Thought I should update! I have had my mum visiting and we have been busy here!!
We saw the pead and she said that it was a case of her Labia minora being completely fused and quite thick as well. We couldn't see if she had a clitoros, urethra, or vaginal opening. However on ultrasound all DD's kidneys are normal which is good.
For the past month the pead has had us use oesrogen(sp?) cream on Bethany to see if that opens things up or weakens the join. It would seem that it hasn't made a lot of difference and although we can see things a bit clearer it is becoming obvious everything isn't where it should be.
We head back tomorrow probably to organise a surgical consult. However we have to wait for the team from townsville to come up. We don't have pead surgens here in Cairns. I want the pead team to review DD but the pead she is seeing thinks an adult gyney can do it. I am not happy with that.
Sorry if this is confussed, DD is clingy I have typed most of this with her on my lap!!
I'll try and update again soon, Thanks for all the well wishes and support it means heaps
You have my sympathies, I'm sure this is a stressful and difficult time for you.
I think your instinct to insist on seeing a paediatric gynaecologist is abo****ely correct. I would insist on a referral to one, preferably one that works out of a children's hospital - I think the nearest to you might be the Mater Children's Hospital in Brisbane, but I am not 100% sure. You can get some financial support through the IPTAAS service, which your GP or local Centrelink office should be able to tell you more about.
Poor little bubba
I just wanted to wish you all the best. I can only imagine how stressful & scary this is for you. I hope everything is there & it can be fixed easily... & I also hope later in life she has no complications due to this (concieving etc).
Good on you for not just accepting the adult gyno & going with your instinct for a paed gyno.
Good luck & for you too!
Yes I agree with Schmickers about seeing a paed gyno but I think they would be very rare and you might have to travel to see one. I would get several opinions as to who would be the best to see. I know our gynos do surgery on children although not as young as Bethany. Have they advised you on your options? Like wait till Bethany is older or look into surgery now? Will surgery prevent her getting the regular UTI's which you said she had earlier?
Thinking of you and Bethany
oh how stressful for you Amy! I too would be going with my gutt instinct and getting a referral for a paediatric gynaecologist.
I would imagine Brisbane would be the closest specialist you could see. Hopefully you can get a referral for one.
I've tried to check that my DD's vagina is normal and open but it feels so wrong to be doing it IYKWIM. Also, she doesn't let me anyway. She's nearly 17 months old and gets jumpy when she's being wiped or anything.
Both of my girls have had partially fused labias in the first year. DD1 has a duplex ureter system, meaning she has two ureters on her left kidney and we are undergoing further testing on that. I have been told that its common to have multiple urinary tract infections with a duplex system. Hers was picked up at nearly 5 years old after an ultrasound.
So we used the cream and I couldn't notice anything different, but apparently it helped with the fused labia.
My DD who at the time was 2-3yrs was also diagnosed with a fused Labia. She was first given the cream by a Dr and after talking to a few of my friends regarding the situation a friend of mine with 3 daughter had also been through years of treatment with the same condition. She found a specialist who only deals with Paediatric Genetals and I straight away had my GP refer me to him.
I went to see him and he was HORRIFIED that Drs are still giving the cream to children with fused Labias as it is doing more harm than good!!!!! it was actually created for elderly woman ( like in their 80s ) who are having trouble down their, and not for children. He told me the cream will eventially start the children to devolop hair not on their pubic region but on the inside of their vaginal area. I left the surgery and never used the cream again and followed his advise that in 90 odd percent of girls in its own time will open.
After leaving the specialist and speeking with my friend whos 3 daughters had it, she told me her eldest did start growing the hair on the inside!
In conclusion to my story my daughters opened by itself maybe within that year and hasnt had any problems with it since and my friends 3 daughters the same. He did say by teenage years if it hadnt opened itself surgery would be an option. The specialist name was Dr Casey and said this is a very common thing and often goes undiagnosed.
This will probably be quick and garbled, it is all happening at our place at the moment but I wanted to fill you in. The Pead agreed that the cream had made no difference over the month (duh) she has done a referal for the OB team for the chief consultant to do the op. She is the only one who has experiance and would do it. She also knows me since she took care of me in pregnancy cause of all the complications. Anyhoo, I asked about a pead surgeon and was told that since DD's condition could be dealt with here we aren't eligable. Not sure about that but for now I am happy to sit back and see what the OB thinks. It is still a complete fusion with the tinist of openings, Although I could leave it it would cause difficulties toliet training. As it is we will have to wait for the OB clinic to have a spot and so on so it could be months before it is resolved. In the meantime we can stop the cream.
Thanks Snickers for the links they really helped
And thank you to those who have said they have been here before. It helps so much.
Well DD was up all night. Just screaming and wanting me. My mum flew home this moring oh and DH has the flu probably swine but there is so much of all the flu bugs up here at the moment who can tell. They are just telling people to stay home, drink, panadol, etc. I tell you if it isn't raining its pouring!
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I hope it all works out for you guys.
oh and DH has the flu probably swine but there is so much of all the flu bugs up here at the moment who can tell. They are just telling people to stay home, drink, panadol, etc. I tell you if it isn't raining its pouring!
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