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Really upset - daughter has no vaginal opening

(122 Posts)
kasbah72 Wed 23-Mar-11 13:57:09

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

Dropdeadfred Wed 23-Mar-11 14:01:39

I'm so sorry..I don't have any experience of this but didn't want to read and run.
I'm sorry you are going through this and I hope that things are not as bad as they might seem right now. Don't blame yourself..I would never have known this about any of my 3 dds at that age either.
Dont worry about possibilities that may not even happen yet (easier said than done)...surgery can do miracles these days.
x

sasamaxx Wed 23-Mar-11 14:06:02

OMG no I've never heard of this - so sorry to hear it.
Really hope they can sort this out quickly and easily x

kasbah72 Wed 23-Mar-11 14:06:15

Thanks for replying, I think the waiting and not knowing is the worst at the minute. I just want to get her scanned to see what we are actually dealing with. Poor baby

winnybella Wed 23-Mar-11 14:06:27

Don't panic yet- obv.surgery is inevitable, but hopefully it'll just consist of creating an opening.

But how could you not notice it? You've been wiping her for 2 years? I can see DD's vagina very easily. Also the paed checks at every check-up visit- what a shitty doctor has been seeing her? I would be really pissed at this and would probably complain. 'Intimate activity with a baby' hmm-WTF?

Dropdeadfred Wed 23-Mar-11 14:08:44

winnybella - I repeat, I have 3 dd's and I dont recall ever actually seeing the vaginal opening itself just by wiping/washing...it is always hidden in the folds of the labia

HubertVonRumple Wed 23-Mar-11 14:10:27

Oh you poor thing and your poor dd. What a shocking discovery for you all. It must be virtually impossible not to start imagining the worst case scenario but please try and hold fire until your referral comes through. I know I would be doing the same as you but DO NOT GOOGLE any of these things.
It's great that your GP is chasing but don't be afraid to phone and speak to them /leave a message if you think things aren't progressing quickly enough.
I really, really feel for you. Is your dd old enough to understand what is happening? I'm guessing not.
Sorry I don't have any experience in this but I just wanted to offer my support.
Take care.

VivaLeBeaver Wed 23-Mar-11 14:11:58

Kasbah - no experince myself but I rememebr a thread some years ago on MN where someone had similar. Their GP said there probably had been a vaginal opening at birth but that it had fused together.

I can't rememebr exactly what happened, there was some sort of minor surgery to sort it out but it wa sorted. Will keep my finger's crossed that your DD's case is as straightforward.

TaTown11 Wed 23-Mar-11 14:12:58

medically i could only offer the info that's out there on the internet. btw, have you searched for this condition on the internet? i doubt you're the only one...

but as for your feelings...the one thing you shouldn't do is blame yourself in any way. i can tell just by reading your message that your love for your dd is limitless and if love alone could solve this problem, you wouldn't need any more doctors. you can only be at blame for something if you caused it by action/inaction and you had NO way of knowing there was no vaginal orifice. if a medically trained nurse and gp were at loss, there's really reason to think you should've seen this.

as for the future, there are obvious worries and you're a good mother to consider them, but don't be consumed by them. what will happen will happen. as cliche as it all sounds, enjoy your time now and try to be a peace. i probably don't have to tell you that even babies can pick up when something is worrying a parent. and to be honest, with medical technology what it is today (and with what it will encompass in the future), i'm sure her anatomical situation can be sorted out. if it means serious surgery, that's something you to consider when it becomes a reality.

have you thought of therapy or counselling of any kind? might be worth it. you can get referrals for that on the NHS.

one thing you mustn't do is question yourself as a mother. i only know you from your message and i know you are a good mother!

shesparkles Wed 23-Mar-11 14:13:07

Try not to give yourself a hard time for not noticing before-why on earth would you? It's a long time since I changed my dd's nappies but I can't think I ever thought "oh I know, I'll just check she has a vag opening"-you just wouldn't think it's not there.
I really hope it's the simplest scenario, although I can understand you'll be all over the place till you know what you're dealing with.
I really really feel for you xxx

winnybella Wed 23-Mar-11 14:13:10

But don't you wipe the inner labia when she has poo on it (as in when they do a bit of a runny poo in the nappy and sit on it iyswim)? Very easy to see when you spread the labia a bit.

And I'm still astounded by the GP. And also all babies get checked for this at the hospital when they are born confused

Sorry, not helpful to you, OP.

MrsDaffodill Wed 23-Mar-11 14:13:15

Winnybella - do you really, in your heart of hearts, think that was the right response to send to someone who has just had upsetting news? She is already blaming and questioning herself.

