It’s Women’s Health Week here in Australia and once again, Jean Hailes for Women’s Health has been doing a stellar job of talking about women’s health issues that are rarely (if ever) spoken about in the public sphere. As usual, this year’s campaign is presented in a clear, no-nonsense way. Just as it should be.

Shining a light on women’s health issues is critical for a number of reasons. There is still too much stigma associated with women’s sexual and reproductive health, so finding a way to easily speak about the realities of women’s health just makes sense.

Not all women’s health issues necessarily seem relevant to diabetes. But, as ever, diabetes has a way of complicating things, so it makes sense that they are on the list of things covered when speaking with our HCPs.

I honestly can’t remember the last time my GP spoke with me about any sexual or reproductive health issues. Some women see gynaecologists regularly (I see mine every couple of years for a pap smear), but that may not be the case for most women. Surely conversations about contraception, periods and other things should be part of a regular check-up alongside other ‘tick the box’ issues such as blood pressure, cholesterol and weight.

I wish that I had seen an endo from the beginning who had spoken to me about women’s health stuff. I know that it wasn’t until I found the endo I see now – one who I sought out specifically for her expertise in women’s health and pregnancy – that issues such as contraception were even mentioned.

So, here is a (non-exhaustive) list of things that women with diabetes may want to consider chatting to their HCP about – and that HCPs may want to consider speaking with PWD about. (There are links at the end of the post for where to go for further information.)

Periods. To be honest until I was trying to get pregnant, I really didn’t think much about my period. I thought of my lack of regular periods (as in, I would get my period sporadically maybe four or five times a year) as a blessing, rather than something to be concerned about. Of course, once I was trying to get pregnant, I was desperate for a monthly period that I could set a clock to.

No HCP had ever spoken to me about how diabetes would impact on my period – or, probably more importantly, vice versa. I had no idea about how different times in my cycle might affect my glucose levels. In fact, I think it wasn’t until I started wearing CGM and could really see what was going on that I learnt how to manage my insulin doses at different times throughout the month. (And it also explained the two days each cycle I was so freaking low I pretty much took no insulin. Apparently that’s how MY body deals with ovulation..)

If I was diagnosed today, I would be asking a lot of questions about diabetes and menstrual cycles and the best way to adjust my management methods depending where I am in my cycle.

Sex. When I’ve written about diabetes, women and sex before, I’ve noted how at diagnosis no one spoke with me about how diabetes could impact on my sex life. It wasn’t until I started speaking to other women about it that I realised that this is an issue for a number of us.

We need to start talking about women with diabetes and sex in a non-threatening way that normalises the discussion. (Keep an eye out on the work that started with the Kath Barnard’s survey on this important issue.)

Contraception. No one mentioned contraception to me when I was diagnosed. I was twenty four, engaged to be married. Surely both the endo and CDE I saw the day I was diagnosed realised that I was having sex, or considering it after I was married. (I really, really hope that they didn’t think that they didn’t need to speak about it with me because we weren’t married yet…because it was only 20 years ago and there’s no place for puritan attitudes in healthcare. Plus, that ship had sailed. A long time before.)

At the time, I was on the pill, but there was no discussion about the best form of contraception for me relating to diabetes, (was there a better pill to be on?), and I didn’t know to ask. Surely, all women of child-bearing age should be asked regularly about  contraception, especially as women with diabetes are so often told about the importance of avoiding unplanned pregnancies.

Pregnancy. Thankfully, these days finding information about diabetes and pregnancy is relatively simple. If you know where to look.

But twenty years ago, when I was diagnosed, the only thing I was told about diabetes and pregnancy (and I think it was only because I asked) was ‘You need to have all your kids by the time you’re thirty’. (Not sure if just scraping in three days before I turned 31 counts there. Probably not. Looks like this deliberately non-compliant palaver has been happening for a while….)

Talking pregnancy and diabetes needs to be done delicately, but it needs to happen. And, ideally, it needs to happen long before pregnancy is even being considered.

Back in 2003 when I was at Diabetes Vic, I coordinated the first diabetes and pregnancy info evening. Over 100 people were squashed into an overheated room in the basement of the old Royal Women’s Hospital. At the end of the night, I was walking around speaking with as many of the people who had come along as possible to see if they had found the evening useful. I walked up to one woman and thanked her for coming. ‘I hope that you found tonight helpful,’ I said to her. She nodded at me, and I noticed she was holding onto a copy of the ‘Can I Have a Healthy Baby?’ booklet that Diabetes Victoria had published with Realty Check and ADIPS the previous year. ‘My daughter has T1D,’ she said to me. ‘She’s only 8, so obviously this isn’t something that is relevant now. But I wanted to know so that when she asks questions I can answer them. I feel really reassured that she can have a baby if she wants one if it’s planned.’ I remember reaching out to her and hugging her (I have no boundaries). ‘Your daughter is so lucky to have you in her corner,’ I said to her. ‘Thank you for coming!’

