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Really upset - daughter has no vaginal opening

147 replies

kasbah72 · 23/03/2011 13:57

I went to the gp with my daughter on Monday. She has been complaining of having 'drops' after weeing. She has said it for months and this is the 3rd time we'vebeen back. Each time the urine sample has been clear. We have been working on drinking more water, sitting on the loo for longer, more careful wiping etc.

On sat night she woke up in the middle of the night screaming because her 'ninny' hurt. I washed it gently and put on sudocreme but decided that on Monday (inset day) i would take her back to see the nurse.

Oh god, not sure how to say this.

She decided to examine her and pretty much recoiled in horror when she parted her labia.

She has no vaginal opening.

How the hell did I not know this??? What kind of mother am I?? What kind of WOMAN am I not to see an absence of such basic anatomy???

The nurse told me to look and that whole area (once you part the labia majore) is completely smooth. There isn't even a hint of an opening. Nada.

Of course I wanted to burst in to tears in shock but I had both kids there and had to stay calmish. I couldn't help some tears springing out but brushed them away saying I got hair in my eyes.

The nurse went to get the gp and on the way went to see the midwife who said they never check the inside of the labia because people don't like any intimate activity with their babies. WTF??? She also said that in babies the opening is often very small or tucked away so she wasn't surprised I didn't notice, especially as she has been pt since before 2 and fiercely independent.

The gp came in and examined her which, of course, upset DD and so that upset me. She said that there is no opening and she was going to get her referred urgently.

The best case scenario seems to be that this is a imperforate hymen where the hymen covers the vaginal entrance but this should be higher up, not leaving her completely smooth.

The other best case scenario is that her labia minori (sp?) have fused but there is no evidence of this so unlikely.

Both of these options mean surgery to cut her open and create a permanent opening. Hideous to contemplate but ineveitable whatever the outcome.

Even worse is the graded scale of what else could be going on... they are going to have to give her an ultrasound to see if she has any actual vagina, vaginal passage, cervix, uterus and ovaries. She may be missing any or all of those.

My poor poor little girl. I can't even contemplate that worst case scenario. All she has ever wanted to be is a Mummy. That is all she wants to do. How can I even think about a future where she can't have kids? Where she can't have sexual relations? Where she may have to go through reconstructive surgery and use an expander to try and make the skin graft from her buttocks work as a functional vagina??

Does ANYONE know of anyone who has gone through this?

We are waiting for a referral to come through asap and the GP is chasing again today.

K

OP posts:
Are your children’s vaccines up to date?
winnybella · 23/03/2011 14:29

Shock at the GP's policy. Bloody hell. Unbelievable.

Lancelottie · 23/03/2011 14:30

Not sure if it's any help but my mother had a totally covered (occluded, if that's the word she used?) vagina and didn't know it till she was 13, when her periods started but there was no way for the flow to pass out. Her mother was a midwife and had never noticed.

thomasbodley · 23/03/2011 14:31

This must be a hideous time for you and your little one but PLEASE try not to worry.

They can do incredible reconstructive surgery - my sister is a surgeon and I have heard first hand tales of miraculous outcomes from her.

Worst case scenario, if your child has no ovarian reserve then she will not be able to have a biological child BUT this is no worse than the situations in which the adopted, or women who use surrogacy or donor eggs, find themselves. I'm one of them (currently investigating alternative conception options) and I swear to you, I'm not heartbroken or frightened - it's just a challenge to be dealt with, I'm not crying into my pillow at night.

Just because you have challenges in one area of your life does not make it blighted. I have a great job, and I'm married to a wonderful man. The world is full of good things and they will come to your daughter too.

And PLEASE don't blame yourself. I didn't pay attention in biology class either.

SlightlyJaded · 23/03/2011 14:31

I am sure you are feeling quite shocked but if it's any reassurance, I had a friend whose DD had a similar thing that was fairly easily resolved. I don't know the details I am afraid but her DD was about four and they created the opening in a simple operation.

You have probably googled to death and I have just done the same on your behalf. It seems to be much commoner than you might expect. Most people seem to just have skin over the opening but all bits still inside IYSWIM

The main thing seems to be, spotting it early (pre menstruation) which you have done.

