7 year old with vulvodynia

My 7 year old daughter has had vulvodynia since Feb 2010. I'm looking for othere mothers of children with this condition, as it's hard to find women in my shoes. Thanks for your help and good luck to everyone!
Kimberly

Welcome Kimberly,

I do hope you can find other mothers dealing with this.

Even so I hope we who have Vulvodynia can also offer our support and advice to you.

Godbless

Sebby
xxxx

I think my daughter has this too. Have you found any relief or help yet? We have tried several Doctors and finally are going to a pediatric gynecologist tomorrow. It is red, burning pain in the vulva area. Very painful. I think I have linked it to her diet. She can't have fruit, citric acid, tomatoes, or spicy foods like sausage. We have had very few pain free days. Worse at night. Usually once a week it is hard to get her to school because of her pain.
I'm finally sending her own lunches. She can't have candy with citric acid or chocolate I'm now thinking causes a flare. We have learned from trial and error that sodas have phosphoric acid in it if not citric acid. So, we cut them out. Some flares last 1 day and is better by the next morning, but start all over with something else she may have eaten. The worst flares are 4 days and then some relief. She wants to go the Dr. but nobody can help us. We tried all sorts of creams, but they seem to hurt too. So, switched back to nothing but water and vaseline. We have seen a urologist who said maybe IC, but she does not go tot he restroom frequently. The IC diet seemed to work and help, but I just discovered this Vulvodynia and it seems to hit the nail on the head with her. There is a vulvodynia diet with low oxylate foods. So, now I'm trying to figure it out even more. It is so nice to see she is not the only child searching for help. We have had it since she was 2 that I know about, when we tried to get her potty trained as quick as possible, because I thought the burning was the diaper rash or urinary infection. But, the UI results always came back negative.

If anybody can help me please let me know. We have seen a dermatologist who was the first to believe me that diet caused her to flare. The others did not help: Urologist, gasterointerologist, pediatrician (of course), 2 allergist, even consulted an online doctor and soon a pediatric gynecologist.

I know there was a lady whose twin boys had penial pain and she was a firm believer in the low oxalate diet. Check past posts.

Do you use a liquid laundry detergent like Tide free and gentle? Most liquids contain an ingredient called propylene glycol, which caused my vulvodynia. This ingredient is also in sodas, ice cream, cake mixes etc. read your labels. I'd be happy to have a personal chat with you or others if you want to explore this topic further. Let me know and I'll post my email address.

Also, most medicines prescribed by doctors to cure this condition also contain propylene glycol...read your labels and avoid all ointments and creams containing this ingredient. You will see the results within 24-48 hours.

Would love to hear how this turns out for you.

Also be aware of wet wipes. They also contain propylene glycol.

I also found that the pain was worse at night. The reason was because I was applying al of the medicines during the day that were creating a cumulative burning sensation throughout the day. If any of you of you find that your condition is better In the AM and worse at night, then you need to consider propylene glycol as the root cause of the problem.

hi my daughter is 8 and was diagnosed with vulvodynia around a month ago. it all started when she was 3 years old and was always put down to urine infections. she is currently undergoing pain management at great ormond street hospital. she has been put on 10mg amatriptline,this does not help her one bit just makes her into a zombie :-( she spends nearly every night in pain,its heartbreaking. i wish your little one all the best
kelly xxx

I'm so sorry your little one is going through this!! I wanted to second the recommendation for free and clear type detergents. Also, NO baths, ever. Have her take a shower. All white 100% cotton underpants. And lots and lots of water. These things all helped me. Also, if she isn't terrified of it, I highly recommend acupuncture. It helped me be pain-free after just 4 months. You may also want to take her to a chiropractor to see if maybe she is out of alignment somwhere and that could be affecting her. Poor baby. This is hard enough as an adult, and as a mom myself, I know you are hurting for her. I hope you have found some success since your last post.