Fertility. This isn’t the same as pregnancy. It’s not an easy subject – ever – but it is one that needs to be discussed openly and safely. I can honestly say that no healthcare professional has ever discussed fertility with me unless I have raised the issue.

My experiences around fertility have been complex, emotional and quite painful. It took me a while to get pregnant the first time. My irregular periods needed to be addressed (fortunately, that was easy enough with only Chlomid needed), but even once I was having monthly cycles, and apparently ovulating regularly, I could not get pregnant.

When finally did, I miscarried. Miscarriages are common. I know that. But it still sent my spiralling into a really difficult period which took a lot of time and effort to emerge from. I got pregnant and had a baby, and thought that from there, fertility issues would be a thing of the past.

But I think that because miscarriages are so common that sometimes it can be forgotten just how traumatic they can be. My first miscarriage ended my first pregnancy, and the two other miscarriages I had ended those ones. It’s clear that while I seem to be able to get pregnant, keeping those babies growing, safe and alive is not something my body does well. I wanted that explained to me – or at least for someone to speak with me about it.

Diabetes and fertility was never, ever discussed with me, except that I was reassured after each of my miscarriages that I could not blame diabetes for losing the baby. That was a double edged sword because I wanted to know what it was that was stopping me from being able to continue my pregnancies. I would have liked to be able to point at something. Because the alternative is that it’s just another thing my body can’t do properly.

PCOS. I was diagnosed with polycystic ovarian syndrome when I was about 26. I’d been referred to an OB/GYN by my endo because she wanted me to have a gynaecological check-up because we’d started seriously talking babies. My lack of regular periods was flagged as something that needed investigating and an internal ultrasound showed a number of small of cysts all over my ovaries. I had no other symptoms of PCOS, but that was enough for my OB/GYN to speak with me about potential fertility issues once we were ready to start trying for a baby. I had a laparoscopy and they were removed.

Both type 1 and type 2 diabetes can increase the risk of PCOS (more so type 2 diabetes) so this is definitely something to discuss with your healthcare team if you are in any way concerned.

Body image. I don’t even know where to begin with this because body image is such a huge, huge concern for so many women, and I really do believe that diabetes amplifies those concerns. Whether it is the physical signs of diabetes (tech that we wear on our bodies), the psychological side of being diagnosed with a life-long health condition or the emotional toil of having an allegedly invisible condition that we can’t help but see every day, living with diabetes significantly affects how we feel about our bodies.

This is one of the reasons that having a psychologist as part of our HCP team is important, because we need people who are able to ask the right questions and offer support and solutions for dealing with how we see our bodies.

Eating disorders. Diabetes and food; food and diabetes. It’s impossible to separate the two, and for some people, the relationship is complex and very, very difficult. Women with diabetes do have an increased risk of developing an eating disorder, and of course, there are diabetes-specific eating disorders. And, unfortunately, this is another issue that is not spoken about openly.

Menopause. At my last appointment with my endocrinologist, I raised something that I’d not raised yet. ‘What can you tell me about diabetes and menopause?’I asked her.

I’m not going through menopause – I’m not even peri-menopausal yet. But I don’t need a magic mirror into the future to see what lies ahead. And I like to be prepared.

So, there’s something you should know about how I came to see the endo I have been seeing for the last almost-17 years. I was searching for someone who could help with what I really needed, one of them being an expertise in T1D and pregnancy. She was absolutely the right endo for me then. And continues to be now, because recently, she has become an expert in menopause. (I know! It’s like she is a few years ahead of me in her areas of interest and expertise!)

If I’m honest, I’m a little stressed and worried about what menopause has in store for me when it comes to my diabetes, mostly because I know nothing about it. We’ll see how that plays out…

Self-care. Why do women find it so hard to prioritise our own care and take care of our own wellbeing? We do need to get better at fastening our own oxygen masks before making sure that everyone else on the plane has theirs in place.

This might be another reason to consider seeing a psychologist to ask for some tips for how to make sure that we remember to look after ourselves in a way that is healthy, consistent and achievable.

Pelvic floor. Diabetes, as the gift that keeps on giving, can mean our pelvic floor isn’t as strong as it could be. Just as nerves in other parts of our bodies can be affected by our diabetes, so can the ones in our pelvic floor.

(You’re doing your pelvic floor exercises right now, right? Yep. Me too.)

Looking for more info? Have some links…

Here’s the Jean Hailes for Women website for Women’s Health Week.

The rather awesome Mindy from There’s More to the Story has been writing about diabetes and sex over the last couple of months and her posts are a must read. I wish I’d had something like this to read when I was first diagnosed.

Some information about diabetes and PCOS.  This article is about type 1 diabetes and PCOS. And this one is about PCOS and types 1 and 2 diabetes. 

The NDSS Diabetes and Pregnancy website is an absolute goldmine of information about pregnancy and planning for pregnancy. There are different sections for women with type 1 and type 2 diabetes, HCPs and loved ones of women with diabetes.

The NDSS Type 1 Diabetes and Eating Disorders booklet can be found here.

Lots of valuable information for PWD and HCPs at the Diabetes and Eating Disorders Awareness website.