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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?
Skifit · 23/03/2011 16:01

So sorry to hear this kasbah72. I have no experience of this particular problem but my son who is now 10 yrs has had Tracheal recontruction because his airway was too small. He had a Tracheotomy performed as a toddler and a Traceotomy tube in his airway for 10 months. They took a small graft of rib off and put it in his throat... He is fit and well now .
All this happened at Great Ormond Street. They are marvellous there and can do the most incredible things to recontruct anything it seems. Obviously i dont know if you would be referred there, but they are excellent.

I do hope your little DD is ok and things can be put right. I am not wording it very well and dont mean to sound presumptious...but thinking of you and . . .

Wishing you masses of luck, , , and you are supported here....

xxxx xxxx

peanutbutterontoast · 23/03/2011 16:12

checking the genitalia is part of the standard newborn assessment though - as well as everything else (hips, heart, congenital cataracts, reflexes etc) they check boys for testicular descent & imperforate anus & girls for imperforate anus & vaginal patency. It isn't your fault OP, it should have been picked up by whoever did the newborn check.

winnybella · 23/03/2011 16:18

Why, coccyx?

DS(9) just had a booster shot and the paed checked his testicles- but of course it would be better that she hadn't, so that if they hadn't descended/went back up we wouldn't know Hmm

Fgs.

BrainSurgeon · 23/03/2011 16:20

K, I feel for you, the waiting would drive me absolutely bonkers and I've been massively frustrated more than once by how long it takes to be referred.
Can you not afford to go private?

NoodlesMam · 23/03/2011 16:31

My Neice had no vaginal opening, it was found when she was 3ish after complaining of being sore - my sister had never noticed it before either. I can't remember exactly what was wrong but think it might have been the imperforate hymen? she had some hormone cream to apply and the opening appeared eventually, so no surgery required.

I have two DD's and neither of them had their genitals checked at birth. I had changed my neices nappy and hadn't noticed anything.

Don't google, wait for the Paed appt. Maybe you could chase up the appointment? Find out who you have been referred to and call their secretary, a little bit of harrassment goes a very long way in my experience.

Wishing you luck but please try not to worry :)

darleneconnor · 23/03/2011 17:17

Does she have a clitoris? If she doesnt it is unlikely that the problem will be corrected by cream.

kreecherlivesupstairs · 24/03/2011 08:18

How to bring a thread down in 19 words. Top effort darlene.
OP, you are on the right track now, very best of luck for you and your DD.

darleneconnor · 24/03/2011 09:08

Why? For mentioning the clitoris? The op wants a diagnosis, something the medical profession are refusing her. Checking for a clitoris will be part of that diagnosis. If the op knows the answer to that she will be better placed to prepare herself and her dd for the possible outcomes. Not having an opening, and needing cream/minor surgery is very different from the absense of all external genitalia.

Bucharest · 24/03/2011 09:14

They are not refusing her a diagnosis.
She is going to see a specialist who will examine her daughter and then take the appropriate action.
OP, hope you get to see someone as soon as and it can be sorted for your dd.
As others have said, of course you are not to blame. Hugs.x

MercyMe · 24/03/2011 09:22

Sorry to hear whats happening op, really don't feel guilty it's one of those things that you don't consider. My dd was born with an imperforate anus, and a cloaca where the vagina, urethra and bowel were fused together. It took the hospital 2 days to pick this up, and dd was in scbu due to other difficulties so you would think that everything would have been checked. Dd has had a few ops now and everything is as it should be now. The hospital was fantastic. Please wait for the paediatric appt, googling will just make you panic. Let us know how she gets on xx

kasbah72 · 24/03/2011 10:47

Thanks again for the reassurance.

I am still waiting on a referral, have chased again and said I am happy to pay for the initial appt and scan if it speeds things up. GP knows the consultant so I just have to hope she swings an early appt.

Yes, she does have a clitoris, the urethra has obviously been functioning and she even has tiny buds of inner labia which is why I just haven't spotted the lack of an opening I guess.

From what I have found out since initially posting, I think it is quite possible that the opening has been closed over in the last 2 years and it might therefore not have been a birth defect. If that is the case then I am praying it means that she has a functional vagina and reproductive system behind.

We won't know any more until she is scanned.

Thanks again
K

OP posts:
BrainSurgeon · 24/03/2011 10:55

That's good news K, hope you get the scan really soon, good luck

sunshineandshowers · 24/03/2011 11:15

wonderful post by thomasbodley.

Lots of love to you and your dd.

toeragsnotriches · 24/03/2011 17:31

My friend is a CM who has noticed this in a little girl she cares for (cleaning after a particularly messy poo) and mentioned it, gently to the mum. Mum's reaction was 'oh no it's all fine'. My friend has a little girl and didn't know how to pursue the fact that it wasn't.

