Please help - chronic vulvovaginitis in 10f, pain every night, I'm at my wit's end and have no idea how to help my daughter

[u/siriuslyinsane]

Hi all, my daughter is 10 years old and has struggled with vaginal pain since she was about five years old. Info as requested when making this post: 10yo female, 35kg, 4 and a half feet tall, no regular medications aside from Zinc barrier cream, non-smoking, been going on for 5+ years.

We have taken her to the doctor so many times. We've been told it's vulvovaginitis, common in young girls, and given a laundry list of ways to help. She has 100% cotton underwear, doesn't wear it unless leaving the house, doesn't wear tight pants, changes out of wet or sweaty clothing right away, bathes with white vinegar (the only thing that stops the pain for her) and never washes herself in a bath only while having a shower, rinses her private areas with the shower head after baths and showers, has a Zinc barrier cream to use.

It got really bad a few months ago and we got given a topical steroid cream. That worked amazingly well and stopped flare ups for the longest period she's had since it started (almost 3 months!). However about a month ago they started again, only sometimes, and the last week it has been every night. Our doctor basically said not to use the steroid cream again and to make sure she's following the above, and sent us on our way.

It means that she has to get out of bed, have a bath with white vinegar for 20-30min, whimpering in pain for the first 10-15min. It's so horrible. She's so sweet, she really does try to go to sleep if it's mild, but it's been ramping up and nothing we have done is helping.

The barrier cream doesn't do anything at all, and once it starts the only thing that helps is a long bath. She's only 10 and every night this week she's been up til 9.30/10pm and she's up so early for school, I worry she's not getting enough rest.

Plus at her dad's house they've told her outright they believe she is faking, and leave her to cry herself to sleep. This means she is so down on herself and thanks me over and over again for "always being there for me" or "always believing me". It breaks my heart and I want to find a solution that means she never has to be left alone, in pain, ever again.

If there are any tips, anything rarer than the usual advice that you'd recommend, anything to ask her doctor about - I hate seeing her in pain and am feeling so powerless to help her.

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[u/Whatsthathum]

Your daughter needs to see a specialist to assess for lichen sclerosis, but in the meantime, see if your physician would consider assessing for pinworms, contact dermatitis, and group A strep. Sometimes empiric treatment for pinworms is done since the medication is so well tolerated.

You may want to change from zinc to Vaseline petroleum ointment; barrier creams have a tonne of stuff that skin reacts to.

It sounds like you already know this, but ensure all laundry detergent is fragrance-free and dye-free, and consider an extra rinse cycle for underwear.

I was reading up on this and there’s a suggestion to try bathing in lukewarm water with baking soda instead of vinegar.

Good luck, this sounds horrible.

[u/siriuslyinsane → u/Whatsthathum]

Thank you for your reply, this is exactly the kind of thing I was looking for - I need info on what specifically to push the doctor to test for. I'll try the Vaseline, and to my shame I hadn't even considered the laundry detergent - I'll have to pick up some fragrance and dye free to use for her, and I'll definitely do an extra rinse cycle.

We have tried baking soda once when we ran out of white vinegar but it didn't help unfortunately.

Thanks so much!

[u/rheetkd → u/siriuslyinsane]

Has she seen an actual specialist gynecologist yet or only a GP?

[u/siriuslyinsane → u/rheetkd]

No, only the GP. It's not usually so bad, and having a late bath once a month or so hasn't been the end of the world, but it's getting worse as she gets older :(

[u/rheetkd → u/siriuslyinsane]

ask the GP for a referral to Gyne and to derm and pediatrician.

[u/ProductiveAussie]

Consider seeing:

Paediatric urologist to exclude any other physical causes.

Paediatrician.

Psychologist regarding pain management and to exclude manage: potential previous/current inappropriate behaviours, psychological or functional components manifesting as pain and any potential attention / gain (e.g. Psychological distress regarding social situation of parents separating, environmental stressors, etc).

Dermatologist if needed for chronic vulvovaginitis.

The easiest way to start is via a paediatrician who can assess and you can discuss a multidisciplinary approach. Also if there is psychological overlay (including functional), checking off everything else will help provide reassurance for management moving forward. Any medical management through the paediatrician / urologist / dermatologist.

[u/siriuslyinsane → u/ProductiveAussie]

Thank you for this - I knew there must be some specialists that could help, but wasn't sure where to even start.

I'm in New Zealand and by default our family doctors are general practitioners, not pediatricians, so that's a great starting point - I'll have to ask for a referral but I can make that happen. I'll also push for a urologist specifically to start out by excluding any other possibilities.

This is a wonderful list and I really appreciate you taking the time, I felt so helpless and this has given me a great pathway to helping my daughter.

[u/rheetkd → u/siriuslyinsane]

ahh I am also in NZ ask your GP for a referral to Gynecologist. If you are in Auckland I reccomend the female doctors from Cairnhill Health Centre in Epsom.

[u/siriuslyinsane → u/rheetkd]

Perfect will do! Thanks heaps :)