I have been diagnosed with this rare disease, at present precancerous and will see surgeon in 2 weeks 

There is little info on line except from USA which I understand is differently treated to UK

how are you and where are you at in your treatment. Best wishes Euni

Hi wonderful to hear from someone else. I had some skin removed in April which prioved to have just 2 cells that were cancerous. Mine was towards the front and one side only which is an easier area to do as there is spare skin. I had to keep the area well ventilated ! So no pants and loose skirts, but it was summer time so no problem and in fact I quite liked it. I healed quickly but in September an adjectival area didn't feel right so I had that done and it was a much smaller area and proved to be clear of cancer. I am now awaiting another one at the end of April. Each op is smaller than the last and I get over it quicker. However normal trousers are out as they are too tight and I alternate between skirts and tights and track bottom or leggings. A whole new winter wardrobe. The ops are now totally healed and feel just like they should, not painful and not aware of them

in the UK it seems surgical mainly to remove the skin before it become cancerous. In America they seem to go straight for the cream.  How old are you? I will be 76 next week

keep in tough and let me know how you get on.  I have told so many people and all the ladies have been pleased to know about it and to watch out for themselves .  One is being investigated for it soon  

It's amazing the things you discover when goggling! I've learnt something new!  ;  )

Fingers crossed it resolves itself like your GP said.  It's so worrying to find anything tht shouldnt be there.

x

Hi it has suddenly come to me the name of the cream was Eurax and can be bought in Boots. If you Google it you can see it might help you. It did me but a word of warning when you first put it on there is a warm burning feeling, not too unpleasant, then the itching stops. It's £3.50

Euni

Hello Shars. I wonder how you are progressing. I had my 15 sessions of radiotherapy which finished in July. I'm glad they didn't pull any punches about what to expect because it was as painful as they said and no pain relief covered it. That's all in the past and I'm up and kicking. I've not been checked out as I should have been, I suspect all this COVID has put them under considerable stress. I will contact them next week as I don't want to fall out of their radar.
I'm not in pain, which is wonderful but it's not as it was. Having had all that area "burnt" it's now all new skin, smooth and pink!!  I was given a set of vaginal dilators- I call them my sex toys, which makes all my friends laugh. They come in lots of sizes and I have to use them at least twice a week for  at least 2 years. It's to stop an lesions forming which would make any examination in the future impossible.  All I have now is a discharge which is "normal" as the radiotherapy can affect internal parts as well - from erethra, vagina and back passage. It did affect my bladder a lot but I'm more or less over that.

enough about me, how are you? I do hope your cream is working and your pain is bearable

best wishes Euni

Hello Shars. I hope this reaches you as the first time I sent it, it came back to me!

I wonder how you are progressing. I had my 15 sessions of radiotherapy which finished in July. I'm glad they didn't pull any punches about what to expect because it was as painful as they said and no pain relief covered it. That's all in the past and I'm up and kicking. I've not been checked out as I should have been, I suspect all this COVID has put them under considerable stress. I will contactthem next week as I don't want to fall out of their radar.
I'm not in pain, which is wonderful but it's not as it was. Having had all that area "burnt" it's now all new skin, smooth and pink!!  I was given a set of vaginal dilators- I call them my sex toys, which makes all my friends laugh. They come in lots of sizes and I have to use them at least twice a week for  at least 2 years. It's to stop an lesions forming which would make any examination in the future impossible.  All I have now is a discharge which is "normal" as the radiotherapy can affect internal parts as well - from erethra, vagina and back passage. It did affect my bladder a lot but I'm more or less over that.

enough about me, how are you? I do hope your cream is working and your pain is bearable

best wishes Euni

Hi Eunice!

So lovely to hear from you I'm so glad you got in touch. I'd wanted to contact you but couldn't find my login details!

i'm so glad the treatment went well! And you are on the road to recovery it sounds like it was hard going.

I had my biopsies at the end of July and all 13 came back clear! It felt like such a long wait for the results but such a releif and unexpected result.

I've got to go back a week Monday as there are some areas that havent stopped itching but more like an internal irritating tingling if that makes sense (similar to the sensation I had when I used the cream) but not when it was the Paget's.

I assume theyll have to do biopsies.  Parts of the skin do look lovely and pink as you describe but there are parts that still don't look right to me.

I always love to hear from you you do pick me up and make me laugh! Your sex toys sound fantastic LOL! It sounds like a fun treatment after all the gruelling radiotherapy!

Let me know how your check up goes 

Shars x

How wonderful to get an answer from you, my mail in box is full of my messages to you, repeated over and over

well we are now back in communication mode, yippee

plus Good news, mostly for both of us. My surgeon said that I always was correct when I said something wasn't right long before he could see that. Not all people did apparently - saying something was wrong when it wasn't.  I don't like having to wear a pad all the time though and feel it isn't healthy - the air needs to swish around a bit! I'm sure you understand.

I don't think I can wear propper trousers, to tight and too many seams converging. I have bought from M&S 3 stretchy corded leggings, navy, black and teal coloured. Very comfortable and keep me warm, and with either short skirt or long tunic, look good. Then of course you need the right foot wear!

men don't have such problems - cloths wise   Do you wear trousers

let me know how you get on and please keep in touch. We are a rarity with our condition

best wishes x

Eunice 

Hi Eunice,

Perhaps their messaging system was down? The message I got from you was the first since our last correspondence.  But thankfully we are back in touch!  :  )

I'm with you on the knickers front the summer was great not having to wear anything.  But now I'm back in the knickers as I'm wearing trousers again.  It took some time to gt used to.

I'm going to check out the stretchy leggings it's the cold I'm not keen on! LOL It's a good excuse for some retail therapy. 

I'll let you know how it goes i can't see that they can risk not doing more biopsies.  Do let me know how it goes with you

Love Shars x

£25 each   They may have others. They dry quickly too Unlike some joggers

we can have a fashion parade!

I think making the connection was problematic because it had been a while since we linked. The moral is we mustn't leave it so long between catching up

xE

Morning Shars. Made a mistake on price of high waisted cord leggings - £15 not £25. Gets even better!X E 

Even better! Thanks for letting me know. I'll try snd check them out next week once the kids are back at school and I can look in peace!

Shars x

Even better! Thanks for letting me know. I'll try snd check them out next week once the kids are back at school and I can look in peace!

Shars x