At Last!!! Somewhere to talk

[Snowflakes]

Hello, I am 32 years old and live in the UK. My daughter was born with a
laryngeal cleft and is intersex. Our main concern and focus has
been the laryngeal cleft as this has required that she have a
tracheostomy, which she still has. However, being intersex also
concerns me and my husband as obviously we worry about how she will
be accepted as she grows up and how she will feel about it. At 6
months old we were advised that she should have a gonadectomy as the
gonads which were still high up inside her could become cancerous
and they were a mixture of testes and ovaries and would therefore
not enable her to produce an egg. Although that was the main reason
for doing this, also these testes/ovaries could at puberty release
too much testosterone and start giving her male attributes, like
facial hair, voice changes etc. She was born with male chromosomes (xy),
however she also has a uterus and her genetalia is very female
looking. However her clitoris is quite large and when it does get
touched it does become quite large and definitely does not
look "normal". The folds of skin that cover her genitalia are
slightly wrinkled which I assume is because they thought about going
the male way of a scrotal sack. My husband and I have chosen not to
share with friends or family about our daughter being intersex
because we felt that they would treat her differently, not in a bad
way, but by engulfing us and her with too much sympathy. Our
daughter is already spoilt a little bit extra by everyone because of
her tracheostomy which is a very real disability. We also felt that
it's not anyone else's business. We don't go around telling
everyone that we "aren't" intersex, like people that are gay don't
have to go around making sure everyone knows they are gay. It's
just not necessary. When she was a baby we were concerned that our
mothers when changing nappies might comment, but they haven't, I
think they just think she has a large clitoris, but don't say
anything because I guess they don't know whether I look like that
too so it wouldn't be appropriate. Anyway, I do worry that her
clitoris really extends out when she has a touch and I thought about
whether I should look into surgery for her. But I have read that
you shouldn't interfere as she should be allowed to make that
decision for herself. It's really difficult because I don't know if
psychologically it would be better for her to look like other little
girls growing up or will she feel different and unhappy because she
is different and as soon as she is able to make a well thought out
decision she will ask to have surgery. The other thing is that this
is such a fragile area that if you operate you could ruin the
sensation for her. Imagine thinking about the sex life of your 3
1/2 year old daughter!!!! I also worry about when we have to tell
her about her sexuality, how she will feel. I worry about having to
tell her that she won't be able to have children herself in the
normal biological way, however because she has a uterus it is thought that she will be able to carry a child, so she could have an egg donated to her which was obviously very exciting for us to hear. Or she could always
adopt. Another annoying thing is that we have no diagnosis, like Androgen syndrome, turners or swyer. Our geneticist wants to be able to link the laryngeal cleft with the intersex because she feels the likelihood of her having these two issues and them not being linked is unlikely, but so far has been unable.

If you are an intersex adult with similar attributes to my daughter or have a child that is intersex I would be really happy to hear from you as I'd just like someone to talk to and give me an insight. I just want as much knowledge on how to deal with her sexuality as I possibly can so I can try and do the best I can in my parenting.

Really, really looking forward to hearing from someone, ANYONE!!! Thanks

[prince....ss?]

Welcome Snowflakes

Well you have defiantly come to the right place for advice and trust me you will get it from all different angles and perspectives.

I was born very similar to your daughter. I am 46xy and reassigned to female at 11 days old. I was raised a girl and faced the very questions you are looking at now for her.

I would like to first say your daughter will be fine, she will make all the necessary adjustments as she grows up, so what feels monumental to you will only be a side note to her.

You are the one with the problem and issues about all of this…but you are mom and that is the way it should be.

I am 43 years old and I just found out about my condition last year. It took 43 years for my mother and I to have this conversation. I still think she would have preferred if I did not bring up the subject…but I did. The interesting thing is, and my point in this post is, that I am now fine with my condition but my mother still carries this profound guilt after all these years…Every time I bring up something to do with my IS condition I can see the tears wanting to form…and sometimes they do.

So as a first step I would suggest getting your self squared away first, then you will be in better shape to make decisions and help your daughter.

So perhaps I did not answer every question you had but that will come in time.

You have found a great place!!!
Welcome
Prince….ss?

[Snowflakes]

Hi,

Thank you so much for replying and your reassuring words that my daughter will deal with everything in her stride.

