Hypospadias

[StephanieVikingGirl]

Hi all,

I have recently discovered that I have an intersexed condition called Hypospadias (which means that urine exits from the underside of the penis). I had never looked at guys when they were peeing, and I have always preferred sitting to pee, so I just never noticed that my penis was different. Okay I feel real stupid for not noticing that I was born intersexed, but since no one ever told me, I just assumed they were all made that way.

It is kinda funny how I found out that I wasn't typical in the genital department: Alex was looking at realistic penises that he could use to stand, and pee in the men's room, they were modeled after cis male volunteers. When I saw how the urine exited at the end, well I was surprised. How did I miss that all these years?

I have had a lot of other intersexed traits that I already knew about (gynocomastia, retractile testis, etc), so I decided to tell my endocrinologist about this. Well he took this rather seriously, and took me off Spironolactone for the next month. He told me that this complicates HRT, and he will need to evaluate things at our meeting next month. He did thank me for letting him know.

So, even though I have always suspected that I might be intersexed, learning that I really am has kinda shocked me. I have started reading up on the subject, but I don't know everything yet.

So does anyone else on the playground have Hypospadias? Or maybe some in depth info, on all this intersexed stuff? Thanks for reading.

hugs,

Stephanie

[Charlize]

I don't have that issue Stephanie but wish you the best! I'm sure your a bit concerned especially if your endo had that kind of reaction. Let us know how it goes.

Hugs,

Charlize

[StephanieVikingGirl]

Thanks Charlize,

Yeah I am slightly concerned from his reaction. He said the subject was too complex to talk about via email, but that this greatly complicates things with HRT.

Maybe he just wants to get a baseline for what my T levels are without Spiro, since I never had that done before (I started HRT a couple of months before signing the informed consent, and getting a proper prescription). Please note this is not recommended, it was very dangerous, I just didn't love myself enough to be careful 14 months ago. I would never do that again.

However I really don't know why I am off Spiro, I am just very glad this didn't affect my Estrogen injections as yet. I am pretty sure that he will probably want some tests for additional conditions associated with this. I am kinda shocked that I lived 56 years before noticing that I was different in the penis department, I kinda feel stupid, but maybe I just put on some subconscious blinders to it. I was in denial for a very long time, and I always really, really wanted to be seen as normal. So okay, I am atypical, oh well, I pee sitting down anyway.

I will keep everyone informed as I learn stuff from my doctor. My next appointment is October 15th, so I guess I will learn a lot more then.

hugs,

Stephanie

[tracy_j]

I am glad that you have found this out before complications or possible ill health set in Stephanie.

My first thoughts are though - why wasn't a thorough physical examination done at the beginning of things? Maybe it is never done but some kind of checklist for complicating factors comes to mind.

Good luck for steady uncomplicated progress

Tracy x

[Guest LesleyAnne]

A nice thought would be that this becomes a positive for you rather than a worry.

My best wishes to you, and yes please keep us posted!

Thank you, Stephanie

[Guest AllisonRae]

Hi Stephanie, I just started spiro after being on the estrogen patch for the previous two months. Before I started the patch my T level was already boarderline low. Being on the estrodial patch for two months alone resulted in my T level being halved from what I started at. Hope this eases your mind about being off spiro a while.

Hugs

Allison

[Guest Raya]

Like LesleyAnne said, this could be a positive, maybe you won't need the Spiro anymore if the T levels are naturally low.

[StephanieVikingGirl]

Thanks for the responses,

I never had any medical coverage for most of my life, and therefore no doctor from circa 1973 to 2014. I don't know why I was never told about this. I am glad that they didn't do corrective surgery, and so at least I know about it now. I do remember one of the doctors examining me writing a bunch of things down when I was examined before deploying overseas, but I don't remember him giving me an explanation. I have the milder distal hypospadias (the most common type), and so although I sit to pee, it is possible to stand for peeing, it usually goes down at an angle without much if any spraying.

Yep, I agree that this is probably going to be fine, I probably produce considerably less T than typical for males, and therefore Pablo (my endo) will probably lower my Spiro dosage. It is early yet being without Spiro, but so far no reversal of things is apparent, I still have no body hair or beard growth. I think that this explains for me some things, and self knowledge is never wasted.

I had noticed some other things when I was a child, and youth. As a kid I could put my testicles up inside myself, and later when I was going into puberty I developed some breasts (they stopped growing later, probably as my T went up to whatever level it reached). I also have an unusual light bone structure for a guy with wider hips, long legs, and really long arms. I am also a lot taller than anyone in my family (I have famous jockeys as some of my relatives). I have some other unusual traits as well, but I think this is all part of being born intersexed. I don't know if I have any other actual conditions though besides the hypospadias.

I am in excellent health despite an abnormality of how my heart works (I found out about that in 2000 when I went to a cardiologist before deciding to compete in a marathon with my friend Ann). I ride a bike for a living after all, so I don't think that there is much cause for concern health wise.

