We Need More Research on People with Diabetes Assigned Female at Birth

April 28, 2021

Written and clinically reviewed by Marissa Town, RN, BSN, CDCES

As someone who lives with diabetes and has a uterus, I can attest to the fact that diabetes complicates the functionality of my entire body. I can also say, without a doubt, that my normal hormonal fluctuations affect my blood sugars in seemingly sporadic and inconsistent ways. But what’s interesting, and frustrating, is that there are not a lot of published studies that focus on female health issues and diabetes.

When I searched in PubMed for scholarly articles using the two phrases “diabetes mellitus” and “female,” eight of the first ten articles were about pregnancy. This is frustrating because pregnancy is a small timeframe in the life of most biologically female people. When searching for “diabetes mellitus menses,” the only article I could find was about decreased fertility as a result of diabetes from the EDIC study.1 To make matters more frustrating, another article in this search was titled, “Reproductive disturbances among Saudi adolescent girls and young women with type 1 diabetes mellitus.”2 These were also BOTH published within the last five years.

If 50% of our world’s population is assigned female at birth, why is it we have not completed more studies about the normal physiology and hormonal changes that occur with biologically female people that last most of their lifetime? Menses occur monthly for most who menstruate, but there is very little published simply on the effects of menses on blood sugars.

Luckily for my fellow uterus-bearing humans, there are some people looking to fill this data gap!

A group of researchers in Germany published an article in September 2020 about urinary, pelvic, and genital tract disorders among biologically female people with type 1 diabetes in Germany.3 The researchers compared a group of 1357 biologically female participants with type 1 diabetes to 6785 biologically female participants without type 1 diabetes.3 Based on these participants, there was a significantly increased risk for biologically female people with type 1 diabetes to have acute vulvitis (inflammation of the vulva), urinary incontinence, and irregular menstruation.3

Dr. Louisa van den Boom, lead author in this study, states the following, “First, the focus should not be on diabetes management alone, but also recognizing and treating additional disorders including urinary system and genital tract disorders.” The authors also state in the discussions section how challenging this will be due to the sensitive nature of the topic and recommend that gynecologists and diabetologists collaborate to help identify and treat these conditions.3

The other good news is that diabetes non-profit Tidepool is working on collecting data from people who menstruate and how it affects their blood glucose levels. They have already completed recruitment for the first part of this study, and hope to collect more data moving forward.

In summary – as biologically female people, we are disadvantaged when it comes to having data on how our bodies’ normal hormonal adventures affect our diabetes. The data that is available shows that we are at higher risk for issues related to our genitourinary system, and we should speak up to our doctors, nurses, friends with diabetes, whomever about what symptoms we are experiencing – no matter how embarrassing it may seem. It can be hard, and I don’t always want to talk about my genitals with people either, but at the end of the day, I want to be healthy and have a good quality of life.

I hope that this helps you feel empowered to do some research, participate in some research and ask more questions to get the most out of your healthcare team. Many of us PWD already take at least one synthetic hormone (insulin!), so hopefully we can get used to talking about  other hormones, too.

    1. https://pubmed.ncbi.nlm.nih.gov/29314138/
    2. https://pubmed.ncbi.nlm.nih.gov/29204256/
    3. https://www.primary-care-diabetes.com/article/S1751-9918(20)30281-3/fulltext