However, I've obviously got concerns and worries, like you said, I'm the mum so that's my job, but I'm not hung up on making my daughter fit into any particular category I just want her to be happy at all costs. My husband and I have both said that whatever Chloe wants to know about her sexuality as she grows up she will hear honestly from us and we're very decided that we want her to be sure that there is no shame in how she is.

I have a slight concern on how I reassure her that she is very normal without advocating her to telling everyone when so many others might see her as "different" and could be scared of the unknown.

I worry about the first fumble in the dark with a boy or girl and whether people will be cruel to her and make her feel inadequate. Aaaaaaahhhh!!! I know that my husband (when we do talk about our worries) finds it quite hard and it does upset him. He somehow feels that he is to blame, that his sperm was inadequate, I don't quite understand why he thinks this, but I guess it boils down to the sperm being the decider of the sex of your child (please excuse me if I am misinformed, biology was never my strong point).

On another point, I know it's a long way off, but I just wonder how you know when your child would know whether they want surgery or not. I don't want to be the one to suggest it as that implies I feel she needs it and if she is really happy then I obviously don't want that for her, but until she has masturbated or had sex, how will she know whether she wants to change anything. It's going to be quite hard to have that conversation as I know I never talked with my mother openly about my sex life when I was a teenager. I just don't want her to have her first sexual experience and find that someone reacts badly to the size of her clitoris and she is scarred mentally. I don't know much about the surgery side of things available but I believe that the sensitivity of the clitoris can be affected greatly so I'd be petrified on getting anything changed before she can make her own decision.

I know I'm sounding very neurotic but I have lived with these kinds of worries and questions since she was born and found no forum to be able to express how I feel and be able to get some advice. I just think if I don't allow myself to think about her future and what will happen in her life then I will just forget that there is an issue and I will overlook something with her upbringing which I should address. I don't want to not give her correct advice and find one day she comes to me upset that she is "different". I want to make sure I prepare her for the fact she is slightly different from other girls. I just don't want anything to be a huge shock to her.

That's all for now

[prince....ss?]

Hello again Snowflakes,

You are asking some very difficult questions. Questions that perhaps don’t have one clear answer…I am reluctant to give you specific advice because for apparent reasons I don’t have children and my perspective is one from a viewpoint of instant corrective surgery and not being informed of my actual condition. So the best I can do for you is tell of my experiences and the issues that I grew up with and the roles that parents and friends played in my life. So please take what I say as only one possible scenario of many.

As far as my knowledge of biology and anatomy, I’m lucky to know the major exterior parts such as hands and feet.

When you talk about when and how to tell Chloe about her condition that is a tricky one. I was never told but the scars needed an explanation so I got a version of the story nothing that included testicles or no vaginal openings. Just the birth defect story and how I was born without ovaries and that I would never have children and if they did not operate I would have died…cut and dry. But even at a very early age I knew it was more than that I knew that I was different. I did have a bad experience when I was very young I told my best friend that I could not have children this is when girls started to get boobs and I did not. And she decided that we were not friends any more…that was the last non spouse person that I ever told. So was it that I was not developing as a young woman should and that I did not fit into breast development competition?…I don’t know. So your inclination that she will discuss this with a friend or more is real. But the true friends will stand by her and accept her as she is. But there will be disappointments, but that is life. I do know that I did not like finding out about my condition at 43…that was a bit rough. But I like that you will openly discuss these things with her…that is important.

I do think that you underestimate peoples abilities to accept Chloe as she is and not act differently because of her condition. I am not suggesting that a T-shirt with “Proud to be Intersex” written on it is in order but your secrecy will set a trend with her. If you appear to be ashamed would this set an example? "Something we don’t talk about in public". I think if you tell her the full story early enough to where she can almost understand the full story then it will be something that she can learn to deal with in her own way. And if she makes a bad move and falls down, that is what mom and dad are for to pick her up wipe away the tears and tell her every thing is all right. But starting early and allowing her to make one step at a time in accepting her body will make the first time experience with a partner easier. But that is just my opinion from my experiences.

Fingers are tired and I get to treat myself to a beer, so that is all for now.
When you get full membership privileges feel free to PM or email me.
Prince….ss?

