Extra Mammary Pagets Disease (EMPD)

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DavidInLondon
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Joined: Sun Oct 21, 2018 6:35 pm
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by DavidInLondon on Sun Oct 21, 2018 6:42 pm

Extra Mammary Pagets Disease (EMPD)

Hi Everyone, I hope you don't mind me writing here. My name is David and i am writing for my sister. She is 71, enjoying a good sex life with her partner, but just been diagnosed with EMPD (she lives in Wales). Any ideas of support groups (esp. in Wales) or good information? She has been mis-diagnosed (easy to do) with lichens sclerosus, now a biopsy reveals EMPD. She is being rushed through for CT scan then a partial vulvectomy and clitoridectomy in 2 weeks, but no leaflets, no support, no referrals to psychosexual counselling, just "come in and we'll operate"!
Thanks and best wishes to you all,
DavidInLondon