9 year old with pain when she has a wee

[rochelle01]

Evening all,

Im loosing the will to live at the minute. I have a 9 year old daughter who has been diagnosed with vulvovaginitas/vuldina.

She has has had this diagnosis since the age of around being 5/6 years of age. We have seen both private and NHS gynis. Due to her age its very restrictive of what they can do.

She has flare ups every week, I am in bed with her most nights to get her to sleep as she is crying in pain. We are using non bleached toilet roll, Ecover non bio wash liquid, 100% cotton pants, filtered water and fullers earth cream and perineal icw packs, and a sitz bath. She does not use anything in the bath.

She is mid flare up now, been to gps for a urine test and no uti they are just putting it down to a flare up of her condition. Her skin is mainly red around her private area and when she goes for a wee she complains it hurts both inside and out like someone stabbing her with a needle. I dont know what else I can do to help her and the gps and gynis have been useless and are just saying she will grow out of it. Its getting her down and its getting me down as i never get any time on a night, its been going on for years and I dont know how much more we can both take. She is currently waiting on a hosp app to have a camera, im hoping that they will check her kidneys and bladder at same time. She has started puberty as she is growing a few hairs down their and its still not getting any better.

Has anyone else experienced a similar thing?

From one desperate mum
x

My 11 year old has just been diagnosed with vulvovaginitas. She’s been in bed a few hours but has come crying in pain tonight. I’ve just come on here about to make a post and found yours! She also has a fever and feels like down below is burning! We are trying a bag of peas on the outside of her pyjamas to see if it might help and get her back to sleep! I can’t image how hard it’s been for you x

sorry to hear that your daughter is going through it too. So she is 11 now, can I ask what age it started? I keep being told that it will go when her hormones kick in but at age 11 you would think hormones have kicked in! i have perineal ice packs for my daughter for bed time. I have about 6 in the freezer as she goes through them! We have a sitz bath for her too as i got tired of running baths throughout the night! Its an awful thing to have and many gps just shrug it off. My daughter said she wanted to end her life over it a few months back, broke my heart 💔

I am sure you have done this but one of the most common causes of vv in girls is threadworms. Have you done the night time torch checks?
Sorry if this isn't relevant.
Are swabs and urine samples clear?

Hi, not at all im open to all comments and suggestions. I treat her every 3 months as a precaution and so ive ruled that out. She had swaps done last Nov as she got thrush after taking antibiotics for 1st time but the results took a week to come back, in the meantime she was referred to hosp from gp due to the amount of pain she was in and ended up in hospital for 4 nights, 2 of those nights they gave her morphine for the pain. It was the worst week of my life, 4 docs examined her and all missed thrush. We got the results back the day she got let out of hosp, they said the thrush ontop of her condition was the cause so after trying 2 different types of canesten cream, she was presciped the tablet. I have never sufferes from thrush so had no idea , when I pointed out the discharge, they said it was the barrier cream we have been using. She then went on to amitriptiline to see if that would help and it didnt. X

The 111 GP today / yesterday (Saturday) didn’t really look very well. They probably looked for 10-20 seconds and covered her back up saying it was vulvovaginitas did also did a wee sample and said she needs to drink more. Now she needs to wee a lot tonight. I’m not very happy and regret kicking myself tonight that I didn’t do more today!

All this drink more has not helped us! As long as she drinks a fair amount during the day of water not juice or fizzy. Try not to get her drink too much on a night as that means more wees and more pain! Its common for it to be worse on a night x

Threadworms only appear at night. You have to look at about 11pm.

We have given her some lucozade sport she’s been back and forth to the loo, shes also got pains and aches in her legs knees and belly plus the rest. The ice helps ever so slightly. I’m toying with the idea to call 111 again if she doesn’t settle in the next hour x

Are you sure it’s not cystitis? Urine tests are useless, it is diagnosed by symptoms.
I has my first bout as a child.
Paracetamol, hot water bottle and drink as much water as you possibly can.
Needs antibiotics in the morning- do not be fobbed off.

I’m not sure. 111 called us back and just said see our doctor tomorrow

Hi
sorry to comment when this a few days old. Just wondering how your dd got on? My dd has started today with burning, redness and lots of awful iritation. just wondering if you have any tips on how to help with the burning skin feeling! cant see the gp till tomorrow

Wondering how everyone has got on with these symptoms as my 8 year old daughter has the same