[Snowflakes]

Once again, thank you for replying. I found your experiences very helpful. I certainly don't want to make her feel ashamed at all. In fact my husband and I do often feel we want to talk to our parents and we know without a doubt how supportive they will be, I guess our main issue has been the fact that she has a tracheostomy. This has involved all sorts of other concerns and worries so I think that we may address the issue of letting our parents know once she has got rid of the trachy (which is due next March). I think one thing at a time has been our approach, we don't want their brains to overload. I'll pick my moment and talk to my husband about it again and see what he thinks. To be honest as well, because we'd had no experience or knowledge of being intersex, we had no idea what the right thing by Chloe would be to do. It's so wonderful to be able to talk to someone that is like Chloe.

I think you're absolutely right that I can't plan her entire life as a bed of roses, but I'd so like to ;-) She will make decisions in her life that won't always be the best but we will always be there to pick the pieces up.

Anyway that's all for now, hope you enjoyed your beer ;-)

[Peter]

Hi Snowflakes,

You raise many interesting questions about your daughter's intersex condition. My immediate reaction is that before you consider possible treatment options, that I would recommend trying to get a definite diagnosis of your daughter's intersex condition. You mentioned that you daughter has both ovo-testes and has XY chromosomes.

I like your attitude about trying to put off treatment decisions until your child is old enough to be involved in making medical decisions about her own body. You are right to be concerned about genital surgery possibly damaging your child's sexuality. I have heard of intersex women, who were able to avoid genital surgery, that they don't have personal problems with their clitoris not being removed or reduced. Testimony about this is part of the San Francisco Human Rights Commission's recent intersex report. Fertility questions are very difficult. I believe that you should plan to have a heart to heart talk with your daughter when she is eleven or twelve, if she does not ask sooner. If she asks sooner, I would be open and honest about her body.

I think that openness and honesty is the best path. I hope that both doctors and parents can increasingly see the importance of openness and honesty in relating to intersex children. I know many intersex people who deeply resent growing up in an atmosphere where our physical difference was often shrouded in shame and secrecy.

Peter

[Snowflakes]

Hi Peter,

Thanks very much for your post. I would LOVE to get a diagnosis for Chloe and I am in the process of chasing up our geneticist. I know she wants to link Chloe's laryngeal cleft with the intersex issue but has not had any joy. I think I will try and get her to look into these as separate issues and see if she can get me a diagnosis so I can know a bit more about the issues Chloe will have growing up.

I will keep you posted, but thank you for your encouragement and advice.

[Peter]

Hi Snowflakes,

Good luck. Part of the reason that a more refined evaluation of your daughters's situation could be of great benefit to her, is that cancer rates vary dramatically with different types of ovo-testes conditions. With an ovo-testes condition and an XY karyotype, I have read an article that says that the cancer risk is at about 10%. With other ovo-testes conditions, the cancer risk is as high as 30%. So having a better idea of your daughter's genetic situation could be of great value to you as you shift through your options. From watching educational videos from the Intersex Society of North America, I know of a mother who felt considerable pressure to perform surgery on her daughter as soon as "cancer" was mentioned. I am not a doctor, and it would be wrong for me to recommend a treatment option, but I suggest talking with your doctor about the risks of cancer, the age at which cancer in intersex people usually occurs, and about what steps the doctor plans to take to monitor your daughter’s condition on an on-going basis.

Peter

[Wyn]

Hi Snowlakes,

I am a father of 4 boys, all 'normal', but I will relay one piece of knowledge I have gained. My youngest developed pyloric stenosis at about 3 months old -a life-threatening condition if not treated promptly. It is not related in anyway with intersex, but the issue of infantile surgery is universal.

Through this experience, I feel VERY strongly that if you can avoid surgery anywhere up until the child is able to communicate, you should do so. Any surgery is traumatic for child, and to be 'clueless' about these extremely painful and invasive actions against a child who is unable to understand what is being done, is, in my opinion, criminal, unless the situation is critical and life-threatening.

I do not consider any IS condition a 'critical' situation, except in cases where there may be hormonal imbalances, such as in CAH, or where the deformity is life-threatening, as in colachial extrophy (sp?), and in CAH, this is not a surgical situation to my limited knowledge.

