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DES sons...(Diethylstilbestrol Hormone) were you exposed?

Started by Opaque, September 20, 2010, 01:39:11 AM

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mnrjpf99

I am also a DES son. I have wondered just how far the effects of DES go?
I have had and have spermatocele's, vericoceles, as well as a small meatus (opening of the penis) and fathered 4 failed pregnancies more than likely to poor sperm quality.
Body wise, I am built like a female. My bone structure, is that of a small boned female. I am 5' 6" tall @ 135lbs. I have low muscle mass as well. My women's clothing size is a 2-4. My shoe size is 6 to 6.5 W (men's) depending on the brand. My hands are 3\4 of an inch smaller than the average male. I have a more feminine digit ratio as well. My ring size is 8.5.
My mentality, is that of a female as well. Iam into and do most of the things women do. I also have always had good motherhood instinct. I mother hen my friends kids really bad. Lol Not in a bad way though. If one of her kids is in the grocery cart at the store, I can't be any further than 3 ft. from it. Lol
Pretty much the only things that are physically male about me is my sexual gender and effects of male puberty.
The only things I have in common with men, is my sexuality (only interested in women) and I am mechanically inclined, which can be a female thing as well.
So basically I feel that I am a female physically and mentally, with male genitals and effects of male puberty.
So is it possible that I am a result of what I would call "incomplete male fetal development syndrome" aka IMFDS? Lol
Is anyone else on here the same way? Do any of you have the smaller than normal body size and such?
There is a HUGE difference between acceptance and just being tolerated. Being who you really are and being accepted is awesome, but merely being tolerated for who you are, would be more hell than it's worth. No matter what. Never change who you are for ANYONE because they are not worth it...
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Eva Marie

Quote from: Paige on September 08, 2015, 10:42:52 PM
Hi Hugh,  that probably makes it more doubtful my mother was given it.  She had no trouble as far as I know, 4 kids in 5 years.  Maybe I should ask her again, but it sounds unlikely.

Thanks for all the info,
Paige :)

Hi Paige-

I was born in 1962 and my mom had a dreadful time carrying me to term - it seems like she would have been an ideal candidate for DES. She is still alive so I was able to ask her about it and she is very certain that she took nothing but some sort of vitamin. She says that the vitamin was over the counter. I don't know if DES was mixed into over the counter vitamins but I kind of doubt it.

So i'm in a similar boat as you - I seem to have some of the classic DES symptoms with no clear source of DES exposure.

I was born in the early 60's and during that time there was lots of chemicals around that might mimic what DES does so who knows what I might have been exposed to.

At the end of the day I guess that it doesn't really matter but it would be nice to know.
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Paige

Quote from: Eva Marie on October 30, 2015, 09:51:56 AM
At the end of the day I guess that it doesn't really matter but it would be nice to know.

Hi Eva Marie,

Yes I agree.  It really doesn't matter because we are who we are and there's nothing wrong with that.   

Take care,
Paige :)
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Lady Smith

Quote from: Paige on October 31, 2015, 03:25:47 PM
Hi Eva Marie,

Yes I agree.  It really doesn't matter because we are who we are and there's nothing wrong with that.   

Take care,
Paige :)

True enough.  I spent some months feeling very angry about it all, but that wasn't going to change anything so it's best to just get on with my life.
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mnrjpf99

#204
Here are my symptoms
Born between 1940 and 1971 (US) or 1980 (elsewhere):  Yes - 1962

Undescended testicles: I believe so, but it finally descended on it's own not long after birth.

Micropenis: No but I have a small pee opening.

Hypospadias:  No

Carry angle: Feminine

Digit ratio: Feminine

Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development): Yes I had one large one removed about 6 years ago and will need to have another large one removed again soon. I also have varicocele's.

Vestigial female organs or organ remnants:  Not that i'm aware of; however for some unknown reason, I periodically have "symptoms of ovulation". I have had an ultrasound, Ct scan and they have no idea why.

