View Full Version : Hello everyone
I'm glad to have found an active intersex internet community at last :)
I'm 29 and live in France. I do not know exactly what "condition" I have, and I'm joining this board for the purpose of learning more, and maybe finding help with identifying it.
For most of my childhood I felt I did not fit within either usual gender, though I didn't mind being considered and raised as male. Then puberty came at age 9, with appearance of axillary hair, descending of gonads and enlargement of genitals, but no other sexual characteristics (no male body hair, hardly any facial hair, no thickening of jaw, no broadening of shoulders, etc. I am not sure of it but I think my gonads are only about half the normal size). I thought that these would just come later, and my feelings of not being "really" male vanished for the entire period.
But puberty ended at age 16. I'm now the shortest in the family at 5'3" / 1m63, lighter and smaller than any of my 3 brothers and dozen cousins. And since then I have had very slow breast development during my 20s (I've only now passed the A cup size), other than that I've kept the exact same near-child-like look. Shop clerks and strangers I come across call me "Miss" half the time, even when I have a really short hair cut and wear male-typed clothes on purpose. In fact this has been causing my girlfriend serious distress. Door-to-door salesmen regularly ask to see my parents...
I've only very recently learned about intersexuality, and in fact that discovery seriously relieved me - I had long believed I had gender dysphoria yet didn't feel right thinking of myself as female, just as I don't really consider myself male.
Welcome to the BLO.
I'm quite sure that there are people here who can help you.
spacegirl
11-29-09, 05:37 PM
They don't call you "mademoiselle"? :)
Kailana
11-30-09, 06:52 AM
welcome M-A,
Honestly don't think any of us can diagnose didley squat lol, too many possibilities. Your really going to need to see a doctor and get some lab work done.
Regardless of whatever knowledge any of us may have, any suggestions by us other then a reccommendation to talk to a doctor would be a waste of time.
Just kidding actually. Many of us do have some info that might be helpfull.
So here goes:
Have you ever talked to a doctor about this issue?
I would of thought that any doctor would of noticed your lack of secondary developement and been curious about it.
Making a small reccommendation:
At least start out by asking a doctor "What the hell is going on".
sorry, honestly if you dont make an issue of it, I would think they wouldnt either and if you do make an issue of looking for some explanation then they may take an interest and try looking for an answer.
I am a little curious about your family, not just your brothers and cousins but uncles too, could be that thier might be someone within your family who might have some answers for you if you ask. Same with your parents, as your older, if they are around ask them, they may know allready.
good luck
They don't call you "mademoiselle"? :)
Only when I'm alone :D
welcome M-A,
Have you ever talked to a doctor about this issue?
I would of thought that any doctor would of noticed your lack of secondary developement and been curious about it.
Making a small reccommendation:
At least start out by asking a doctor "What the hell is going on".
sorry, honestly if you dont make an issue of it, I would think they wouldnt either and if you do make an issue of looking for some explanation then they may take an interest and try looking for an answer.
Well, I've inherited my father's cautious attitude regarding medecine, so "don't ask don't tell" is kinda how it's been so far. I never tried to raise the point actively, and so far the most reaction I got was "...you look awfully younger than your age" with raised brows.
Here medicine is all about trying to fix what's wrong, so unless I have a defined problem that needs a solution (and that solution takes the form of pills that are covered by healthcare plans), doctors don't care.
I am a little curious about your family, not just your brothers and cousins but uncles too, could be that thier might be someone within your family who might have some answers for you if you ask. Same with your parents, as your older, if they are around ask them, they may know allready.
Well I unconspicuously asked around for specifics a few times. Apparently the only thing I'm "remarkable" for, is I had my puberty much earlier than my brothers (hence why it ended earlier as well and I ended up shorter). And for looking a bit more effeminate (mom teased me several times about it during childhood). I have access to all the relevant medical documents and there's nothing out of the ordinary in there save for the page about my multiple otitis and sinuses surgery at age 1. In fact the real "medical oddity" of the family is my younger brother, who cumulated several protein intolerances, hypothyroidism and a couple small bone deformities. We were born 20 months apart. I'm not sure whether all this is meaningful. I'll try asking my mom if she had any medication during pregnancy.
good luck
Thank you :)
Kailana
12-01-09, 03:12 AM
hypothyroidism
that is the answer you probably are looking for. more then likely both you and your little brother have a similar issue. Talk to a Doctor it should be easy enough to test for if your interested in knowing.
