Why didn’t they tell me?

Anne Cooper

“My hope is that people read this and ask questions.” Anne Cooper

In this guest blog Anne Cooper, who has lived with type 1 diabetes for 35 years and is a senior nurse working in informatics, talks about how silence about the menopause meant she arrived at it unprepared; about the new challenges it brings for her day to day management of her diabetes, and what needs to change. 

I’m not one to make a fuss about my health. It’s well known in our family that we are just expected to get on with it and that’s what I try to do. I’ve had type 1 diabetes since I was 16 and so I have had 35 years of coping and managing. Obviously I’ve had good spells and not so good spells but (I’m touching wood) I have never been admitted to hospital because of my diabetes, I have a healthy 24 year old son and I would say I have always sort of done what I wanted to do. I work and have done since I was 16 – I was diagnosed 8 weeks into my first serious job. I have never, since then, had a day off because of diabetes. It’s not that I see it as some sort of battle or anything – it’s just my life.

But then last year something started to change. I have always been able to remember things, where we held meetings at work, who was there and who said what. Last year I felt like I was losing my grip, it was really very scary. Why couldn’t I remember? I really didn’t feel on top of my game. I have a demanding job where I meet lots of people. Sometimes I would know I had met someone but could not for the life of me remember who they were. It was scary and because I thought I was ‘losing it’ I told no one.

Then other things started to happen too. My glucose levels were erratic and worse I seemed to be hypoglycaemic every two minutes. I couldn’t understand it, nothing on the face of it had changed, but everything had. I was scared.

It was getting me down, blood glucose levels that were up and down like yoyos and my husband had started to give me funny looks when I would say slightly odd things, for example the wrong day in conversation, I would say Wednesday, meaning Friday – general confusion seemed to reign. Thank goodness for his tolerance but I did get a few hard Paddington Bear stares.

It wasn’t until I had a conversation with my friends that the issue of memory came up and I started to realise I was probably peri-menopausal. It is so funny that we are all age contemporaries but we had never had a conversation about it before and even now I feel vaguely uncomfortable about telling you my story. It was so wonderful to share and have an honest conversation with other women that I trust, but I still feel that people are likely to judge me – you know that woman who can’t remember stuff?

It was so wonderful to share and have an honest conversation with other women that I trust, but I still feel that people are likely to judge me

I fear that the Menopause, or as I have called it the ‘Big M’, is so taboo that it is not discussed generally in society, with the knock on effect that its not routinely talked about in relation to long term conditions; many of which are affected by hormonal changes. There are 15.4 million people in England (over a quarter of the population) who have a long term condition[1]. That’s a lot of people. Do the negative parts of being a woman who can no longer have children, with the stereotype of being ‘dried up’, moody, (more) irrational, and of no use to society, impact on how we think about this (or not) in the wider context of health?

Some would say that there is little enough evidence and information about menopause in general, my challenge is that there is even less for women who already juggle complex and challenging existing long term conditions. I found a Cochrane review relating to type 1 diabetes and HRT but the evidence was very poor.

What I want to know is why no one told me that I was reaching the age when things could change for me, not only generally but in relation to my already complicated diabetes management. It was never mentioned, considered or even raised. I’m 51 – did no one think it would apply?

I’m lucky; I have had few of the typical symptoms yet, except the memory and poor sleep. But much more significantly for me I have had to start to take a much more active review of my diabetes control. Little high quality information seems to be available in relation to menopause and diabetes; most is very general and non-specific. Is it too much to ask that access to good quality information and some sort of conversation about it should be routine?

So, here I am writing a blog about something that I even felt was difficult to discuss with my friends. Why? My hope is that people read this and ask questions, that researchers read it and wonder why there is no evidence, that information providers think: ‘Now do we cover the menopause?’ and that health care professionals have the courage to talk about it with women who have existing conditions and help them prepare for the life changes.

I don’t want more people to ask, as I do: why didn’t they tell me?

What are the effects of hormone replacement therapy (HRT) for women with type 1 diabetes?

The problem: There is uncertainty about the use of HRT by women with type 1 diabetes. Information is conflicting. Women with diabetes and health professionals need reliable information to inform decisions about managing their health during the menopause.

Cochrane evidence: Cochrane reviews are high quality systematic reviews that bring together all the existing primary research that meets certain criteria, to establish whether there is conclusive evidence about an intervention. A Cochrane review has looked for evidence on the effects of HRT in women with type 1 diabetes.