Honestly, Iwould be feeling like you if it were my DD but I think this is something that can be resolved and you have done well to spot it now.

Big hugs to you and your little girl. And sod it, unmumsnetty kisses too xx

balloonballs · 23/03/2011 14:31

Actually just checked with my friend and her dd had a cream also!

Hopefully your dd may be suitable, whatever she needs I'm sure she'll be fine, and please stop feeling bad.

Justforthekids · 23/03/2011 14:32

kasbah72,
just wanted to sya it happened to a friend of mine. Her dd had never been checked and her mum discovered what was happening only because she is from France and wanted her dd to be checked over 'the french wy'.
Because her dd was still young (9 months old at the time) the paediatrician was able to do it on the spot wo any surgery etc...

I'm realy sorry that it happened to your dd and would hope that there was more awareness of this issue. Obviously not so uncommon as apparently they check babies for that routinely in france....

darleneconnor · 23/03/2011 14:32

Really feel for you op.

Dont blame yourself for not 'checking'. Id guess the vast majority of mums dont. When i read your title my first thought was ais (androgen insensitivity syndrome). This is v rare and may not be dds problem but you may wish to look it up. If it makes you feel better most dcs withis condition arent discovered until well into their teens. Also if that is dds name you',ve used maybe ask to get it deleated.

Snuppeline · 23/03/2011 14:34

Poor you, and your poor daughter. I've heard of children being born without a uterus, as well as having two uterus', and of children being born with a closed rectum (so smooth across the opening) and no rectum at all. Its rare but does happen.

She isn't uncomfortable in anyway? You mentioned "dripping" or something like that as the reason for going to the gp in the first place. I hope she doesn't, but discomfort may indicate that she has a normal vagina behind the closure. I understand your worries, its so hard waiting too. Can you go private if it takes too long? Harvey Street in London have all sorts of specialists if you want something to happen urgently. If you feel like you have to google try googling to find out about medical expertise in this area in the uk. Which hospital will be best to deal with her etc.

For what its worth I always feel uncomfortable with my dd's private parts too. Too thorough a clean and I feel I'm near a thin but very clear line (of propriety) and I would not look while cleaning either. I use a very high amount of wipes instead and, yes I part labia to clean inside there. But I do not look. So I can understand that OP did not know before. Besides, you don't know if she was born this way or if it grew gradually. Babies and young children's cells are all geared to growth and of course sometimes this happens in the wrong way.

My dd has had surgery several times, when you get closer to a date for such intervention post a new thread and I'll give you some advise then. Just keep things simple and normal when you speak to her but do prepare her in telling her what's going to happen. I.e. "we're going to see a doctor and at the doctors we will take your trousers off and let the doctor take a look at your 'ninny' but it wont hurt or it may hurt a little but it wont be for long". Do keep your calm about you though, you don't want to project any fright onto her.

Your a good mother and your strenght will see your family through this. x

themildmanneredjanitor · 23/03/2011 14:35

This reply has been deleted

Message withdrawn at poster's request.

Grumpla · 23/03/2011 14:37

My dad had two cousins who both had extremely ambiguous genitalia at birth (intersex). Both were basically 'assigned' a gender based on what they looked like externally. This was over seventy years ago now so the treatment they were offered was fairly hit and miss (a mix of surgery and then later in life hormone treatment etc as that became available)

Both of them lived very full, very happy lives, got married, one remained childless (happily so) the other adopted.

Whatever the outcome for your daughter, the range of treatment etc available now is far far better than it used to be and there is no reason why this should dominate her life or prevent her from being a 'real' woman. Having a fulfilling sex life is not contingent on having a perfect body / genitals, being a mother is about so, so much more than giving birth.

I'm not trying to downplay the situation for you here. Of course this is a really awful, hard thing for you to go through as a family, especially if there is going to be surgery etc involved. Your daughter will be taking her lead from you emotionally, so please try not to think that everything you had hoped for and dreamed of is now at risk or, if that 'worst case' scenario ends up being the case, that she will never be able to do these things.

annapolly · 23/03/2011 14:40

I know a lady whose DGD was born without any genitalia, no labia either.