Argh, sorry, I got the wrong term. It's hypopituitarism and not hypothyroidism - he had growth hormone injections daily for that. When that was diagnosed my parents wondered if any of us might have that problem too, but our growth curves were apparently normal enough.
Plaid Voodoo Doll
12-01-09, 10:00 AM
But puberty ended at age 16. I'm now the shortest in the family at 5'3" / 1m63, lighter and smaller than any of my 3 brothers and dozen cousins.
Don't feel too bad about your height. You'd still be taller than my 4'9".
Shop clerks and strangers I come across call me "Miss" half the time, even when I have a really short hair cut and wear male-typed clothes on purpose.
When I had really short hair and dressed like a guy I was mistaken for a boy. It's kind of funny actually. I laughed. Not when the guy was still around though. I look down at myself now and wonder how he could have missed the two huge 'balloons' on my front, but then, I think I was wearing something baggy that day.... hmmm..
Anyway, welcome and so on. I hope you find the answer you're looking for.
spacegirl
12-01-09, 11:19 AM
I'm 29 and live in France.
...
Shop clerks and strangers I come across call me "Miss" half the time,
They don't call you "mademoiselle"? :)
Only when I'm alone :D
"Miss" est en anglais., "mademoiselle" est en francais?
So all the french-speaking store clerks and strangers in france consider you childlike and call you by the english word "Miss", but none of these french speakers would call you by the equivalent french word "mademoiselle"?
"Miss" est en anglais., "mademoiselle" est en francais?
So all the french-speaking store clerks and strangers in france consider you childlike and call you by the english word "Miss", but none of these french speakers would call you by the equivalent french word "mademoiselle"?
By that "Miss" I just mean the "Madame" I get every so often, for readers' sake. I assumed english to be expected. Sorry for any confusion.
When I had really short hair and dressed like a guy I was mistaken for a boy. It's kind of funny actually. I laughed.
I'm used to it and don't mind... However when my GF and I visited the wedding gown store a couple weeks ago (we're getting married next summer, long story short that's also why I set out to document and try to get answers) and the store owner walked to us and greeted with a warm "Bonjour mesdames" I could notice the smoke blowing out of my love's ears. She made quite a scene on the way back. And the day after. And the next day as well.
Anyway, welcome and so on. I hope you find the answer you're looking for.
Thank you.
Plaid Voodoo Doll
12-01-09, 01:00 PM
I'm used to it and don't mind... However when my GF and I visited the wedding gown store a couple weeks ago (we're getting married next summer, long story short that's also why I set out to document and try to get answers) and the store owner walked to us and greeted with a warm "Bonjour mesdames" I could notice the smoke blowing out of my love's ears. She made quite a scene on the way back. And the day after. And the next day as well.
I could imagine. I think most women are like that. Want their men to be seen as men, and so on. I can't I'm particularly picky on the subject. I'd think it was absolutely hysterical and play to it. But in the end that would make it more embarrassing for that person should they ever come to realize it. Sort of a cruel joke, neh?
fraulein_Maria
12-01-09, 09:09 PM
[QUOTE=M-A;21846]Then puberty came at age 9, with appearance of axillary hair, descending of gonads
>>> You mean your gonads stayed in your abdomen until 9 and no one thought this was unusual? If the gonads of a boy do not descend within a week after birth, the doctors want to know, so they can fix the problem.... and its a serious problem. If they do not descend (or are not made to descend) they will "cook" inside the body within 2 years leaving the child STERILE. This is not a statement of disbelief. IF your parents and doctor knew you were XY intersexed and therefore 99% certain that you would be sterile anyway.... they might (depending on the condition) leave them up there, until puberty or till they presented problems, which ever came first. <<<
Kailana
12-02-09, 12:27 AM
Just to clarify, just because testes are undescended does not mean they are in the abdomen, it is quite possible to have inguenial testes and if a doctor assumed early in life they would drop on thier own, nothing could of been done.
A worry here as frualien_maria mentioned if they were undescended until 9, chances are not very good that your fertile. Might want to get that checked out soon, and any doctor can order that and wouldn't bat an eye at anyone asking about the health of any swimmers especially of a soon to be married couple.
