Gosh, 10 hrs to keep it on. One has to go to the loo when needed and we are encouraged to drink plenty of water especially when hot. Perhaps a catheta (I'm not being serious) must be very difficult with 2 young children to get any rest at all I expect the cream is like cortisone cream which has to be applied very thinly indeed, but it also thins the skin, so I used it very sparingly prior to my op, just when the soreness would not allow me to walk outside even during the lockdown I go out everyday for some fresh air and sea breeze, and buy something food wise A week before the op I had to go to the clinic and get tested for corona it was so wonderful to drive out for a couple of hours and see all the trees bright green and the fields full of bright yellow rape seed. Have you ever seen that? It's startling it's so bright yellow! But I don't like the smell
i expect you're like me, unable to wear trousers? Alright now with long skirts and no pants and a breeze blowing through, quite nice really . Keep in touch. We are in this together, no one else has come forward, we are very rare Eunice
Needing to go to the toilet is the most challenging part.
The medication makes me feel quite fatigued and slightly achy but this wears off. If I was able to rest during the day then it would be a breeze, but my little ones don't allow it! LOL!
I'm not sure about cortisone as I've never used it. But it sounds similar a thin layer applied.
It causes inflammation and apparantly this is the sign its working on the abnormal cells.
It must have been really nice to get out and see summer.I've only ever seen the rape seed fields from my window on the motorway they are beautiful : )
I was able to wear trousers. But now I'm like you in dresses and skirts and no pants! LOL.
Does your paget's keep coming back to the same area? Or is it propping up in different places?
I'll let you know how the biopsies go and keep in touch. As you say we're very rare. I can't tell you how nice it's to be able to chat to someone else Shars x
sorry if i asked already but did both of your kinda of occur out of the blue? do we know what causes or increases the chances of getting this?
interestingly I do actually often itch down there, but i feel like i just always have. I wouldnt say it's an intense itch & there's no indication of inflamation that would suggest anything like thrush etc. I suffer from excema & dermatitus on other parts of my body so if were similar in that area i think i'd know the signs to look out for. Honestly (& sorry if this is oversharing not my intention just trying to give an accurate picture) i'm not sure if sometimes i scratch out of habit more that actually due to itching, do i scratch because it's itchy or is it itchy because i scratch it? i'm not sure. I'm going to try & take more notice. In saying that there will be times i'm in public & feel a genuine itch but from the way you ladies are talking this is quite intense so i'm guessing I would probably be very aware of it, although worried that i've just become accustom to it. I'm late 20's & remember it being "itchy" since early teen years (pre sexual activity with someone else though not solo (again sorry if that's oversharing!). I did have thrush when i was a child & remember it being red & burning, this isn't like that.
i'm going to call the GP tomorrow. Feeling anxious. I feel ashamed to brotch the subject of my hands were down there & i found a lump. I don't want judged or to feel dirty :(
what is the chance of complete recovery from this type of cancer? can it be terminal or only if it spreads?
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.
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 ...
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
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.