Intersexed genitals similar to grade 3 PAIS: No

Other genital abnormalities: Yes. I have fathered at least 4 miscarriages with 3 different women.

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones: Yes. I have a very small bone structure; that of a small boned female. My elbow breadth is only 2.25 inches. Women's clothes seem to fit me better. Clothing size 4; shoe size 6.5 men's; ring size 8.5; head circumference 22 inches. My hands are 3/4 of an inch shorter than a man's hand.  As far as my facial features? I hate mirrors, cuz who I see in the mirror doesn't match who I am. Lol But my face is kind of in between I guess.

Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle: When I had a beard, it was not very thick. I have no chest hair. I had a little hair on my belly. I have gynecomastia. I have never had the ability to build upper arm strength. I was always "the weakling".

Very shy, socially passive behavior as a teenager: Yes

Difficulty forming friendships with boys; having a special affinity with girls: Yes

Being bullied a lot; having an inability to fight back:  Yes!

Having no interest in sports: I was never into sports of any kind. The only sport I love, is figure skating.

People tending to assume you're gay; lots of men being attracted to you:
I have had a few guys hit on me. I don't feel that I "act gay", but I know that people can see that I have feminine traits.

Identifying as a woman, or part of you identifying as a woman while part identifies as a man:
I identify myself to others as a male physically, only because I don't think I would be accepted as a woman physically at least. I think people know, that I am more feminine than masculine for sure.
I think some people may tolerate it, but not truly accept me being who I really am. The is a HUGE difference between tolerance and acceptance.
I have had over a dozen women say that "it's awesome to have you for a friend cuz you are like on of the girls" Lol
I feel like I am 2 separate people sometimes.

I always had good motherhood instincts. I find myself doing the "mother hen" thing a lot with other peoples kids.

Depression: Yes

ADHD: Yes!

Other seemingly non gender related psychological problems: Not really. I always do what the voices in my head say to do. Lol I am so kidding!
Ultimately I feel that I am a result of incomplete male fetal development.
There is a HUGE difference between acceptance and just being tolerated. Being who you really are and being accepted is awesome, but merely being tolerated for who you are, would be more hell than it's worth. No matter what. Never change who you are for ANYONE because they are not worth it...
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HughE

I've produced a more comprehensive version of the table of DES daily dosages, highlighting the critical periods for genital development and for development of the permanent structure of the brain. From that, hopefully it's easy to see why biologically male people who were exposed to that treatment ended up with male bodies but female brains. I've also added a column showing the daily dose at that point in relation to the maximum dose used in prostate cancer treatment (3mg per day), which is sufficient to totally suppress testosterone production in an adult man.

If that treatment schedule were to be followed to the letter, the cumulative dose over the course of a pregnancy would be 11,718 mg, roughly the same amount of artificial estrogen as is contained in half a million contraceptive pills!


Aside from its use in preventing miscarriages, another use for DES was to feminize cockerels, a process known as caponization (or in this advert, "lipellization"). The lifetime dose required to turn a cockerel into what is effectively a female bird is 15mg, 781 times less than the cumulative dose over a DES pregnancy in human beings! It's fairly obvious that there are likely to be long term consequences for the biologically male children who were exposed to that treatment, and that permanent feminization of the brain is a plausible outcome.
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BeverlyAnn

There's no way to know now since mom's gone and the doctor plus his records are long gone.  Mom was an RN and worked in the doctor's clinic (small town no hospital).  Dr. Dallas was big on prevention so DES is something he may have given in late 1948 when she was first pregnant.  I do show a lot of signs though.  Cryptorchidism at birth, life long small amount of gynecomastia and transgender.  Or maybe I just got "lucky" in the genetic lottery.
Always forgive your enemies; nothing annoys them so much. - Oscar Wilde



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HughE

I did an interview on the 12th April for Transition radio, the main topic of discussion being the link between DES exposure and MTF transsexuality. Also mentioned are progestins, a second type of synthetic hormone that has also been extensively used for miscarriage prevention, and which I suspect could be a cause of FTM transsexuality.

