It will come as no surprise to many that there are still certain topics in the world of diabetes that are seen as taboo. They are rarely spoken of, or in the infrequent occasions they are, it is in hushed tones and in close-knit groups.

Women’s sexual health is one of those topics. *

I am going to focus on my own experiences of seeking information, and endeavours to start conversations in the diabetes community in this post. In almost twenty years of advocacy, I’ve learnt that starting and encouraging conversations often means that they become more mainstream. I’ve also learnt that these things take time. I understand the slow burn of diabetes advocacy, and it’s a good thing that I’m persistent and a bit determined.

The first time I wrote about women’s sexual health and diabetes was back in 2016. I really just wanted to highlight that there seemed to be a dearth of information available to women with diabetes who were looking for information about sexual health and sexual function, while at the same time there seemed to be a disproportionate amount of information about men’s sexual function. I was overwhelmed by the response to that post which, really, said nothing other than ‘So uh, where’s the info?’. Dozens of women reached out to me saying that they had been wondering the same thing.

It got me thinking, so I wrote again about what I wish I’d been told when I was diagnosed about sex and diabetes, because at the time, I was told exactly nothing, other than ‘Sex is exercise. You may have a hypo. Eat a sandwich first’. As I wrote in that piece (which you can read here), I then had to work out how to incorporate a sandwich into foreplay.

Women’s health extends beyond sex and sexual function though. Women’s health weeks across the globe do a stellar job of focusing on things like fertility, periods, polycystic ovarian syndrome (PCOS), body image, pregnancy, pelvic floors, eating disorders and disordered eating… But where is the concise, clear, evidence-based information about the intersection of these areas of health and diabetes? When I asked, again women took the time to message me and said they would really like that information.

And then, at the International Diabetes Federation conference in 2019, I stood on stage to speak about this topic. As it turned out, it isn’t only PWDs who are interested in learning more. The session was on at 8.30am on the final day of the conference. When I’d seen the program schedule, my heart sank. Those are the sessions that are rarely attended by more than a few hardcore conference attendees, most people either having a final coffee networking meeting, packing to leave, or already on their way home. And yet, this session was packed to the rafters. It was standing room only, as health professionals, people with diabetes and researchers all clamoured for seats to hear a couple of people with diabetes speak about diabetes and sex. Remarkable!

We write what we know, or what we want to know, so in recent times, I’ve been asking about menopause and diabetes. I’ve reached ‘That Age’, and while it seems that I am not yet peri-menopausal, apparently it is a matter of days before this mythical ‘next stage’ of life descends upon me. We call it ‘the change’, which just sounds terrifying. I’m trying to find evidence, experience and information to understand what I have in store, specifically, how diabetes is going to impact my menopause. Or how menopause will impact my diabetes.

Every time I have written about these issues, I’ve not provided much information. Because there isn’t much. I talk about my own experiences, and my own endeavours to find out more. Here’s the startling, and somewhat disappointing thing: each time, women from around the world reach out to me to say that the post they have just read is the very first time they have ever seen the topic of diabetes, women and sex written about or mentioned in the same sentence. My clumsy, inelegant, blundering attempts to address the issue have been the only place they have found it addressed. I find that disgraceful!

Ways to Start the Conversation

Be prepared. Because many people may feel uncomfortable discussing anything to do with sex and sexual health, even healthcare professionals, knowing what you want to say and what in particular you are looking to have answered, or are concerned about, can really help. Make some notes. I’ve been in the habit of sending questions to my endocrinologist before consultations. This is a pro-tip that means that everyone comes to the appointment prepared and ready.

We are conditioned to feel awkward talking about sex and sexual health. We often completely avoid talking about it, or speak about it and the relevant body parts using euphemisms, instead of being direct and factual. Start saying body part names. It sounds ridiculous, but it helps. Don’t use words like ‘down there’, use vulva and vagina – and learn the difference! If my (at the time) three-year-old could explain the distinction, adults certainly should be able to!

Don’t accept being brushed aside. If you are not getting the answers you feel you need – or not having the discussions the way you want – ask to see someone else.

‘It’s just diabetes’ is not an acceptable reason for any concern about sexual health or sexual function you may have. Look, it actually could be because of diabetes. But that doesn’t mean that you shouldn’t be given advice on how to address the situation. Often women who are concerned with vaginal dryness are told that it’s because of diabetes. That doesn’t help to address this issue, or help you work out how to improve the situation. 

Some people find it easier to discuss sexual health with a female doctor. If that’s the case, ask to see one.

Chat to other women with diabetes, because we know that our peers with diabetes can be a fabulously valuable source of support and real-life advice.

And finally, remember, you are not alone. From my own experience speaking to others with diabetes, the concerns I’ve wanted addressed are quite common - as is so often the case with diabetes!

* I would like to be clear that I am not only talking about cisgender women here, and I would like to apologise for any clunky language that may be considered exclusionary. That is not my intention. I understand that what I am writing about here may also impact transgender and gender nonbinary people with diabetes whose sexual health experiences and need for information may, in some ways, be similar to cis women, but also will be unique. We don’t hear enough from those groups, and I can only imagine that there are even fewer places to find information.