In terms of my son, he was extremely upset at the invasion of his body, and I feel that, compared to my other children, became excessively 'needy', and always needed affirmation that he was 'OK'. As parents, we did all we could to see him through this problem, and he's now an exemplary young man of 13. Just the same, we would have rejected this surgery, except for it's emergency status.

What I read in your posts is that the current concerns revolve around 'being accepted' and 'what will happen in the future'? I strongly feel that acceptance begins within the family, and as long as this acceptance is unconditional, and done with true love and concern, the child will KNOW that he/she is OK, and will ignore any problems outside the home. Telling the child all that they can 'handle' relative to their age and ability will be something to discuss with a child counselor, and will be an important factor in the child understanding their own situation as they grow into an adult. I think that this is one critical factor overlooked by many, and was particularly true since the surgical intervention of IS conditions began. I can tell you here, I have NOT had a good experience with the surgery that was forced upon me at the age of 6 months.

If you read the various posts here in the forums, you will find a number of individuals who have essentially the same problem as your child. I know that you see 'her' as a 'girl', but you need to be aware that any androgen exposure in the womb can (but not necessarily) result in a male patterning of the brain, right from conception. To force this child into a female role model may be counterproductive, as there have been a number of these types of cases where the child asserted a male identity later in life, regardless of any surgical intervention. I feel you may need to educate yourself further before assenting to any permanent 'modification' of the gonads. By the same token, it may be that 'she' does have a female patterning, and will take on the role model you have 'assigned' her. But, in the final analysis, only the child can tell you what they feel like, and what they would prefer to 'grow up as'.

I do feel that any permanent assignment can be held off for a number of years until the child is able to verbalize their desires. Professional counseling will be crucial to both the child and your own peace of mind, and only when the child is able to understand the consequences of any surgical procedures, should they be attempted.

I will accede to Peter's quote of 10 to 30 % potential for 'cancer', but I will also point out that an article on emedicine.com about ovo-testis indicated between 3 to 16% morbidity potential - significantly lower than the extreme number of 30%. But, again, these numbers typically represent cancerous onsets that happen AFTER puberty - quite a ways down the road for your child. Obviously, consulting with your doctor is the only way to truly understand these issues, but I feel it would be wise to consult with a number of specialists in this area to better gauge the potential for any problems. I, myself, have an ovo-testis, and there have been no problems for me, other than the sex-reversal issue at a late age (46), but I am extremely healthy in all other respects. I do think that permitting your child to have the ability to procreate is of far more importance than any 'appearance' issues, particularly since this child will eventually become an adult. They may have some real issues with any 'sterilization' later on down the line.

Anyway, these are some of my thoughts, and I hope that they are of some help to your family's situation. I do wish your family all the best.
Wyn

[Peter]

Hi Wyn,

Thanks for your thoughtful post. I like your observations about the frequency of gonadal tumors. I got my information from a year 2000 version of the ISNA FAQ's that I saw on-line. It said in part:

"In general, the likelihood of gonadal tumors is small (~5%) before mid-twenties, and increases thereafter, with lifetime probabilities of 30% for partial or complete gonadal dysgenesis, and 10% for 46XY true hermaphroditism.

Gonadal tumors are less likely in cases of sex-reversal (46XX male, 46XX true hermaphrodite)."

Your lower numbers are probably more realistic if one takes a more normal time span into account. High numbers are only reached at about 50 years of age. That allows plenty of time for follow up observations. As the ISNA FAQ mentioned, the likelihood of gonadal tumors is only about 5% before the mid-twenties. But my point still stands that Snowflakes could benefit in having a more complete picture of the specifics of the ovo-testes condition of her daughter.

I hope that this information helps clarify the difference between the numbers we cited. Although we cited somewhat different numbers, I believe that we would agree on the importance of involving intersex children in medical decisions that do not involve medical emergencies.

Peter

[Snowflakes]

Hi,

I found your post very interesting. My husband and I have decided that we will share with our family and close friends about Chloe's condition. We have also decided that we will do nothing at all about the way Chloe looks externally as that is not our call and from reading posts and listening to others that are intersex this is definitely the right decision. As I've said earlier I'm probably putting far too much focus on this as our mothers who have changed nappies and bathed Chloe have never questioned her sexuality. She appears very strongly to be female although her chromosomes say otherwise, but whatever happens as she grows up and makes decisions on how she wishes to be "classified", we'll ALWAYS be there for her, however hard it could be if she suddenly felt more masculine than female.