Now Hypopituitarism isnt really all that different, pituitary, thyroid, pancrease and adrenals all send out signals to your gonads to function properly, basically if there is an error someone on any one of them, something wrong will happen.
Hypo<--underproducing
Hyper<-overproducing, <---have to be carefull when you seee Hyper in anything because often when one or more hormones are being overproduced others are being underproduced, ie suppressed.
and again basically with your brothers history and your build it could be a similar issue. and a good place to start at with questions for your doctor, although since your getting married ask about getting a sperm count cause you never really know and if nothing else if thier is an extremely low viable sperm count present, ie less then 3-5% is generally considered sterile, then there is always IVF available if biological children are of interest and there is always a chance though smaller when no viable sperm or found that imature sperm cells that might work.
sorry I would need to read up again on IVF and imature cells to see where they get those from.
>>> You mean your gonads stayed in your abdomen until 9 and no one thought this was unusual? If the gonads of a boy do not descend within a week after birth, the doctors want to know, so they can fix the problem.... and its a serious problem.
Just to clarify, just because testes are undescended does not mean they are in the abdomen, it is quite possible to have inguenial testes and if a doctor assumed early in life they would drop on thier own, nothing could of been done.
Yay me. I honestly didn't know all that. Talk about a drop of the cluehammer...
Well they've always been sort of "in between". I'm not sure I can explain exactly. They can "retract", for example when cold makes my scrotum tight, that pushes them back and up. Then they stay deep on the sides and above the penis, not noticeable without pressing, and until I push them down again. In my memories they used to do that all the time in early childhood, and much less often as I grew up (it still happens now though), that's what I mean by descending. I think my mom would have noticed anything of the sort in earlier years and have it checked though, and the doctors' comments I have on the documents I collected say "RAS" (nothing to report). Now I'm seriously puzzled. I don't know what's normal or just confusion on my part, and what's significant.
A worry here as frualien_maria mentioned if they were undescended until 9, chances are not very good that your fertile. Might want to get that checked out soon, and any doctor can order that and wouldn't bat an eye at anyone asking about the health of any swimmers especially of a soon to be married couple.
Definitely doing that ASAP. I knew intersex conditions usually come with sterility, but still :( I'll look up about inguenial testes, thanks for bringing that up.
OK apparently that's called "retractile or hypermobile testes" ( http://www.merck.com/mmhe/sec23/ch267/ch267h.html ), and it's not supposed to affect fertility, whew. Thanks again Kailana ! Putting names on every little thing, at last I feel like I'm making progress...
fraulein_Maria
12-02-09, 05:35 PM
[QUOTE=M-A;21906]Yay me. I honestly didn't know all that. Talk about a drop of the cluehammer...
Originally Posted by Kailana View Post
Just to clarify, just because testes are undescended does not mean they are in the abdomen, it is quite possible to have inguenial testes and if a doctor assumed early in life they would drop on thier own, nothing could of been done.
>>> half right. testes can go into the inguinal canal and get stuck there.... but they will COOK THERE TOO, so no doctor is going to leave them in there more than 6 months after birth..... UNLESS they already know your sterile and therefore, there is "no rush". If they think you might be fertile, they will try to make them descend either chemically (a T shot) or physically by first surgically widening the canal, then pushing them down through it.
Inguinal hernias, as there called, do NOT go untreated... unless you live in a 3rd world country. <<<
>>> half right. testes can go into the inguinal canal and get stuck there.... but they will COOK THERE TOO, so no doctor is going to leave them in there more than 6 months after birth..... UNLESS they already know your sterile and therefore, there is "no rush". If they think you might be fertile, they will try to make them descend either chemically (a T shot) or physically by first surgically widening the canal, then pushing them down through it.
Inguinal hernias, as there called, do NOT go untreated... unless you live in a 3rd world country. <<<
They left my one there. I still remember going to checkups when I was little (~5) and the dr feeling all around there manipulating it. I don't remember them giving me anything ( maybe they hid stuff as vaccinations ? ), but it did come down mostly by the time I was 7ish. It doesn't sit in the scrotum like the other one, but it's close enough I can push it down into there. Sometimes it will still pop way back up in there too though. Part of what my current doctor suspects some of my pain is that I may have a intermittent hernia where the canal is still open on that side.
fraulein_Maria
12-03-09, 03:21 PM
[QUOTE=Aseras;21912]They left my one there.
