Inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, causes chronic (long-term) inflammation and leads to symptoms like frequent diarrhea, abdominal pain, and nausea. For women, IBD symptoms can go beyond the digestive tract and affect menstruation (periods), fertility, and pregnancy.
IBD affects men and women similarly. However, there are some sex-related differences in the types of symptoms you may experience, how the disease progresses, and how you respond to treatment. This includes:
- Diagnostic delay: Women are more likely to experience delays in receiving an accurate IBD diagnosis. Research shows it can take several months longer for women to get a diagnosis compared to men, partly due to misinterpreting symptoms and systemic bias within the healthcare system.
- Age of onset and IBD type: IBD diagnoses are most common for people 15-35 years old. Crohn’s disease is usually diagnosed in women after puberty, especially in their 20s and 30s. Ulcerative colitis tends to be more common in men, particularly after age 45.
- Extraintestinal symptoms: Women tend to experience more symptoms outside the digestive tract, which is the tube that runs from the mouth to the anus and is responsible for breaking down food into energy. These additional symptoms may include joint pain, eye inflammation, skin conditions, and fatigue.
- Hormonal influences: Changes in estrogen and progesterone levels throughout the menstrual cycle, during pregnancy, and when taking hormonal contraceptives, such as birth control pills, can affect inflammation in the digestive tract, potentially triggering flares or worsening IBD symptoms.
- Treatment responses: Hormonal differences may influence how women respond to IBD medications, though research is still limited. Some evidence suggests women may experience more side effects, are more likely to stop treatment due to intolerance, and are less often prescribed long-term management options, which can affect their health over time.
While IBD causes similar digestive-related symptoms in men and women, women may experience additional symptoms, such as:
- Irregular periods: IBD can affect your menstrual cycle, causing irregular or missed periods and heavier bleeding.
- More menstrual symptoms: Women with IBD are more likely to experience premenstrual syndrome (PMS) symptoms, such as menstrual cramps, headaches, and bloating. Many also experience worsening IBD symptoms during their period, such as more frequent diarrhea or severe abdominal pain.
- Joint pain: IBD may cause joint pain, swelling, or stiffness in women, especially during flares. The most commonly affected areas include the knees, ankles, wrists, and small joints of the hands. Some may also develop inflammation in the spine or pelvis (sacroiliac joints), which can cause lower back or hip pain.
- Pain during sex: Severe inflammation in the pelvis or rectum (the last section of the large intestine) can cause painful sex.
- Urinary symptoms: Frequent urination, discomfort or pain when peeing, or incontinence (leaking urine) can occur in women with IBD.
Women can experience IBD-related challenges or complications, such as mental health and physical conditions. These may include depression, bone weakness, and difficulty getting pregnant.
Sex Specific Risks
Women or people born female who have IBD may have a higher risk of these complications:
- Iron-deficiency anemia: Heavy menstrual bleeding, intestinal bleeding from IBD, and difficulty absorbing iron from food can increase the risk of iron deficiency anemia, leading to symptoms like fatigue, weakness, dizziness, brittle nails, rapid heart rate, and shortness of breath.
- Mental health concerns: Women with IBD are more likely to experience anxiety and depression than men. Hormonal changes, body image concerns, and social factors, such as stigma and the impact of IBD on daily life, may contribute to this increased risk.
- Fertility challenges: IBD can make it harder to conceive, especially during active flares. Most people with well-managed IBD can still have healthy pregnancies, although your doctor may recommend medication changes during pregnancy.
- Pregnancy complications: Active IBD during pregnancy may increase the risk of miscarriage, preterm birth, or low birth weight. During pregnancy, some people notice their symptoms improve, while others may find they become more intense.
- Bone loss and osteoporosis: Up to 60% of people with IBD have lower-than-average bone density. Bone loss is more common in women, who are more likely to develop osteopenia (low bone mass), osteoporosis (brittle, porous bones), or osteomalacia (softening of the bones). Long-term corticosteroid use, chronic inflammation, and vitamin D deficiency can all increase the risk of developing osteoporosis.
General IBD Risks Women May Experience
General health conditions and challenges a woman with IBD may experience include:
- Dehydration: IBD symptoms like persistent diarrhea or vomiting can cause your body to lose fluids more quickly than you can replace them, leading to dehydration.
- Malnutrition: Inflammation in the digestive tract can make it harder for your body to absorb nutrients from foods, leading to nutritional deficiencies or malnutrition. This can cause weight loss, fatigue, loss of muscle mass, and weakness.
- Toxic megacolon: A rare but serious complication of chronic inflammation that causes the colon to expand and stop working. In severe cases, toxic megacolon can become life-threatening.
- Increased risk of colon cancer: Chronic inflammation in the digestive tract can raise the risk of colorectal cancer. People with ulcerative colitis, a family history of colorectal cancer, or a history of colonic strictures have an even higher risk and may require earlier or more frequent screenings.
- Other inflammatory conditions: Ongoing inflammation and changes in immune system activity with IBD can increase the risk of developing other inflammatory or autoimmune conditions, such as rheumatoid arthritis, psoriasis, and liver conditions like primary sclerosing cholangitis.
While IBD is a chronic condition, it’s possible to manage it by following your treatment plan and adopting healthy lifestyle choices.
Consider these tips to manage your IBD:
- Track your symptoms: Use a journal or app to log your IBD symptoms, menstrual cycle, diet, and stress levels. Tracking your symptoms can help you identify potential triggers and adjust your lifestyle or treatment plan as needed.
- Stick to your treatment plan: Medications, including anti-inflammatory drugs and immunosuppressants (medicine that stops overactive immune systems), can help control symptoms and reduce the frequency and severity of flare-ups.
- Plan for pregnancy: If you’re planning to have a child, talk to your doctor about managing your IBD before and during pregnancy.
- Maintain proper nutrition: Eat a balanced diet to support your overall health and manage IBD symptoms. If you’re unsure about what to eat or have concerns about getting the proper amount of nutrients, consider speaking with a registered dietitian for personalized guidance. A registered dietitian is a health professional who specializes in diet and nutrition.
- Manage stress: Stress-reducing activities, such as meditation, yoga, or regular exercise, can help improve your mental well-being and may reduce or prevent flare-ups.
- Seek support: Living with IBD can take a toll on your emotional and physical well-being. Talking with a mental health counselor or joining an IBD support group may help you manage the daily challenges of IBD and improve your quality of life.
If you don’t have an IBD diagnosis and are experiencing the following symptoms, it’s important to seek medical care:
Receiving a diagnosis and starting treatment can help protect your digestive health and prevent serious complications.
If you already have an IBD diagnosis, check in with your doctor if your symptoms change, worsen, or stop responding to your usual treatment. Let your doctor know if your periods become irregular or more painful, or if you’re having trouble getting pregnant. These may be signs that your treatment plan needs adjusting.
Seek immediate medical attention if you develop symptoms of complications, such as:
- Severe abdominal pain
- Fever
- Vomiting blood
- Rapid heartbeat (tachycardia)
- Continuous or persistent rectal bleeding
IBD can affect women differently compared to men. Delayed diagnoses, period changes, fertility concerns, joint pain, bone loss, and a higher risk of anxiety and depression are common in women with IBD.
Tracking your symptoms, following your treatment plan, and maintaining regular contact with your healthcare team can help you better manage IBD symptoms and improve your overall quality of life.