Here is my page on their website:

http://www.transitionradio.net/hugh_easton.html

and here is the interview itself on youtube:

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Michelle_P

I hadn't noticed this thread before.  Yup, I'm a DES son.  My mom actually told me about this about 10-11 years ago when she got a question on this as part of a very long term study on women's health she was enrolled in.  (She was an RN, and the school she graduated from has been running a long term study for many decades.)

She was on high doses of DES for miscarriages when she had me, and again for one of my brothers.  I had the undescended testicles problem, and delayed onset of puberty, kick-started at age 15 with what my dad called 'vitamin shots, so you'll grow up right'.  (Gee, thanks, Dad.)  Yes, probably testosterone.  I also had all the classic DES childhood problems, poor coordination for sports, getting bullied, etc.  The freshman year in high school with undescended testicles made for extra locker room hijinks. 

Nasty side effects from that stuff.

The thing is, for me knowing that DES might have been involved is almost a distraction.  Whether or not I blame that drug, I have the dysphoria, anxiety,and depression from trying to prevent as male and bury my real self for decades, and the course of treatment is unaffected by whether or not DES is to blame.

I'm working hard to get better.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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skerlin

I founded the DES Sons support network online 17 years ago, and we still provide support and outreach for others. I have personally been contacted by more than 1000 DES-exposed males and a significant number report gender-related issues or concerns. If you'd like to know more, you can contact me at skerlin2000 at yahoo dot com.
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HughE

In case anyone missed it, in May, Florida TV station broadcast a news segment about the link between DES and trassexuality:

http://www.wtsp.com/news/health/can-a-drug-make-you-transgender/215234337

I'm wondering if there's any way of building on that success and getting wider coverage for the story. Does anyone here have any ideas?

An interview has just been published with psychologist Dr June Reinisch, who is one of the world's leading experts on the effects of being prenatally exposed to synthetic hormones on people's psychology and behaviour later in life.

http://www.germlineexposures.org/reinisch-qa.html

There are some real gems in it which go a long way towards explaining how millions of people ended up being exposed to high doses of DES, even though it was only newly developed and largely untested.
QuoteThere were physicians, particularly ob/gyns, who wanted to do whatever they could do to help women to either get pregnant or stay pregnant. Their treatments were experimental, that is not based on research data but on their clinical understanding of the medications and how they might help their pregnant women who were having difficulty having children. The physicians in general aren't scientists. They're artists. They're the artists of medicine...The doctors took ideas from the drug company detail men, or they came up with their own ideas, but it was not evidence-based – just based upon their own experience and sense of what worked for them.
She also explains why, as an adult, it's often difficult or impossible to establish whether you've been prenatally exposed to pharmaceutical hormones. Medical records very often no longer exist, and even the mothers given the hormones often have no recollection of it afterwards.
QuoteWhen I interviewed these women after the pregnancy, they didn't know what they took—sometimes they didn't remember that they took anything. But I had read their records and I knew what the doctor gave them. I would say, for example, "Don't you remember taking little red pills every day?" "No." They were so focused on being pregnant, maintaining their pregnancy, having the baby, that they had forgotten all about it, including even when they received regular hormone injections. My studies included women who had been taking injections twice a week all the way through their pregnancy. Often they too had no remembrance of it whatsoever. Often the women weren't even told the names of the drugs. It's hard to believe that but it's absolutely true. Or if they were, they did not register.

One other thing that's happened recently is thart I've obtained a copy of a paper in which the testosterone levels of Rhesus monkeys were measured at several points during their prenatal development. The reason for falling back on research on Rhesus monkeys, is that I've gained a strong impression that no one's ever measured the equivalent in human beings. Several times I've seen a chart in which a peak of testosterone occurs at week 17 and then it falls to near zero levels for the remainder of the pregnancy, e.g.

