My 10 year old has Vulvodynia!

Our daughter is 10 years of age and has suffered terribly (for about 5 ½ years now) from what we now know as Vulvodynia. It has been such a roller coaster ride! She still suffers daily and we are at our wits end.

When she first started having symptoms, we knew it as a VERY sore, red vulva. Which she describes as “like boiling water was poured on me”! She was in extreme pain. When a young girl has these types of symptoms, before exmanation, some of the first thoughts are abuse. This in itself was extremely hard for my husband and I. After examining, it could always be seen that it was not.

Through the years we have been sent to her Pediatrician, a Dermatologist, and a GYN. She has been checked for everything that you could imagine. Before each visit to the specialist, we asked (begged) to be seen when her skin was affected. “You have to make and appointment.” By the time her appointment came, her skin was no longer affected. Therefore, at the appointments they saw nothing and could not see or “feel” her pain. We left with them saying, “Next time she is affected, call and we will get you in.” Nobody was able to diagnose our daughter.

Moving ahead, we didn’t realize until about 6 months ago that the pain comes all the time! (Her vulva doesn’t have to be red to have pain). We thought that the pain was a symptom of her Vulva getting the “burn” or just recovering from the “burn”. A little girl only explains it as well as she can and the parents always want to believe their child but can not help in thinking that maybe she is exaggerating (even though she has never giving us reason to) or has low pain tolerance.

Fortunately, I confided in a co-worker who one day came to me with information that came from Dr. Oz’s show. THANK-GOD! Our daughter cried when we found this information on the Internet. So now what? We saw her Pediatrician (who always tried his best to figure it out and was thankful that we finally found a diagnosis) who then made an appointment with a Women’s Health Specialist in Portland Maine. We have had one appointment with her. We left with a good feeling and a prescription for a pain reducer. The good feeling didn’t last long. The pain medication doesn’t work at all.

To top things off, our daughter is also suffering from NO SLEEP for the past 5 months. We do not know if this is caused from the constant pain. She cannot sleep, she has a hard time falling asleep and then when she finally does, she wakes up 3-4 times a night!

Everyday is a tearful day for her. The pain consists of needle like pains to knife stabbing pains. The pain will stop her in her tracks. Her clothing consists mostly of yoga pants and sweat pants.

The episodes of pain are not consistent. They can last from 5 minutes to an hour. Sometimes they will come one right after another and sometimes she gets a break in between. She has not had the “burn” for about 4 months or so, but it will come, it always does. Everyday we wait one more day until her next appointment. We can’t do it anymore! It is completely tearing her apart! She is a very bright, beautiful, fun young lady. Last night is one of many nights that she sobbed and sobbed. She takes blame for all of it. She says that she is ruining our lives. She says, “I want to do well in school (which she always has) but I can’t lately, I am so tired.” “I can’t take it anymore Mom.” “I am so exhausted Mom, Please I just want sleep.” The pain and the lack of sleep have equally affected her life. As her Mom (and Dad) it is killing us!

NOTE: We have just learned that the “hot boiling water or acid like burn is not only “on” the skin. It happens on a daily basis “inside” and “out” without the redness. This comes with the knife stabbing and sharp needle pains.



March 16, 2010

Her pain is every single day. We are now starting to count the times that she is free from pain, which is usually less then an hour. She has learned to manage some of it but there are times when it is completely unbearable! Pain is mentally and physically exhausting! Last night was another awful night! My 10 year old baby girl was in such pain! It was killing me! It lasted a straight hour and then finally minimized itself to “duller” pains with some relief in between. Her specialist has referred her to an Acupuncturist and also to Boston Children’s Hospital. We have an appointment with the Acupuncturist on Wednesday and after a week we are still waiting for an appointment with Boston.



March 29, 2010

It has been three weeks since we thought we were going to “be referred to” Boston Children’s Hospital. The last I heard from her specialis’ts office, they said that it is in Boston’s hands now and is up to them if they want to take the case or if they want to refer us to New Hampshire. In the mean time we sit and wait. It is the same pain different day.

Any help anybody can give us would be greatly appreciated!
Thank-you!
Tammy

Thank you so much Tammy for sharing. Its horrible to hear of such a young child experiencing this pain. If she is in pain everyday im not supprised that she is not sleeping. When the pain is bad I often wake up with it.

I would like to suggest that you email Dr Howard Glazer for any advice regading Vulvodynia in children. He is the writer of 'The Vulvodynia Survial Guide' I have emailed him before, mainly to ask him to advertise my fourm but he does reply despite how busy he must be. His email address is DrGlazer@nyc.rr.com.

I take it you are in USA? He may know of a specialist in your area, who has worked with children. Anything is worth a try.