She did do some reading around it though and it seems that there are several very successful treatments.

Good luck. She's a lucky little girl to have such a caring mum who's able to confront problems like these.

RachelHRD · 24/03/2011 18:40

Echo what MercyMe says. My DD (1) was born with imperforate anus (bowel not connected to an outside opening) and a rectovaginal fistula and she also has a partial cloaca. None of this was picked up at birth - it was only when I became very concerned that her poo was in the wrong area and demanded to be readmitted that it was eventually discovered.

Even worst case scenario they can do wonders with surgery nowadays - DD has had anorectaplasty which effectively created her anus and rectum and linked the bowel to it.

Please don't google whatever you do - you will always find the negatives and worst cases - I learnt to my detriment! Also do not blame yourself - I personally don't do a detailed examination of my DD when I change her nappy and I doubt many people do. Also find the comments 'how did you not notice' extremely unhelpful Hmm

Hope the appointment comes through soon - the waiting for it is the worst.

R x

HooverTheHamaBeads · 24/03/2011 22:21

All the best to you for your referral.

Please don't feel bad about not noticing it, it may well have not been present at birth and has occurred since then.

I was told when I had both my girls to not spread their labia when cleaning, simply to wipe from front to back. In which case you wouldn't notice the anomoly.

Good luck to you and your lovely DD.x

Pilchardnpoppy · 25/03/2011 02:44

My daughter has this. She is 12 months old. We were referred to hospital and is not uncommon. They say it should separate itself naturally because hormones, but if not we could get hormone cream. We were worried about surgery but it might not be needed.

loopylou6 · 25/03/2011 09:25

My friend had this, I dont know the details but I do know that shes absolutely fine now. Good luck with your little one.

tinkerbell20 · 25/03/2011 16:46

i cant begin to tell you how thankfull i am that you have shared your story!!!
on the 15/03/11 i found myself in what sounds like the exact possition you are in, although my doctor wasn't quite so helpfull:-
my daughter is 21months old, i was changing her dirty nappy when i opened her "bits" up slightly as there was some poo inside, and that is when i noticed the same thing, she has her anus and the hole that she urinates through but no actual vaginal opening just smooth skin, (abit like a mans between his anus and testicals) my feelings were exactly the same as yours i couldn't believe i had not noticed this before, i was in pure shock, i checked my other daughter who is 3 and a half and hers looked perfectly normal.
i rang the doctors and to took her straight away.
when i explained to the dr that she had no vaginal opening he replyed "then how is she urinating?" i told him that she has the hole that she wees through and her anus but nothing in the middle, at this my dr said "there should't be anything in the middle" i even showed him and he told me that it was normal and that she should only have one whole and that is what she urinates through, i couldn't believe what i was hearing, this made me more upset and i pleaded with him saying that i had 2 holes and my older daughter had 2 holes, (the tiny urinary hole and the vaginal opening) and he just smirked and said "no your not supposed to have another hole" at this point i asked to be referred, and he said "well if it makes you happy i will refer you"
her appointment at the hospital is on the 8th april and it feels so long away and i just want some answers, i am disgusted that my doctor told me that this was normal and that there shouldn't be anything there, iv been searching on the internet for imperferated hymen and related topics, and felt releaved when i heard your story and now feel less alone and i hope me sharing my story with you has helped you feel the same.
please keep us informed when you get your appointent!

HubertVonRumple · 25/03/2011 16:52

tinkerbell Shock

Is your doctor a lunatic or grossly medically incompetant? Why would he refer you if he didn't think there was a problem? Sounds like madness to me.

VivaLeBeaver · 25/03/2011 16:55

Christ Tinkerbell. Please, please, please when you have your appt with the specialist tell him what your GP said. Once everything is sorted I would also be tempted to tell the Practice Manager. What sort of Dr denys the exsistence of vaginas? Shock

Has he never done a smear tests o nanyone or had sex with his wife???? Does he think men stick their willies in womens' urethras? Where does he think a baby comes out??????????????

activate · 25/03/2011 16:56

excuse me Shock

a doctor told you that the female anatomy is a hole for urine and an anus and nothing in between? Shock

and what are you are doing about this? who have you complained to - that doctor should probably be struck off

activate · 25/03/2011 16:56

where does he think babies come from?

BrainSurgeon · 25/03/2011 16:57

Tinkerbell if it's true that is absolutely outrageous, I urge you to report him, that's just not acceptable.
Please write a letter to the surgery/clinic management. You have to.

FattyArbuckel · 25/03/2011 17:00

You should definitely complain to your PCT about this GP tinkerbell

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