Thank you

[megela]

So wonderful to see your post! I have been logging onto this site off and on for two years (since adopting my daughter who was born intersex), trying to learn as much as I can about how to parent her well. It would be so nice to have another parent to think all of this through with!

I have had a wonderful experience of reading the adults posts on this site, and feel that I have learned so much of what NOT to do...such as "don't lie to your child" and "don't tell everyone about your child being intersex, but allow your child to do what he/she is comfortable with in terms of talking with people", and "don't do surgery on a child who is not able to participate in the decisions"!

Unfortunately, by the time we adopted our daughter (when she was two), she had already been through surgery. We can only hope that the damage they did wasn't the worst that can be done. We met her surgeon, and he told us that he did "nerve sparing" surgery, but we don't know what she will be able to feel. And in any case, we just wish they had left her alone...We have no knowledge of how her genitals looked before surgery, and know that she will ultimately wish she knew. So painful to know already that she will be hurt and angry about what was done to her. I feel that your daughter is SO fortunate to have parents like you who read up on it, and decided not to do surgery immediately, and who are trying to do the best for her. And I feel so lucky that resources like this one exist for us parents!! In terms of being afraid that she will feel embarassed to be different...I feel the same worry, and at the same time, don't think it merits doing surgery.

Our child is also xy chromosomally, and we don't have a diagnosis either. The closest we have is the endocrinologist's suspicion that she has "gonadal dysgenesis"...but we don't have post-operative notes to know exactly what the surgeon found when he went into her abdomen. We did ultrasound, and an MRI, but she is too little for them to be able to discern whether she has gonads still, or any other organs for that matter. The notes about her pre-surgery are contradictory...some mentioning uterus and ovaries, and something else about gonads... We are going to try an MRI again when she is 6 or so years old. In terms of doctor's advice, we, too, have been told that if she has gonads still that they should be removed due to a risk of cancer...I am not sure about this part...and in her case, want to consider keeping them inside (if she has them) in case she decides to be male around puberty...and she might welcome the residual testosterone...I know that I am sounding very matter-of-fact about this possibility, but we decided when we adopted her (knowing that she was intersex) that we would be okay if she decided that she really isn't a girl. Mostly we just want her to be happy! Both of our immediate families know, too, and a few close friends.

Right now, my big question is how to talk with her about being intersex. At four years old, our child is starting to get "gender" differences...though it still is pretty fluid for her...she'll ask, is "x" person a a boy or a girl...and is trying to figure out what it means to be one... We often respond that a person can be a boy or a girl or a little bit of both - hoping that this last category will allow her to be who she may want to be. All this to say, that it's time for us to directly talk with her about being an intersex person, so that she will never remember a time when she didn't know. From what I have learned on this site, honesty is the most important thing. She is being raised as a girl, but I want her to know that she really has the option to figure it all out herself. I think she would understand that concept of being a little bit of both...so I am thinking of starting there...I am worried right now, though, because so much of her identity searching right now is about being the "same as" or "different than" others...and of course we are important role models for her, and neither of are are "a little bit of both." We don't want her to feel strange. But maybe that's inevitable??

Anyway,...that's all for now...I would welcome all and any thoughts on my post. And hope that we can keep in touch, Snowflakes!
Thanks-
Megela

[Peter]

Hi Megela,

Thanks for your post. I appreciate that you have given much thought to talking with your daughter about being intersex. You seem to have sensitivity to gender issues when you say that people can be a little bit of both.

In my case, the secrecy and shame that dictated my parents approach to me was very psychologically harmful. I know that there might have been, in the past, a theory that this secrecy was necessary if a parent was ever to successfully "bond" with an intersex child. However, I believe that the opposite is true, and that the requirements for secrecy themselves led to a failure to bond. In the end, I believe that only honesty heals. When I was six, and accidentally was knocked unconscious while playing, I awoke to see my brother and a friend having pulled down my pants, and they were examining my ambiguous genitals. I could not discuss this incident with my parents because the wall of secrecy had already been built.

Issues of a child's future fertility must weigh heavily on a parent's mind. I know that it weighed heavily on my parents' minds. I think that in many cases, where future fertility is in question, parents don't want to bring up the subject of intersex, because they might be put in the position of having to answer the question "Will I ever be able to have children?"

