I'd appreciate your help in the following matter.
My cousin has a medical condition: she did not develop
a uterus during her growing years. She discovered this during a
medical examination when she was 15 yrs old to determine why she had not had a
menstrual period yet. Recently, she told me that she cannot even have
sex, that apparently her doctor said that she has to have an operation of some
kind even to have sex.
I'd like to find out on her behalf if she will ever be able to have a
sexual life and what kind of medical procedures she has to undergo for
this. Is there an age limit before which time she would have to have
these medical procedures done on her, if at all (she's now in her mid
twenties)? How simple or complicated are they? Are they successful,
i.e. will they enable her to have sexual intercourse? Are they safe?
Your assistance in this regard will be greatly appreciated.

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Request for Question Clarification by pkp-ga on 30 Nov 2002 17:03 PST

Hi jackfern,

If it is possible to clarify what (if any) other parts of her female
reproductive anatomy are present or missing, it would help in
providing you with a more accurate answer.

Hi jackfern -

Your cousin should not despair, modern medicine has been successful in
treating  cases like hers.  From what you describe it appears that
your cousin suffers from vaginal agenesis which means that she did not
develop a uterus or a vagina.  It is a somewhat rare syndrome, but it
can be managed in a satisfactory manner.

According to the American College of Obstetricians and Gynecologists,
vaginal agenesis may be treated non-surgically by use of a series of
dilators which expands an internal space until it resembles a vagina. 
This dilation procedure requires a very high motivation by the patient
as it is a long and uncomfortable process.

Surgical treatment is often required to fashion a new vagina. This is
usually done by a procedure called the Abbe-McIndoe operation or a
modification of it.  In this operation a space is created in the
tissues of the lower abdomen and a skin graft from the patient's inner
thigh is used to form an internal pouch. Subsequently a stent, or
retainer, is kept in the pouch for about 6 months so that it does not
close. When healing is complete, the patient can have sexual
intercourse.

Of course, every patient is different, and you have not given details
of your cousin's particular anatomy, but it appears that there is a
lot of hope.  Motivated patients who have a  specialist to guide them,
come through the surgery very well, and they are able to have sexual
intercourse.  From patients having undergone the Abbe-McIndoe
operation, eggs have been harvested (the patients had ovaries). Thus,
with  in vitro fertilization and a surrogate to carry the fetus, these
patients became (genetic) mothers.

alanna
sites visited:

Pub Med
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12100828&dopt=Abstract

PubMed
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12025659&dopt=Abstract

PubMed
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12025659&dopt=Abstract

Pub Med search terms used:
 Abbe-McIndoe operation 
 Mayer-Rokitansky-Kuster-Hauser syndrome 
 absence of uterus, congenital

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Request for Answer Clarification by jackfern-ga on 02 Dec 2002 09:23 PST

Hi Alanna, 
Thanks for your answer. Could you please elaborate on what kind of
details about her particular anatomy will determine whether the
Abbe-McIndoe procedure will be successful or not. Also, will the
presence of a stent, post-operation, curtail normal activities for the
entire six month period rendering her to the bed for the most part.
Any information on costs involved would also be immensely helpful.
Thanks much.
-JF.

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Clarification of Answer by alanna-ga on 02 Dec 2002 12:40 PST

Hi JF -

Here is a clarification in response to your request.

Re: anatomical details:  In my original remarks on your questions, I
had to presume that your cousin lacked a vagina.  I don't actually
know this to be the case.  Thus I answered as if it were.  The fact
that her doctor said she would have to have an operation to have sex
made it highly likely that this was a case of vaginal agenesis.

Re: the stent.  The stent is used for a defined period or periods each
day.  It does not require bed rest.  But it is uncomfortable and does
require high motivation. Also it is a good idea to investigate the use
of  a stent (dilators) alone to create a vagina. This is the
non-surgical treatment for the condition mentioned in my answer. While
your cousin's doctor seemed to recommend surgery, perhaps a second
opinion might indicate otherwise.  I found an abstract of a research
(sited below) article that stated that patients might rush to surgery
where dilation alone could take care of the problem.
Pub Med
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11744908&dopt=Abstract

Re: costs of the Abbe-McEndoe: I have been unable to find any
information on the costs of the procedure.  It is reconstructive
surgery designed to correct a congenital defect. Like any
reconstructive surgery, it will be expensive.  But it may well be 
covered by private insurance or Medicaid.

I am not a physician, thus not qualified to medically advise you.  I
urge your cousin to further discuss this with a doctor who has
examined her.

Good Luck
Alanna

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Request for Answer Clarification by jackfern-ga on 02 Dec 2002 19:58 PST

Thanks Alanna. Appreciate your replies. I will pass all this
information on to my cousin.

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Clarification of Answer by alanna-ga on 09 Dec 2002 18:37 PST

Glad to be of help.

Alanna