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

Hi Jules555, no I didnt have any issues with getting it prescibed but the gyni did write to our gp saying what she has prescribed and asked that they put it on repeat prescription. Your gp should receive a letter from the private gyni staying what they prescribed. Do they say how long for your daughter to have the hormone cream for. Apply hydromol too, it works wonders!! I leave 30 mins before applying it after the hormone cream.

Thanks, she’s said to apply twice a day for two weeks then once a day for two weeks, then once every day for a month. I’m so so stressed with it all. I’ve already been applying hydramol for months and she’s still getting these awful flares where she’s screaming in pain. The gynae said if this didn’t work then they might have to consider whether there was a foreign body but that doesn’t make sense to me at all as it’s so intermittent and that could be iquite imvasive. She also then said it was possible this was psychological which totally pissef me off as there’s no way it is……she is happy at school and home, the only thing that is distressing her are these flares!

Jules555 I totally understand your frustration, its horrible seeing them in pain and you feel helpless. It felt like such a battle for us, we had that a few times with out of hours GP's, id say, do you think id be here at 3am in a morning if I did not believe that she was in pain. I set up a secure folder on my phone and kept videos of her when she was having a flare up and pics of her skin when it was so red and sore. My daughter ended up being admitted to hospital for 3 nights about 2 years ago now. They had to give her morpheine for the pain. Turns out she had thrush from antibiotics that she had, so watch for that too! It can cause a massive flare up. I told them we were not leaving until they sorted it, they kept asking gyni to come and see her but they didnt deem her as urgent as she wasnt an adult. You can imagine I was fuming!! We have paid private and travelled all over. It got to the point at the start of this year when I was just hounding my gp, put in complaints and we were finally referred to the Alderhey gyni where she was seen. We have been using the hormone cream twice a day since April, im going to reduce this to once a day then switch to once every other day. We are waiting on our follow up appointment but she said to use it if it helps until it basically goes away. People do not understand how serious this can be for us as mums and our daughters. Mine once said she didnt want to be here anymore, it broke my bloody heart! We have mini flare ups where her wee stings or she says she aches down there but the redness has totally gone. Here if you need to ask anything else or just need someone to listen to you. Sending massive hugs to you both x

jules555, also, we had the it could be a foreign body thing and the specialist said if it was there would be discharge and strong smell, she had none of that. She said using a camera to have a look would be no use as she was adamant it was vulvaginitas. The local gyni wanted to take a biopsey and the specialist pulled a face and said no do not do it. That will only make it worse! x

UPDATE, for those mums following my post, I thought I would update it. My daughters vulvovaginitis is still under control with the prescribed hormone cream. She is still under the gyni at Alderhey children's hospital.

She is and has still been complaining that every wee hurts, she feels like something is up her bottom and her private parts. I came across Pudendal Neuralgia and mentioned it to the GP and specialist. They all seem to think it isn't this but she has all of the symptoms. They said its very rare, I said I get that but it is not impossible. We were referred to the Leeds pain clinic in Jan 2024,, I have been chasing this up and put in a complaint. In the meantime, we found a children's pain specialist in Cambridge that does private and NHS, we saw him private as he was out of our area. He recently diagnosed her with Chronic Pain. He has put her back on amitriptyline and said they could also introduce pregabalin if this doesn't help. He strongly advised that she have some form of EMDR or EFT treatment to help manage her pain but I cannot find anyone that will see her due to her being under 13. I tried something called Bowen Treatment but that didn't work. I asked the GP, she said she could refer her but the waiting list is 3 to 5 years!!! At out last gyni appointment we asked her if we have done everything we can to rule out any medical problems before we start pumping her with drugs and she said the only thing they have not done is look inside her with a camera so we are on the waiting list for this procedure. They will look at her bladder also. Her school attendance is 67%. Luckily her school are very understanding but we need to sort something out. She is in her last year of primary and has her SATS next month. I'm worried about when she goes to high school and how they will manage it as school call me to pick her up early often due to her being in pain. Please ask me any questions as I want to help as many parents and children as I can. And if anyone has any suggestions for me please let me know.
xx