However I have a strong suspicion that researchers have just been requoting the same original decades old source that is not based on actual measurements, but just someone's belief that testosterone during the second half of prenatal development isn't important. There's plenty of first trimester material to work with in the form of aborted and miscarried fetuses, but how do you measure fetal testosterone late in the pregnancy without endangering the baby? You can't, and that's why I have a strong suspicion that no one has ever actually measured it in human beings.

Anyway, the results of the Rhesus monkey research are summarised in this figure taken from the paper:


Samples from both male and female fetuses were collected at four points during their fetal development. The first sample (at about day 55) is probably when the monkeys are at a similar point in development to human fetuses around week 17 after conception. You can see that, in males, although testosterone does fall following the peak, it doesn't drop to zero, and it rises again later in gestation. Throughout gestation, male testosterone levels are several times at least higher than in females (although the gap narrows near the due date). It's this difference in testosterone levels that determines whether you get a male or female brain, and I guess the reason females also produce some testosterone is because they need the ability to carry out some male-like behaviours too (just less than in males), so their brains also undergo some masculinisation during normal prenatal development.

Rhesus monkeys are one of the closest animal models to human beings, and I'm sure that the equivalent measurements in humans would show something fairly similar. Now imagine what happens when you throw DES into the mix, at doses more than 10x higher than what will induce complete suppression of testosterone in an adult man (which is what happened during the second half of the pregnancy with DES, when it was administered under the standard dosing schedule for miscarriage prevention that was published annually in the PDR). In a male fetus, instead of being produced at several times the female level throughout the second half of the pregnancy, its production would have dropped to near zero for most or all of that time. As a result, you'd expect to end up with people with highly feminine brains (perhaps even more feminine than an ordinary woman's brain). That does appear to be exactly what's happened too!
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Sno

Was I exposed? I'm not sure - my birth is closer to the tail end of the US precription range, but the NHS does what the NHS wants.

I do have a grade 3 varicocele, and an epididymal cyst - diagnosed at 19. My mother was an RN at a teaching hospital. I was born somewhere around a month prem - her being an RN I have no reason to 'doubt the dates ;)

Was my mother exposed - quite possibly. This is where family history gets interesting. My grandmother had a uterine deformity, and previous miscarriage(s) before my mum. Mum was born at the very early age of the age range for large scale exposure of the population. My grandmother also worked in the manufacture of ammunition during the 2nd war, and will have had heavy exposure to guanidine nitrate and related compounds - many of which do not have published endocrine impacts.

I have female digit ratios, and am able to double cross my legs (mid 40's). My hips are larger than my rib cage, and the same width as my shoulders (external). My feet are (in properly lasted shoes) a 9 1/2, small for my 6' 4" stature. Yes to gynaecomastia, and female shaped shorts are a much better fit. I have non-typical fat deposition, and have great difficulty losing weight.

As a family 'joke' we place our oddities the down to my mothers defective genes. The fact that she had a radical hysto in her mid 30's, and now is nearly crippled with osteoporosis of her back, all point to some medical oddities in our collective past... If she will ever tell me, I am not sure.


Sno.
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RobynD

Always will be an unknown for me but i suspect i was. She was at an advanced age for the day and had miscarriages. The only I wish the medical records from the 1960s were stored some place. Still, i am reading up on it more.

Symptom wise i am a mixed bag: I have the female digit ratio. Never had issues with coordination or body development. and good at athletics. Hips are well developed. Some gynecomastia before hormones.  Was never that shy or bullied. Genitals on the smaller side but not micro. Difficult forming friendships with guys for sure. Guys hitting on me - absolutely my whole life. Depression, GD and light ADHD.

Wow - interesting to me.



