Although IBD symptoms are generally similar across the sexes, the condition can cause certain hormonal, reproductive, or sexual challenges for those of the female persuasion.
Here’s what you need to know about female-specific IBD symptoms, and what you can do to help ease the way.
Feel like your menstrual cycle has gotten a bit intense? You’re not imagining it, and nor are you alone. A 2018 study found that women with IBD do often suffer worse symptoms during their cycle, including more severe abdominal pain and increased bowel movements.
A 2020 study (Lahat) from Israel also observed a heightened severity of menstrual symptoms in female IBD patients, including:
- Abdominal pain
- Leg swelling
- Low back pain
- Excessive urination
The study did note that a few of these symptoms (low-back pain, abdominal pain, pelvic pain, and fatigue) were especially exacerbated in patients on biologics or those who smoked cigarettes.
IBD has also been associated with changes to flow and duration and irregular periods. These changes are often temporary, though. A 2014 study (Saha) noted that with treatment and management of IBD, many patients’ cycles did return to a more regular state.
It should be acknowledged that sexual dysfunction with IBD is quite common. Some 54% of female IBD patients reported they suffer some kind of sexual dysfunction or decreased libido, whether driven by the stress of managing the condition, depression, increased disease activity, the side effects of medication, or the impact of surgical procedures.
According to a 2020 study, women with Crohn’s Disease had increased difficulty achieving orgasm and increased odds of dyspareunia – meaning persistent pain from intercourse. This could present as a broader discomfort or a more localized sharp, searing pain. An earlier 2015 study did find these were both worse in patients with active disease than patients in remission, so management of the condition itself should be enormously helpful.
There are a few ways to reduce pain during intercourse in the meantime, including water-based lubricants, engaging in longer foreplay, enhanced communication with your partner, and finding more comfortable positions to minimize any potential pain.
Female IBD patients need to be aware that there is a slightly higher rate of endometriosis in patients with IBD.
Endometriosis is a gynecologic disorder that can contribute to lower abdominal pain during menstrual cycles or ovulation, and cause symptoms mimicking IBD as well as pain during sexual intercourse and problems with fertility.
Endometriosis is usually treated by hormonal therapy (birth control pills), but sometimes surgery may be required.
IBD & Pregnancy
With proper planning and care, many with IBD conceive, carry and deliver without difficulty. However, there are certain factors to take into account.
The first important factor when it comes to pregnancy is your disease state at the time of conception.
For the best outcomes in pregnancy with IBD, The Crohn’s & Colitis Foundation suggest waiting to conceive until you have been in stable remission for at least 3-6 months. This is because you’re statistically more likely to maintain remission during pregnancy if you are in stable remission at the time of conception.
Those who conceived during active disease have a much higher chance of flare-ups during pregnancy, which can lead to worse outcomes.
You should also plan to conceive when you have not just started a new medication, and when you are not taking steroids.
Other Risk Factors
IBD is unfortunately associated with an increased risk of miscarriage, pre-term births, and underweight newborns. This is much more likely if you experience active UC or Crohn’s disease flare-ups during pregnancy which can cause a lack of vital nutrients or being underweight.
Whether in remission or not, always work closely with your doctor and dietician to ensure you’re absorbing enough nutrients for your own health and the health of your baby.
J-pouch surgery has also been linked to adverse events in pregnancy. However, a 2020 study found that 88% of pregnant patients, who had previously undergone surgery for colitis at a young age, still had healthy, successful pregnancies.
IBD Medications During Pregnancy
Medications to avoid when pregnant:
- Methotrexate can cause birth defects and miscarriage
- Thalidomide can cause birth defects and fetal deaths
Corticosteroids are recommended only in cases of active flares, as there is some concern about their effect on a developing embryo or fetus (such as a cleft lip or palate, although this has not been confirmed in studies, and somewhat increased risk of diabetes of pregnancy and risk of having larger babies who may preclude vaginal delivery).
According to ECCO guidelines, the antibiotics metronidazole and ciprofloxacin should only be taken after the first trimester, due to similar developmental risks as corticosteroids.
