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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?
FattyArbuckel · 26/03/2011 13:42

Fantastic news
Hope you all enjoy the weekend

ChippingInMistressSteamMop · 26/03/2011 23:14

Kasbah - that is great news!! Absolutely fantastic!!

How the hell did I (we/some of us) get to our ages & have never heard of this, when it seems not that unusual??

Tink - I hope you end up with the same result as well (well that your DD does!) and please do something about that Dr - he shouldn't be practising - it's disgraceful.

pixiestix · 26/03/2011 23:37

Thats great news Kasbah, I'm so pleased for your little girl.

Knackeredmother · 27/03/2011 23:49

I've only read the op but just wanted to say this is commoner than you think. Most parents feel guilty for not having noticed but it is difficult to see. It is usually easily treated with oestrogen cream.
Please don't worry your dd will be fine.

Knackeredmother · 27/03/2011 23:57

Oh just read the rest of the thread. You know this already! What a relief for you!

kasbah72 · 28/03/2011 10:47

Thanks again. I think I had a bit of delayed shock on Friday night and Saturday and just wandered around in a daze!

Tinkerbell - is there any way you could afford a private consultation as a one off? The waiting and not knowing was horrendous. It has cost us £170 but we are in London, might be cheaper elsewhere. That was a lot of money for us to find (or will be, when the cc bill comes in!) but worth every single penny.

K

OP posts:
Needanewname · 28/03/2011 19:27

Only just read this, I've never heard of anything liek this and can understand your shock.

Glad you've been able to get a result and know what to do.

Sounds like you have a great supportive doctor.

tinkerbell20 · 28/03/2011 19:33

Unfortunatly theres no way of me findin that kind of money, but I keep tellin myself that the appointment is less than 2 weeks away and that she doesnt no any different, shes not ill in any way and if I hadn't noticed wen I did I probably wouldn't even no now, I think im getting passed the initial shock ov it but im still worried sick! Your story has helped me 2 think more possitive so thank u for sharing it! :-D I keep doin my research everyday for posibilities that it could b and the different things that can b done, but trying 2 stay possitive! Fingers crossed it will b a good outcome! X

friendlyedjit · 28/03/2011 19:37

sorry you've had a shock like this...haven't had a chance to thread so it may have been mentioned already.. there is a condition that little girls can get called "lichen sclerosus et atrophicus" which can cause fusion. Usually little girl complans of soreness or being a bit scratcy. This is treated with topical steroids, so is important when you are seen perhaps to bring this up as many paediatric surgeons may not consider this. Surgey would help then for a while but the inflammatory process would still be ongoing and it could recur.

ledkr · 28/03/2011 21:23

i hope you have changed drs tinkerbell,does the man not do smears or internals.

tinkerbell20 · 31/03/2011 10:38

im am deffinatly going to be changing drs and putting a complaint in about him, god knows what rubbish he's been feeding his other patients!
but call it fate? my dd has been scratching her "bits" and bum this week shes been screamin and looking in pain, so instead of taking her to my usless dr i decided lastnite to take her to the childrens hospital in the next town he wanst too concerned about the scratching just gave her some cream with within 10mins he had spoke to gynocologists urologists got her scans booked in to make sure she has everything behind her blockage that she shold have, womb, overies etc, and says she has an imperferated hymen, and also said a surgen will come and have a look and talk to us about it when we have our appointment! what a relief to speak to someone who knows their job and not to be fobbed off! Grin

SlightlyJaded · 31/03/2011 10:47

Good news Kasbah and Tink. Really relieved for you both.

Tinkerbsll, I am literally open mouthed with shock that a doctor could fail to have such a basic lack of knowledge Shock x 100 and I am so Angry that he had the gall to try and patronise you at the same time.

Pllease be sure to report it.

TBH the medical profession can be very arse covering, I would be tempted to visit him again and make him insist for a second tme that females only have two openings and either record him or take someone with you. Not because you want to 'catch' him but because if he really is this incompetent, he could miss a serious problem in another patient. And as things stand he will probably deny it.

tinkerbell20 · 31/03/2011 14:59

When I first noticed I wa so upset I could hardly speak so my sister came to the drs with me for support so she was there with me and heard everything he had to say, needless to say she was as disgusted as me!

ChippingInMistressSteamMop · 31/03/2011 16:06

Tink - well done! I hope the news is all good when you go.

I'm glad you are going to report the useless Dr he needs to be struck off.

redflipflops · 11/04/2011 20:14

Glad I found this thread! Also found this with my 23 month old daughter. I'm adding these website links for any future people:

NHS Labial Fusion

Labial Fusion info

LMGS · 17/06/2013 15:10

hi all, so glad i found this, just had a look at my DD (8mnth) vagina, and she has the problem discussed here.
thanks redflipflops for the links, very reassuring.
I will still call GP tomorrow morning first thing.
thanks again for this thread
x

Lin76 · 23/12/2013 00:49

Oh my lord!!! I can't believe I found this thread. Even as I write the tears are still streaming down my face. My daughter is 4 and my world. She was born prematurely and also has no vagina opening! We are going for her ultrasound scan on New Years Eve and I can't bare the idea of what she's going to have to go through. I broke down in the hospital 2 weeks ago when we were told. In fact I had a massive panic attack. I'm on my phone at present so it's a little difficult to see/type espec when I can barely see (due to tears and very swollen eyes) xxxx

LonelyLinda · 23/12/2013 20:48

Thinking of you LMGS and Lin76 and hoping you get the answers x

kasbah72 · 23/12/2013 20:56

Oh Lin, just seen your message and so sorry you are going through this. Fingers crossed you have the same outcome. One thing th consultant pointed out was a very fine silvery line in the middle and that shows where the fusion happens.
My daughter has been fine for a while now. Thinking of you

OP posts:
TheCrumpetQueen · 25/12/2013 07:00

So glad your dd is fine now K

Isn't it a bit unfair that boys get a full checkup at birth, but girls do not? My ds was checked all over including penis/testes. Why aren't girls??

mosaica · 28/12/2013 22:56

Hi, my little girl is the same - no vaginal opening. Our au pair noticed and I never did despite changing her regularly! I took her to the gp a couple of days ago and I am now waiting to be referred to the children's hospital. I hope it's just a vaginal adhesion too and I'm trying not to worry too much. Xx

Noono · 04/04/2016 15:43

www.drgreene.com/qa-articles/fused-vagina.
Check this hope it helps

GingerLeaves · 04/04/2016 16:52

Why did you open this thread up? Grin I hope it's been sorted!

amarmai · 09/04/2016 13:06

so sorry for the distress and worry for you , your dd and your family. As suggested above, counselling wd be very helpful in mitigating your reactions and in helping your dd to get thru whatever she has to.

ItsLikeRainOnYourWeddingDay · 09/04/2016 13:34

I only have a son so am amazed to read that they do not do this basic simple heck on newborn girls! They checked my dd's penis, looked at his foreskin and felt for testicles - why on earth wouldn't they do a simple check on girls?