UPDATE.......
Sorry its been a long time since my last post. I put a complaint into my GP, I got invited in to speak with one of the partners. She said there is nothing more they could do until my daughter had been seen by Gyni and had the biopsy by the local hospital (not children specialists). She said all she could do was chase the hospital. I said not good enough, she asked if I wanted a second opinion, I said yes ofcourse I do!! She then asked me to go away and find hospitals that have have a gyni team that see children and she would also do the same. She asked if I was prepared to travel and I said Id travel to the moon if it helped!! So we found Alderhey hospital in Liverpool. Fast forward a couple of months and we got an appointment, we booked her the day off school, myself and my husband a day off work and booked a hotel nearby as the appointment was for 9am in the morning and no way did I want to miss it or be late. We arrived at the hotel the evening before and I received a text message cancelling it. I was distraught as I really had my hopes up and so had my daughter. A few weeks later we were offered another appointment and she was finally seen by a lovely lady gyni who specialises in children and issues of this nature. She had a good look at Abbie and confirmed severe vulvovaginitis. I explained that I had doubted it was this as she never seems to get a break from it and Id read that vulvovaginitis comes and goes. She said its different in every case and her skin was very very dry which was making it red and sore and painful when passing urine. I said it always looks moist though so this really surprised me and none of the other medical professions that we had seen had ever said this. She prescribed estriol hormone cream applied thinly morning and night until she starts her periods and her hormones sort themselves out and Hyromol ointment to be applied up to 8 times a day. She also prescribed Dermol cream as a soap substitute for her private area. She advised showering rather than bathing. I said I was doubtful that this would work as over the years we had been prescribed numerous creams, she looked at her records that I had taken with ,e with all the creams that she had been prescribed over the years and she shook her head and said these had mostly been anti fungal creams or steroid cream which would not help and were only for short term use. She said she needs to apply cream, literally later it on every day until her periods start. We have been using all the above for 4 months now and I have seen a massive improvement. We dont apply the hyromol 8 times a day, we do morning and night as she is at school and finds it embarrasing, she has to use a panty liner as the cream soaks through to her clothes. She is now able to use scented shower products for under her arms in the shower without it causing a flare up and she uses her special soap for her privates to wash away the previous days cream. Whilst I was there I asked about the camera and biopsy that my gp had referred her for and said no way, she said that is pointless and will only make it more painful for her to go for a wee. The redness has gone, it was all around her bits and her bum like a pear shape. So please please if your child complains of the same symptoms, try these creams before having anything surgical done to them. I cannot believe we have been fighting this for 6 years when it all it took was 20 minutes with someone that has experience of this condition in children. Feel free to ask any questions. My daughter now wants to be a children gyni when she is older so she can help children like her. Over the past 4 months she has complained of being achy twice, I don't flinch every time she needs the toilet, she is sleeping much better and so am I. It really was getting us all down. I felt like the GP's were not taking this condition seriously. xx

Oh I mentioned that my daughter had started to grow hairs down there and I had been told that once she entered puberty poof, it would just go away! She said she is in very early stages of puberty and it will be when her periods start that it should certainly improve if not go away completely.

You don’t need scented products on her underarms to keep her hygiene up. A gentle soap will do just as good of a job and you really should reduce irritation. Same for shampoo and all other products. They all run off and the fragrances just don’t add to their effectiveness in any way.

Thank you for the update, my dd is 7 and has struggled since she was 4, hopefully this will help.

Thank you for the update! Would you be willing to share who you saw in Liverpool? I think my daughter is at the point where she needs estriol (which I had read may help until periods start).

Maybe she just likes it and it makes her feel more “normal”
if it’s working… it’s fine

Think we may have seen the same doctor for our DD. Hydromol was amazing stuff, worked within about 2 weeks, along with the dermol as a soap substitute. I can't understand why GPs aren't trained in this simple combination of emollients. It was life changing but so frustrating it hadn't been prescribed earlier.

Suspect the OP saw Cara Williams, as she's the gynae at Alderhey. When we saw her the waiting list at Alderhey was longer than I think it is now, and were at our wits end. So we saw her privately at Nuffield hospital, Chester.

Thank you. We went to see a dermatologist and she diagnosed ‘vulvitis’. She ruled out lichen sclerosis. She prescribed an emollient/barrier daily (aproderm) and a steroid/anti fungal/antibacterial (trimovate) for 7 days for flare ups. This has worked for 4 months but my daughter has now been in a week long flare. The current pattern is that she wakes up and feels fine, then goes to the loo and feels sore within about 30 mins. But after putting on the emollient and drinking loads of water she’s then fine for the rest of the day. She’s able to be very specific about where it hurts. It’s in a very specific area ‘just inside’. I’ve also noticed she seems constipated when she has a flare up and the pain particularly comes on when she tries to go to the loo.
she has showers only, doesn’t use any soap and only cotton underwear.
I’m going to buy Hydromol today and use much more liberally…….ive also just treated for pinworms as I’m pretty sure this all started (about 4 years ago) with a bout of pinworms.

Jules555 · Yesterday 23:25

Thank you for the update! Would you be willing to share who you saw in Liverpool? I think my daughter is at the point where she needs estriol (which I had read may help until periods start).

It was Cara Williams. We have been to see private specialists through the Spire and Nuffield before but none were children specialists and they were the ones who suggested a camera and biopsy also.

Jules555

Sorry to hear that your daughter is also suffering. As per my earlier post, I also treat my daughter for worms every so many months to rule this out as its one of the first things medical people have said it could be. So I wanted to rule this out and for them to concentrate on the issue rather than waiting for years for another appointment. Lather the hydromol on morning and night and see if that helps when she wees. I found perineal ice packs a godsend for nights also. We havnt had to use these since using these creams though but they may help your daughter in the short term. They are easy to buy from amazon or ebay. Let me know how she gets on bless her. xx

Ramblingaway

Thanks for your post. Yes I know, me too!! It would save our girls and us so much frustration and upset if they knew what to prescribe seeing as there are not a lot of children specialists out there and the appointments are like gold dust. Thats why I updated my post to help other people going through the same thing. I went through years of listening to my daughter cry in pain and roll around the bathroom floor begging for me to take the pain away. Id want to bang my head against the bathroom wall most nights because I didnt know where to turn to in order to help her. My husband and I even looked at taking her abroad for help because we had been back and forth to the gp for years. I just hope we have turned the corner and this continues to work. 4 months and counting thus far! xx

Can I ask if after getting the estriol prescribed by the private gynaecologist, you were able to get it represcribed on the nhs? I went to see a private gynaecologist today as my daughter is still having terrible flare ups and she prescribed estriol but said gp’s may be uncomfortable re prescribing as it’s off label for children. Did you have any issues with this? Thank you!