I wish you all the best on your efforts to raise your child in an honest and open manner.

Peter

[megela]

Hi Peter,
Thanks for your message. We are doing the best we can with her, and know that she will have to come to terms with her life experiences in her own way as she gets older. She has the added complications of being adopted child from another country. But anyway, in terms of fertility issues, we hope that will work in her favor...we will always tell her that of course she can be a parent to her own child if she wishes to - through adoption - like we did!

Thanks again-
Take care - Meg

[Jay]

I commend you on how open, honest, forthright, straitforward--that's as many synonyms i can come up with without resorting to a thesauras--you are being with your child. while my my upbringing was easy compared to many other members', as it was one based on ignorance instead of punishment, apathy versus hatred--while yours is loving and heartwarming.

i had to find out on my own in just the past couple years, through tiny pieces of information gathered from several different people. my parents didn't say anything then, nor are they the ones that have recently helped me uncover the hidden truths from long past.

the truths were that i was born with a micropenis and a shallow psuedovagina, but with fully descended testes. i am 46xy, sterile, but other than that my 'condition' is unknown. while neither your daughter nor i can know really what happened during birth, your daughter has two partners in helping her come as close as she possibly can. best of luck to the three of you. jay.

[megela]

Thanks for your support Jay! It means so much to us. Since I last posted, we talked with our daughter about being intersex. She's four, and either we weren't talking language she could understand, or it was too much to take in because she responded by saying something like " "Hey! I've got a story to tell you..." and went on to tell a story about her favorite stuffed animals having an adventure...I asked if she had any questions, to no avail... Well, at least she heard the word "intersex" from us first, and knows that we think she is a special and great kid. We'll see...
Thanks again for your reply.

[Human]

Hi Snowflakes,
I have been reading your posts and will offer you the following sentiments on childhood surgery, hormone treatments, psychological testing, later surgery, still more surgery due to some kind of condition my dad alleges he can only slightly remember. Hospital records were lost and some were buried with my mom. I was born in 1960 when the practice was to quickly perform surgery and hope the person never finds out, and if they ask questions later to try to keep dancing without ever exactly telling them what happened. Eventually an insurance company and several surgeons suggested I had a birth defect. My life experience, artwork, self perception based on appearance and astonishing physical strength for a woman (?) compounded into the realization for me that I was not born exactly normal. When I have talked to my Dad, he only says "something happened but I don't remember what", which I find strange since he has no mental disorders nor senility. In childhood I clearly remember my anatomy before and after surgery-not the same. I remember I was pretty mad about it too. I remember prior to surgery endless doctors visits for catheterizations and parades of doctors all looking at me and talking in the hall. I remember the dozens of shots, pills, birth control pills before my period started an irregular hell of problems that eventually ended with a 9lb tumor and my allegedly small, irregular, retroverted, twisted uterus and deformed ovaries needing to be removed six months ago. I am delighted to tell you I feel fantastic for a change still on an estrogen patch.

My teen years were full of trouble and turmoil for I was aware that I looked alot like a boy and was constantly mistaken for one even in dresses, makeup and heels. I never got breasts, just injections and pills. I never and still to this day (dispite being a very balanced individual, university teaching career, artist and outstanding athlete) felt exactly female or male. Eventually in my teen years I tried to kill myself twice and went through major drug problems in large part because I just always felt weird in my body, people used to stare at me funny. Finally I got the web neck thing I had from birth removed, along with more plastic surgery but still I don't seem to look quite female. When I became aware that something was amiss I became sad that I went through all of this, because I may have not done any of it had I been told the truth by my parents. However I have reflected at length and am glad they had the surgery for me in childhood and raised me as a female...for even though I don't relate as well as I wish I did to that identification, I wouldn't identify as a male too much....except my athleticism usually exceeds most men my age and in that arena I have suddenly grown very uncomfortable. I have been an athlete my entire life, made a good career of it, performed, competed and now become quite uncomfortable with the sight of my large shoulders, arms, male looking hips, legs, hands, feet and heck my face too doesn't seem to lie.

