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.
Page last updated: 03 August 2022, with the addition of links to resources on menopause at the end of the blog.
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?
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. As of 2020, there are 19 million adults in the UK who have a long term condition. 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 healthcare 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?
Resources on menopause
The Editors have added these in April 2022. With thanks to @drhannahshort, GP Specialist in Menopause & Premenstrual Disorders, for her suggestions.
- You can find our other blogs on menopause here.
- Balance: Founded by Dr Louise Newson, “a GP and Menopause Specialist who works to increase awareness and knowledge of the perimenopause and menopause, and campaigns for better menopause care for all women”.
- British Menopause Society: tools for clinicians and Menopause Care Resources Toolkit
- Daisy Network, a charity providing information and support to women with Premature Ovarian Insufficiency, also known as Premature Menopause.
- European Society of Human Reproduction and Embryology – Guideline on the management of premature ovarian insufficiency.
- Global Menopause Inclusion Collective
- Healthtalk – Menopause. Here you can see videos of women in the UK talking about their menopause experiences.
- International A relationship between two characteristics, such that as one changes, the other changes in a predictable way. For example, statistics demonstrate that there is an association between smoking and lung cancer. In a positive association, one quantity increases as the other one increases (as with smoking and lung cancer). In a negative association, an increase in one quantity corresponds to a decrease in the other. Association does not necessarily mean that one thing causes the other. for Premenstrual Disorders: Surgery and surgical menopause for premenstrual disorders.
- Rock My Menopause (created on behalf of the Primary Care Women’s Health Forum)
- NICE guideline – Menopause: diagnosis and management.
- NHS – Menopause
- Women’s Health Concern factsheets
Anne first wrote about this topic on her own blog in January this year and you can read that: The ‘big M’ – more taboo subjects #changethechange. You can follow Anne on Twitter @anniecoops. We’d love you to join in the conversation!
*The Cochrane Review on HRT for women with type 1 diabetes has not been updated since 2013. Neither the NICE guideline on diabetes (June 2022) nor the NICE guideline on menopause (December 2019) address concerns about menopause in the context of diabetes. This remains an important information gap.
Mackay L, Kilbride L, Adamson KA, Chisholm J. Hormone replacement therapy for women with type 1 diabetes mellitus. Cochrane Database of In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 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
National Institute for Health and Care Excellence. Menopause: diagnosis and management. London: National Institute for Health and Care Excellence; 2019. (NICE NG23) [Issued November 2015; last revised December 2019]. Available from: https://www.nice.org.uk/guidance/ng23
National Institute for Health and Care Excellence. Type 1 diabetes in adults: diagnosis and management. London: National Institute for Health and Care Excellence; 2022. (NICE NG17) [Issued last revised:
Office for National Statistics (ONS). People with long-term health conditions, UK: January to December 2019. London: ONS; March 2020. Web. 27 May 2021. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditio nsanddiseases/adhocs/11478peoplewithlongtermhealthconditionsukjanuarytodecember2019