FWIW, I have never noticed on my daughter either. I may look now. Though she had some menstrual blood at birth, so I would guess there is an opening based on that.

winnybella Wed 23-Mar-11 14:14:09

That was to dropdeadfred, btw.

HubertVonRumple Wed 23-Mar-11 14:14:12

YY I have a dd too and once they are potty trained you just don't see that part of them unless there is a problem, why would you need too?! TBH when you're changing nappies it's not what you are looking for you are usually too busy clearing up poo/wee/trying to hold still wriggling babies. Please Kasbah72 don't beat yourself up.

NormanTebbit Wed 23-Mar-11 14:14:48

Don't blame yourself. Children are so tiny down there, I have three girls and Idon't think I have ever looked properly. My kids have never had a 'check up' with a doctor and DD1 is 6.

So now you need to be calm and confident for your daughter. Take it one step at a time. I wish you a yhe best.

ExitPursuedByALamb Wed 23-Mar-11 14:17:10

Poor poor you, and your DD. How old is she? I am not sure whether I have ever noticed an opening with my DD, but just presumed everything was 'normal' like you do.

I really hope it is a simple case of needing to cut the hymen with no further surgery necessary. Fingers crossed for you.

Incidentally, you say she has been fiercely private - I wonder is she 'knew' something was quite normal?

DTD1 had partial fusing of her vaginal opening. It was quite bad. We were given a hormone cream to put on it two or three times a day which caused thinning of the skin so that the vagina opened up again.

I hope something similar works for your DD.

It wasn't pleasant as the cream irritates the skin.

ExitPursuedByALamb Wed 23-Mar-11 14:18:43

wasn't

Cornflakemum Wed 23-Mar-11 14:19:19

Poor you, but as others have said, stop blaming yourself, take a deep breath, and stop assuming the worst. We had a somewhat similar situation with DS1. At age 10 (yes.... 10 years old!) we discovered that his testicles were not in his scrotum. They had been at birth, and early childhood, but had receded- we weren't even sure he had any until the scan. I went through the same angst - what if he didn't have any/ couldn't have children etc etc. Fast forward 7 months and post-surgery he has two rapidly growing, low hung testicles and puberty (and hormones) seem to be kicking in just fine.

Think of the positives:

- this has now been identified (better now than later - how old is she BTW?)
-It may be relatively straightforward, so stop assuming the worst
- surgery is often very quick and easy these days. If she is young, she will probably not remember it in years to come. (DS1 also had eye surgery at 2.5 years and can't remember)
- Take it one step at a time....

very 'un-mumsnet' hugs.....

winnybella Wed 23-Mar-11 14:19:24

Oh, sorry, perhaps it's different in the UK, then. Here in France DD is weighted, measured, ears, nose, throat etc checked, tummy palpated etc at each vaccine visit. Vulva and anus checked as well, guess for thrush etc. It takes less than 5 minutes.

Not blaming the OP at all, was just surprised. Am deffo blaming the GP, though.

Hope all will be ok,kasbah and that it will be a relatively simple procedure.

The doctors do similar checks in the US winnybella which is how DTD1's problem was found.

DarkSkies Wed 23-Mar-11 14:20:46

Don't feel bad- my friend at school had this, she was 13 when they found out!
It was a minor op to resolve and she was absolutely fine afterwards.
GL.

balloonballs Wed 23-Mar-11 14:22:43

kasbah72, stop blaming yourself! I can totally understand how this was missed, honestly it's not something you think to check is it?

Not had the experience myself but it happened with a good friends daughter.
Her dd was about 9 when it was noticed in similar circumstances.
In her case I think it was a hymen problem which (and I don't know the details) was resolved with a hormone treatment not surgery. Her dd is absolutely fine now.

Should just add that both her and her dh are senior health care professionals and were gutted they had missed it but there you go, it happens don't feel bad.

Hope it all works out for your dd.

winnybella Wed 23-Mar-11 14:23:05

Yes, I remember when we lived in NY DS was checked all over at birth and then at every doctor visit for jabs.

That's why I was surprised. And again, how could a proper evaluation of the baby/child's health be deemed an "intimate activity" by a healthcare proffessional???

kasbah72 Wed 23-Mar-11 14:24:00

She is actually 4.5 now so very aware of being examined and able to articulate what she is feeling.

Winnybella - i have asked myself the same question every 5 seconds since I found out. I honestly don't know. We used to wash her under the tap in the sink rather than use wipes when she was very little and I just don't think I ever looked for a hole. That's it. Everything just looks perfectly normal on the outside.

The gp called this morning to say how apologetic she was for not spotting it but it has been policy not to prise open the lips any more to see deeper. She says they will changing that policy from now on. She is also very upset.

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