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Original poster

My daughter may not have a vagina I am out of my mind with worry

27 replies

PANCHEY · 19/11/2009 17:15

I have just got back from the GP. My DD2 has no obvious vaginal opening, the GP says that she can feel no indent underneath the skin where an opening should be.

A couple of months back when I first realised there was an issue, I was not so worried as my sister had similar issue and she is fine and has children, but now I am out of my mind with worry.

My beautiful DD2, what will happen to her? She has been referred and am desperate to get an appointment date so that things can be investigated. In the meantime, please can someone give me hope? Has anyone been there? Am just about to go and pick up DD1, and will need to put on a brave face...oh god.

OP posts:
Original poster
PANCHEY · 19/11/2009 17:15

bump

OP posts:
sherby · 19/11/2009 17:17

Sorry to hear this, you must to v worried.

I don't have any advice, but how do you mean no vagina? Has she the usual labia etc just not the actual vaginal opening?

SixtyFootDoll · 19/11/2009 17:17

Bumping for you, am sure there is something that can be done

Original poster
PANCHEY · 19/11/2009 17:17

I will be back post bedtime hope that someone can reassure me.

OP posts:
Tortington · 19/11/2009 17:18

discussion here

here

and here

Original poster
PANCHEY · 19/11/2009 17:19

She just does not seem to have an opening, and no evidence of labial fusing just smooth skin.

OP posts:
Original poster
PANCHEY · 19/11/2009 17:21

Thanks Custardo, but been on these links, the last post looks like might help, but no-one has responded to the post on the link unless in my panic am not look properly.

OP posts:
Tortington · 19/11/2009 17:22

you have to scroll down

Original poster
PANCHEY · 19/11/2009 17:25

Ok thanks can see it now. Yes this helps, She has been referred as her urine just kind of dribbles out, whereas before the flow was more normal.

I have also seen sites referring to intersex issues. I do hope that I am jumpimg the gun.

I really have to go since DD1 will be mad at me for being late.

OP posts:
PixieOnaLeaf · 19/11/2009 17:37

This reply has been deleted

Message withdrawn

Original poster
PANCHEY · 19/11/2009 19:42

PixieOnaLeaf thank you, this is most reassuring.

OP posts:
cocolepew · 19/11/2009 19:46

Could you speak to your mum and sister about what happened to her?

Original poster
PANCHEY · 20/11/2009 15:54

Hi Cocolepew, I have spoken to my mum, and she says that it did not even enter her head that there might be a problem with my sister's anatomy even though she did not have an opening to her vagina.

My sister had a medical procedure that rectified the issue. Only thing is, what if this is not this? I remember thinking when DD2 was born that her genitals looked just slightly different nothing major, but a very slightly differently shaped. I hope that I am just panicking and it will be the same thing as my sister.

I just want the referral letter to come through. As with us all, I could not bear anything to happen to my little girl that could hurt her. I so want it just to be the same as my sister....but the pessimist in me keeps on worrying on.

OP posts:
cositjustisok · 21/11/2009 06:11

How old is your daughter Panchey? Litte girls are so small down there that the doctor may well not have felt an indentation as she did not want to put pressure on her and hurt her to feel it. My daughter had labia fusion when she was 3. I was scared witless when they told me. We took her because she was complaining of a sore tummy all the time. She had a Uti as the urine was dribbling out of a tiny little hole that had not fused... and this was causing problems with infections. The doctor told me his little girl had the same and it was common. We were given the oestrogen cream to apply and I was not keen on using this on her..but my only other choice was surgery. She opened up after applying the cream for about 3 days. I remember being particularly scared because i could not see any thing other than smooth skin..but as I was so so scared..I asked the doctor to show me how he knows she was once open and had resealed..on the really bright lights used for smears she showed me and it was difficult to see but there definatley was a little tiny line which was the joining ofthe labia. Please try not and worry..I know easier said than done..I hope your DD gets this sorted soon. Take care.

cositjustisok · 21/11/2009 06:14

I should add my daughter is now 12 and has just started her periods and the labia fusion has never caused her any more problems...though I too was worrried it meant she had no womb or ovaries.. all normal worries when you are faced with something like this.

Original poster
PANCHEY · 21/11/2009 16:30

Cositjustisok, thank you for sharing this with me. Yes it is very scary, and I do hope that this is the same for my DD. I am concerned since her wee is only trickling out. My GP did not indicate that this is what she has, but hopefully it will be this. The GP had not hear of any hormonal cream to treat it, and seemed to be pretty anti such an idea. I too would like to avoid surgery. If you take a look at this thread again, if you are able to remember what the cream was called that would really help (I know after 9 years this could be a bit unlikely).