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HughE

If anyone thinks they might have been prenatally exposed to DES and is looking for a way of confirming exposure, if you have any teeth extracted, I'd suggest getting them off the dentist and storing them somewhere so they can later be analysed for drug traces in the tooth enamel. I don't know for sure whether DES traces can be retrieved from adult teeth, but there's good reason for thinking it might be possible. Most of your tooth enamel forms between about 4 months after conception and birth, which covers nearly all the time period over which DES was typically administered. It becomes completely sealed off from the outside world within a year after birth, and after that remains essentially unaltered (apart from tooth decay) for the remainder of the tooth's life. So there's good reason for thinking that traces of DES (or progestins) might remain within it, if these drugs were administered during the pregnancy.
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Lily Rose

  does anyone know the the year this was stopped?
i found one website that says 1978 and the rest including c.d.c. say 1971.

  i think i remember my mother saying something about her taking something. when pregnant with either me or my brother. she later found out it was discovered to be possibly bad for a fetus and had regrets from what she heard.
"I love you!"
– Lily Anne

"You must unlearn what you have learned."
– Yoda

"The road to success is always under construction."
– Lily Tomlin

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– Victor Hugo :icon_headfones:
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HughE

Quote from: 1972scarednalone on November 21, 2016, 01:58:47 PM
  does anyone know the the year this was stopped?
i found one website that says 1978 and the rest including c.d.c. say 1971.
The FDA never actually banned DES, instead all they did in 1971 was withdraw their approval of it as a treatment for preventing miscarriages. Many doctors within the US continued to prescribe it "off label" for several years after that. Outside the US, the FDA guidance didn't apply, and most European countries continued using it throughout the 1970s (I think it remained an officially sanctioned treatment in Spain until 1983). Apparently it continued to be used right up until the 1990s in some parts of the Third World.

If you were born in North America, Europe or Australasia after 1980 then you're unlikely to have been exposed. Prior to that, you could have been, particularly if there were risk factors such as a mother who was very young or aged over 40; a prior history of miscarriage; or medical problems arising during the pregnancy leading doctors to believe there was a risk of miscarriage.

DES isn't the only manmade hormone to be used during pregnancy. There's a class of hormones called progestins, which are also derivatives of a female hormone (in this case progesterone), and have feminizing effects if they're administered to adult men. There's good reason for thinking that these drugs too could be a cause of MTF transsexuality. Unlike DES, they were never withdrawn, and some are still in use even now.
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Joelene9

  I have found 2 1980's TV programs concerning DES, although they are weighted towards the DES daughters physical problems. One was from a January, 1980 telecast of Lou Grant (Edward Asner) sitcom about a newspaper room. In this episode, reporter "Billie" (Linda Kelsey) investigates a lawsuit brought on by a DES daughter and found out that she is one as well. I saw this program shortly after it was mentioned in the newspaper. Another is a 60 Minutes Australia from 1983 similar to the one I saw earlier on one of similar TV news magazines here in the US.
  Both of these programs showed the same info such as the magazine adverts for DES, destruction of patient records by the doctors themselves, a 1953 paper that found that it was useless preventing miscarriages, and the same pessimism that any study could be done to account of any real correlation of disorders by DES exposures to the embryo or fetus than was already known. The 60 Minutes piece shows the PSA clip that Linda Kelsey made about DES put out here in the US at the intro and past the middle of the report. The 60 Minutes piece only mentioned the DES sons only briefly.
  I did try to start a conversation about this to my mom around 1983 but she would not answer me. I thought it was because of her first diagnoses and treatment of cervical cancer. She died of that after a relapse 8 years later.
  I noticed that the NIH and the CDC had taken down any mention of any gender dysphoria and prostate cancer correlations from their websites more than 3 years ago. We will never know.

