Our last blog post on menstrual health and contraception for women with IBD was well received, so we’re back with more information–this time, on all things fertility. An important aspect of this topic that is often overlooked is how female psychology can play into reproductive health, including sexuality and body image, which can influence one’s likelihood to become pregnant. So while we address these issues, we must also consider how stigma has a part to play in how women and people assigned female at birth (AFAB) navigate these experiences.
In scientific literature, distinctions between sex and gender are rarely made when studying populations. Therefore, much of the research we will be addressing to explore the relationships between IBD and the health of AFAB people and women is combined, such that we can’t distinguish between biological connotations and gender-based concerns. To this end, a lot of research tends to utilize the terms female and woman as equal statements. There is a lot more behind these terms than what is expressed when they’re used in research, but we will often refer to these terms to stay aligned with the research.
It’s important to note that not everyone wants children and that the statistic is elevated for those with IBD: 14% of women with ulcerative colitis and 18% with Crohn’s disease are voluntarily childless compared to only 6% of healthy women . Yet up to 42% of people with IBD fear infertility, making it a common concern for IBD care . So if you or someone you know has IBD and worries about how it could affect their likelihood of getting pregnant or the health of their future offspring, keep reading!
So, what are some reasons why you might struggle with fertility?
Reduced fertility is a valid concern for those with IBD. It may be the result of J-pouch surgery, also known as an ileal pouch anal anastomosis (IPAA). This is a common surgical procedure for people with ulcerative colitis whereby a region of the colon is removed and connected to the small intestine. It can be a life-saving measure that significantly improves quality of life. It’s typically performed when medication doesn’t successfully control a patient’s ulcerative colitis, but it may increase the risk of fertility to 48%, which is around 3 times higher than before the surgery [3,4]. These are not insignificant numbers, yet how and why this occurs is still poorly understood. Some scientists say that perhaps pelvic surgery or adhesions and scarring are damaging reproductive organs to the point that infertility is possible [2,5]. As a reflection of this, it’s been suggested that less invasive approaches to IPAA surgery (like a laparoscopic procedure) or abdominal surgeries that don’t touch the pelvis may help reduce the risk of infertility .
There are many other factors which may contribute to fertility issues beyond surgery, including pelvic inflammation, depression, lower libido, and poor nutrition can also influence fertility. It has even been proposed by a small study that women with Crohn’s disease have a lower reserve of eggs in their ovaries during active disease, compared to women in remission who experience infertility at a rate similar to the general population (5-14%). 
After dealing with fertility concerns, many prospective parents may be curious how their IBD may affect their pregnancy. To increase the likelihood of a healthy planned pregnancy, it is generally recommended to have at least 3-6 months of IBD remission . This is important because research shows active disease can lead to preterm birth, miscarriage, stillbirth, and low birth weight . However, it’s not always possible or desired to be in remission before conceiving, which just emphasizes the importance of a specialized obstetrician to follow a pregnancy involving a case of IBD.
There are other reasons why women with IBD may not have children, besides how their disease affects their health: a lot of these people struggle with body image and sexual health. On top of how surgery, medication, energy, libido, body image, and mood can all be impacted by IBD, one study found that 50% of women and 33% of men with IBD had worse sexual function after being diagnosed [2,7]. Therefore, it’s important that patients and their medical teams don’t overlook the psychological factors at play. The bottom line is that anyone with IBD who wants to get pregnant or wants to improve their sexual and reproductive health should have discussions on these topics with their care team. 
It’s time that gastroenterologists and obstetricians/gynecologists take a more personalized approach to supporting women and AFAB people with IBD, and that starts with making sure that their fertility concerns are addressed appropriately. Injoy wants to be part of the solution to improving your quality of care. With Injoy you can track changes in your mood, lifestyle, and symptoms, all in one place. Helping you stay on top of your gut health while navigating your fertility journey.
While fertility is an important consideration for healthcare providers to address, the work doesn’t end there; if a patient with IBD becomes pregnant, there is an additional set of topics to discuss. If you’re curious to learn more about this stay tuned for our next blog post!
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