We want to find out what you want to know about lupus and the menopause so that we can develop a new information resource.

What is the menopause?

The menopause is when a person’s periods have stopped for 12 months (1 year) due to lower hormone levels. Perimenopause is the time before menopause when you are having menopausal symptoms but your periods have not stopped.

Menopause and perimenopause can impact people differently, but some common symptoms include brain fog, hot flushes, difficulty sleeping, anxiety, and irregular periods.

Why are you making an information resource about the menopause?

90%, or 9 in 10, people with lupus are women, and hormonal activity can be an important trigger. This means a lot of people with lupus are impacted by the menopause and need information about how lupus and the menopause can affect each other, and what menopause treatments may be suitable when you have lupus.

We get lots of questions about the menopause via email and at our information days, and some people have asked us for more information about the menopause because they can’t find lupus-specific information. Because of this information gap and the number of people it impacts, we decided to develop some new resources on lupus and the menopause.

We want to find out what people want to know about lupus and the menopause, and how they want to learn that information, for example through a booklet, a webinar, or a video.

How can I give my thoughts?

There are two ways you can give us your thoughts on how we should make our lupus and the menopause resource, and you can do whichever you prefer:

1). Complete our very short survey with prompt questions to help you think about the new resource. All questions are optional and your answers will be anonymous. You can find the survey HERE.

2). Contact Debbie Kinsey on Debbie@lupusuk.org.uk or 01708 731251 to give her any thoughts or feedback you have – this can be as long or as short as you would like!

The deadline for giving us your thoughts is 13th May 2024. We will then look at all the feedback as well as what the latest medical updates are, and work with specialist medical advisors and a small group of people with lupus to develop the resource. We won’t be able to include everything that everyone suggests, but we will take all the feedback into consideration.

Thank you for taking the time to share your thoughts with us.