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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:
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fairymummy27 · 18/04/2016 13:23

Hi, I've just read your post, firstly I'm so sorry to hear your news and I hope you get some positive news soon x. Secondly, my 2.5 year old doesn't appear to have a proper opening, it's just a tiny hole about 0.5cm in diameter but this only appeared in the last couple of months, before that she was also completely smooth with all the other bits and bobs down there being normal as far as I can tell, I thought she was just a slow developer (her older sister has a completely normal one) I mentioned it to my mum and she told me not to worry but after reading this, I'm really worried... I've looked it up and can only find your post... Think we will have to head off to the docs and get her checked out!! Does anyone else have a similar experience???

sophree · 18/04/2016 13:34

There is a relative in my family who at 18 went to the doctor as she had never started her periods. On referral and examination they discovered she had no womb and no vaginal opening..
She was given the option of surgery but chose not to have it.
But she is older now and I think she had started surgery although as far as I know some of it has to be done by her? To create her own vaginal passage!
I would assume as your DD is much younger it will be much less embarrassing and uncomfortable to fix the problem now.

I hope you are not to upset. I'm sure they can do so much for her.
It makes me angry though that babies and children aren't check over to make sure everything has developed "as should"

Gumps · 18/04/2016 13:38

This has happened to my daughter. At around 2 years I noticed that her vaginal wasn't opened. I too was shocked with myself that I hadn't noticed before and neither had anyone else.
The doctor was pretty rubbish and just appeared a bit shocked but referred us to a gynaecologist. She has been fabulous. She prescribed oestrogen cream and in the beginning I applied it every night. For the first year not much changed. We went back for a check up and she said it is thinning so keep going. Then suddenly one day it just opened up! We still have the cream and I apply it once every few weeks and the doctor said when her hormones change when puberty kicks in she may need to use it then.
Hope thats of some help.

NatTaylor22 · 29/11/2016 19:29

I appreciate this is a really old thread but but how long did you have to wait to be referred?.we've just found this out with our daughter today. She's 4.5 yrs. I'm almost certain it wasn't closed before but the more I think the more maybe I never look proeprly... any help advice would be great.

sophielouise · 30/11/2016 23:24

Hi there, just seen your OP and have not read through all replies but had to do a quick post before bed! I was born with this condition and it was discovered before my first birthday. I had a simple operation to 'open' down there with no issues since.

Both my DDs have also been born with it so it must have been genetic or something. DD1 I noticed when she was a baby but took her to the drs around age 18months. She was referred and the hospital's approach these days is very much different to when I was little. They advised to wait and monitor to see if it opened by itself. They don't like to jump in with immediate intervention because, of course that area of anatomy is not really needed during the early years. We have been back once a year and when she was around 3-4 it started to spontaneously open by itself. Now she is 5 and we no longer go as it's just a normal vagina!

DD2 had the same, but rather than take her through the same prodding and poking we just waited, and in fact hers opened up a bit earlier, when she was around 18 months.

I know it seems weird and scary but it's most likely just where the skin has formed as it's mucous membrane type skin so can fuse easily so I was told. I'm sure her anatomy is totally normal underneath.

My DD1 used to complain about 'drips' all the time too, especially as she was potty training. She also sometimes said it was sore, but it all went away gradually by itself.

I hope this has helped bring you some reassurance at least. Xx hugs xx

NatTaylor22 · 01/12/2016 12:25

Thank you SophieLouise no one else has actually commented, this is a really old thread I've posted on so really appreciate your reply. We have been told we might need scans to check her reproductive organs are all their, did you have this? It's such a bloody worry!!