>>> i'm sure they did. they knew you weren't fertile anyway, so why bother? <<
how would they know that at 5 yrs old?
fraulein_Maria
12-03-09, 05:27 PM
[QUOTE=Aseras;21927]how would they know that at 5 yrs old?
>>> they can know it as soon as genetic tests are performed.
if your 47XXY (klinefelters) your going to be sterile.
if your AIS (any grade) your going to be sterile.
if your 45XO (turners) your going to be sterile.
there are many other IS conditions, but to my knowlege, only CAH's are fertile. only XY CAH's are (with treatment) fertile males. Only XX CAH's are fertile as female. Swyer's gals (another type of XY female) can carry a child, but not conceive one.
so testing a newborns chromosomes is the first step to determining if they will be fertile. and i do mean newborn...immediately after birth. we can know THAT quickly.
spacegirl
12-03-09, 06:13 PM
Actually, 47xxy results in reduced fertility but not necessarily complete sterility. And there have been a handful of cases of pais individuals (who were quite determined to be men) up to a grade 2 or 3 who have been found with immature sperm in their testes, and with medical treatment were able to mature their sperm for use in ivf.
fraulein_Maria
12-03-09, 06:28 PM
[QUOTE=spacegirl;21934]Actually, 47xxy results in reduced fertility but not necessarily complete sterility.
>>> i've been told by a bunch of 47XXy guys (you can look up the conversation here @<hidden> :) that the doctors like to tell them that... but that its not so. that there is one procedure they try but that it has never worked yet. considering how often doctors have lied to us and are still lying, i would go with what the fella's had to say. <<<
And there have been a handful of cases of pais individuals (who were quite determined to be men) up to a grade 2 or 3 who have been found with immature sperm in their testes, and with medical treatment were able to mature their sperm for use in ivf.
>>> actually, i know a handful of PAIS women who are telling each other and the compleates that they know, to freeze there testis for exactly this reason. As far as i know however, they are only doing this experimentally in England (Miriam, please chime in). experimental being the key word. Until i hear about the first AIS baby, i'm not gonna give false hope.
spacegirl
12-03-09, 08:28 PM
fM;
47xxy-
http://humrep.oxfordjournals.org/cgi/content/full/16/9/1909
pais-
http://www.medhelp.org/www/ais/23_PAIS.HTM
(go to near bottom of page where it says "Contact 2 (male fertility)")
It's all purely academic to me, not the slightest chance of spermatogenesis when no Y's can be found.
galens47
12-03-09, 09:06 PM
Welcome to the board!
Cheers,
Galens47
Swyer's gals (another type of XY female) can carry a child, but not conceive one.
so testing a newborns chromosomes is the first step to determining if they will be fertile. and i do mean newborn...immediately after birth. we can know THAT quickly.
That's me. And if I am ever in the position to carry a child, the first thing they are going to do to that child (even if i have to threaten somone's life) is a chromosome testing for EVERYTHING humanly possible.
What about 45X/46XY mosaics ? Males with unambiguous gentialia should only have reduced fertility, right ?
fraulein_Maria
12-04-09, 07:42 PM
chromosome testing for EVERYTHING humanly possible.
>>> considering how many problems have a proven chromosomal origin, that would be excruciatingly expensive, and not covered by insurance unless your ob/gyn thinks its necessary.
If your baby is born healthy, why look for trouble when there are so few of us? CAH's and klinfelter's make up the majority of IS people by an enormously large number..... we CAH's run in families and certain ethnicities (as do AIS'ers) and XXY's are spontaneous mutations.... we're still not sure how it happens, but its not fatal, and does not seem to present problems until the child gets into school....even so there's not much that can be done.
Enjoy you baby :) you'll know something is wrong IF and when it happens, so it doesn't pay to worry about it ahead of time.
fraulein_Maria
12-04-09, 07:51 PM
[QUOTE=M-A;21953]What about 45X/46XY mosaics ? Males with unambiguous gentialia should only have reduced fertility, right ?
>>> i honestly don't know. I don't know alot on the subject of Mosaicism except that most (3/4s) are raised girls. I would assume this is because of the surgeons dictum of "its easier to dig a hole, than build a pole".
as for degree of ambiguity...
it matters less the size and shape of penis; than the presense of testis, and the number of viable sperm. if your semen is bright white, chances are your sperm count is good. clear as saliva? better get it checked.
