What is perimenopause? 

Perimenopause — when hormones like estrogen and progesterone begin to fluctuate and eventually decline — is an expected transition for women and can have profound impacts on type 1 diabetes (T1D). Managing T1D can be made more difficult by creating unpredictable blood glucose swings and increasing insulin resistance. Yet, although there are some resources for type 1 diabetes and perimenopause, research is scarce.  

The lack of research around perimenopause and the transition to menopause — after menstruation has stopped completely — leaves many unanswered questions, particularly for people living with T1D experiencing this transition.   

In late Fall 2023, the T1D Exchange Outcomes Research team invited Registry participants currently in perimenopause or who had transitioned to menopause to share some of their experiences.  

Given the limited information and to help engage more conversations, we asked participants to consider the following question: 

What is one piece of advice you would give to your younger self…that you feel would have made the transition to perimenopause/menopause easier for you? 

Below are some of the most frequently discussed topics around perimenopause, the transition to menopause, and T1D that individuals wished they could have told their younger selves. 

 

Healthcare providers may be able to help  

Many participants discussed the importance of seeking medical care from trusted professionals who are knowledgeable about perimenopause. 

37 years old, perimenopause: “I’d encourage my younger self to share with their doctor sooner the changes that were happening and seek advice sooner.” 

50 years old, perimenopause: “Find a physician who will take your concerns seriously and never let them go.” 

57 years old, post-menopause: “Find a gynecologist who specializes in menopause. It will be the only way you get help.” 

But some participants acknowledged finding professionals who are knowledgeable about both perimenopause and T1D is especially challenging. 

47 years old, perimenopause: “I would say find a provider that is more versed in perimenopause and T1D, but that is bogus advice as anyone [with] T1D knows that finding providers that can manage T1D [and] something in conjunction is no[t] possible to find.”  

52 years old, perimenopause: “… Never realized how little most medical professionals actually know about type 1 diabetes.” 

 

The desire to know more before it happens 

Some participants felt they had limited prior knowledge about perimenopause and T1D or wished they had known more before experiencing symptoms, which sometimes left them feeling unprepared.  

42 years old, perimenopause: “I would have loved to have known it was coming. It came out of the blue at 41 years old! While I imagine I might have read up a little bit or discussed perimenopause with my doctor in my late 40s, I was completely unprepared to handle it in my early 40s. I think I would have told my younger self to be more aware in general of how the menstrual cycle and the fluctuation of hormones impacts blood sugar.” 

32 years old, perimenopause: “Research and understanding what happens BEFORE it starts. I feel like I am playing catch up with my blood sugars and everything really. I wish I would have known about this change in my 20s so I would be better prepared.” 

64 years old, post-menopause: “I’ve always assumed that consistent BG levels have become harder just because I’m gettin[g] older. I didn’t really consider that menopause had anything to do with it. I guess I’d say that I should have been better informed.” 

Where to find information on perimenopause can be difficult.  One participant acknowledged that hearing information directly from others who had been there could be particularly helpful and shared the resources they used to stay informed.  

54 years old, perimenopause: “…[F]or other gals, I think the more ones speak, read, learn from others, the better. AARP puts out articles specifically for females, the Girlfriend, and in there, they [have people] that discuss their own experiences and this helps a lot as well. [S]o just learn all the time….” 

 

Know yourself and advocate for your own health 

Some participants stressed the importance of knowing your own body and warned against dismissing the symptoms of perimenopause.  

50 years old, perimenopause: “Be more aware of the changes that I have experienced, if I had realized earlier I could have changed exercise and routines better.” 

48 years old, perimenopause: “Also to trust your body and ask questions. If one thing isn’t working, try something else!”  

52 years old, post-menopause: “Major shifts in hormones impact your bodies use of insulin – trust the way your body feels and responds to your daily activities!” 

 

Expect and accept the changes 

Perimenopause is an expected, though for many difficult and variable, part of aging. A constant across many responses was the idea that perimenopause is a time of change.    

Many participants discussed anticipating and accepting this transition as part of life but did not gloss over the difficulties or challenges involved. 

49 years old, perimenopause: “Girl, be ready for the changes, and don’t get discouraged at the ups and downs.  Some days will be great, and some days are going to be horrible.” 

62 years old, post-menopause: “Accept the fact that your body will change – this is a new season, and there are simply some realities that accompany it.” 

Other participants highlighted the expected changes in T1D and emphasized that fluctuations in glucose levels do not mean there are failures in management. 

47 years old, perimenopause: “You’re still doing everything you can to manage the diabetes, it’s the fluctuating hormones that are causing the chaos.” 

49 years old, post-menopause: Remember that it’s always going to be an adjustment. [T]rying to have perfect control over your blood sugar is not realistic and causes much more stress than listening to your body signals and being open with your doctor about what your body and brain are going through. 

 

What do you wish to know about perimenopause and T1D? 

These findings are only a brief peek into real-world experiences in a subset of Registry participants. Researchers and practitioners still have much to learn about how perimenopause impacts living with T1D.   

For Women’s History Month, T1D Exchange would like to ensure we’re contributing to the conversations around perimenopause. Would you be willing to share what you’d like to know about perimenopause or what you wish you had known in the comments?  

Plus, you can participate in research on a wide variety of topics by joining our registry. It’s a quick and easy way to contribute to diabetes research, and we’ll notify you about studies like this one when we think you might be eligible. Join us!