Vaderstar · 19/01/2019 07:14

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Jrlarl · 03/05/2019 17:11

Hi Nat. How did you get on? We have found out today that our 6m old has this problem. Completely sealed. I feel like the worst mother in the world. We had bloods taken today but being referred for ultrasound and all of the others tests to see how far this problem has spread. Is it just fused on the outside or is there a bigger problem?
What happened with you?? X

NearlySchoolTimeAgain · 03/05/2019 23:05

Jrlarl - why don’t you start a new thread? I’m sure you’ll get more responses. My DS had some issues as a baby that I couldn’t believe I’d never noticed. But I’d never had a baby before so it wasn’t really my fault. Don’t be too hard on yourself.

Cj1207 · 11/11/2019 23:11

@kasbah72 Hey, I have just found myself in the exact same situation as you today . Our little girl is 3 years old and we also have a 10 week old baby girl . Having our second daughter recently made me realise that our 3 yr olds bits were Slightly different to our baby’s . I had never noticed before as everything appears completely normal but like your dd she has no hole what do ever between her wee hole and her bum. It’s completely smooth . I have cried a lot today. I have blamed myself and the thought of her not being “normal” being bullied at school if people find out and worst case scenario our beautiful girl not being able to have children of her own absolutely breaks my heart. This thread is from quite some time ago so I’m hoping to get in touch with you to see what the outcome was with your little girl.

Cj1207 · 11/11/2019 23:27

@tinkerbell20 me too!!! I am so glad I found this thread. I have been feeling so alone today until now. , I have just found myself in the exact same situation as you today . Our little girl is 3 years old and we also have a 10 week old baby girl . Having our second daughter recently made me realise that our 3 yr olds bits were Slightly different to our baby’s . I had never noticed before as everything appears completely normal but like your dd she has no hole what do ever between her wee hole and her bum. It’s completely smooth . I have cried a lot today. I have blamed myself and the thought of her not being “normal” being bullied at school if people find out and worst case scenario our beautiful girl not being able to have children of her own absolutely breaks my heart. This thread is from quite some time ago so I’m hoping to get in touch with you to see what the outcome was with your little girl. By the way that doctor sounds extremely incompetent. Where does he think babies come out of ? Our bums ? Goodness me! You must of been furious

Jjjjjjjessey · 20/11/2019 20:41

Hi I know you posted this ages ago but I just wondered what the out come was for you as my little girl is 2 and has been diagnosed with this and just wondering what we have to expect x

Dmrb · 11/03/2021 07:18

My 3 month old has no opening. How did things go over. Is your daughter ok?

Karenajones · 08/07/2021 16:13

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chickenyhead · 08/07/2021 16:15

Dinosaur thread

chaos76 · 08/07/2021 16:47

I just want to give you a virtual hug you can all get through this,

My son was born with imperforate anus it was discovered by a student midwife a few hours after he was born he has had recontructive surgery and has some inconteinace but he lives a full life and is the happiest most content child you could ever meet

Just take on step at a time and one hurdle at a time

Maggiesfarm · 08/07/2021 17:07

Oh Kasbah, what a shock. Poor little thing and poor you.

I don't know anyone who has had this (that I know of), but I have heard of and read about it in the past. It is something that is usually fixed easily. Let's hope that is the case for your girl.

Flowers
TangoWhiskyAlphaTango · 08/07/2021 17:07

ZOMBIE!!!!!!

LucindaT73 · 08/07/2021 17:09

@Karenajones

Unfortunately I know what your going through, I have 2 daughters..my 3 year old has the same condition where she has no vaginal opening and I’m waiting for the referral, my 11 month old has a very rare condition where her Vagina simply stoped developing during pregnancy, with both of them there is great concern that they didn’t completely develop internally. It is constantly on my mind and it’s very upsetting to think about what they will have to go through, all we can do is try to stay strong, I’m here if you ever want to talk love
This thread is 10 years old! Started in 2011

WHY?

What makes posters search for these threads and post? It's really odd.

chickenyhead · 08/07/2021 17:10

Agreed please don't share private info with the first time reviver

missmopple · 08/07/2021 17:10

@Maggiesfarm

This thread is over 10 years old.

Maggiesfarm · 08/07/2021 20:43

D'oh.

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