Truthfully since I have already transitioned on the job, this revelation doesn't change anything, I had already accepted that I had a female brain. I guess this little condition with my genitals does give me confirmation of atypical hormone conditions during my fetal development, nothing more. All of us trans folk had atypical conditions in the later stages, I just encountered them earlier in development as well.

hugs,

Stephanie

[StephanieVikingGirl]

Well, I thought it was prime time for an update. My endo Pablo showed me my latest blood test results (after two months of being off spiro, but still getting estradiol injections every two weeks): E = 217, T = 8. So he thinks that my intersexed body produces a fair bit of estrogen, and so with my injections it is enough to overcome any testosterone production that my body produces. Long story short, I don't need to take spiro anymore, or any other T blocker. He is also going to refer me to a Genetic Councilor since it is very likely that I have chromosomal anomalies underlining all of my intersex traits, he thinks it is most likely that I am XXY. So it is that my karyotype is going to be checked, and I will find out for sure, what I have long suspected. Interesting stuff, I am learning so much about myself lately. Pretty groovy really.

hugs,

Stephanie

[Guest LesleyAnne]

Hey Stephanie,

I'm very happy for you. Not having to take a T blocker is a good thing....one less chemical in your body...yay!

Out of curiosity have you ever heard of 'Sons of DES'? Your Hypospadias is one of the noted side effects associated with women who took DES during their pregnancy. I'm sure you've already heard of it, so I was wondering if you know if your mom was given that drug.

I'm relatively sure my mother was given DES since all of her pregnancies were considered high risk with two early miscarriages. Unfortunately I can't know for sure since my mom has passed, but given that that was the drug of choice given to high risk pregnancies at the time. The drug was stopped around 1971.

Relish in your news of having great E numbers with low T, and without a blocker

[StephanieVikingGirl]

Hi LesleyAnne,

Yeah, pretty groovy not needing spiro. I have indeed looked into 'sons of DES', and I read the studies. Possibly as many as three million are affected. I don't know if my mother was given the drug, but it was usually given after the twelfth week of pregnancy, which is right when the brain starts to really develop. I am sure many of us are victims. My hypospadias condition was said not to be included in the DES effects though, since it is from the pre-twelfth week genital development time frame. I am most likely XXY, it is not all that rare really amongst us trans women, methinks.

hugs,

Stephanie

[Ravin]

This is all really interesting, though I have never before heard someone refer to hypospadias as an intersex trait. It is fairly common, as is corrective surgery for it on infants, so you are fortunate to have escaped that.

[StephanieVikingGirl]

Hi Ravin,

It really is interesting stuff, the hypospadias is just one of quite a number of symptoms all pointing to a likely XXY chromosome anomaly for me. I am also glad that they didn't operate on me as an infant, otherwise I would still be wondering if I was born intersexed. I think that most medical professionals try to down play the intersex aspect of the genital birth defect called hypospadias, but it is listed on the Intersex Society of North America website. It is fairly common, one in 250 or thereabouts. I think XXY is something like one in 500 or so. Being transsexual is maybe one in 300. However, I believe that there is a fairly large overlap between these medical conditions, and so maybe folks like me are not all that rare. I am just so glad that I transitioned, and in doing so, I went from a sociable, friendly, but weird, exotic person; to a well liked, sociable, chatty, normal woman. I really enjoy myself nowadays, and that is the most important thing.

hugs,

Stephanie

[StephanieVikingGirl]

Hi all,

Time for another update, Alex had his doctor's appointment with our endocrinologist Pablo, and of course I drove. Pablo told me that he checked on it, and they have the ability to check my chromosomes right there at the clinic, so he won't need a Genetic Counselor to examine my karyotype. Groovy news, that means that at our next appointment, two months from now, he will have my blood drawn for a karyotype test. Fantastic, I will finally know for sure that I am XXY, I certainly have most of the symptoms/attributes, but it would be great to know for sure.

hugs,

Stephanie

[Krystal88]

Hi all,

Im new here and am happy to have found this website.--- I have a hypospadia as well. Didn't realize it until I was older when I went to a doctor. The other thing that surfaced over time was my crossdressing. I believe now that one is connected to the other. I never thought anything of the hypospadia and initially thought that I just had a fetish for woman's underwear. Over time, however, the feeling grew to dressing up entirely as a woman and enjoying my feminine side. I did some research one day and learned that hypospadias fell under being intersexed. Then everything made sense. I believe now that there must be a connection between my feminine side/dressing and having a hypospadia. I must say that I am VERY happy to have my feminine side and at times feel I am a lesbian trapped in a man's body. Anyway, glad to be here!

Krystal88

[MaryEllen]

Hello Krystal,

Welcome to Laura's Playground. Glad to have you here.