OP posts:
Original poster
PANCHEY · 21/11/2009 16:31

Oh and to answer your question Cositjustisok, she is 4 and a half months old (so obviously everything very tiny down there anyway)

OP posts:
cositjustisok · 22/11/2009 06:49

Hi Panchey, oh your little girl is so young....she will be tiny down there.. the doctor probably wanted a paedeatric to see your daughter because she is so young and maybe she felt they would know more than her.
I can still remember the colour of the tube of cream but not for the life of me the name...however if this helps I do know it started with "Oestro....... something or other. It was used for HRT treatment and i so did not want to use it on my little girl. My husband was in total agreement but we where also told surgery was so much more risky than the cream. I do try and block it out really because I cant worry about something that I had to do for my childs health. Luckily we only had to use a smithering on her and only for a few days so a tiny blob all in all. It really worked so quick. I will ring the doctors in the morning to see if they will tell me the name of the cream. Would you consider going to another doctor whilst you await your referal letter? I know I would want a second opinion in this case. Possibly under the really bright lights ask the doctor to have a look and see was your DD opened at one time I think this is the case..this would settle you and know that it is easily resolved. Will post tomorrow when i have the name of the cream. Try not to worry I really think it is Labia fusion and the doctor just had not dealt with it before and is referring your daughter cos of her young age.

foxytocin · 22/11/2009 06:58

one of my friend's dd also had labial fusing. she was also given the oestrogen cream which sorted it in a few days. i have seen no evidence of this myself but my friend also lkes to reasearch things so i kinda trust what she says. she said that it is related to tongue tie. (posssibly meaning that the same set of genes responsible for TT are also responsible for labial fusing) her second daughter interestingly also had tongue tie.

Original poster
PANCHEY · 25/11/2009 21:10

Cositjustisok, thank you for posting, I do hope that you are still looking at this. if it is not too much trouble I would really appreciate if you could find out the name of the cream.

Foxytocin, DD2 does not have tongue tie, but thank you for your help.

The doctor who is referring is the second one that I have seen. The first just told me to have a watching brief, however in the short time since I have noticed that she visibly does not pass urine as easily i.e. before there was a stream and now it just dribbles out.

Thank you very very much.

OP posts:
chattermouse · 25/11/2009 21:24

Panchey, just to say I hope you are able to find out more information as soon as possible. Waiting for a referral appointment is just the hardest thing. As hard as it is, try not to worry yourself sick. Try to take comfort from the fact that when your dd was born a pediatrician at the hospital will have performed a newborn health check which includes examining genitals and anus for abnormalities. If nothing too abnormal was noted then (i.e. you were not referred at this point) then this is good evidence to suggest that nothing is very wrong iykwim.

All the best, xx

cositjustisok · 26/11/2009 06:55

PANCHEY..so sorry I never posted the name of the cream , will phone the doctors this morning....I have been suffering from a few health issues recently and have been up and down a tad this week...but I did promose I would do that for you and I am so so sorry but will get on to it this morning.....

cositjustisok · 26/11/2009 06:57

Of course that should be promise

cositjustisok · 26/11/2009 08:52

Hi Panchey...Have called the doctors and was told the records have been computerised since 2000 and she must have received the cream before then. They cannot tell me what it is as the manual records are now in archieves and not local to the surgery.I think it may have been late 1999 or early 2000 that she received it. They where very helpful but couldnot help me .....and subsequently you. I do really apologise for being late with making the phone call and then for not being ablr to give you the information. Sorry about this but please keep us informed of how your daughter gets on. I think as the urine is dribbling out now it is very likely to be the Labial fusing...Must dash for the school run.

PurpleLostPrincess · 27/11/2009 22:41

Panchey, I just wanted to offer my empathy, my DD2 was born with an imperforate anus and a rectofestibular fistula (sp?). She is fine now after having had a stoma etc but I'm sure that's not something you will have to go through as they would have picked it up when she was born. I just wanted to share that I too was worried sick about her 'bits' and still am to a certain extent. It's not the norm to worry about whether or not your baby will be able to have children or not and it's certainly a strange place to be (or it was to me). DD2's problem was mainly with her bottom (as I say, fixed now) but she had a small tube going from her bowel into her vaginal wall and despite it all being fixed now, I have no idea if they have checked if she has a womb etc and if she does I suspect she will have to go down the cesearean route should she choose to have children.

Have you tried a site called Extra Special Parents? Might be worth checking if anybody on there has had a similar experience? They've been lifesavers for me in the past.

I do hope you get the appointment soon and that they can sort things out for your lo soon - they can do amazing things these days!!!! ((((hugs)))) xx