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Being Born With a Disorder of Sexual Development (DSD) in America.

Note Before Reading

This is an honest and factual blog about a medical condition dealing with genitalia. If you are squeamish or easily disturbed, you really should read another article. I talk about surgeries in terms you may find disturbing.

I Was Born with Both a Penis and a Vagina

Even though I was born intersex, you could say I was born sans-gender if that helps. I didn't know until I was almost 50 years old that I was born with a vagina. If you stick with me, I will explain the medical side of things as well as how my parents' denial of my condition made my life way more difficult than it needed to be.

So how do you get to fifty before finding out that you were born with a vagina? That's a damn good question. The day I was born my parents decided that I would be a boy, and no one would ever speak of it ever—no matter what. I don't think my parents were in agreement with each other about what sex I should be because they were divorced a month after I was born. I may not be the reason they got divorced, but I sure didn't bring them any closer together.

My mother raised me, and whenever I asked about my condition she simply said I was born with a hole and they needed to close it up. When I asked my father he would not speak of it, not even enough to admit that I had surgery the day I was born.

My mother's vague description of my situation made it easy to ignore the actual facts. I have memories of surgeries when I was a child and all I was told was that they were trying to get my urethra to reach the bottom of the head of my penis so I could pee out of one hole and not several like I was doing.

Severe Hypospadias With Micropenis

The reality of the situation was far more horrifying, embarrassing, and mind-bending than I ever thought possible. I was born with severe hypospadias with micropenis.

Ambiguous genitalia is a birth defect in which the outer genitals do not have the typical appearance of either a boy or a girl.

Ambiguous genitalia may be a result of a disorder of sexual development (DSD), previously called intersex conditions. The ability to diagnose these conditions has improved greatly in recent years, due to advances in molecular genetics. Prompt, accurate diagnosis and counseling about therapeutic options should be available to parents soon after the baby's birth.

Gender Reassignment

It used to be thought that early gender assignment was vital to help social and psychological development. Recent research has challenged this thinking, as gender identity development probably begins in uteri, so reconstructive surgery may now be deferred until psychological and social implications can be considered.

Evidence about long-term outcomes for people with DSD who undergo gender assignment and reconstructive surgery is still lacking. This has particular implications in the situation where parents are demanding early reassignment surgery for a child with DSD.

Differentiation of External Genitalia

The external genitalia of males and females are identical in the first seven weeks of gestation:

  • In males, from seven weeks, active differentiation towards the male phenotype occurs moderated by testosterone and its conversion to dihydrotestosterone (DHT) by 5-alpha reductase (present in the cells of external genitalia and urogenital sinus). Genital tubercle becomes glans. Fusion of urethral folds and groove forms the shaft of the penis. Labioscrotal swellings fuse and enlarge to become scrotum.
  • In the female, genital tubercle becomes the clitoris, labioscrotal swellings the labia majora

I don't mean to throw a bunch of science at you but when I tell people about my situation they are filled with doubt.

One more set of numbers to throw at you and then I will explain how I found out that I was born with both a penis and a vagina.

  • Hypospadias (urethral opening in perineum or along penile shaft) happens in 1 in 2,000 births.
  • Hypospadias (urethral opening between corona and tip of glans penis) happens in 1 in 770 births.

You see, I am not that unique. Even though I had one of the more rare types of hypospadias, it is a growing problem here in the US and around the world.

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Read More From Patientslounge

Hypospadias occurs in approximately 1 in every 250 male births in the United States. The incidence doubled from 1970 to 1993. Although some have suggested that this doubling actually reflects increased reporting of minor grades of hypospadias, increases in severe hypospadias have also been noted. Increasing sensitivity of surveillance systems alone cannot explain this twofold increase. However, some reports have linked the increased rate of hypospadias in boys born prematurely and small for gestational age and boys with low birth weight.

International

In several countries, the incidence of hypospadias may be rising. In general, the frequency seems rather constant, at 0.26 per 1000 live births in Mexico and Scandinavia and 2.11 per 1000 live births in Hungary.

Several situations fall under the Intersex umbrella.

Several situations fall under the Intersex umbrella.

How Common Is Intersex?

To answer this question in an uncontroversial way, you’d have to first get everyone to agree on what counts as intersex —and also to agree on what should count as strictly male or strictly female.

That’s hard to do. How small does a penis have to be before it counts as intersex? Do you count “sex chromosome” anomalies as intersex if there’s no apparent external sexual ambiguity? Alice Dreger explores this question in greater depth in her book Hermaphrodites and the Medical Invention of Sex.

Here’s what we do know: If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1500 to 1 in 2000 births. But a lot more people than that are born with subtler forms of sex anatomy variations, some of which won’t show up until later in life.

