I had a call the other day from one of my favourite diabetes HCPs who is writing about diabetes and female sexual health. I wanted to shout ‘Halle-fucking-luiah!’ but didn’t because I am polite and never swear.

Anyway. The reason I was so excited to hear this is because when it comes to diabetes and sex, women rarely get a look in. Let me reframe that. When it comes to information about diabetes and sexual health, women rarely get a look in. (Hopefully women with diabetes who are wanting sex are getting plenty of looks in…so to speak…Yeah, this is not going to be awkward at all, is it?)

When talking about the complications of diabetes, erectile dysfunction*** frequently is mentioned. It is actually one of the things that often get men to the doctor because, well, because…erectile dysfunction. There is information about it and it is a well acknowledged complication of diabetes in men.

But women also report problems with sexual function, yet there is very little information about it and it is spoken about very, very rarely. Or, when it is, it’s discussed around changes in sexual function relating to menopause, which may be an issue for all women – diabetes or not. I guess the thinking is that ‘this is when it is likely to be a problem, so let’s talk about it now’, which doesn’t really help those who may have concerns with sex and sexual function earlier than menopause.

So today, let’s talk about women’s health and diabetes – all of it, including the sex stuff.

(For the record, there is no kissing and telling in this piece. There will be no personal sharing of sex stories. This is for everyone’s benefit! Plus, I learnt that it is not cool to discuss my sex life in a public forum after I once mentioned in a talk to a group of first year med students that I hypo pretty much every time after sex, and then made some silly comment about it being because my partner was so good in bed. This would have been fine if it all stayed in the room. The next night, when out for dinner, a group of Uni students came up to me and told me that they had been at my talk the day before and it was great. Then they looked at my husband who was innocently eating a plate of pasta and one of them said ‘Well done, mate.’ I was mortified. Anyway, let’s move on…)

So, what is out there now for women who want some information about diabetes and sex? Well, while working at Diabetes Victoria we developed a nifty and gorgeous looking booklet which talks about contraception choices. It’s called Sexual Health and Contraceptive Choices for Young Women with Type 1 Diabetes, and I can’t for the life of me find it online, but if you can get a copy, it’s terrific!

There are also some great Australian resources available on diabetes and pregnancy – both for women with type 1 and type 2 diabetes – which provide information about pre-conception planning as well as what happens after conception, during the pregnancy, during delivery and post-partem.

There is some (limited) information about diabetes and breastfeeding. (So wish there had been more eleven years ago because, seriously, I bumbled my way through for almost 24 months and it was horrid at times, diabetes-wise…)

But where is the stuff about everyday diabetes and women’s health and sex – not necessary tied up with trying to get pregnant. (We’ll ignore the ‘tied up’ comment there, okay?)

On the day I was diagnosed, a lovely diabetes educator told me that sex is exercise. Exercise often causes hypos. Hypos are not fun. Not fun kills the sex stuff. Moral of story – keep jelly beans beside bed. I was terrified that I was going to pass out during sex and that it was going to be unpleasant for everyone involved. (Not that there would be a cast of thousands…)

Yawn – it was boring information and it made me think that in future, sex was going to very unsexy. What I wanted to hear was ‘you absolutely can still have sex and, if you want to, you absolutely should. There are some things you might want to consider such as the possibility of going low… I’m talking about your blood sugar, get your mind out of the gutter, Renza, and wipe that smile off your face… so Nutella body paint is a good idea.’

Now that would have made me smile, think of Nutella as a medical necessity and therefore how diabetes now justified me keeping a jar of Nutella by the bed. And on the kitchen table. In the bathroom… basically anywhere! As an emergency contingency, of course.

No one ever spoke to me about what orgasms may do to my BGL. Nor was I told much (in fact, anything!) about how high BGLs might impact on sexual function.

And then there is the minefield that is body image and diabetes, and thinking about how we feel about ourselves and its impact on how much we want to have sex. Or how it makes us  feel when we are actually having sex.

Plus, the visible signs of out so-called invisible illness impact on how we feel about undressing in front of someone. I have scars all over my abdomen and hips from heeling pump sites. There is usually a CGM sensor strapped to my arm and a pump cannula in my tummy or hip. There are dregs of tape from old sensors and sites and sometimes tiny bruises. There are tubes and a little vibrating machine (pump, people…I’m talking about my pump).

All of these things point to the fact that I am not perfect and that my body is not perfect and that I need devices and drugs to keep me ticking along. This makes me feel crap at times, wonder what my partner is thinking and want to hide all the reminders that I am not a perfect woman away. This sucks even in my situation where I am married and have had the same partner since diagnosis. Add to that the idea of exposing and explaining all this to someone new and you bet that will impact on how one feels about one’s body and the very idea of sex.

I remember being warned a million times about how women with diabetes MUST PLAN PREGNANCY. And this is excellent advice. However, it made me so terrified of getting pregnant with a sub-perfect A1c. I learnt that fear is an absolute libido-killer. Even when pregnancy would have been welcomed, I was terrified to fall pregnant before I’d been given the green light by my endo.

…which for a while made me feel like there were more than just the two of us in the room trying to make a baby when we were…well…trying to make a baby.

My diabetes loomed overhead, and every moment, I was petrified of my BGL. I started pondering ridiculous things like ‘If I conceive right now and my BGL is not in range, what will that mean? Is it possible that my baby may not have eyelashes if that happens?’ Way to go being drawn out of the moment and into a weird space of imagining babies without eyelashes and how they would hate me forever and ever, and never be able to wear mascara.

So, who do you talk about if you want to have a chat about diabetes and sex? I have never ever been asked about my sexual health from any of my healthcare professionals. Of course there have been discussions about contraception and pregnancy planning and actually being pregnant. But no one has ever said ‘Does your diabetes in any way impact on how you feel about sex? Or do you think diabetes might impact on actually having sex?’

For the record, (and this is a personal bit), I did find that my attitude to sex changed after I was diagnosed. I am sure that was connected to how I felt about my body, so there was some psychological stuff I needed (and continue) to work through, but there was also a noticeable difference in actual function and how I felt. I couldn’t find any information about it, so naturally, thought it was just me.

Of course, it wasn’t. And as soon as I spoke to a group of women the same age as me who were all experiencing similar things, I felt heaps better. But it took me a long time to find those women and feel comfortable speaking about it (yay for prosecco!).

I don’t really have any answers in this, but I wanted to write to start a discussion. I know of many women who say that they believe diabetes has an impact on their sex life – both physically and emotionally. Also, I have come to understand that if it is an issue for one, it is usually an issue for many. Anything anyone want to share? Feel free to do so – anonymously if easier.

***LANGUAGE DIGRESSION

Erectile DYSFUNCTION? Can we please come up with a different term for this? Dysfunction sounds like failure – or at least like a penis has failed. It has not.