MaryEllen

[StephanieVikingGirl]

Hi Krystal,

Welcome to the playground, there are plenty of nice, supportive folks here. I didn't realize that I had hypospadias until my boyfriend Alex was looking at stand to pee devices that were modeled after volunteer male subjects (Alex is FTM), and I kinda noticed the difference. I had already accepted myself as transsexual by that point, and I was already living as a woman full time. I have the mild form, the urethra exits the underside near the end, not near the scrotum. As soon as I figured out that this was an intersex condition, I realized that I also had almost all of the physical characteristics that are symptomatic of Klinefelter's Syndrome (47 XXY). My doctor, Pablo has been very interested in my case, and currently I am scheduled to have my karyotype checked by U.C. Davis Medical on February 4th to confirm my chromosomal anomaly. I am glad to have another intersexed person with the same condition here, is yours distal like mine?

hugs,

Stephanie

[Krystal88]

Hi Stephanie,

Mine is similar, right below the head. When I researched this I was surpised to see how prevalent hypospadias were.------Also, thank you Mary Ellen! This is an excellent website.

Kystal

[StephanieVikingGirl]

Hi Krystal,

Yep, we both have the most common kind of hypospadias. Do you have any other intersex conditions? Once I finally noticed the hypospadias, I realized that I had several other intersex traits/symptoms. I have very small testicles that were retractile when I was young (early elementary age); my breasts started developing during puberty (they effectively disappeared as I grew tall, and lean), my legs are very long which made me six inches taller than my father (according to our military records measurement), my arms are disproportionately very long (my current hand span is 74.5 inches, compared to my height of 70.0 inches), I have never had much body hair, or odor for that matter, my facial hair was sparse enough to just pluck (no laser or electrolysis needed), and I have feminine bone structure (my wrists are slender, my rib cage narrow, and my hips wide). Hypogonadism is what they call this condition, and clearly my body produces more estrogen than a male (which competes with testosterone successfully enough with my injections of E that I don't require any T blockers). I count myself lucky really, sure it was a hard life in my caterpillar days, but now I am appreciating my feminine body which makes passing as female a non-issue. So anyway, do you have other traits?

hugs,

Stephanie

[Krystal88]

Hi Stephanie

My chest got big very quick in high school--Now I was always working out so it wasnt soft but somewhat abnormally big.All my other body parts lagged way behind. I mustve been growing breasts and the weights just solidified the tissue.muscle etc. I do have long arms and legs--not really disproportionate, but still long. My hips are somewhat wide (and now recall that I was even told that in high school by someone.) My genitalia is small. (I was always self concious of this in showers and lockerrooms.Its funny I always wondered why I was small--I never made the connection until way later in life.) One of my tescticles have slipped up inside a few times. I just massage the area a it drops. The biggest thing was my attraction to womens underwear and how it finally blossomed into dressing fully. I rememeber when looking at a goregeous woman who was beautifully dressed. I thought it would be nice to be with her but even better to look like her!It was a neat moment.

[Krystal88]

Hi Stephanie,

I hit the post button too soon. When did your feminine side first emerge? Or did you always have it?

hugs

Krystal

[StephanieVikingGirl]

Hi Krystal,

I remember when I was five that I thought that I was a girl, and became very confused when I was informed otherwise. I started having some awkward questions after that, but my family was not very educated, so arguing with them was like talking to a wall. Of course I also preferred sitting down to pee, and that caused more arguing. I also tucked my parts while in the bath so that I would look as I thought I should, as a girl should look. I was considered a weird child by my family.

Very small, and/or retractile testicles in conjunction with hypospadias may indicate a chromosomal anomaly: 47 XXY trisomy (aka Klinefelter's Syndrome). I think you should see if your doctor will refer you to have your karyotype checked. I have all the symptoms except those regarding linguistic, and/or learning difficulties. I have the typical high intelligence shown by most transsexual folks.

According to my research, and what my doctor has told me, XXY doesn't always show all the symptoms, but it does always result in very small testicles (almost always infertile). So even if you don't display classic eunuchoid body habitus like me, just the combination of hypospadias and small testicles indicate enough likelihood to get checked for it methinks. I am getting checked on February 4th.

hugs,

Stephanie

[Krystal88]

Hi Stephanie

I noticed the date, the 4th--just wondering how you made out---hope you are doing well---it would be interesting to see what my chromosone makeup is. Maybe someday--I would want to have it done in another state. Im in a small town area. I want to stay incognito.

hugs,

Krystal

[StephanieVikingGirl]

Hi Krystal,

I went to see the Genetic Counselor this afternoon. I had filled out some paperwork, so I turned that in, signed some other paperwork, and then she said that no blood would be drawn today. However she did interview me for at least an hour. First she asked me about my birth, then about my parents, siblings, grandparents, ethnicity, and as she listened to my answers she jotted notes into a genetic tree that she drew. Then we discussed Klinefelter's Syndrome, and she asked me about my traits during the discussion. We discussed what my Doctor, Pablo had given to her, which included my most recent blood test results. She is going to submit her findings to my insurance to see if they agree to cover the tests. She said that it is very likely that they will agree to it since I display so many symptoms. When they do, she will call me to come in to give blood for them to test. Then it will be two weeks before I learn the results.

hugs,

Stephanie

[Krystal88]

I hope it all works out for you. Best of luck!

hugs,

Krystal