 There was only one trial comparing 56 women with type 1 diabetes taking HRT or placebo (sugar pill). It was too small to be able to show differences between them. The reviewers stress the need for more and better trials to explore the effects of HRT on blood glucose levels and on cardiovascular outcomes (such as heart attacks and stroke) in women with type 1 diabetes.

Click here to see the Cochrane evidence.

Anne first wrote about this topic on her own blog in January this year and you can read that here. You can follow Anne on Twitter @anniecoops. We’d love you to join in the conversation!

Links:

[1] http://www.england.nhs.uk/resources/resources-for-ccgs/out-frwrk/dom-2/

Mackay L, Kilbride L, Adamson KA, Chisholm J. Hormone replacement therapy for women with type 1 diabetes mellitus. Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD008613. DOI: 10.1002/14651858.CD008613.pub2. Cochrane summary of this review: http://www.cochrane.org/CD008613/ENDOC_hormone-replacement-therapy-for-women-with-type-1-diabetes-mellitus 

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Anne Cooper

About Anne Cooper

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Anne has lived with Type 1 Diabetes for 35 years and works in the NHS as the lead for informatics in nursing at NHS England. Anne’s ambition is to help nurses, midwives and health visitors to use informatics in new and innovative ways working in partnership with patients and citizens. More recently Anne has developed an interest in social media and actively participates in both nursing and patient communities. Voted #SocialPioneer by the Nursing Times and Health Service Journal and was also on the HSJ list of inspirational women in health in 2014 @anniecoops www.anniecoops.com

8 Comments on this post

  1. Hi Anne, thank you for being brave enough to share your story. What gets me is how it is treated like a joke by society, the “funny” hot flashes, not sleeping, the constant discounts about older women etc. As someone teetering on the edge of what is to come, these blogs feel like they will be the first sensible and honest information I receive. Thank you, it’s time the tide turned on this, and women are properly informed, oh and men stand a chance of understanding what is going on for us!
    Warm wishes, Sally

    Sally Bailey / Reply
    • Anniecoops

      Hi Sally
      Thank you so much for commenting. I am hoping that by speaking up at least some people also have the confidence to talk more. We are also trying to spread the work on twitter using the hashtag #changethechange
      The are more blogs coming too with more expert and evidence based information.
      It’s time to talk about all this!
      Thanks again
      Anne x

  2. Sally Crowe

    Another Sally here! Thanks so much Annie for this perspective on the menopause. I Remember that some of your concerns came up in a James Lind Alliance research priority setting partnership some years ago – they didn’t make it thru to the top ten priorities but should be published on UK DUETs, I will check. You are right about the lack of debate and sharing of useful information, I am really hopeful that this week of blogs will start to remedy that. I am very surprised how much the menopause has affected me – especially symptoms that I wasn’t even aware of…..

    Sally Crowe / Reply
  3. Great article , there is also a gap for women with MH and LD issues

    jane stewart / Reply
  4. […] women report a huge lack of information about the menopause, fuelled by a continuing stigma relating to this ubiquitous part of female […]

  5. Hi Annie
    Having just googled and read your story it was just like reading about myself! I have just returned from my annual review and wanted to ask and learn about the big m and its effects on your control and would have appreciated someone to talk to about it but came away with nothing and was just told to check my bloods more often! (They forget we never get a break from this!). My GP suggested HRT, antidepressants or herbal remedies. My practice nurse suggested HRT as the only treatment to really work. We can’t be the first type 1 s to ask about this but as you say there is so little info on it. I would be happy to take part in trials. Wouldn’t you?
    Thanks for talking about it..
    Diane

    Diane / Reply
  6. Hi Annie – well done for drawing attention to this poorly documented area. I am a type 1 diabetic (have been so for 26 years – I am 53) and have been on an insulin pump for a year, with reasonable control. However in the last few weeks I have been experiencing excessive hyperglycaemia and night sweats. These seem to occur at the same time every night and I wake up (usually twice a night)assuming that I am hypoglycaemic – however when I check my sugar level, I an either normal or hyperglycaemic. It is starting to get quite exhausting. I have altered my basal insulin levels and had to adjust my insulin to carbohydrate ratio to attempt to control it. I am going to see my GP about it – and to discuss the pros & cons of HRT. This is a topic that has never been discussed by my diabetic consultants….

    Helen Pearce / Reply
  7. Hello, I’m type 1, 44 and menopausal. I went to Dr who suggested hrt. Patches and coil, going to check with diabetic nurse what she thinks about it all first before I go ahead. Symptoms are bareable but not sure I want to bear them!

    Fay / Reply

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