to not really want to be brushed off about this?

[SingingSamosa]

Posting here for traffic as much as anything really.

My 6.5 year old DD (middle child) has suffered pretty much all her life with what seems like really bad nappy rash in her privates. It doesn't affect her bum, just her actual labia but all the way up and back. The doctors originally told me it was bacterial vaginosis when she was a baby and I had prescription cream for it (Timodine). Despite hourly nappy changes she'd still get it and it was so so sore. They told me it would disappear when she started potty training but she was potty trained at 2 and it still comes back periodically.

We have been back to the doctors numerous times - she was even referred to a paediatrician at one point but they've all said there's no bacterial or fungal issue (from swabs). They think the main issue is that she doesn't manage to wipe away all her wee when she goes to the loo but she tries so hard to do this yet it still comes back. I (and she) apply nappy cream when it starts to get a bit sore again but it's not that effective.

Last night I was up with her for two hours whilst she screamed in pain and her labia were very inflamed and red looking. Eventually a cold flannel, some Calpol, cuddles and lashings of nappy cream eventually soothed her enough to get her to sleep but I'm at my wits' end! Medical professionals have said that there's nothing more they can do. It's horrible hearing her sob and scream and not be able to do anything about it

Surely they can't just fob her off like this? I've watched her wipe after she's been for a wee and there's not any discernible difference in how she does to how her big sister or I do it.

She is a bit of a precious snowflake type in terms of sensitivity - she can't bear wearing certain clothes because they irritate her skin, she can't stand loud or high noises etc. I've always thought this type of 'super sensitivity' was more of a psychological thing that children had than an actual physical thing but perhaps she has very sensitive privates?

Has anyone else experienced anything like this? (Sorry for the long post!!)

Have you considered allergy to TOILET PAPER???? And before that, nappies?

I am allergic to toilet paper, sanitary towels, tampons, kitchen roll, tissues...and disposable nappies as a baby.

I get red swollen labia, nappy type rash, and a hot bruised feeling. Never any itching. I also resort to cold flannels and paracetamol. And anti-histamines.

If I use kitchen roll/tissues on my eyes, I get allergic-conjunctivitis- red, swollen and gooey.

When it is really sore I use cotton wool and water to wash instead of wiping, or hypo-allergenic moist toilet wipes. I can only use Cushelle or Tesco Ultra toilet paper (white only) and Kleenex Mansize tissues.

I think you're right to refuse to be fobbed off any longer.

Has she been tested for diabetes, long term utis (different tests to usual ones), hyperthyroidism, hyperglycemia, immunological conditions, persistent internal candidiasis? (Doesnt always show up on swabs)

This needs resolved as she cannot be left in this constant discomfort and pain. Good luck to you both.

Theyremad - yes SIL had to get kidney removed as she outgrew the reflux but kept getting recurrent UTIs. I think it was the size of a 2 year olds when it came out!

Some dermatologists specialise in vulval involvement.
How long until your appointment? A one-off private appointment might be the way forward.

When I had chemo my labias were absolutely destroyed and if they made contact with my knickers for a period of time would actually scab into the knickers and I'd have to pull them off (like when you get a blister and your sock sticks )

I used to wear a sanitary pad completely packed over with sudocream to stop the sticking. I'm assuming hers start to stick too?

I can't tell if you need to see a gynaecologist or a dermatologist but it's not on. Your poor daughter shouldn't be suffering like this

I have terrible contact dermatitis in that area. I can't take bubble baths, I can't wash that area with soap (even the "hypo-allergenic" ones), I can't use any powders or lotions at all in that area. The rest of my skin isn't sensitive at all, apart from some mild eczema. Perhaps stop using anything chemical-y in that area for a while.

Hi there, our DD is 6 and has similar problems (but not as bad), alot of nappy rash in that area which Id put down to bad wiping even though I've checked and she seems to do it ok. She does have eczema elsewhere. The only thing that has helped, apart from nappy cream, is a quick bath every morning. No soap, no bubbles, just the water to Clean and soothe it. Has made a big difference. And of course non bio powder.

When my DD was a baby she suffered badly from nappy rash especially when teething, red sore bleeding and very painful, front and back. I was told by an old nurse to apply egg white and allow it to dry before replacing nappy or in your case pants. It formed a waterproof barrier and made a huge difference . Apparently they used to do this in special care baby units. May be worth a try .

she can't stand loud or high noises etc. I've always thought this type of 'super sensitivity' was more of a psychological thing that children had than an actual physical thing but perhaps she has very sensitive privates?

The super sensitivity can be very real! Please don't dismiss the sound issues, they can be extremely painful.

With respect to the genital issues, I think a referral to a dermatologist is your best bet if you have ruled out allergies to materials/washing products/personal hygiene products/etc.

Have had the same with DD who is now 8, not for a year or so now, it wasn't at all as often as your DD, but v distressing. DH and myself medical background so worked through whole list of treatments- treated for worms, eczema, bacterial infection, used Piriton, painkillers- none of which really helped . Someone suggested putting a heap of malt vinegar in her bath, and it worked incredibly, have used it a couple of times since when it came back and again knocked it on the head . Bottle of malt vinegar , normal vinegar , we put a quarter of the bottle in, think it was a 500 ml bottle, the bathroom smelt like a chipper, but thanks god it worked. Have to suggest you try the same, it was horrible to see her in so much pain over it, it's wierd but it did the trick.

Another lichen sclerosis sufferer here, and I can assure you mine doesn't look like the people pictures online. I only had a small amount of the white and mine often felt burning hot and throbbing rather than itchy, plus it got weirdly lumpy at times.