Below I provide a summary of statistics drawn from an article by Brown University researcher Anne Fausto-Sterling.2 The basis for that article was an extensive review of the medical literature from 1955 to 1998 aimed at producing numeric estimates for the frequency of sex variations. Note that the frequency of some of these conditions, such as congenital adrenal hyperplasia, differs for different populations. These statistics are approximations.

  • Not XX and not XY: 1 in 1,666 births
  • Klinefelter; (XXY): 1 in 1,000 births
  • Androgen insensitivity syndrome: 1 in 13,000 births
  • Partial androgen insensitivity syndrome: 1 in 130,000 births
  • Classical congenital adrenal hyperplasia: 1 in 13,000 births
  • Late-onset adrenal hyperplasia: 1 in 66 individuals
  • Vaginal agenesis: 1 in 6,000 births
  • Ovotestes: 1 in 83,000 births
  • Idiopathic (no discernable medical cause): 1 in 110,000 births
  • Iatrogenic (caused by medical treatment, for instance, progestin administered to pregnant mother): no estimate
  • 5 alpha-reductase deficiency: no estimate
  • Complete gonadal dysgenesis: 1 in 150,000 births
  • Hypospadias (urethral opening in the perineum or along the penile shaft): 1 in 2,000 births
  • Hypospadias (urethral opening between corona and tip of glans penis): 1 in 770 births
  • Total number of people whose bodies differ from the standard male or female: 1 in 100 births
  • The total number of people receiving surgery to “normalize” genital appearance: 1 to 2 in 1,000 births.
This is what they do in stage two. This should give you an idea of how they made me a boy.

This is what they do in stage two. This should give you an idea of how they made me a boy.

I'm Sorry, I was Born With a What?

Like I said before, I didn't know that I was not born a proper man until I was in my fifties. I knew I was not well endowed but I did not know that enhancements had been made to make me as big as I was. All my life I had done as many stupid things as possible in an effort to prove I was a man because many people saw me as a bit feminine. But I had no idea how feminine I was.

From the time I started having problems to the time I found out I was born with a vagina, twenty years had passed.

It all started in my late twenties when I started having pain in every muscle of my body all at the same time. When it started it wasn't that bad I described it as a shadow of pain that sort of felt like the day after a good workout except without the workout. Over time it got worse. It got so bad the doctors were giving me morphine and telling me that I had less than three months to live. it got this bad on two different occasions over the twenty years.

I saw multiple doctors and specialists, and nobody could tell me why I was getting sick or why when it seemed most bleak, I recovered enough and could be a productive member of society again. The doctors were baffled and so was I but the one thing I was sure of was that I would never detox from Oxy-Contin or morphine again I refused to take the pain killers five years ago and have not looked back since. I am not going to say there haven't been days that if there were one in the cabinet, I wouldn't have taken it.

To make a twenty-year story short, I was still in pain and wanted to know why. In the end, my doctors and I had to scrap everything that we thought we knew and start over. That's when we started following the scars. When we looked at the genital which is where we started because that's was my first medical situation, there were scars that could only be explained by one thing—extreme Hypospadias with a micropenis.

I was a bit stunned and need time to digest the information and no medical care was sought or provided for the next several months other than a refill for my Thyroid prescription.

The most difficult thing to get my mind to stop thinking about was the what-if. Don't get me wrong, even though my life has been a train wreck I wouldn't trade it for anything. But what if I had known this earlier in life, what if when I asked for Figure skates, I wasn't given Hockey skates instead; what if I was meant to be a girl all along, and I have been cross-dressing all my life?


I Needed to Know All There Was About Ambiguous Gender

A lot of people will think this is a sexual thing but it isn't at least not to me anyway. I was over 21 when I lost my virginity, and I know the name of everyone I have had sex with in my entire life.

I am married and have a child, even though I was told that because of where liquids left my body, there was no way possible I could be a father without making a sperm donation and having it implanted in a woman.

Sex never has been important to me and still to this day I would rather engage you in a two-hour conversation than jump your bones.

After not seeing the doctors for a few months and reading everything written about extreme Hypospadias. I felt I knew all there was to know.

Considering I had my surgeries more than 50 years ago, there is very little information to read. There was only two actual study's where they followed up on patients to see if they made the right choice and they don't agree.

Researchers at the Johns Hopkins Hospital tracked the development of 27 male children born with genital anomalies, 25 of whom had undergone sex reassignment at birth.

Surgeons find it easier to assign the child as a girl, construct an opening, and remove enlarged clitoral tissue than to try to enlarge, reshape, or even create a functional penis.

The 25 children who were raised as girls all exhibited male characteristics, which caused an identity crisis and, ultimately, psychological distress. However, the two children who were raised as boys were better adjusted psychologically than the reassigned children were. These baby boys should not have undergone a sex reassignment because of their abnormal genitalia. Instead of allowing the individuals to have the option of surgery, the doctors chose the easiest reconstructive surgery, which was to create a vagina.

