Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Debi, if it were of me would want to have it opened because when puberty comes and menustration begins it might lead to more issues. She may also feel different from peers but to add a physical difference too it can add to the unsure of self feel until she reaches a more mature way of seeing self. but for her to look at long term and beleive that she will be and will seek out life like others and she has of a right to sexual relations in her future if she is at an age to seek it. It can add impact of less self image and esteem if this other barrier presents itself. So for me would want the medical interventions now as no one knows what her long term future holds but work towards it being an independent one or the Least restrictive one, this way you prepared for the best outcomes for herin advance. Also as she ages and needs pap test or has female issues it might be of very difficult and painful if not repaired as a young child. If she choses not to be of sexual as adult person at least you spared her some very uncomfortable life time issues later for her. A person in my areas works with a client who was felt by my friend person to be much misdx as schizophrenic and this friend person feels it is instead unchecked AS this client also has this same female issues and the friend person of me asked if I to ever heard of it and telled her no, but she to say the client is even so closed off so badly inside too there is not a way to do any female exams to rule out things such as cancer and or female diseases the natural way. The friend person knows this womans age plays part and she was in an institutional setting of years past but is unable to say what happened or what the medical issues were to caused the closing off and the skin to grow together and close her off. So you sharing is he second case of this I to hear among autism girls and so it sparks an interest in the prevalance of this in the typical population in regards to the autism community and maybe is often not shared here beause of fear of the issues of being more different and others lack speaking with comfort about sexuality and or gender issues in their daughters to public formums but to me have no set boundary because here to teach and help others to see from myown perspectives in a way to help. Sondra In Autism_in_Girls , " Debi " wrote: > > Allie has had a labial adhesion since she was a few months old. For > those who don't know, it's when the vagina partially grows shut. In > Allie's case, there's now just a tiny opening in her vagina. Her > urologist told us one problem could be that the skin will thicken up. > He used the analogy of the area turning more like the skin on one's > hand then like the skin on one's mouth. If this happens, > reconstructive surgery happens. > > I didn't look that close because she's nearly 7 years old and fully > potty-trained. I don't want her to think I'm violating her privacy > down there. My concern now is what to do, at very least it's > significantly shut. One option is to use premarin cream, which has > caused her burning. It does open the area up, but it closes back. Her > DAN! doc just told me i could get a compounded estrogen formula from a > pharmacy that could be more gentle on the area. > > My question is this. Do I worry with it at this point? The only major > issue with it now is that urine is pooling in her vagina and then > leaking out. My concern is that if she ever chooses to have a sexual > relationship, the obvious of not being able to or not being able to > enjoy it, but right now we don't know if that will be an option for > her. Do I focus on getting it to open and not worry about the > potential for reconstructive surgery until she's older? > > I'd appreciate any perspective. As I've said before, i was molested as > a child so I'm overly sensitive to this area. I want to do what's best > for her health without emotional issues, and I honestly don't know > what that is. > > TIA, > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi Debi, I don't have any experience with this, so I am just going with my gut instinct. It sounds like using the cream now might be less intrusive than surgery at a later date. Just my 2c. Lori > > Allie has had a labial adhesion since she was a few months old. For > those who don't know, it's when the vagina partially grows shut. In > Allie's case, there's now just a tiny opening in her vagina. Her > urologist told us one problem could be that the skin will thicken up. > He used the analogy of the area turning more like the skin on one's > hand then like the skin on one's mouth. If this happens, > reconstructive surgery happens. > > I didn't look that close because she's nearly 7 years old and fully > potty-trained. I don't want her to think I'm violating her privacy > down there. My concern now is what to do, at very least it's > significantly shut. One option is to use premarin cream, which has > caused her burning. It does open the area up, but it closes back. Her > DAN! doc just told me i could get a compounded estrogen formula from a > pharmacy that could be more gentle on the area. > > My question is this. Do I worry with it at this point? The only major > issue with it now is that urine is pooling in her vagina and then > leaking out. My concern is that if she ever chooses to have a sexual > relationship, the obvious of not being able to or not being able to > enjoy it, but right now we don't know if that will be an option for > her. Do I focus on getting it to open and not worry about the > potential for reconstructive surgery until she's older? > > I'd appreciate any perspective. As I've said before, i was molested as > a child so I'm overly sensitive to this area. I want to do what's best > for her health without emotional issues, and I honestly don't know > what that