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This week, my socials have been flooded with a topic that rarely gets much of a look in: menopause, and in particular diabetes and menopause.
It’s a welcome change! It was World Menopause Day on Tuesday, and with it came an avalanche of great content shining a light on this particular aspect of diabetes – something that really doesn’t get much coverage at all.
I shouldn’t be surprised that a lot of what I saw was people with diabetes sharing their own stories. These are the trail blazers who could see that there needed to be more awareness, more recognition, more attention to the issue and took matters into their own hands and shared their stories. (I’m looking at you Dawn Adams, you amazing woman!)
Here are just a couple of things that I’ve seen this week:
Dawn’s story at Diabetes UK about managing diabetes with menopausal hormone therapy (MHT, also known as HRT).
And Dawn again here at JDRF – UK with this gorgeous piece about how there are peer networks offering support for others going through perimenopause and menopause.
This Twitter thread from Diabetes UK, highlighting just how they’ve listened to the diabetes community and calls for more research and information about diabetes and menopause. Their Diabetes Research Steering Groups have made the topic a research priority in coming years. That’s what I call being led by the folks you’re representing!
Twitter has joined the chat with a new account focused exclusively on diabetes and menopause with this neat bio: Peer support for those with diabetes going through the menopause – all types of diabetes, all stages of menopause – we’re in it together. You can follow Menopause Mithers here.
Not diabetes specific, but worth a share, is this brilliant Instagram video from Dr Jen Gunter which looks at the origin of the word ‘menopause’ (of course I love this!). Oh, and there’s a whole chapter in her book The Menopause Manifesto about language.
I’ll be linking all of these to The Diabetes Menopause Project post as a one stop easy place for links about menopause and diabetes.
Let’s talk about perimenopause, periods, and diabetes. I’ll just wait a moment while a heap of people log off right now.
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If you’re still here, hi! Shall we go on?
For the first, I don’t know, maybe 12 years I had my period, I had absolutely no regularity to it at all. I could never understand people who told me they got their period like clockwork, because for me the clock worked intermittently. It was less ‘that time of the month’ and more ‘that time of whenever’. Sometimes it came every three months. Sometimes every four and a half. It was a little surprise that showed up without warting when it felt like it, stayed for a few days, was minimally annoying (never particularly heavy and hardly any cramps at all), and then disappeared again, only to appear when it next felt like it. I spoke with my GP, and they weren’t concerned, and told me to celebrate the fact that I didn’t need to deal with period palaver each and every month.
This was all good and well until I was ready to have a baby. A regular period suggests that ovulation is happening regularly and that is kind of important if you need an egg to be fertilised. That wasn’t happening for me. Some fun fertility treatment (‘fun’, in this instance, means ‘frustrating, lots of tears, desperation and wondering why my body wasn’t doing what it was meant to do’), and I managed to get pregnant and have a baby.
And then, from six months or so after I had our daughter, my periods started happening regularly. Like clockwork. It was as though pregnancy had rebooted the reproductive bits of my body and for the last 18 years, I’ve been paying GST on period products every month.
During this time, I learnt that periods and diabetes don’t play nice. I’ve struggle to find patterns in my cycle so as to run different temp basal rates on my pump to accommodate. Anytime I’ve thought I’d nailed it and settled into a neat routine, the next month everything would go haywire. I guess I settled into another routine: a routine of no routine, where I just had to wing it at whatever time in my cycle things started to look a little sketchy. Loop certainly helped. I could see there were days each month when it was working overtime for no apparent reason, but those days didn’t correspond with the days the previous month. Or subsequent month…
And so, that brings us to present day when it’s time for another life transition or whatever euphemism you want to use to avoid using words that distract attention from hormones, uteruses, blood, and vaginas.
The pretty regular cycles have stopped. I’m not back to three or four (and a half) monthly, it’s more like six weeks or three weeks or some other weird timeframe. My period is on the most bizarre schedule now that is, quite frankly, bloody (yes, I know) annoying. And when it does deign to stop by, it either stays around longer (as in days…) or pops in for just a day or two. Or, even worse, seems to be done after a few days, only to return a day afterwards. Truly, it sucks!
I have made an appointment with my gynaecologist to check-in (it’s probably cervical screening time again) and for a check-up. I know that my experiences are in line with what heaps of other diabetes friends have experienced (yeah, we turn to each other because where else is there to go?), but I have a heap of questions to ask, and accept that there may not be answers.
And I’ve spoken with my endocrinologist. I think that I only ever think of my endo as my ‘diabetes doctor’ but really, her expertise in hormones is pretty bloody useful right now. And the fact that she does some work in a menopause clinic is hugely useful!