It's under control now and I rarely need the steroid cream now. I wash with epaderm cream every day and when I can I rinse with warm water after a wee. If it's not possible I sort of gently dab dry rather than wipe. I put coconut oil all over every morning to moisturise and protect the area, this has really helped. No bubble baths or scented shower gels anywhere near. Epsom salt baths seem to help a bit.

Yes! I had similar as a child - was lichen sclerosis. Sometimes get it now. Much better with steroid cream.

Hope you get answers soon OP. Sounds horrid.

I also have lichen sclerosis and I was wrongly diagnosed with thrush for many years. It is probably worth mentioning it to the doctors just to rule it out, as it can be managed very well with steroid cream but can be very unpleasant without treatment. I hope you manage to find some answers.

Agree with PP that it sounds like possible lichen sclerosis and it's worth seeing a dermatologist.

I just had another thought, lichen sclerosis is usually an itchy condition but if you are not diagnosed and getting treatment it can get very painful. Mine became extremely painful and unpleasant as I must have had it for years and it was misdiagnosed as thrush, so all the thrush treatments were actually aggravating it. Once you start treatment you can get it under good control. A nice soak in a not too hot bath can soothe it too. I do remember the doctor saying that it can occur in children and in those cases they usually grow out of it. I saw a specialist gynaecological dermatologist.

Not at all medical in any way. But I do have a couple of ideas, could it be the toilet paper at school? Last I remember...a while ago now...but it was shocking!
Also, is she getting any urine at all in her underwear? On the rare occasion I've had to 'drip dry' I get very very sore in that area until I've washed, dried and changed underwear. I wonder if she could have a similar issue?

start googling - find the nearest big teaching hospitals and looking at their paediatricians, do they have a paediatric dermatologist? That's who you are after. Sometimes, only a paediatrician at your local hospital can refer to a senior specialist, so it takes a while to get through the system. Another way to go would be a paediatric genito-urinary specialist, but the same method applies. Having found who you want, you have to ask for a referral and generally you find that doesn't go down well, so its a case of sticking to your guns.

I haven't read the whole thread, but have you tried Pure Potions Skin Salvation cream? It's all natural, formulated especially for eczema sufferers.

If it doesn't actually help, it's probably something that won't irritate any further. You can buy online but some chemists stock it. here

I see someone suggested malt vinegar in a bath, perhaps worth trying diluted apple cider vinegar with the "mother" as a similar alternative? like this one

Also wondering about her fluid intake. You didn't say what she weighs, but most girls that age would need more like a litre and a half a day, if they had any undercarriage issues - concentrated wee being so irritating and stingy, it tends to make the bladder twitchy, but also irritate their bits. What colour is her wee? If it's watery/hint of colour, then I wouldn't worry too much about what she's drinking, but if it's yellowy/orangy then really worth trying to push up the fluids more...also worth looking at when she's drinking. Spread out through the whole day is great, but a lot of little girls seem to both not drink enough, but also drink most of it in just a few hours after getting in from school, so spend most of the day with concentrated wee.

another person who has not read the whole thread. not sure if someone has mentioned the possibility of food allergies, especially diary even in the urine. next i'd hop the border to france and pick up some olio-calcaire.
start from the very basics; wash mild soap only, dry gently and certainly not with ANY paper product then on clean skin apply the barrier cream. leave the area open to air (long skirt day or super baggy cotton pj's) sleep naked bottom. the olio-calcaire is used as a moist wipe after each bathroom episode.
I would try this over a long weekend or easter break to see if it helps.
the olio is cheap so worth a try (check amazon or ask the pharmacist)

Could she also have little tears in the skin. That was something I had until I got treatment for my lichen sclerosis. The skin was so sore and tender , it got very thin and then would get tiny tears all over. Obviously these were agonising when they got wee on them.

Again, the steroid treatment followed by epaderm to clean and coconut oil daily have changed my life.

If i was in your situation now i would be seeing a reputable naturopath.
You both must be going out of your mind.
I hope it gets resolved quickly.

Also wondering about her fluid intake. You didn't say what she weighs, but most girls that age would need more like a litre and a half a day, if they had any undercarriage issues - concentrated wee being so irritating and stingy, it tends to make the bladder twitchy, but also irritate their bits. What colour is her wee?

She's very petite, she weighs the same as my just turned 4yrs DS - three stone, which is just under 25th centile I think. Her wee is very pale so I know she's drinking plenty, and it gets spread out fairly equally through the day - a fairly large drink with breakfast and dinner at home, plus her water bottle at school and a drink with lunch (which I can only take her word on!). She only really drinks water too, as she doesn't like much else.

She's never had strep throat as far as I know. She never really gets sore throats, just coughs. I've also never had strep throat but have got psoriasis (along with a whole host of other auto-immune conditions).

I'll wait and see what the dermatologist says I think!

I suffered for nearly a decade with similar but as an adult. What i had can affect children although it is in no way contagious, and i am constantly on the look out for it in my two children. It was missed by many doctors and i was quite desperate thinking it was down to me. Please google Lichen sclerosus. It could possibly be that and if so it requires management from a specialist. It is an auto-immune response. Does your daughter suffer from eczema, asthma or hayfever? these are also auto immune disorders/ responses.

You need the advice of a Paediatric specialist, reading your post again, it does sound like Lichen sclerosis. You can buy 1% hydrocortisone cream over the counter, and this is safe for short term use on labia. If you tried this for say a week, and saw improvement, you have something to help fight your case with. I wish you well, its sounds horrid for you all x