is. > > TIA, > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Debi, a friend of mine used Evening Primrose Oil instead of Premarin cream to open her daughter's. Want me to e-mail you privately? I can give you her name and phone number if you want to talk to her. PennY > > Allie has had a labial adhesion since she was a few months old. For > those who don't know, it's when the vagina partially grows shut. In > Allie's case, there's now just a tiny opening in her vagina. Her > urologist told us one problem could be that the skin will thicken up. > He used the analogy of the area turning more like the skin on one's > hand then like the skin on one's mouth. If this happens, > reconstructive surgery happens. > > I didn't look that close because she's nearly 7 years old and fully > potty-trained. I don't want her to think I'm violating her privacy > down there. My concern now is what to do, at very least it's > significantly shut. One option is to use premarin cream, which has > caused her burning. It does open the area up, but it closes back. Her > DAN! doc just told me i could get a compounded estrogen formula from a > pharmacy that could be more gentle on the area. > > My question is this. Do I worry with it at this point? The only major > issue with it now is that urine is pooling in her vagina and then > leaking out. My concern is that if she ever chooses to have a sexual > relationship, the obvious of not being able to or not being able to > enjoy it, but right now we don't know if that will be an option for > her. Do I focus on getting it to open and not worry about the > potential for reconstructive surgery until she's older? > > I'd appreciate any perspective. As I've said before, i was molested as > a child so I'm overly sensitive to this area. I want to do what's best > for her health without emotional issues, and I honestly don't know > what that is. > > TIA, > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Thanks, Sondra. I have asked if other girls with autism have the same issue. As it was explained to me from an NT perspective, the issue is that she has low estrogen until puberty hits. I've theorized if people with autism do have higher testosterone, it seems to me it would make this problem more likely to happen. We had Allie tested for testosterone & she was considered perfectly normal for her age, but I've also wondered if she might have abnormally low estrogen that might make her testosterone level function higher, if that makes any sense. I think I'll try the cream again but get it compounded to be more gentle. THe problem with it is that it has closed back up every time. Maybe if I can keep it on her long enough or do a maintainance application it will keep it from closing again. Thanks again, Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I never heard of that, but I think I'll try it. You are welcome to email me if you want, it sounds fairly easy to do. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Pondering...I wonder if there's a homeopathic form of natural estrogen you could give Allie? > > I never heard of that, but I think I'll try it. You are welcome to > email me if you want, it sounds fairly easy to do. > > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Don't know about homeopathic, but I just did some research and read about natural estrogen creams. I'm gonna head up to Walgreens in a sec & see what they have. Her DAN! doc mentioned an OTC natural brand, I saw it at vitaminshoppe.com I bet our HFS has plenty. Debi > > Pondering...I wonder if there's a homeopathic form of natural estrogen > you could give Allie? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi everyone, I'm new to this group. We have 5 girls and our 3rd one is autistic(she is 3). I have found this subject to be worrying. Is this common with these girls? Do you just have your normal g.p have a look, or do you find out for yourself? I couldn't imagine her letting anyone do that. Tracey Re: female problem advice Debi, if it were of me would want to have it opened because when puberty comes and menustration begins it might lead to more issues. She may also feel different from peers but to add a physical difference too it can add to the unsure of self feel until she reaches a more mature way of seeing self. but for her to look at long term and beleive that she will be and will seek out life like others and she has of a right to sexual relations in her future if she is at an age to seek it. It can add impact of less self image and esteem if this other barrier presents itself. So for me would want the medical interventions now as no one knows what her long term future holds but work towards it being an independent one or the Least restrictive one, this way you prepared for the best outcomes for herin advance. Also as she ages and needs pap test or has female issues it might be of very difficult and painful if not repaired as a young child. If she choses not to be of sexual as adult person at least you spared her some very uncomfortable life time issues later for her. A person in my areas works with a client who was felt by my friend person to be much misdx as schizophrenic and this friend person feels it is instead unchecked AS this client also has this same female issues and the friend person of me asked if I to ever heard of it and telled her no, but she to say the client is even so closed off so badly inside too there is not a way to do any female exams to rule out things such as cancer and or female diseases the natural way. The friend person knows this womans age plays part and she was in an institutional setting of years past but is unable to say what happened or what the medical issues were to caused the closing off and the skin to grow together and close her off. So you sharing is he second case of this I to hear among autism girls and so it sparks an interest in the prevalance of this in the typical