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Anybody out there with lupus or shortens with vestibulitis/vulvadynia?

Hi there, I was only recently diagnosed with an autoimmune disease in the last couple of years although I've had a positive ANA for many. About 2-3 years ago I started having a whole range of symptoms including mouth ulcers, skin rashes, ear issues, joint pain and swelling, fatigue etc. I've been on plaquenil now for 18 months with an improvement, although symptoms are exacerbated when I try to reduce my daily dose from 400mg to 300mg daily. By far my worst and most persistent symptom is vestibulitis that manifested with all the other symptoms a couple of years ago. I've tried Physio for hypertonic pelvic floor, Botox, amitryptaline with no improvement. I suspect I have autonomic nervous system disorder accompanying my autoimmune disease. Is there anyone else out there with similar problem? If so, have you had relief from any treatment? Thanks in advance.

1 Reply

Hi Belleo,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack that contains factsheets, guides and a list of LUPUS UK contacts and helplines which you can download or request here:

Have you discussed your symptoms with your GP or rheumatologist? The NHS Choices website provides an overview of vulvodynia, discussing possible causes, treatments and when it is appropriate to seek medical advice:


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