Poor GD has........

Sorry no but I'm very sorry to hear about her. What an awful thing for her to have. I hope it can be helped and that she receives kind effective care from NHS

Oh, poor girl. It sounds horrible.

Is there anything diet related that might help?

I have no knowledge of the condition but I would tend to agree that she needs to be under a consultant.
Poor girl, it sounds a hard condition even for an adult.

Poor girl, I have never heard of it.

As steroid creams cause skin thinning and it is such a sensitive area, can your DD go back and insist that she sees a Consultant Dermatologist (or whoever is the expert in this) as a matter of urgency.

Sometimes insistence pays off.

I saw this on the internet:
avoid washing with soap or bubble bath – use plain warm water or a soap substitute instead, such as aqueous cream
avoid perfumed bubble baths and biological washing powder
don't rub or scratch the area
try using an emollient, such as petroleum jelly, before and after urinating
wear stockings instead of tights

which I am sure the GP has already suggested.

Oh poor girl. Try looking on the Internet, ask the GP for a referral to a consultant and if not try and save up the money for one private consultation with a dermatologist. Even if you have not got private insurance (as we don't) sometimes it's the only way to get the help you need.

The poor child. That sounds horrendous.

Never heard of it in a child but in an adult who has been treated with topical rather than systemic steroids and she is under a consultant. I am sorry to hear that this poor child has not been referred to a consultant as it's not a very common condition. I think it is treated in a genito-urinary clinic which might not be a suitable place for a child.

I'd try aloe vera, both as a drink and topical. Can't do any harm and might just do some good. Not for that particular problem but I used the 'Forever Living' range of aloe vera a few years ago. My first thought had been 'aloe vera' and when I googled it for the condition it did come up with a lot of favourable reviews.

I would ask for a referral. It sounds like something that needs specialist help.

She is having topical steroids anno. They are high strength and used over a long period, and this is what concerns my DD, who is reluctant to use too much - but it is important that every flare-up is dealt with aggressively in order to reduce the risk of scarring. I feel that this ought ot be under consultant review, as it is happening so frequently. She has to sleep with a wedge between her knees to keep her legs apart because of the pain.

I hate to think of her going through this - with no prospect of it ever stopping as far as we can tell.

I am a bit reluctant to suggest to my DD that they ask for a consultant referral (even though it would seem to be the right move), as it is just another occasion when DGD has to be examined, which is distressing for her - and if they do not suggest any different treatment she will have gone through all that for nothing. Difficult to know what to do.

DGD used to have trouble with her waterworks, having been toilet trained, only to start wetting at about the age of 4 - this went on for years and no-one could get to the bottom of it. I am now wondering if it was the beginning of this horrid complaint. I had never heard of it before. She has a house full of noisy brothers and it must all be a bit embarrassing for her. She is a quiet little thing. I feel very sorry for her.

lucky poor little girl.

I hesitate in a way to suggest this - so offer my experience only. When my daughter was a toddler she had recurring croup (what it was called then, not sure what it would be now) and she was prescribed steroids. I hated seeing this lethargic little thing walking around the house, and I had heard of a classical homeopath who treated miasmatic conditions and decided to give it a try.

There are broad themes in miasmatic homeopathy and a major one is related to disorders of the skin. Anyway, this woman cured my daughter of her chronic chest condition within a matter of months and the steroid tablets were a thing of the past.

Have a read of this, I find it interesting:

hpathy.com/organon-philosophy/miasms-understanding-and-classifying-miasmatic-symptoms/

Could they ask for a female consultant if one is available?

It is kind of you to post that Grannyknot, but I do not think that my DD would be into homeopathy - indeed, I confess that neither am I. But I do appreciate your trouble in posting and finding a link.

rose - I would definitely hope that they might try and find a female consultant if this is the route they go down.

I suppose one of my worries is that it is not really being monitored - they just get a repeat prescription for the various strength steroid creams and bash on with it. I would rather someone were keeping an eye on it.

Luckygirl I have just had a quick look on mumsnet there are several threads about your grand daughters condition, something might be helpful for you. If you put lichen sclerosis into the search, all the appropriate threads should come up.

I did see this on the internet:

In children, the signs and symptoms may improve at puberty

That's why I said I hesitate to post it lucky and thanks for your honest response. The thing is, I can't say I'm into homeopathy either, I gather there are many differing schools of it. I had every faith in that woman (a former nurse) after her initial consultation with my daughter.

I never buy homeopathic preparations over the counter (excepting maybe Arnica) - and I haven't been to a homeopathic doctor for a while, but experience has shown me (more than once) that it can be beneficial.

I was at a conference this week where a very brave woman spoke about her addiction to prescription painkillers, and how she overcame that. Afterwards I chatted to her and asked "So given that you can't take opioid painkillers, how do you manage your pain?" and she said that she did so using a range of approaches including homeopathic treatment, visualisation etc etc. I guess the point is that we are more than just our symptoms.

My friend who has this condition has had the topical steroids in gradually tapering doses, not just for flare-ups and is now feeling much more comfortable. I think it's very important that dosages should be carefully monitored, and not by a GP who may not see very many cases.

Ahh, poor wee girl.

I agree with pp who suggested paying for a private expert consultation.

The consultant sometimes asks if insurance is paying and if not, has been known to reduce the fee somewhat. Recently it was £150 for an appointment within the week.
Would it be worth it just to have a second opinion?
If Cons agrees with GP then well and good.
And if Cons doesn't agree with GP then another door of treatment may be opened.

I do understand that it means another intimate examination (poor child) but it could be worth it, even if for reassurance of diagnosis and treatment.

Also - all that rosequartz said.

Oh, my heart goes out to this little girl, and her family whose hearts must be aching for her.

Yes - it is distressing to see her in so much pain. I will talk with DD about it when it seems appropriate - I do not like to interfere, but am concerned about the absence of a specialist opinion.

I agree with coolgran. Maybe you have some rainy day money saved up? Surely this is a pretty rainy day for your DGD. Really check the consultant is exactly as good as s/he says s/he is though. Good luck.

I would have no problem at all about funding her treatment - it is a matter of whether DD sees it as necessary. I will have a chat with her when I next phone her.

I can quite understand that it could be difficult to discuss. I hope your DD can take your suggestions. I'm sure you'll put it well. Good luck.

It is a difficult balance: I do not want to worry them unduly; nor do I want to put the lass through more examinations. But it is a big problem in all their lives and at the very least I do think it should be properly monitored.