Although ECCO guidelines also suggest discontinuing anti-TNF therapy around the 24th week of pregnancy, recent data from large registries argue against discontinuation of biologics in the third trimester by showing no adverse events of continuing, and a slightly increased rate of disease flares and premature deliveries in patients discontinuing the drugs in the third trimester.
Immunomodulators and thiopurines are considered low-risk therapies during pregnancy, but newer small-molecule drugs such as Upadacitinib, tofacitinib, and ozanimod are all still contra-indicated and need to be discontinued until more data on their safety is available.
The largest study on fertility in women with IBD found that fertility was reduced in young women with UC, although this did improve with age and eventually reached normal levels.
It’s a little more complicated for those with Crohn’s disease. Women with CD may suffer reduced fertility due to a diminished ovarian reserve – a condition in which the ovary loses its usual reproductive potential. However, compromised fertility was only found in specific circumstances, such as long-lasting active disease.
Corticosteroid medication could impact fertility, as it can cause irregularities in the menstrual cycle, as well as a lack of menstruation altogether. This may last months at a time but will return to normal after the dose is reduced or discontinued.
If you’ve been struggling to conceive for 3-12 months, it may be helpful to see a fertility specialist who can take your condition into account and help you navigate the process.
Most women with IBD can have natural, vaginal deliveries – especially those with inactive or moderate disease states. However, a C-section is considered the safer option for those with abscesses, fistulas, active perianal disease, or those with an ileoanal pouch or a J-pouch.
This is, of course, a decision that should be made carefully with your physician.
Iron Deficiency Anemia in Women with IBD.
Those with IBD have an increased risk of developing iron deficiency anemia, as the condition can impact iron absorption, or cause a low appetite or increased bleeding. Women with heavy periods may also lose more blood cells than the body can produce.
If you’ve experienced any of the following signs, it’s recommended to have your iron levels checked and discuss management options with your doctor and/or nutritionist.
Signs of anemia to look out for include:
- Shortness of breath
- Paler skin than usual
- Fatigue /weakness
- Cold hands
- Faster, slower, or irregular heart rate
The way we perceive ourselves physically is an important part of our relationship with our body and is an often overlooked issue in IBD.
Body image issues can range from a distorted or negative view of our bodies to anxiety about how we look, or simply feeling uncomfortable in our own skin. Our relationship with our body image can have a serious impact on our quality of life, relationships, physical health, and mental well-being. In fact, studies show that those with a negative body image are more likely to suffer depression, anxiety, and even suicidal feelings.
These feelings can be extremely overwhelming on top of having to manage IBD. The first thing to know is that you’re not alone in this. Negative body image may not be spoken about enough in the context of IBD but is an issue faced by countless other patients, and these feelings are completely normal and understandable.
Secondly, there are ways to gradually improve your relationship with your body, and this is definitely a worthy endeavor in the long run.
1. Self Care
Devoting some extra time each day to self-care can make a huge difference in self-image and self-esteem.
Self-care is generally considered keeping up with basic hygiene, staying hydrated, and getting enough exercise. But it can also be deeply personal and consist of whatever makes you feel more comfortable and at ease in your body – whether it’s a bubble bath, a massage, your skin-care routine, or 20 minutes on the yoga mat. If it makes you feel good, do it.
2. Be kind to yourself
Remember that your body has gone through an immense battle, and try to be as kind as possible in terms of self-talk and honoring your body’s needs, whether this is for certain foods, for movement, or even for a day hiding under the covers. Keep track of your spoons, get comfortable putting your own needs first, and most importantly, remember no one is perfect. It’s not your job to be or look perfect either.
3. Extra Support
Many have found counseling or therapy helpful in healing their relationship with their body. You can also share the burden with trusted friends and family. Sometimes just expressing our doubts and insecurities can be immensely helpful.
There are also many online IBD Support Groups that are immensely supportive, and full of other patients who will just get it.
4. Practical Changes
Corticosteroids can cause side effects such as weight gain, acne, psoriasis, or moon face. If you’re experiencing any of these effects, you can always speak to your doctor about your concerns and discuss other treatment options.
Malabsorption and a lack of nutrients can cause weight loss in IBD. If you’re struggling to keep the weight on, it’s best to seek the advice of a registered dietitian who can ensure your specific nutritional needs are being met.