What sort of self help remedies have you tried with your daughter? These are some of the things I do that help, you have probably heard them before or do them but I will list them anyway as there maybe something you havent tried yet:

Wear white cotton only knickers and when washing them use NO dertergent at all, just wash on a hot wash. 80c should kill all bacteria's. I also only use non-bio dertengent on rest of clothes and no fabric condtioner
Dont use any shower gels or bath products on that area and do not sit in the water in the bath. I only spray the Vulva area with water to clean.
I see that she is alreay wearing soft leggings so continue with this.
I sometimes use a painkiller when in a lot of pain but it doesn't always help. The main one that helps more than most is Ibuprofen maybe it is becasue it is a anti-inflamatory???
I have used hydrocortizone creams when in a lot of pain but only for a week as they are strong.
Do not spray toliet seat with any chemicals clean with hot water

In terms of sleeping I too find it hard to sleep for various reasons, I find listening to my favorite music or chill out music in my headphones helps.

Please let us know now you get on, I wish you and your daughter all the best

Sebby

xxx

I'm so sorry to hear about your daughter. the pain she describes is similar to my pain. my pain has always been a burning pain. i tell people at it worst, it feels like someone is holding a blow torch to my vulva. it sounds like your daughter has generalized Vulvodynia like me. But, i am a 45 year old woman. i actually take Trazadone to sleep. i was already taking it because i had a hard time sleeping. i know there are sleeping meds for children..even all natural meds..melatonin etc. don't know if you have tried that. also, i'm sure pain clinics primarily treat adults. Of all of the docs i have visited, i feel most confident w/ the docs at the pain clinic i go to in St. Paul, MN. i went to the Mayo Clinic in MN for the diagnosis. they knew how to diagnose but, not treat it. the problem, as i am sure you have found, is that doctors know so little about this disorder. I am on Neurontin (Gabepentin) and now Lyrica (one week). i take both together. My docs recommended i keep gel packs in the refrigerator. cool gel packs will give your daughter instant relief. I would dampen a paper towel, wrap it around the gel pack and put it directly on my vulva. that really cools down the heat/burning.

I really hope you find some things that help your daughter. no young girl should go through this pain. i recommend no underwear at night or around the house. even a lit bit of pressure can cause horrible pain. the only meds that have helped me are the anti-convulsants I mentioned. for me a high dose was necessary. i assume it hurts your daughter to sit as well. i bought a foam donut to sit on. it helps me not put as much weight on my vulva. i found that exercising has brought on horrible flare ups. so, i recommend that your daughter doesn't run around too much. for me at about the 15 minute point on a trek machine, i start to feel the burning.

sitting, sex (you don't have to worry about that) and exercising bring on the most pain for me.

Please keep us updated on your journey. visit the National Vulvodynia website for tips. I would stay away from any creams or ointments. for me, it completely aggravated my skin and made my symptoms/pain worse. my skin burned from all of the creams.

Tammy,

I don't know if you have visited the site since you posted about your daughter's story. I was at the pain clinic a couple of days ago. I am going through a full day of allergy testing in LaCrosse, Wisc. on Thursday. The doctor there specializes in women's issues. He has written articles about allergies and how it relates to the vulva. At any rate, my pain doctor told me allergies can cause vulvodynia symptoms in the vulva primarily in children. I don't know if your daughter has had allergy testing. If not, you may want to look into this.

Good luck

Julie

Hi Tammy,

Please contact me to discuss offline as my 7 yr old daughter has vulvodynia as well. She's had it since Feb 2010 and I have alot of helpful information to share based on our experience.

I'm hoping that your daughter is better and know that you're not alone. My husband and I are in your shoes and we've had success with elavil since April, which has helped alot.

God bless,

Kimberly

Julie and Kimberly
Thank-you so much for responding and caring! Our daughter is still dealing with an everyday constant burning, knife stabbing pain. It makes our heart ache more then some will ever know! She sleeps with me now. It is a sacrifice that my husband and I are willing to give so that she will get some sleep.
We have been to every Doctor you can think of....Last Wednesday we went to Bostons Childrens Hospital Pain Clinic. It is the first time we have ever felt like somebody knew what they were talking about, cared and put a plan together.
Our daughter is now on Gabepentin (no sign of any relief yet-Day 6), She will have an MRI and see an endometriosis specialist on September 3rd. I do not think it is Endo. They have also refered her to PT and a counciler (for sleep and to deal with school). She has had almost every test and medication that you can think of....Allergy testing is something that my husband and I have discussed. Thank-you for the insight, I will make that appointment soon! Oh and by the way....everybody has told us that it is NOT Vulvodynia! What else is left? "I" keep going back to it, thats the only thing that makes sence. The only other thing is "nerve related"...which correct me if I am wrong but falls under Vulvodynia. We have been through a lot since I last wrote in March. Everyday we pray that they will find a cure for her! I will keep you updated. Thank-you so much for your time and advice! I hope you also find a cure for yourself (Julie) and for you daughter(Kim). Kim I would love to speak with you. How would you like to exchange numbers?
Tammy
P.S. The miracle of it all....Our daughter is still a bright, happy, beautiful girl who loves play her harp,read,and play soccer! Thank God.

P.S. Kimberly
Our daughter has tried Amitriptyline(Elavil, Tryptizol, Laroxyl, Sarotex)twice with no relief.

