nothing is working!

hi all first off i would like to say how glad i am to find a website like this.
i have an 8 year old daughter,at the age of 3 she started having complaints with her down below. after countless times visiting my local gp i was told the same thing,she has thrush or sistitis (sorry about the spelling) she would be up in the night crying saying it was burning and stinging. this carried on untill she was 5 years old then things got worse to the point where she was pulling her hair out in pain screaming for me to help and to take her pain away. it wasnt until last year she was finally referred to a specialist at my local hospital. we tried all types of remedies such as creams,gels,meds,ice packs nothing worked! she finally referred my daughter to uclh where we was told bethany had extremely sensitive nerve endings she referred my daughter to great ormond street to start pain management which is where we are now.this is where we finally got a diagnosis that we had waited 5 years for,it is vulvodynia. her consultant there has put my daughter on 5mg of amitriptyline this also did not work. she had another appointment with pain management 3 weeks ago and he has now upped her tablets to 10mg,this also dont block her pain. she is still up nearly every night for hours on end crying and uncomftable. i just feel like i am hitting a brick wall all the time. i hate seeing my 8 year old like this and im really worried for her future. sometimes it just seems these doctors just dont understand

Hi,
I'm too sure what to suggest, but just wanted to say that this is a horrible condition to have and I feel for you and your daughter as no 8 year old should have to go through this. In term of medical professionals I think everyone will have a story to tell. It took me over ten years to get a diagnosis. I had frequent acts of cystitis when I was young between 8-12 year howwever all I needed was a salt bath and it would go away, shame that doesn't work anymore. Over the last year I have seen a women health physio who has been really helpfull, as your daughter is so young this may be difficult as it does involve internal massage, but she did look at other muscels eg my tummy muscels were really tight which I had no idea, I'm also seeing a chiropractor who is running a study about vulvodynia. Which is interesting as she will also ask about your birth and development as a child. My pelvis is not on the right place and a few other things. Other option is to look at diet is she eating foods which are acidic, does she drink squash or fruit juice, fizzy drinks ?

Hope this helps

Kt

thank you so much for the tips i will defo give them a try. and thank you for taking your time to writ to me, really appreciate it

kelly xx

Hi Kelly,

I am so sorry your daughter is having to deal with this condition. I hope you have a breakthrough soon.

I thought I would tell you the things that have helped me in case they are any help, though I guess there are limits on the amount of meds you can give kids, I’m afraid I don’t know about that side of things.

So I take 150mg lyrica (also known as pregabalin) per day and this helps to keep my pain at a manageable level. Before this I was on amitriptyline and that didn’t help me.

Also I use a topical anaesthetic down there at night to help calm the nerves, I use instillagel which is normally used to insert catheters and I get that on prescription.

Hope you find something that works soon

xx

thank you very much liz i will look into the cream xx

Hi Kelly - it's heartbreaking to read your story. I so hope your daughter can find some relief soon.

Similar to sunflower's comments, I found a chiropractor really helped me as my pelvis was misaligned. Maybe worth checking if your daughter has an alignment problem somewhere in her back or pelvis??? (this might possibly be a cause of over-sensitive nerves as bones out of line can effect surrounding muscles, ligaments, tissue and ultimately nerves?? - its all connected)

Also I found in the early days when my pain was really bad that accupuncture helped. This might be scary for a child but i found the needle insertion really didn't hurt and it did seem to help.

Hope you find something that works.
x

Hi Kelly,

It sounds a lot like it might be caused by 'nerve strain'/internal organ strain.
If creams and tablets etc have no effect. This was my experience.

Basically your internal organs can be out of alignment. If they get pulled up and back this can cause all the never endings in the pelvic region to be 'pulled' up and back too as they are all connected to your uterus. And this can cause all sorts of horrible nerve reactions (burning and stinging around the vulva AND deep stabbing pains in the vaginal passage and uterus). I often feel likke my 'insides' want to drop out too which is a painful sensation.

This can be cause by bladder infections and kidney stones BUT as in my case it can be caused because you are walking, sitting and going to the bathroom wrong (I hold muscle tension in all the wrong places something that can be re-taught). If this is the cause of your daughters symptoms a vulvadynia trained physio should be able to relieve her symptoms and teach her how to use her muscles right.

I don't know if you have physio's in america (perhaps you call them chiropractors) but my physio was trained in vulvadynia treatment in the USA so if you ask questions relevant to my comments above you should hopefully find someone that can help!

As a note similar problems can be caused by having a few discs in your lower spine out of alignment.
OR
You can also have pelvic floor pain (that feeling of insides dropping out) caused by food allergies causing damage to the digestive tract. I had a girlfriend with a little girl with similar problems that was caused by an allergy to salicylates in food.

Good luck finding answers for you little girl poor darling!