But here’s the thing. There are not pages and pages of information out there about diabetes and menstruation or diabetes and menopause. Or how diabetes affects your period during perimenopause. In fact, as with so many things that affect those of us dealing with periods (when they start, when they happen and when they stop), there is a dearth of information and very little research. I mean, it’s no surprise, because the patriarchy in health (as everywhere else) is all powerful. (Don’t believe me? Look at the number of resources about, and treatments for, diabetes and erectile dysfunction as compared with diabetes and menstruation or diabetes and menopause…)
Meanwhile, I just keeping trying to work it out, and speak with friends with diabetes to listen, learn and laugh as they share their stories. And watch as we start to open up more and write more and talk more in our own communities and advocate for more attention. Because that’s the story of diabetes community – we start the conversations that need to be had and that sets off a chain reaction where others get on board. So…get on board!
Diabetes and menopause – there are two things that have an image problem! Diabetes’ image problem has been discussed a bazillion times on here and is well documented by others.
And menopause? Menopause is middle-aged women; women who are past their prime and ready to settle down with a pair of slippers and a good book. Women who are a hot mess rather than just hot. Angry old women who are, at best, easily ignored, at worst, are given labels such as the incredibly sexist and derogatory ‘Karen’ thrown at us, especially if we dare demand attention for issues that are important to us. Oh, and we are invisible, apparently.
Well, fuck that. I am none of those things. I am as loud and out there and determined as I have always been. Sure, I like the idea of settling in for the night with a good book and a cup of tea, but I’ve been like that since I was in my twenties. And the anger isn’t new. Being radicalised as a kid does that to you, and I fairly, squarely, and gratefully credit my mother for it.
Turns out that my attention now is being turned to an issue that is one of too little research, too little attention, and too little available information that is relevant, evidence-based and engaging. And that is diabetes and menopause, and perimenopause.
Yes, I’ve written before about before. Missed it? Well, here you go: This time; this time and this time.
If you jump on Twitter now and search the words ‘diabetes’ and ‘menopause’ you’ll find a number of discussions which have been started by people with diabetes who are desperately looking for information to do with the intersection of these two topics. As well as information, people are asking to be pointed to examples of others who have been through it and are willing to share their stories. At the recent #docday° event, the inimitable Dawn Adams from IRDOC gave a rousing talk about why we need to focus more on this issue. (Follow Dawn on Twitter here.)
Here’s the thing: I still get diabetes and pregnancy reminders from my HCPs despite being 48 years old and very clear that having a baby right now (or ever again) is not on my to-do list. Been there, done that, bought the t-shirt and have an almost fully formed adult to show for it!
And yet despite that, I still get reminders about how important it is to plan for a pregnancy, take birth control to prevent it, and make sure that I take folate. Cool. That’s really important information. For women planning to get pregnant (and the birth control bit is important for women looking to avoid it).
But more relevant; more targeted; more person-centred for me is information about perimenopause and menopause.
Just over twenty years ago, when I was looking for information about diabetes and pregnancy, there wasn’t a heap of it. There was, however, a lot of research about it. What we really needed were resources for people with diabetes who wanted information that didn’t look as though it had been written and illustrated in the 1980s. We wanted the evidence-based materials that didn’t scare us. And so, working with other women with diabetes who were the same age as me, and looking for the same sort of information, we made it happen. The diary I published online when I was pregnant added to other stories that were already there. It was hugely reassuring to know that I could find others who were sharing stories that either mirrored my own or suggested the path that mine might follow.
These days, it’s super easy to find stories about pregnancy and diabetes. You don’t need to search too hard to find and follow diabetes pregnancies on Instagram, from pregnancy announcements through to delivery announcements and every twinge, craving and diabetes concern in between.
Less so menopause. Look, I get it. What’s the cute, good news story here? With pregnancy stories, there is a baby at the end – a gorgeous, cooing baby! There is nothing like that with menopause. Despite that, I think there are stories to tell and share. And a community to provide support and lived experience advice.
Right now, there is a chorus of people in the diabetes community who are calling out for this information and talking about the topic. I’m willing to bet that a lot of us were the ones who, twenty years ago, were calling out for decent diabetes and pregnancy info.
I’m not a clinician and I’m not a researcher. I don’t write grants for studies about menopause and diabetes that suddenly put this topic on the research agenda and start to help grow an evidence base. But what I can do is generate discussion and create a space for people to share their stories, or ask for information in the hope that others will answer the call.
The ‘The Diabetes Menopause Project’ isn’t really a thing. It’s a community cry to generate that discussion and some lived experience content. There are some great pieces already out there and I can’t tell you how many times I’ve pointed people to those blog posts and articles. But there needs to be more, and they need to be easier to find.
