Help us develop a new information resource on lupus and the menopause

[Debbie_kinsey]

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

You can tell us your thoughts via our short survey: forms.gle/JTHyvQHT2XL6Bivq5

or find out why we're developing this resource on our website: lupusuk.org.uk/help-us-deve...

If you have any questions, you can contact Debbie on [e-mail] or 01708731251

[Wolfie_at_the_door]

Flippin LOVE this! I'm doing my own very personal 'survey' of what's it's like in real time... it's incredible how intrinsically linked physical events are for those of us in this situ, often without realising it. I've privately 'guinea-pigg'd" my routine/ med input etc for a few months now and it's evermore obvious that the medical arena is lacking - on a menopausal - medical condition- connected basis. My meagre findings yell at me that the dots need joining. I'm finally feeling more well than I have for 8 months. 3.5 weeks without crutches now. More better days than bad days. Very aware that as with any health condition , the menopause is extremely individual but i cannot be the only woman out there banging her head against a wall & determined to explore avenues? Happy to talk more re your research if anyone has ears.

[Cwmtaf]

Brilliant work Debbie. I will definately complete the survey . Menopause really affected me , my work and my confidence. Most of the time I had no idea what was going on. I wish I knew then what I know now. Keep up the good work. We'll done Lupus UK.

[loopieloo]

This would be so useful, a little late for me but it's be happy to share my experiences. From very informal research it seems many have hit menopause earlier than usual (45 for me) and have more severe symptoms. Finding a Dr willing to prescribe hrt was tricky, ended up going private and it is worth every penny, but shouldn't have to pay to get a knowledgeable doctor. I've filled in the questionnaire, good luck.

[loopy-lou]

This is excellent. Again a bit late for me. My GP said a blunt no to HRT so I have never had anything. I do wonder still mid sixties if I would feel better than I do. I just put everything down to Lupus but it may not be. Will be interested in more comments.

[Treetop33 in reply to loopy-lou]

I'm on HRT and I have lupus. Outrageous that you were turned down - how dare they.

[marypw]

This topic needs a lot more research and information then made available to patients. Menopause and lupus are a horrible combination!

[Poshcards]

seems I was quite lucky, it happened around 49 for me and apart from bad sweating I sailed through it xx

[soul22]

Completed I have both menopause due to drastic cancer surgery ovarian sle overlap other conditions I can't have her due to risk cause ovarian Endo is cancer would return as it forms from hormones.