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  

Morning, don't worry about over sharing! The usual age Is post menapsal  but Shars is younger too.

the cause as such is unknown although a hair follicle is where it starts. I have had a many reoccurring cases of thrush, urine infections and cistitus. Scratching will only make it worse, a bit like an insect bite. Don't use soap there, if you feel plain water isn't  enough use E 45 cleansing cream. After my operations I have to shower there 3 times a day with as cold a temperature as I can. This is for heeling and hygiene (washing away any dead skin, cooling etc) and actually it's rather pleasant after the initial shock  always always cotton pants only and I sometimes wonder if tight trousers don't generally aggregate that area in the first place

Only a doctor can diagnose you so good fortune when you do see one. Euni 

Hi, Oh please dont feel worried about talking about it. It helps to share.

i was embarrassed too that's proberbly why I waited for a few months before going to the doctor and then going back!

Mine was a very intense itch in one place. It wasn't there all the time.  I notice it got worse after washing - proberbly the water and effect of drying that area.

I think both Euni and I have non-invasive Paget's so it hasn't become cancerous yet. But the apporach of the consultants is to treat it as if it were.

Mine is widespread and currently non-invasive.  Very little is known about this type of cancer.  But other vulva cancers are more common so more knowledge and treatment options.

I asked the question about life expectancy too and the consultant seemed to think there's no reason why it should be terminal as long as it managed and a close eye kept on it - as Paget's has a very high recurrance rate.

I would definately make an appointment with your GP. It will put your mind at ease. 

Hope this helps in some way 

Shars x

Yes definitely not terminal. My retired nurse friend is always stressing that

i have just received an appointment for Wednesday to see the radiographer. I hope I can make the right decision for myself which path to take. I think I shall still feel between a rock and a hard place. Watch this space as they say! Euni

im enjoying being pant less in this heat and feeling the wind blowing through my skirts

just to update I had a t/c consulation with my GP who says it's most likely a bartholins cyst. I'd mentioned i had read about them prior to her bringing it up so not sure if she was just going with that as she doesn't actually want to examine it in surgery. 

Would feel more reassured after a physical examination but due to covid she said they have to weigh up the risks of coming into the surgery .... 

she said if it's not gone in a few months then contact the GP again. A few months seems quite a long time .... it could have developed (spread) by then if it is something serious .... thoughts?

It would also help to have an examination so they could identify any inflamtion or abnormalities in the area. As i say it does itch fairly often but as I also said for me this is "normal" but maybe it's not normal ... 

still stressing!

hope you are both keeping well. 

Tricky for you and them, I can see both points of view

have you asked the chemist for an anti itch cream. They are very good and can be spoken to with all confidentiality. Explain your predicament and your dermatitis etc etc and you don't think it's thrush ( presume you have gone down that route already as I did). I know many years ago I was given an anti itch cream prior to surgery and although it "burnt" when first applied it definitely stopped the itch. I wish I could remember the name. It began with an E. not much help!

have you tried not wearing trousers for a while to see if it helps, shower, don't bath and sit in hot water for long time, as heat always make itching worse

i have been making a long questionnaire to take to the hospital  this afternoon when I find out the low down on radiography

keep in touch Euni 

Meant to get back sooner!

Hope the appointment went well and youre feeling a bit more confident as to what youll do next. They saw you really quickly that's great x

Your GP sounds quite confident this is what it is. 

Can your GP not do the web appointment or send them a picture or film footage of it? You may have already have done this.

I'd not heard of a bartholins cyst - does it just go by itself over time? 

It's so hard to not worry when you haven't been examined properly you can only keep pestering them until they see you. It may be worth them taking a swab.

Shars x

Hi I looked it up on google, tells you all about it d you could probably go to images and a look at examples. Those pics are always a bit scary!

i saw the radiographer this afternoon and am going to go ahead and have the treatment. Not much choice really as it will just keep returning and with luck this therapy will put a stop to it

5 daily visits for 3 weeks, each session taking around 10 mins. It will take over an hour each way so shall be tired just through the driving let alone the reactions.  I was told the peak will come 2 weeks after the  15 sessions and will probably be given morphine. Watch this space! Euni

she didnt suggest it but i'm not sure i'd be comfortable doing it over camera lol & tbh its something she would need to feel as opposed to see. 

I hadn't hear of it either until the night i found the lump & basically googled "lump on labia" & it came up. Apparently its a blocked duct or something that secretes sexual lubrication fluid ... don't ask me how it becomes blocked lol. But apparently its more common in sexually active people or if you might have an STI. I don't fall into either of those catagories hence my concerns/not being convinced that it's that. 

Thanks Shars. He didn't pull any punches about what to expect either, but forewarned is fore armed. It won't be pleasant and will be very painful and unpleasant. My cancer nurse was there and I told her about your treatment, she offered her sympathies and said it must be extremely painful and very difficult to live with, especially keeping everywhere as dry as possible.

something I found which might help you and others was a way of getting dry after washing. I used an old large cotton handkerchief. After drying all over with the towel including into the groin I opened my legs wide and gently put the handkie between the "lips", no rubbing more just holding it there. This has worked well for me and might help you and others, hope so

sleep well Euni 

Thanks Shars. He didn't pull any punches about what to expect either, but forewarned is fore armed. It won't be pleasant and will be very painful and unpleasant. My cancer nurse was there and I told her about your treatment, she offered her sympathies and said it must be extremely painful and very difficult to live with, especially keeping everywhere as dry as possible.

something I found which might help you and others was a way of getting dry after washing. I used an old large cotton handkerchief. After drying all over with the towel including into the groin I opened my legs wide and gently put the handkie between the "lips", no rubbing more just holding it there. This has worked well for me and might help you and others, hope so

sleep well Euni 

I'll try the hanky thing - it's true it's really hard keeping it dry and trying to minimise friction

x