And so, to start with, here is what I do know is out there. If I’ve missed something, please let me know and I’ll add to it. At least then there is an easy one stop place to find the limited information that is out there. Get in touch if you have something to share.
The Big M – More Taboo Subjects, from Anne Cooper.
Type 1 and the Big-M – a five-part series from Sarah Gatward about her personal experiences of type 1 diabetes and menopause from Sarah Gatward
Managing Menopause and Type 1 Diabetes – also from Sarah Garward, published by JDRF-UK
Menopause + Type 1 Diabetes – Ginger Viera’s writing for Beyond T1
I hosted a Facebook live with endocrinologist, Dr Sarah Price where, amongst other issues, we discussed diabetes and menopause
Research!! This journal article looks at the age menopause occurs in people with type 1 diabetes
I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep).
The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away.
This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community.
The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about.
In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.
There is so much more to talk about. So, so much more.
We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).
We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that.
Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).
And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences.
For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed.
I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health.
Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible.
After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters.
We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too.
These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy.
One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental.
Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!
There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.
Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.
Disclosure
I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time.
People with diabetes know that many times when we have a health concern it is dismissed with phrases such as ‘Oh, that’s more common in people with diabetes’ or ‘It’s part of living with diabetes’. Sometimes, that may be the case, but other times, it absolutely is not, and playing the diabetes card is like a get out of jail free card for HCPs to not do the investigations that they should to confirm diabetes is indeed responsible, and to eliminate anything else. Our concerns are ignored, and sometimes not believed. Not being believed is distressing in a particular way.
It is fair to say that while diabetes has the ability to creep its way into all sorts of places it doesn’t belong, it is also fair to say that sometimes it’s not diabetes.
I’ll say that again for the people in the back: SOMETIMES IT’S NOT DIABETES!
Women – with and without diabetes – have also reported, (and reported and reported) stories of not being believed, or listened to, or properly treated by healthcare professionals when we’ve fronted up to visit the GP or other health professional to discuss something worrying us. Women with painful, heavy, uncomfortable periods are told that it’s just part of being a woman. A diagnosis of endometriosis is not treated as something especially serious because it is common, and we’re told it’s just part and parcel of life for some women. And women going through menopause and perimenopause, are told just to accept it, that it will pass… and it’s just part of being a woman.
Put diabetes and women’s health together and there is a lot of dismissing, ignoring, diminishing, patronising, and belittling.
It needs to stop, and we need to be believed.
I am lucky that I haven’t experienced painful periods. To be honest, I barely even thought about periods until I was ready to try to get pregnant when I realised that my (up until then) good luck of only having a period 3 or 4 times a year wasn’t ideal for someone who needed to know when ovulation was occurring, and, to optimise the change of getting pregnancy, was occurring monthly. When I mentioned my irregular periods, the first thing I heard from most HCPs said was that it was because of diabetes. I wasn’t buying it. I’d started menstruating when I was thirteen. I had eleven years of sketchy periods before I was diagnosed with diabetes. And so, I asked for a referral to an OB/GYN and found one who was the sort of doctor who likes to solve puzzles rather than just ignore them.
He did a laparoscopy, a heap of other tests, and announced that I had PCOS. Not once did he suggest that my diabetes was to blame, but so, so many other HCPs did draw a line between the two. I do understand that there are links between type 2 diabetes and PCOS, and there is some research to suggest that there is a link between type 1 diabetes and PCOS, but thanks to an OB/GYN who wasn’t into making assumptions, I knew that there was more at play.
When I was ready to conceive, a regular cycle was easily achieved with a bit of Clomid. Since I had my daughter, my periods have been like clockwork. The arrive with a tiny bit of cramping that barely registers, and me being annoyed that I need to think about if I have what I need in the bathroom cupboard/work drawer/handbag. But not much else.
But I have friends who have such painful, uncomfortable, debilitating periods that have a really negative affect on their health and wellbeing each and every month. I know of people who miss days of school or work each cycle, who vomit at their period’s onset, and who cry in pain for days each and every month. These friends tell stories of how many HCPs simply shrugged their shoulders and said it was something they just needed to deal with, and perhaps some ibuprofen might help. They tell me that the severity of the pain is not believed. They are made to feel that bleeding through layers of pads, tampons and clothes shouldn’t concern them.
When I have needed to push and push and push to get answers, or to be treated seriously in the first place, or to reject the ‘It’s diabetes’ reasoning, I have been labelled difficult or challenging. When refusing to accept the ‘It’s just a woman thing’, I’ve felt the same way.
Dr Jen Gunter says it shouldn’t be an act of feminism to understand how our bodies work. In exactly the same way it shouldn’t be an act of defiance to demand answers. It also shouldn’t be an act of resilience. All too often, it is all these things.
Diabetogenic 