She looked like a doll, nothing there at all.

She had several surgeries to make a vagina and labia, I am not sure of the detail.

The scan showed all other female parts were present.

This was about 25 years ago and the DC now has DC of her own.

I wish you luck, hopefully as your DD has a labia there is a good chance her vagina is just covered by skin. HTH

ilovesprouts · 23/03/2011 14:44

.

kasbah72 · 23/03/2011 14:49

Thank you again.
Sorry MDS - I must have posted my previous reply without seeing the cream comment. I will ask the consultant more. From what I've googled (and yes, I need to stop doing that) it seems to be prescribed when the labia have fused and there is a line to show where that fusion happened. I can't see any line at all so I have no idea whether the cream is an option.

I think we just need this scan asap. The gp is chasing, we have said we will do it privately if we need to speed things up but getting a paed sonographer isn't as easy as just turning up at a hospital.

I don't know what causes the pain and I am concerned that there is a greater possibility of infection if her urine is leaking inside somewhere.

K

OP posts:
themildmanneredjanitor · 23/03/2011 14:50

This reply has been deleted

Message withdrawn at poster's request.

NunTheWiser · 23/03/2011 14:54

I think these issues are much more common than we might think, OP. One of dd1's friends was born without an anal opening which was corrected by surgery. Another friend's daughter had what sounds like a similar issue to that mentioned by previous posters. It required hormone cream to sort out, but it worked well and she has no long term problems at all. She's now 14 years old. I'm sure that once you see a specialist and get more reliable information, things will get sorted out quite quickly.

ChippingInMistressSteamMop · 23/03/2011 15:08

Poor little mite :(

Hopefully it will be something easily sorted. Try not to worry too much, worrying now wont change anything and will just make you both anxious.

Let us know how you get on x

Dontbugmemalone · 23/03/2011 15:10

Hi,

I'm very sorry that your DD is going through this. Hugs to both of you.

I'm unsure if this is the same thing but my husband's niece has a similar condition. She is 4.9 and has been complaining of pain in her genitalia and went to see the doctor. The doctor told her mum that it's grown/fused together and that this is more common in boys than girls. She has been booked for an operation to fix this. I will keep you updated with her progress, if it's any help?

kasbah72 · 23/03/2011 15:26

Dontbugme - yes please, that would be very helpful.

OP posts:
Dontbugmemalone · 23/03/2011 15:30

Ok, I'll PM you when I find out more.

Good luck with everything x

BrainSurgeon · 23/03/2011 15:32

Kasbah, sorry to hear this is happening to your DS :(
You're right to want to speed things up, the pain can be caused by an infection or just pressure, and the urine leek can come from a fistula - an abnormal communication between the urethra and an adjacent structure.
What does your GP say about the pain?

BrainSurgeon · 23/03/2011 15:33

Doh! meant DD obviously

kasbah72 · 23/03/2011 15:44

That is what I am worried about in the short term, that there is something else going on that we can't see.
I think my gp just wants me to see a specialist ASAP.

K

OP posts:
sharbie · 23/03/2011 15:46

i feel for you op i really do but don't blame yourself i certainly wouldn't have noticed.
my dd was born with an atresia which i guess is what your dd may have.hers was in a diff part of her body but one which affected her breathing so was noticed at birth luckily.
yes it prob will mean operations and maybe a few of them but you will go to a hospital with the best doctors as these things are quite rare.with dd it was the worst case scenario as the atresia was of the bony parts and hadn't started to seperate at all - but she is a very fit and healthy nearly 14 y old now - i saw lots of babies with diff similar problems over my time in hospital and it is a very trying time for the parents but something can be done and she can be made better.good luck and big hug .x

sharbie · 23/03/2011 15:48

just seen yr post - specialist will know exactly what other things to look for regards to syndromes etc and dd will be thoroughly checked.
ime gps were totally useless as they had never seen anyone with dds condition before - once we were referred we were given access direct to consultant at hospital.that made things much easier.

coccyx · 23/03/2011 15:55

Not sure i would be keen on children having an intimate exam every time they had a vaccination.
I have 3 dds and can say i have never looked intimately as such.
Sure it can be sorted, best wishes