Lou Grant episode "Inheritance": https://youtu.be/VHH5f2i1Sgo?list=PL3D4F4A11812DAE00

60 minutes Australia report: https://youtu.be/PNFnOjuoGLw?list=PL3D4F4A11812DAE00

Joelene
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josie76

I asked my mom when I came out to her. She said the only thing she took was RX prenatal vitamins. I've read where DES was added by some manufacturers to vitamins. Still a mystery.

The local hospital I was born at destroys all medical records over 10 years old. Can you say wtf? I may never know anything about my medical situation at birth.

My bone structure is feminine. The bone shapes are female, knee and elbow angles sacrum and Sacrial angle to the ilium hip bones, ect. My pelvis is wider than my chest. Best answer I have gotten from a doctor is that the bone shapes are formed in utero. The final pelvis is based on the growth of the three hip bones before fusing however the sacrum and thereby the opening of the greater sciatic notch is determined before birth.
I had a seemingly normal male puberty except hair growth was late. My chest volume was small like the girls until nearly 17. Up until then with my wide pelvis I looked a lot like the girls without big bulky clothes on. My hip placement did not get to widen beyond my pevis width hardly at all. Not a definate male trait but I suspect a little estrogen in my teens would have made a much more significant hip. Although I didn't realize it exactly back then, I had a feminine shaped pubic hair area until around 20 when my chest started growing some hair. My back only ever grew a scattering of hairs. Around 30 my chest hair went from sparse to much more including belly hair down to the pubic area. I also then grew hair in the middle lower back that I hadn't had before.
I do not have a "normal" perineal raphe. It is instead like a slight depressed groove I suppose you would call it. The skin has like a scar tissue feel. This extends from my anus to my scrotum. The lower part of my scrotum just has a wide dark area running halfway up then it forms a raphe line. The raphe near the end of the penis splits then comes back together just before the head.
04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!

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Michelle_P

Josie, your results sound fairly similar to mine.

My exposure was definitely through prescription prenatal vitamins. The DES content is what made them prescription-only.  As with many folks, the old prescription bottles sat on the medicine cabinet shelf for a few decades past expiration, so I saw that brown bottle pretty much every day in my youth.  Mom took them during my pregnancy and one of my brothers.  She talked to me about this a few years before she passed away, when she was reminded of the DES exposure by an annual questionnaire she received as part of a very long term study program.

My brother had a surgery at around 6 months to correct a 'urinary problem' at around 6 months.  I didn't have any surgeries that I can see, but I did have undescended testicles, as well as almost no body hair and some feminine skeletal traits.  The issue with undescended testicles was corrected in my teens as part of my 'cure' with testosterone treatments.

My brother was even more introverted and solitude-seeking than I was.  He disappeared several years ago, and I often wonder if there's a "Joan P" out there somewhere now.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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josie76

Sometimes I think I'm just looking for things to give myself some better feeling of validation.

I've looked into things like skull shape. To me I seem to have a mostly feminine skull. I do have a masculinized chin length, mild brow bossing, Roman shaped nose, ect. However I also have the obtuse angled jaw bone with tapering to the center. In other words not anywhere near square jawed. Overall smaller than most guys heads.

My mom says I didn't have any surgeries except the foreskin removal. My guess is my perenium raphe area was just not fully formed when I was born so it has a scar like feel to it. I'm also pretty sure that the area on my penis where the raphe line splits my urethra is open to the back side of the skin there.

I guess I'm just a freak of nature. I've always felt like a freak, now I am getting used to being ok with it. ;)

My older brother may also have been exposed the same. He has some of the similar skeletal traits like the wider pelvis than chest but is also several inches taller than me. His bone size is thicker than mine. Interestingly he is gay. We have talked just a bit about it, he has no female feelings/instincts. He was quite surprised and confused when I confessed the things I feel. He does not understand the female wants in my head.
While I'm 5-11 I have small wrists and thinner bones. One of the things the CT scan I had a while back has shown is even my hip sockets are on the very small range for a man and within the "normal" female diameter. My hip sockets are smaller than my sciatic notch width is.
04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!

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