Tammy

Hello Tammy,
Is the pain mostly during the night? Because my daughter has been through the same thing for years now and we just found out she had Pinworms...(She is 10 as well and has been going through this since she's maybe 4 or 5 years old)
It's very hard to diagnose because they come out only at night and since the pain was mostly in her vulva, I would have never guessed it could be worms. And I did not know it could be so painful... As a matter of fact when we read about Pinworms, it never mentions the pain it can cause... But the description of this infection fitted perfectly with what she was going through (except for the pain). Her vulva was red as well.
I saw them one night with a flashlight.
Since then the whole familly has been treated and our daughter is doing great... Cross our fingers it does not reoccur. We will be having a second treatment 2 weeks after the 1st one.

Check your daughter's anal area about one hour after she has been asleep, this is when the female pinworm comes out to lay eggs. Do not turn on the light in the bedroom, just use a flashlight and you will see tiny worms (about 1/4 inch longs). I used a scotch tape to collect some samples and brought it to the doctor... Because it's impossible to see anything during the day, this made the diagnosis much easier.

Hope this helps...

Hi Tammy, I know my reply to your post is quite old but it caught my attention because my 10 year old has Vulvodynia as well. We have had success minimizing the intensity and frequency of her "pinches" as she calls them with a low dosage of Amitryptlene. In my daughter's case the pain is also directly linked to times of constipation.
Kate

Tammy,
I just found your post. I don't know if you check back often but know that I'm thinking and praying for you and your daughter. I started having VP symptoms at 13. My twin sons, now 3, have started to complain of penis pain and I'm terrified for them as my mother also had VP for most of her life as did my grandmother. The Vulvar Pain Foundation has had members as young as 3 years of age. They call vulvodynia or vestibulitis, vulvar pain syndrome to reflect the wide range of symptoms that many women, MEN and children have who have been diagnosed with vulvodynia. Of course, the men and boys don't get the diagnosis, but they find the Vulvar Pain Foundation usually through a female relative or friend who shows them a list of symptoms and they realize it's exactly what they have except they have pain in their penis instead of vulva. If you haven't already, I urge you to hook up with the VP Foundation (they also may be able to hook you up with other children, teens who are suffering from VP so your daughter might be able to get support from a peer). I also recently joined the yahoo group, Trying Low Oxalates (I've been tremendously helped by the low oxalate diet). This group is mostly parents of children with autism who are trying the low oxalate diet for help with autism, but many of these kids also suffer from vulvar pain or penis pain or bladder/rectum pain and burning. There are also a lot of people on the board who are trying the diet for other things like vulvodynia or fibromyalgia. If you decide to join the board, send a new post out asking for help for a daughter with VP. You'll be surprised how many people will respond. You may be able to start emailing them separately also for more support and ideas.
Hope this helps.
Heidi
http://lowoxalatefamily.wordpress.com

Hi, I was three when i started to have pain down there; my nan said at the time it was very red,sore, and looked painful. I cant remember the pain that much being so young but i think that the soreness could be from IC & this condition. I would burn when i went to the toilect ( I still got it, im 20 now), I dont really know what to say to be honest at least u know what your daughter have, i only found out last week that I got vulvodynia, If she every have burning tell her to try and run to the nearest sink if she can (i find it hard myself at times) and put some cold water on a tissue paper, it stop the pain a little and to flex her pc muscles, I dont no if she got IC because I felt like acid burning myself so i thought she might have had, but im no doctor lol. I dunno if i helped you much.

Jules, I know you're post from a while ago, so I'm not sure if you're following this thread anymore. Thougth I'd post anyway, just in case. I'm intersted in the article you mentioned your doctor wrote on allergies and the vulva. Did it have any information about adults or was it just focused on children? I have quite a bit of seasonal allergies and am debating if I want to talk to my allergiest about get tested for allergians that weren't part of my last scratch test. I'm trying to find information first to figure out if I think it's worth my time and money.

Also, so sorry to hear that some of you have kids suffering from this. I hope they get better.

jules wrote:Tammy,

I don't know if you have visited the site since you posted about your daughter's story. I was at the pain clinic a couple of days ago. I am going through a full day of allergy testing in LaCrosse, Wisc. on Thursday. The doctor there specializes in women's issues. He has written articles about allergies and how it relates to the vulva. At any rate, my pain doctor told me allergies can cause vulvodynia symptoms in the vulva primarily in children. I don't know if your daughter has had allergy testing. If not, you may want to look into this.

Good luck

Julie

Tammy Im very sorry to hear your story. Ive heard that vulvodynia can effect children but Ive never read anyones story about it. I am 27 and Ive suffered for about 9yrs now. My pain is very bad to the point I cant wear pants or use the bathroom without being able to rinse and use frozen gelpacks. You can read Aroras painful story and see what Ive gone through. You sound like a very strong mother. I have hope that you will find someone to help her. I will keep her in my thoughts, and say a prayer for her.