What was an easy process for doctors, became a long and difficult process for the child. Children who do not identify with their assigned sex can have profound psychosexual developmental delays and deficits, and eventually, the kinds of normal encounters with the opposite sex, including dating, are delayed or absent among them (Scheck, 2001).

Dr. John Money, on the other hand, in a study of 105 intersex children and d genitalia of babies should be altered in order for them to adjust psychologically into one gender or another, but a sex reassignment performed too early can damage a child adults, claimed to have found that more than 95 percent of them fared equally well psychologically, whether they had been raised as boys or girls.

Many psychologists feel that it is psychologically better to operate when the child is younger and that the individual who is not operated on will have problems in society.

However, there has never been any reliable empirical evidence linking genital surgery to better outcomes. If anything, patient forums have documented severe psychological distress among some of their members (Zucker, 2002). Many doctors feel that they are ambiguous or malformed developmentally. Urological surgeons have been heavily criticized for early intervention in these children. For a child to grow up identifying with one gender, yet being forced into another, will without a doubt be psychologically damaging to that child, which is why irreversible gender assignment should be delayed until doctors and parents know more about the child’s interests

After reading the molehill of information and being the curious person I am, I decided to try a small harmless experiment on myself. I started taking over-the-counter post-menopause medication. I thought maybe my body has been fighting with its self trying to be female. After all, no one knows everything about the human body.

There were some vague connections that if you are open-minded and desperate for answers, it might cause on to think my body was having Estrogen problems. For example, the first time the pain got to the point I agreed to take painkillers was not long after my son was born, and by the time he was going into kindergarten, I was bed ridden and being told I was going to die for the first time.

By day three of taking OTC post-menopause medication, my pain went from a steady six or seven to a one or two on the doctor's office pain chart.

Where Do I Go From Here?

When I first found out I was born with female genitalia, I wondered what I would look like as a woman. I went and got a wig and borrowed a dress and found out something very interesting about myself.

If I want to look like a girl, I have to relax. That probably sounds easy to most people but when I was at my mother's side the day she died, she told me that her dying wish for me is that I would one day relax.

The funny part is that every time I relax I feel her slapping me in the back of the head and telling me not to stand like that. I can't tell you how many times I was corrected for swinging my arms too much when I was walking or leaning against a wall with my hip cocked or all the teasing I got for crying at the Sunday Disney movies. So not only did she make efforts to make sure I didn't get involved in feminine sports like figure skating she conditioned me into acting like a boy.

As a quick note, my mother was a violent alcoholic who would be in jail if she did the same things now as she did then. That aside, we had a long talk and said what needed to be said (or so I thought), and I forgave her. We had been friends for several years before she passed away from alcoholism.

Here I am faced with the reality that if I relax, I look very feminine. Kinda explains all those conversations that ended with, "You're not gay? Are you sure?" I was actually relaxed and having a good time so people thought I was gay. I see the feminine ways I do things much more now. Just the way I hold a cigarette or drink from a glass and the way I have always crossed my right leg over the top of my other leg when I am sitting. kinda scary how I could be so feminine and not even realize it.

I am trying to relax more and accept the posture that comes with it. One of the problems I have with this is that when I had all the toes on my right foot amputated at the age of 16 I had to teach myself how to walk all over again. I taught myself the manliest walk I could at the time.

You see, when I got my toes cut off the doctors told me I would never walk again and they refused to give me physical therapy that might give me false hope. I did all my own rehab at home by myself all the while realizing that doctors are not as smart as people would like to believe.

Great now I have to learn how to walk for the third time in my life and this time I have to learn to relax and walk at the same time. I guess the good part of not having toes is that I can't wear high heels so that will never be an issue.

The most amazing part to me anyway, came from my sitting, standing, and trying to walk more like a woman my back stopped hurting all the time, my digestion got better and my endless gas seemed to have an end after all. I felt better and I started losing weight. only like five or ten pounds but I lost weight that stayed off.

My hip doesn't hurt and sitting with my leg crossed over the top of my other leg like a woman is the most comfortable position I can sit in, except for the fact I feel like a fraud sitting, walking, and standing like a woman. Catch 22 much?

That and a few other things led me to believe that maybe my parents made the wrong decision when they decided I should be a boy. But I am not going to make this my mental rehab page. I moved out of my parents' house when I was seventeen and vowed to myself that I knew the difference between right and wrong and knew what happened the last seventeen years was wrong and I can not blame my parents for anything I do from that day forward.