As far as I know, most true hermaphrodites are assigned male. Something like 80%. However most are not fertile as males. There are very few reports of natural conception, most have to resort to sperm extraction and ivf. It really depend on the internals. All true hermaphrodites are capable of ovulation. Whether or nit they can conceive us dependendent in how well the testicular portion impeded the mullerian tract. Whether they have a uterus or not or whether the wolffian duct developed sufficently. Usually it's a mess and unless surgery is done to resection the gonads before puberty fertilty is greatly impeded. Estrogen is stronger than testosterone by an order of magnitude. It halts any sperm production. Additionally the testicular cells cannot handle suppression. They will atrophy. The ovarian portion can simply shut down and be restartwd again much easier. These are things I've had to deal with,am dealing with right now.
confusedindian
12-04-09, 10:55 PM
As far as I know, most true hermaphrodites are assigned male. Something like 80%. However most are not fertile as males. There are very few reports of natural conception, most have to resort to sperm extraction and ivf. It really depend on the internals. All true hermaphrodites are capable of ovulation. Whether or nit they can conceive us dependendent in how well the testicular portion impeded the mullerian tract. Whether they have a uterus or not or whether the wolffian duct developed sufficently. Usually it's a mess and unless surgery is done to resection the gonads before puberty fertilty is greatly impeded. Estrogen is stronger than testosterone by an order of magnitude. It halts any sperm production. Additionally the testicular cells cannot handle suppression. They will atrophy. The ovarian portion can simply shut down and be restartwd again much easier. These are things I've had to deal with,am dealing with right now.
Aseras,
I am facing a similar situation here. I have a not so certain diagnosis of PAIS but I am doubtful if I might have mosaicism instead. i have an abdominal gonad that might add to my confusion.
Now I am trying to take testosterone to get secondary male characters. But I seem not to get the estrogen effects away. Though I am taking nolvadex, I cant seem to get the estrogens away. They are indeed strong. I have had mastectomy but still I am now getting fat deposition in one of breasts only(asymmetrical removal of tissues I assume). I am not really sure now whether to stop T or not. But I have had a remarkable increase in sperm color and density due to testosterone.
thanks,
Vishnu
fraulein_Maria
12-05-09, 11:30 AM
[QUOTE=Aseras;21960]As far as I know, most true hermaphrodites are assigned male. Something like 80%.
>>> aseras, he said he was a mosaic, not a "true hermaphrodite" they are not the same thing. a "true hermaphrodite" is someone with either a pair of ovo-testis, or an ovary on one side, and a testi on the other. they are usually raised male because they usually present unambiguously so at birth. its my understanding that the same is not true for mosaics. <<<
fraulein_Maria
12-05-09, 11:50 AM
[QUOTE=confusedindian;21961]
But I have had a remarkable increase in sperm color and density due to testosterone.
>>> then it is extremely unlikely you have PAIS. "true hermaphrodism" is a possibility, but rarer than Mosaicism.
it does make a difference which it is though. have your sperm tested for viability. if they are viable, you may wish (i could be wrong) to maximize your chances of being a father by having the ovarian tissue removed. the converse is also true. if you were ovulating before you started the T (which unlike sperm, are almost always viable) you will again as soon as you stop and may wish (i could be wrong) to maximize your chances of being a mother by removing your testicular tissue.
this all assumes that becoming a parent with your own genetic material is important..... it may not be. In which case, what matters most is your health. Use the hormone mix that makes you feel, MOST LIKE YOURSELF. DON'T have any surgery without a few more than just a second opinion. Doctors notoriously LIE to us, so please be careful.
good luck :)
confusedindian
12-05-09, 01:04 PM
[QUOTE=confusedindian;21961]
But I have had a remarkable increase in sperm color and density due to testosterone.
