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Original poster

Worrying about dd

21 replies

Spotsbeforemyeyes · 01/10/2018 21:00

My Dd is 23. She has an incurable autoimmune condition which puts her at high risk of vulval cancer. She doesn’t live at home.

She told me today that she has a black bump on her vulva where she had a biopsy when she was 6. It’s always just been a bit of scar tissue but is now bigger and bumpy.

I actually feel sick and have been on the verge of tears all day. She went to the gp this morning and she said he hadn’t a look and straight away said he’d refer her urgently which obviously hasn’t been very reassuring.

I know I shouldn’t have but have googled. I’m so scared. She’s my eldest.

OP posts:

Original poster

Spotsbeforemyeyes · 01/10/2018 21:01

Had not hadnt

OP posts:

buckeejit · 01/10/2018 21:05

Hugs to you. Have you any idea how long it will be until she gets seen & tested & results? Is there anyone you know can push it through faster?

Sorry I've no advice but do your best not to google any more at this stage & wait to see. Hope someone will be along with more helpful info soon

BillywilliamV · 01/10/2018 21:07

I would be terrified too so no words of wisdom, only if she has known what to look for and has been vigilant then any issue may be quite new and can be dealt with more easily.

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Original poster

Spotsbeforemyeyes · 01/10/2018 21:09

billywilliam she obviously understands her body and has noticed quickly it seems so fingers crossed if it’s anything sinister then it’s very early days.

We have private healthcare. Is this the time to use it?

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brokenharbour · 01/10/2018 21:11

I would use the private healthcare. My own experience for lumps etc is that I've been seen within a few days privately.

brokenharbour · 01/10/2018 21:12

Last time i used it for my daughter we were seen before the gp had even written the referral letter!

Earslaps · 01/10/2018 21:16

Can I just offer some potential reassurance?

I'm wondering if the condition is Lichen Sclerosis? If so, the doctor told we that it does put you at greater risk of vulval cancer, however in LS patients it is more likely to be discovered earlier (due to them being aware of it being a risk and applying creams meaning they know the area better). Therefore it is usually caught before it can spread and is very treatable.

I hope that helps.

Hidingtonothing · 01/10/2018 21:17

Yes, absolutely use your private healthcare, hopefully it will be nothing sinister but none of you should worry about it any longer than you have to and private will be quicker. I know nothing we can say will make this less scary but please know we’re thinking of you and hoping all will be well

Earslaps · 01/10/2018 21:18

BTW- not saying that she does have it, but if she does there's a high chance she'll be ok.

Could be many other things too, mostly benign.

Awwlookatmybabyspider · 01/10/2018 21:19

Thinking of your dd and indeed yourself.
Hope everything okay. x

purplecorkheart · 01/10/2018 21:19

I would use Private Healthcare in this instance.

Original poster

Spotsbeforemyeyes · 01/10/2018 21:25

earslaps yes it is. She was diagnosed at 6. One of my other daughters has it too. She’s only 7. It’s a horrible condition.

OK. TOMORRow ill be he phone. Thank you all.

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Earslaps · 01/10/2018 21:25

Also, Doctor said that even though LS can increase your risk of vulval cancer it's increasing a tiny chance.

So if you treble a 1% chance it's still only a 3% chance iyswim?

I wonder if it's keloid scarring?

Earslaps · 01/10/2018 21:30

@Spotsbeforemyeyes yes it is horrible!

I spent years (and £££££) thinking it was thrush before getting diagnosed a couple of years ago. Reckon I had it at least 15 years with it before being diagnosed.

The cream thankfully keeps it well under control for now but if I don't apply it as soon as the itch starts it spreads all over. The worst is when it gets to the back- I was worried it was worms until the doctor said it had spread there too.

LS skin can scar easily so could certainly be something like a keloid scar.

Blinkingblimey · 01/10/2018 21:31

earslaps - may I rudely ask if you also have a dd with LS? My (primary aged) dd was finally diagnosed this year....obvs it’s a. quite rare and b. not a common conversational topic so I don’t know anyone in rl who is also affected...
spots - we went private for dd’s diagnosis and there were a few experts dotted around the country....def use the private option if your dd doesn’t get an appointment within a reasonable time frame 💐

Blinkingblimey · 01/10/2018 21:32

Sorry, I cross posted with both of you!!

Racecardriver · 01/10/2018 21:33

Absolutely use your private health insurance. They will make sure you dd gets the best treatment ASAP. Good lick to you and your dd. I can't imagine how you must feel

Original poster

Spotsbeforemyeyes · 01/10/2018 22:11

earslaps it’s been many years since her biopsy so not likely to be keloid and the fact that it’s black has worried us both.

blinkeyblimey yes I do have a primary school diagnosed Dd. She’s 7 and a half. I struggled for almost 6 years with older Dd to get someone to listen to me but was wiser and older and insistent with younger Dd.

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Blinkingblimey · 01/10/2018 22:23

We also just thought dd must have constant worms...although I had noticed the skin didn’t look quite right and eventually it REALLY got sore, was so so awful....and gp was not helpful..by that stage i’d done my research, had suspicions and they just gave me emollients....eventually found a private paediatric specialist who was excellent (& thoroughly calming and sensible).
Could your dd’s black bump be an angiokeratoma? It’s another option! More 💐.

Original poster

Spotsbeforemyeyes · 01/10/2018 22:40

blinkingblimey just googled that. It could be, it mentions them developing in places of trauma and a biopsy site could be that right?

I’ll be ringing for a private appt tomorrow and see where that takes us. Thanks

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Earslaps · 01/10/2018 23:03

@Blinkingblimey I only have boys, so no idea if genetics will play a part. I do have a friend with LS and she did start to spot signs in her DD, but I haven't seen her for ages so I don't know if anything came of it.

Sorry to hear about any children with it, how horrible to have to deal with it. I find mine flares up in relation to my cycle, starts straight after ovulation and lasts until period starts (or when it would since I now have the mirena). I don't know whether it will present like that in future for your DD.

I find that when it's really bad it helps to rinse myself off after a wee rather than wipe, I keep a jug in the loo then a pile of clean flannels to dry off. I keep all soaps etc away from my undercarriage and wash with epiderm cream. Then when it flares up I use the dermovate cream to keep it under control. Before I got the cream I used to get so sore and burning, then the skin would swell up and go all lumpy looking. I also get this weird lumpy, spotty eczema on my hands that seems to be related.

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