Then came the postmenopausal experiment. I started taking the over the counter pills and my pain went from a daily seven on the 1-10 scale to a two. I noticed the difference in the first few days but I was skeptical. Because more than once the doctors gave me some new pills and I would want it to work so bad it does. It works well for a while, but the placebo effect wears off about two weeks after starting the new prescription.

Three weeks into it, and I am feeling fine so I decide there is something to this. I called and set a doctor's appointment and finished taking the rest of the pills in the package. When I stopped taking the pills the pain came back within 48 hours and either I became a wimp or my pain was making up for lost time, but the pain was worse than before I started taking the pills.

I went to my doctor's appointment and told her everything I knew on the subject and how I tried this experiment. The doctor says there is no reason why post-menopausal medication should help with my pain and there is no reason it shouldn't. They recommended that I keep taking the pills. They said if it works for your pain and keeps you from needing prescription pain killers then go for it.

I started taking the pills again. This time it took almost a full week to feel any benefit from the pills but I have been virtually pain-free and will keep taking them for as long as needed at this point. Even though it doesn't make since it works and I am going for it.

I did straight up ask them if I might be losing my mind and if they recommended mental health or not. they said I seem to be just fine mentally and recommended that I did not need to see a mental health doctor unless I felt I need one.

Now today I take the pills and feel much better all the pain is not gone but it is back to the days when it was a shadow of pain. I still can't relax without making an effort but I am getting better. I am still getting over the odd looks I get when I walk around like a woman in a man's clothes.

I now know why I have never relaxed and might actually be able to fulfill my mother's dying wish. But that might take walking around in girl's clothes to avoid the odd looks. Then I get back to the original question. What bathroom should I use?

Note on Comments

Because this post is about genitalia, I will delete any sexually suggestive comments the moment I see them. If you see one I missed, please feel free to let me know.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

To Explain the 101 Percentage on October 10, 2017:

Some Polls round up results so you most have likely have several X.6's or higher that cause the discrepancy. You would have to not round the numbers to fix it.

Jeffrey A Benedict (author) from Colorado on August 12, 2017:

John,

I agree it would be nice to know these things but do to the genetic test costing three to five thousand dollars an insurance unwilling to pay for it, because they say it is not medically necessary. I may never know for sure. Because my parents did not want me to know they have distroyed my medical records but I am being treated as if I had a Hysterectomy and my health is far better because of it. Yes I did have testies but I was told there was no way in the world I would get a woman pregnant without artificial inseminaton. Suprised!

John on August 12, 2017:

I would have liked some more information than "you were born with a vagina", like did you have a uterus and ovaries also. And since you appear to have fathered a child I assume you did have testicles and a prostate gland. I myself have firs degree hypospadius which required no correction, but one of my sons had 3rd degree, with opening at the base. Also would have been good to know if you were XY genotype.

Jeffrey A Benedict (author) from Colorado on August 12, 2017:

Michelle,

Give your parents a hug for me. They are truly unique.

Michelle on August 11, 2017:

That was an amazing read. Thank you for sharing your experience and lots of good info. I'm intersex also and my parents wanted me to make the decision for myself as I got older. Its not easy to tell what the person is or want to be at birth. Don't rush them and let them learn their selves first and they will decide. I'm glad my parents didn't mess with MY BODY. I believe only that person has that right to change, not anybody else's.

Jeffrey A Benedict (author) from Colorado on August 09, 2017:

Not being a programmer I have no idea how there is 101% but I will ask the folks at Soapboxie if they can fix it. Kinda odd isn't it? Thanks for for King words and sharp eye.

Lisa V-Corpus Christi on August 09, 2017:

Thank you for your life experience. I strongly advocate for more education and social awareness to transgender issues. The only concern that i have is that the first vote that you offered us has a 101 percentage point. There must be a miscalculation somewhere. Will you please explain this anomily. It is very important that if we educate, we do so with sold facts andf figuers. Thank you agian for your work.

Jeffrey A Benedict (author) from Colorado on July 02, 2017:

Mariah-Lee It is awesome to hear that not all parents feel they need to make the choice for their child. Even better that you are excepting of the differences that are natural. I also find it amazing how well they have made over 6 Million Americans invisible. Still to this day I have not read one single story of an Intersex/Ambiguous gender child going to public school in the last 60 years. Thank you for your kind response.

Mariah-Lee on July 02, 2017:

My ex partner was born with severe hypospadias and the parents decided to allow him to choose whether he wanted to be fe ale or male and he chose to be male. I was shocked at first to see what was down there but then realised that there was nothing wrong with it and was just different that's all it was. Yes there were 2 urethral openings and had a vaginal wall and a penis where the clitoris would normally be and I was so surprises to learn that his parents allowed him to decide what he wanTed. It's amazing to see some more info about this condition. I myself am a trans woman and find it hard having my genitalia but to have hypospadias would just be damn near horrible. Much love to you for sharing this article it means alot