Does this affect children?

[mom]

I am looking for personal stories of childhood cases. Has anyone lived with this as a child? I am going through this with my 7 year old. We have been to countless Doctors and I am confident she is suffering from PN.
Please help me understand this fro a child

[A's Mommy]

This is horrible... oh how I feel for you.

Do you have any idea of how your child may have gotten PN?

Which doctors are you seeing?

Try contacting either members: kat or pianogal

I believe they either suffered or think they have suffered since childhood.

Prayers,

Athenas Mommy

[pomegranate]

There was a mom on the now-defunct forum who believed her six year old may have had PN. Unfortunately, we can't access that info. Hopefully someone on here remembers more of that story than I do.

I will be praying for your family. No child deserves this!

[Karyn]

There was a mom on the now-defunct forum who believed her six year old may have had PN.

Yes! That's who I thought the post may have been from! But regardless ... big hugs, Mom!!!! I'm so sorry for what you're going through. I'm sure the not knowing is just as bad, if not worse than having to witness your child in pain. PLEASE fill us in on some details and history so we may collectively pull together in an effort to help in any way we can.
Warm regards,
Karyn

[Celeste]

There was a mom on the now-defunct forum who believed her six year old may have had PN. Unfortunately, we can't access that info. Hopefully someone on here remembers more of that story than I do.

I will be praying for your family. No child deserves this!

It was a lady in West Virginia. She got her daughter into PT and found she had really hypermobile joints. Her mother had reported that she had an odd way of sitting due to how her joints moved. The last I had heard from her, the girl was getting relief.

[kat]

I was born with pudendal and obturator entrapments.

Two ligaments grew together in the womb on my left side crushing the pudendal nerves and they never grew to length. Decompression surgery was done and now I have been in PT stretching these nerves to the correct length so I can walk.

The obturator nerve was threaded through ligaments on the front of my pubic bone on my left side and those also had decompression surgery.

Due to having these since birth I developed hyper arousal, sexual dysfunction, vaginal varicose veins and many pelvic floor dysfunctions along with an unaligned pelvis.

PM me if you want to know about how this shows in a child so you can diagnose your child if need be.

Loves

[mom]

Thank you for all of the comments.
My daughter's symptoms are constant genital itch and severe "tummy" pain in which she wants to take tums all the time. The pain is worse at night, and after she eats. She does say that she feels like she still has to go to the bathroom after she has just finished going.
We have an appt. with a pediatric neurologist in Jan. I don't know if he is familiar with PN, and has prob. never seen it children.
Her Doctors, due to the fact that haven't tried veery hard to find the cause of pain, keep suggesting a phsycologist. I appeased them with a visit. But I know this is not in her head! We won't be going back.

[Violet M]

Mom, I hate to say it but a lot of neurologists have never heard of PN. It's good that you have an appointment but please try not to get your hopes up too high just in case they have never heard of this disease. And maybe while you are waiting for this appt. you may want to have your daughter evaluated by a physical therapist familiar with PN and even start researching the different PN docs for a possible evaluation by one of them.

[mom]

Thanks Violet.

I am looking at the Dr. in Minnesota, and I have seen that there is one in houston. I also discovered one who claims to specialize in PN at the university of Oklahoma.
Has any one heard of these Dr's?

Kat and Pianogal you are a GOD SEND!

[Charlie]

Thanks Violet.

I also discovered one who claims to specialize in PN at the university of Oklahoma.

I know there is a surgeon who has started performing pudendal nerve surgery in Oklahoma. I am so sorry to hear that your daughter is having to suffer this condition. I hope you can get help for her.

Her Doctors, due to the fact that haven't tried veery hard to find the cause of pain, keep suggesting a phsycologist. I appeased them with a visit. But I know this is not in her head! We won't be going back.

I agree with you here. It is not in your daughters head. Try and find medical experts in this condition to help your daughter.