I read Sexing the Body and found it pretty enlightening and helpful in finally comming to peace about my body. I don't know what exactly my problems were/are. I do know I was born had surgery at birth, was in an incubator for a month, had an extremely!! gender female specific upbringing, psychological tests, some sort of genital anatomy that seemed to get cut off in surgery I remember clearly...the shots, the birth control pills starting at age 9, the comments of surgeons and an insurance company and my fathers own admission that something happened-although he can't remember what it was (is that weird?).

I wish my father would level with me. I wish my medical records of my birth and following surgeries were not lost by others. I wish I was told (although I remember it clear as a bell) in my childhood that I needed the surgery for I do think it was right for me and I'm glad I had it. It's just that I may have avoided the plastic surgery and nightmare depressions that followed me, the physical awkwardness (that ultimately propelled me into dance and athletics where I had a fine career) that plagued me, the constant cases of mistaken gender people seem to make with me. Even today, when I dress in a beautiful evening gown, heels etc....I look unusual and people do seem to stare for I am as big if not bigger than most men. ...and I weigh as much too even with my trim figure no dieting has ever changed that and believe me I've tried to diet away my physical nature. Oh well, sign me Human with Love and a margin more peace finally. Good luck with the decisions with your daughter. I think as long as she knows love was a motivating consideration any outcome will be easier to handle, and I would say you must tell her. No one should hear what I've been hearing lately....and no one should have no records of their birth or life.

[Sofie]

.. we talked with our daughter about being intersex. She's four, and either we weren't talking language she could understand, or it was too much to take in ... When I was 5 or 6 years old, my mother told me, that some of my glands didn't function and at that time I felt frightened.

[megela]

Thanks for your response Sofie. Sorry it took me sometime to acknowledge your post. I think it may be a bit scary for our daughter, too. So, we are trying to go slowly and gently with her. She has brought up intersex herself a couple of times since I last posted. and seems to be getting her head around it a bit. She calls it "my intersex"...so I think she thinks that "intersex" represents organ in her body or some such...We'll see. Thanks again for your post.

[zenditz]

I feel for your daughter, now and in the future,

I am an intersexed female, however genetically XX. I haveC.A.H. (http://www.dundee.ac.uk/medther/tayendoweb/congenital_adrenal_hyperplasia.htm), and congrats on not having here clitoris removed or shortened.

Her story seems much like mine. I too have ovaries that didn't quite stay that way, but fortunately they did not cause any excessive release for testosterone in my body (although my father so to it that Dr's did :( ). No one here can say which would be easier for your daughter, growing up more like a normal, whatever that is, girl... or to just be left alone. To be honest no matter what she is going to have it tough. Being genetically XY, your missing a big part as well (and I'm sorry if this has been touched on), but as she grows older she may very well feel and be as male as here genes, genitals be denied... she could feel, and be a he... so doing anything now would be painful to her no matter what.

As for her ovaries / testosterone, I understand having them removed... my parents were advised of the chance of them becoming cancerous, but my father chose to have them left in regardless, and though they cause no changes in puberty, they did eventually appear to become cancerous. My growths where actually benign, but my ovaries where removed regardless. So I understand your position, and applaud your stance on that.

As for thinking about your 3 1/5 yr. old's sexual health, preference, and identity is a wonderful thing... as sign that we (being the intersexed community) have had an impact after all... and that your a very for thinking mother... and an accepting one... she's truly blessed to have you, and her father, as parents... many intersexed people were / aren't so lucky. But along with your worries of her sexual health, I just want to point out that she may identify as a male as she develops... and grows, something to be ready for, and hopefully something you can embrace if it comes to it.

As for real disabilities, I sadly know more than I would like alone those lines as well. I was born with Generalized Dystonia (http://www.dystonia-foundation.org/defined/early.asp), and am confined to a wheelchair. Although I was no always in my wheel chair I was always effected by it, and when it came to trying to diagnose my Dystonia, many Drs' attempted to link it to my C.A.H., because it causes such an increased vulnerability to disease, and just sickness in general, this assumption though ended up taking more time to get a correct diagnosis, because both conditions, although, genetic, are unrelated.

I hope I've been some help, but WTG girl on how you have, and are, accepting your daughter... you sound like your daughters own goddess on earth (guardian angle, for those non-pagans, out here). Take care, and feel free to e-mail me if you want, or need.

Good luck & lotsa Hugs,
Katie