My 12 year old was recently diagnosed with Vulvodynia

My daughter began having burning and irritation this past July. First they treated for yeast, twice. Then they did a vaginal swab and found BV, she was treated but no relief of symptoms. The burning and irritation seems to cycle, a couple days mild, then worse, then severe and the we start back with mild.

Referred to urologist because even though she was testing negative for UTI, every urine sample had traces of blood. Urologist only did urinalysis in office which was negative and put her on low dose antibiotics for 6 weeks with instructions to call in in no improvement in 2 weeks and she'd give her prescription for yeast medicine.

Went back to PCP because I was unhappy with urologist appt and thought it important to test for yeast before treating for it. PCP did a vaginal swab, negative for yeast or BV and a urinalysis which was negative but still sent it to be cultured. Culture came back positive for UTI, was put on stronger antibiotics, no relief of symptoms.

Back to PCP who diagnosed Vulvodynia and put her on Clobetasol ointment 2x's a day for 3 weeks. Cycle had an extra day of mild but still cycling to severe and pain worsening before and during urination and shooting pains up to her bladder like UTI. She has had slight improvement in redness in the outer areas but still real inflamed on her urethra and vaginal opening

Returned again to PCP who wants a kidney ultrasound done, see the urologist thinks she needs a cytoscopy and as far as the Vulvodynia burning and irritation, she thinks visually it looks about 30% better and her reassurance was "Well it's not a life threatening thing, it's just a nuisance really. Lots of people go through it" She is having us discontinue the Clobetasol and just use Calmoseptine for discomfort.

I've been crying on and off because this is so much more than a nuisance, it's messing with her quality of life. She keeps asking me when it's going to go away and it gets worse the more active she is, like just going outside to play with her friends. I'm doing all I can at home to prevent, washing her clothes in hypoallergenic soap, rinsing then twice, she only showers and no soap in her vaginal area (never has because I know and taught her not to) loose clothes, 100 cotton white underwear. She drinks lots of water.

My discouragement and frustration are at the lowest they've been because I felt like the PCP just downplayed the Vulvodynia like it was no big deal. Any advice on what more I can do at home and where I should look to next for treatment would be appreciated. Not sure if she needs to see a dermatologist or gynecologist or if even the urologist can help with the Vulvodynia.

That's a horrible situation. It's bad enough to have as an adult. My sympathies.

As far as the urinary symptoms (I also have UTI-like pains) have you tried paying attention to diet? So, whilst I wouldn't necessary advocate playing about too much with a child's diet without medical approval, you could try her cutting out carbonated and acidic drinks (fruit juices, coffee, tea), acidic foods like citrus fruit, and keeping chocolate and artificial sweeteners to a minimum, if you are not doing those things already. A food diary - writing down and seeing if you notice any patterns/triggers - is something else that may be worth a try.

I would think a dermatologist (especially if you can find one who specialises/has an interest in vulval dermatology) would be worth consulting. What sort of doctor is a PCP? Paediatric something?

Thank you! I will for sure try the food diary, she already doesn't drink soda/juice or eat artificial sweeteners but she does eat citrus fruits and chocolate on a regular basis.

She is seeing a Nurse Practitioner in a Pediatric Office. PCP just stands for primary care physician which is the regular dr/nurse she is allowed to see without referral. Her insurance is not the best and the NP said no dermatologists are currently taking it but thankfully on the first of the year she will be on my husband's insurance and should be able to see any Dr she needs to see without problems.

Right now it's just a matter of getting through the next couple months until we can see a better Dr. We were seeing the nurse every 2 weeks but at the appointment yesterday she did not have us schedule another appointment with her. I think she just doesn't know what else to do or try.

I was 12 years old when I first started experiencing vulvar pain, and though my pain sounds different than your daughters, I know how she feels! It's great that you're advocating for her with the doctors, and I encourage you to continue to do so until her pain is resolved.

What I could recommend on the home front would be would be switching all her bath products with 100% natural ones (read the ingredients, "hypoallergenic" labels can be misleading). Sulphates can cause irritation in that area, so its worth a try. Switch all her products; soap, shampoo/conditioner, face washes, bubble baths etc. Anything that could run down her body and come into contact with the area. I buy mine from local health food store, along with an all natural laundry soap.

Some people, including myself, have found it helpful to swab irritated areas with an apple cider vinegar dilution, using raw, unfiltered apple cider vinegar (Bragg is a good brand). You's want to start with a mild dilution though to make sure it helps, and doesn't aggravate the area. If you look it up you'll see that people use it to treat UTI's and Yeast Infections etc.

I hope your daughter gets well soon!

Thank you so much for the advice! She's never used soap down there but I'd not thought of other products possibly irritating and never heard of the apple cider vinegar either. It means so much and I'm so thankful to have more things to try to help. Do you know if there is anything that we could put in the bath water that would help? When it's real bad soaking in warm water helps.

My specialist suggested I use Oilatum in the bath. http://www.amazon.co.uk/Oilatum-Junior-Emollient-Bath-Additive/dp/B003N3ERYQ/ref=sr_1_1?ie=UTF8&qid=1444913178&sr=8-1&keywords=oilatum+junior

I use the kids version as it is fragrance free and the adult one isn't. I think this may be a UK brand though, and I'm guessing you're in the US?

I've also used 50:50 white soft paraffin/liquid paraffin ointment in the bath water. http://www.amazon.co.uk/Bells-EMOLLIENT-50-BELLS-500G/dp/B001RYNNYI/ref=sr_1_1?ie=UTF8&qid=1444912971&sr=8-1&keywords=white+soft+paraffin+liquid+paraffin+ointment

This is literally just those two ingredients, so much less likely to cause any sort of bad skin reaction, however it is very very greasy and slippery, so much care is needed. Over here the 50:50 comes in a 500g tub for about £4 at the pharmacy. It's usually applied to skin under bandages for certain conditions rather than put in the bath, but it puts an oily film on the water and on my skin which is soothing.

The Oilatum bath is more pleasant as it is less slimy and is formulated specifically to go in the bath.

I've got a 'portable bidet' plastic thing I can sit on the toilet and fill with water so I don't have to run a bath just to soak the affected area. I sometimes use this on a bad day in the middle of the day as it is quicker and uses less water than having to run the bath. This sort of thing: http://www.amazon.co.uk/Bells-EMOLLIENT-50-BELLS-500G/dp/B001RYNNYI/ref=sr_1_1?ie=UTF8&qid=1444912971&sr=8-1&keywords=white+soft+paraffin+liquid+paraffin+ointment

Those links are obviously to UK Amazon, but I'm sure if you ask your local pharmacist for something with similar ingredients they will be able to help you find an American version. Or maybe US Amazon has them.

Thank you! Yes in US and found the Oliatum Jr on US amazon and the plastic deal is called a sitz bath here and thanks to you for mentioning it because when I looked that up I found a bottle I'd been looking for but couldn't remember the name, Peri Bottle, it's the one they send home with you after you have a baby to rinse after urinating. She's using a spray bottle now but it's not as good.

I hope those help

Putting a little Baking Soda in a warm sitz bath or bathtub can be soothing.

Thanks web96, we will try that as well! Everyone that has posted on the this thread has been so helpful. I really appreciate it.