Crohn’s & Colitis Foundation. That’s why it’s so important to talk with your doctor before you start trying to get pregnant. Infertility can be caused by other Crohn’s-related issues also, according to a study published in 2021. The study surveyed 533 patients, 90 percent of whom were women with IBD, and found that half of them didn’t have children, due in significant part to education, medical advice, impaired body image, or sexual dysfunction. Additionally, a study on IBD’s impact on women reported that endometriosis, which can cause infertility, is more frequent in women with IBD than without.
6. Crohn’s disease in women can affect pregnancy.
Just having Crohn’s disease, even if it’s in remission, slightly increases the possibility of pregnancy-related issues, such as miscarriage. “The gastrointestinal tract and the reproductive tract are next-door neighbors,” Chutkan says. “This means that what happens in one can affect the other.” The Digestive and Liver Disease review found that women who begin their pregnancy with active disease have a higher incidence of infants with low birth weight. But, for some women, Crohn’s disease actually gets better as a result of the normal changes to the immune system caused by pregnancy. It’s important to work with your gastroenterologist as well as your obstetrician-gynecologist to determine which Crohn’s disease medications are safe to take during pregnancy. If you stop all medications and then have a flare, being pregnant can make it more difficult to get the disease back under control, according to the Crohn’s & Colitis Foundation. The good news is that a review published in 2022 in the journal Clinical Gastroenterology and Hepatology found that biologics weren’t associated with negative pregnancy outcomes, such as low birth weight or premature birth. Women with Crohn’s may also be at greater risk of nutritional shortfalls during pregnancy than women who don’t have IBD. “The ability to absorb nutrients can be compromised in Crohn’s disease, so you have to eat well during pregnancy, because the baby only has access to nutrients you absorb,” Chutkan says. Once the baby arrives, know that certain Crohn’s drugs aren’t advised for women who are nursing. If you want to breastfeed, work out a medication regimen with your doctor to minimize the risk of flares during this postpartum period.
7. Crohn’s disease may be linked to cervical cancer risk.
Women with Crohn’s disease are more likely to develop precancerous changes in cells in the lining of the cervix (cervical dysplasia), which is a known risk factor for cervical cancer, according to a study published in the journal Clinical Gastroenterology and Hepatology. Another study, published in 2020, found that being on an immunosuppressant medication for IBD can make you more susceptible to catching human papillomavirus, which can lead to cervical cancer, because of a suppressed immune system. This makes it important to get regular Pap tests, Schnoll-Sussman says.
8. Women with Crohn’s disease may be at higher risk of anemia.
Anemia due to blood loss is a condition marked by low levels of iron in the blood. In women with Crohn’s disease, the blood loss during menstrual periods diminishes iron stores, as can any gastrointestinal bleeding that results from the disease. What’s more, long-term intestinal inflammation from Crohn’s can make it harder to absorb iron. Talk with your doctor about whether you might need iron supplements.