population in regards to the autism community and maybe is often not shared here beause of fear of the issues of being more different and others lack speaking with comfort about sexuality and or gender issues in their daughters to public formums but to me have no set boundary because here to teach and help others to see from myown perspectives in a way to help. Sondra In Autism_in_Girls , " Debi " wrote: > > Allie has had a labial adhesion since she was a few months old. For > those who don't know, it's when the vagina partially grows shut. In > Allie's case, there's now just a tiny opening in her vagina. Her > urologist told us one problem could be that the skin will thicken up. > He used the analogy of the area turning more like the skin on one's > hand then like the skin on one's mouth. If this happens, > reconstructive surgery happens. > > I didn't look that close because she's nearly 7 years old and fully > potty-trained. I don't want her to think I'm violating her privacy > down there. My concern now is what to do, at very least it's > significantly shut. One option is to use premarin cream, which has > caused her burning. It does open the area up, but it closes back. Her > DAN! doc just told me i could get a compounded estrogen formula from a > pharmacy that could be more gentle on the area. > > My question is this. Do I worry with it at this point? The only major > issue with it now is that urine is pooling in her vagina and then > leaking out. My concern is that if she ever chooses to have a sexual > relationship, the obvious of not being able to or not being able to > enjoy it, but right now we don't know if that will be an option for > her. Do I focus on getting it to open and not worry about the > potential for reconstructive surgery until she's older? > > I'd appreciate any perspective. As I've said before, i was molested as > a child so I'm overly sensitive to this area. I want to do what's best > for her health without emotional issues, and I honestly don't know > what that is. > > TIA, > Debi > Autism_in_Girls-subscribe ------------------------ Autism_in_Girls-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 tracey , welcome. 5 Girls are to keep any mom busy. I to think the topic is of not a common things among autistic girls at all but was of curious of its prevelance. I to be named Sondra and am adult with HFA (high functioning autism) in Ohio. I to also be of mom to 4 kids who are dx with aspergers syndrome. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Tracey, chances are if your daughter had it you would know it. With Allie, I was changing her diaper when she was about 4 mos old. She had a bowel movement so I was trying to get all the folds of skin clean. Her vagina looked as if it was nearly completely closed. I made an appointment with her ped, who explained to me what it is. If you do a search on " labial adhesion " you'll find lots of info. My concern is now that she's potty trained there is no excuse for me to have to look that closely to see if it's grown together again. However, I told her i was gonna check her and it is indeed nearly completely shut again. Then I have ot deal with explaining to her why mommy is putting something down there that she doesn't like, which brings all these horrid feelings to me because I was sexually abused as a child, so then I feel super fearful of trying to help her because of all my feelings, blah blah. Lol. Debi > > Hi everyone, > I'm new to this group. We have 5 girls and our 3rd one is autistic(she is 3). I have found this subject to be worrying. Is this common with these girls? Do you just have your normal g.p have a look, or do you find out for yourself? I couldn't imagine her letting anyone do that. > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 I agree with Sondra - you should look into getting it repaired and the area normalized as soon as possible. Maybe even consider choosing surgery for a quick result instead of long term use of creams and other meddling down there. It would be a good time to talk about sex and babies and stuff like that in a limited but matter of fact way. Lots of young people have to get their genitals fixed because of minor malformations, especially in the case of boys, but also some girls. Normal is a very wide array of conditions and appearances, but something like this that would ultimately prevent a normal life with the opposite sex, and could cause much physical and emotional trauma later on at a much more vulnerable age - teens - with periods getting started and hormones and thinking about her sex and about boys and growing up and babies for real, plus it's going to make getting routine female care a huge deal, and she may choose to avoid dealing with that all together and then get serious health problems. It should be repaired now before all those things complicate the costs to her. It sounds like it is already causing problems with " unrine pooling inside her " . That can't be good for the vagina tissues. Plus I would think this would cause her to get leaky underwear, and cause her embarrasment and confusion around the potty training she supposedly conquered. I had so many difficult problems and issues during puberty and school years. If I had felt there was also something wrong with me or really different physically, it would probably have pushed me into a really bad depression. I had trouble talking about anything having to do with periods and sex. But I read books and looked at pictures and observed what the other kids did and talked about doing. I was comforted to know that I was normal in my body even if I was not normal in my interactions and feelings. It took many years before I grew up enough to get involved with sex or dating in a safe way, and could have used more help with that, but I did eventually get married happily. Good luck. Anastasia > > Reply-To: Autism_in_Girls > Date: Wed, 22 Mar 2006 13:31:57 -0000 > To: Autism_in_Girls > Subject: Re: female problem advice > > Debi, if it were of me would want to have it opened because when > puberty comes and menustration begins it might lead to more issues. > She may also feel different from peers but to add a physical > difference too it can add to the unsure of self feel until she > reaches a more mature way of seeing self. but for her to look at > long term and beleive that she will be and will seek out life like > others and she has of a right to sexual relations in her future if > she is at an age to seek it. It can add impact of less self image > and esteem if this other barrier presents itself. So for me would > want the medical interventions now as no one knows what her long > term future holds but work towards it being an independent one or > the Least restrictive one, this way you prepared for the best > outcomes for herin advance. Also as she ages and needs pap test or > has female issues it might be of very difficult and painful if not > repaired as a young child. If she choses not to be of sexual as > adult person at least you spared her some very uncomfortable life > time issues later for her. > > A person in my areas works with a client who was felt by my friend > person to be much misdx as schizophrenic and this friend person > feels it is instead unchecked AS this client also has this same > female issues and the friend person of me asked if I to ever heard > of it and telled her no, but she to say the client is even so closed > off so badly inside too there is not a way to do any female exams to > rule out things such as cancer and or female diseases the natural > way. The friend person knows this womans age plays part and she was > in an institutional setting of years past but is unable to say what > happened or what the medical issues were to caused the closing off > and the skin to grow together and close her off. So you sharing is > he second case of this I to hear among autism girls and so it sparks > an interest in the prevalance of this in the typical population in > regards to the autism community and maybe is often not shared here > beause of fear of the issues of being more different and others lack > speaking with comfort about sexuality and or gender issues in their > daughters to public formums but to me have no set boundary because > here to teach and help others to see from myown perspectives in a > way to help. > Sondra > > > In Autism_in_Girls , " Debi " > wrote: >> >> Allie has had a labial adhesion since she was a few months old. For >> those who don't know, it's when the vagina partially grows shut. In >> Allie's case, there's now just a tiny opening in her vagina. Her >> urologist told us one problem could be that the skin will thicken > up. >> He used the analogy of the area turning more like the skin on one's >> hand then like the skin on one's mouth. If this happens, >> reconstructive surgery happens. >> >> I didn't look that close because she's nearly 7 years old and fully >> potty-trained. I don't want her to think I'm violating her privacy >> down there. My concern now is what to do, at very least it's >> significantly shut. One option is to use premarin cream, which has >> caused her burning. It does open the area up, but it closes back. > Her >> DAN! doc just told me i could get a compounded estrogen formula > from a >> pharmacy that could be more gentle on the area. >> >> My question is this. Do I worry with it at this point? The only > major >> issue with it now is that urine is pooling in her vagina and then >> leaking out. My concern is that if she ever chooses to have a > sexual >> relationship, the obvious of not being able to or not being able to >> enjoy it, but right now we don't know if that will be an option for >> her. Do I focus on getting it to open and not worry about the >> potential for reconstructive surgery until she's older? >> >> I'd appreciate any perspective. As I've said before, i was > molested as >> a child so I'm overly sensitive to this area. I want to do what's > best >> for her health without emotional issues, and I honestly don't know >> what that is. >> >> TIA, >> Debi >> > > > > > > > > Autism_in_Girls-subscribe > ------------------------ > Autism_in_Girls-unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 The problem with surgical opening of it is that it oftentimes grows back. But I did talk with her DAN! doc about it, he suggestd an OTC estrogen cream that would be gentler than the premarin cream. I've been putting on her after she goes to sleep every night, should open it up in the next couple of weeks. Thanks for sharing your concerns, it's nice to hear I'm not being overly paranoid about wanting to help her with this area. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Can you work on teaching her to apply the creams etc herself? Then you feel better, and she has some privacy back. It will probably takea a while, and you will still have to check her out, and make sure she is doing it when she is supposed to, but at least it's a step toward more independence! Amnesty > > The problem with surgical opening of it is that it oftentimes grows > back. But I did talk with her DAN! doc about it, he suggestd an OTC > estrogen cream that would be gentler than the premarin cream. I've > been putting on her after she goes to sleep every night, should open > it up in the next couple of weeks. > > Thanks for sharing your concerns, it's nice to hear I'm not being > overly paranoid about wanting to help her with this area. > > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 I think I'm gonna try, my only fear is that because of her sensory stuff she'll freak out on me. Still, won't know less I try! Thanks, Debi Quote Link to comment Share on other sites More sharing options...
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