young daughter with vulvodynia

Hi there

I have found this forum and I wonder if any of the members are mums with daughters with vulvodynia. My daughter, age 12, was diagnosed with it last October and since then her flare ups have been progressively worse. She has hardly been at school this year and the pain she experiences is so severe that she can hardly move, sit down, not to mention going to the toilet. Not being a vulvodynia sufferer myself I cannot relate to what she is going through. Any suggestions, info that could help me understand this condition better from a sufferer's point of view would be very appreciated.

Thanks in advance for your time.

Debbie

What types of topical meds are you using? What detergent do you use? And does she use cottonelle wipes thinking they are soothing?

I've said this in many of my other posts...avoid all products with propylene glycol. That means most steroids, lidocaine, soaps, detergents etc. read your labels. Propylene glycol is like lemons on a paper cut, but somehow it has found its way into products that we are applying to very sensitive areas and it burning us!

I am still trying to get to the source of my problem, but I am think I am getting a little closer (I broke my tailbone in 2 spots). With that said, here are my suggestions:

Get an xray. See if her pelvic alignment is off...and see if there are any other issues
Test the ph of her urine. See if it seems acidic
See a natural doctor. The real doctors aren't helping me at all. Get allergy testing. See if they will test for bacteria, yeast, etc. I am looking into a yeast dna test as well
Try some food cleansing (raw foods or some other type of colon cleansing). Just because a doctor doesn't think its yeast/bacteria, doesn't mean they are right. See a natural doctor for help on doing it the right way. Keep a calendar of all the things you try.
Try a probiotic...maybe her flora is off down there
Maybe its hormonal (my cousins was due to hormones)
Try rubbing something like coconut oil on it at night. Most other things maybe worsening the condition

That's all for now. It could be so many things. I feel her pain. I am at teh end of my rope all the time with this...and still tryign to put the puzzle together. Just don't rely on the doctors too much. They just try to push pills usually.

As not being a sufferer yourself its hard to imagine just how much this hurts. The best thing I can tell you is its real, and dont for a second think shes faking it...this really hurts...I have had a child myself and let me tell you, contractions hurt but this hurts waaaayyyy more.

Get her a counselor or her best friend(that she talks to about this problem) to come over as MUCH as possible...you may be her mom but believe me, I(got it at 17) REFUSED to even mention it to my mom.

This is so much easier talking to someone about it even if they have no advice(because doctors are who gives her advice). Don't get me wrong, if you and your daughter are really close then give her more attention then anything else in the world...because, just because you give her attention about her pain and talking to her about it, doesn't mean she wouldn't like/need a day out being with her mom and being a normal girl.

I am 22, with a 1yr old daughter and I still cant be a normal girl... I have noticed over the many years of having this that I have become very distant with any and everyone and mostly shelter myself in because im afraid to let anyone in and afraid to be out and have my pain. I got VERY VERY little comfort, support and understanding from anyone in my life about this. I was a VERY talkative and social girl before I got this. I was also very confident.

I am in NO MEANS trying to scare you, I am just giving you a way to see in her head...she may be a little different because shes had it less but just know, attention, understanding, support and treating her like a normal girl in every other aspect she will enjoy, like I said earlier...even a mommy/daughter day out every now and then JUST to bond and be normal will be gold to her and knowing she was never alone will really help her mentally. This has a huge toll on her emotions and mentality also which is why its SO important to have at least ONE person she can always turn to, to vent, talk about it, whatever she needs.

Just be open to ideas and listen to what shes saying, she may not directly come out and say "I need someone to talk to about this"(for example) but if she starts to talk to you and open up to you and you want to be close to her, then dont judge, lecture or anything else except try to understand her pain, ask her questions...be her best friend in this and trust me she will look back and always love you for this.

I wish I had this with my mom.

Good luck debbie...if you want to know anything more about how its affected me so you can prevent your daughter from going through this the way I did, I am more then okay to share.

Hi Debbie. My daughter is 8 years old and has been suffering from vulvodynia since she was 3. I can relate to your story so much. My daughter also is up in pain nearly every nite and has missed lots of school. She is currently going through pain management and has been put on amitriptyline which does not help one bit. Seems like an never ending battle and its heartbreaking. Please feel free to messege me if u need support or a chat your the first mum with a child suffering I have found. Take care,Kelly.