>>> then it is extremely unlikely you have PAIS. "true hermaphrodism" is a possibility, but rarer than Mosaicism.
it does make a difference which it is though. have your sperm tested for viability. if they are viable, you may wish (i could be wrong) to maximize your chances of being a father by having the ovarian tissue removed. the converse is also true. if you were ovulating before you started the T (which unlike sperm, are almost always viable) you will again as soon as you stop and may wish (i could be wrong) to maximize your chances of being a mother by removing your testicular tissue.
this all assumes that becoming a parent with your own genetic material is important..... it may not be. In which case, what matters most is your health. Use the hormone mix that makes you feel, MOST LIKE YOURSELF. DON'T have any surgery without a few more than just a second opinion. Doctors notoriously LIE to us, so please be careful.
good luck :)
I have unambiguous Male Genitals (one testis in scortum and one gonad in abdomen). I am not sure how I can ovulate though. i have slightly elevated estrogen levels for a man. But the value is less than the reference range for women. So i guess the abdominal gonad wont be an working ovary. Even if it does work, it is not producing much.
Can PAIS people never get better sperm quality by taking T? I was thinking my testis are reacting better with more T and doing its job better. One more reason for me to think I have PAIS is that i have high T, but still i have very poor secondary male characters in my body. How do i determine if I am having true hermaphorditism/mosaicism. What tests will have to be done?
I guess the doctors I have met so far are ignorant. You got to know stuff to be notorious :shades_sm
fraulein_Maria
12-05-09, 01:55 PM
[QUOTE=confusedindian;21979]
Can PAIS people never get better sperm quality by taking T?
>>> so sorry, but no. they often make MORE T than a "man". but the bodies can't use it. there gonads are almost always removed shortly after puberty because cancer of the testis (for them) is almost inevitable, and doubtful that you would not have been told. <<<
I was thinking my testis are reacting better with more T and doing its job better.
>>> but poor PAIS'ers do not make sperm.... not a single one. They are all strerile. <<<
How do i determine if I am having true hermaphorditism/mosaicism. What tests will have to be done?
>>> rather than move into an area in which i could only guess, i'll defer to the knowlege of others. <<<
I guess the doctors I have met so far are ignorant. You got to know stuff to be notorious :shades_sm
>>> here in the states aswell. you don't have to be bright to get into medical school.... they could be the draft-dodging son of a rich man ;) <<<
Kailana
12-05-09, 03:11 PM
ok, in order to find if you are mosaic,
you need several samples, blood karyotype, bucceal and in a large number of cells tested, not the simple routine karyotype that only tests 20 cells. ie best to have seveal hundred tested. It will provide a more accurate result.
spend alot more money, and ge a PCR. Which will test the stability of the Y chromosome, they will take a sample and replicate it in the lab maunfacturing many cells to be tested and then check if there is any alterations present. it is spendy but a better way to go to get answers.
next lol True-hermaphroditism, first if nothing is noticed with the other tests then it pretty much would call for Gonadal evaluation ie Gonadal Biopsy of both gonads, very painfull. But it would indeed tell you exactly what each gonad is. There may be differences that can be seen through cheaper methods, often though there really is not a big rush to remove an internal testes if it appears normal. When it appears dysgenetic is when they are yanked in most cases though at some point some doctor will eventually reccommend the removal of the internal gonad. Unless it is indeed an ovary and a female assignment is made. Raised male the ovary won't hurt you though many doctors would still remove it.
They can also biopsy other organs to check for chimerism, tissue samples from multiple places would provide for even a more accurate evaluation.
Now I disagree a bit with Fraulien_Maria with the info on PAIS, low level PAIS may be fertile, but extended use of T is going to wipe out your testicular function, this happens alot with Klinefelters affected Men. Plus taking more or larger doses of T, will only cause you to aromatize to oestrogen, which just means your giving yourself more estrogen then you think and your not gettting the desired effect you want.
seriously I would really talk to your doctor and have them explain to you how conversion of testosterone to oestrogen happens and if indeed a low level PAIS you might want to find a better balance. Way to many men, take Tm, and don't understand the full effect of what it will do to you in the long run.
Most think More T means more manly appearing, and the real affects are far from what they expect.
Talk to your doctor or endocrinologist and serious ask questions and seriously get a sperm count and see whats really there so you know. And if there are viable sperm, you might want to think about freezing some, just incase your teste does shut down later.
I hope my suggestions help. Not sure of your age again, but sometimes it is better when your younger to know whats really going on. If you wait too long then your chances of fathering children are more then likely to decrease with extended Testosterone use.
oh and 1% of true-hermaphrodites are infact 45XO/46XY.
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