Curious about surgeries I had when I was young.

[saraht123]

I saw a documentary yesterday on intersex people. It got me thinking and I remembered that when I was maybe 4 or 5 or 6 years old, I had a couple of surgeries. Well, actually I had more than a couple, but the following ones are interesting to me because of my gender identity etc. This was probably early to mid 1980s.

The first involved taking a testicle out of my abdomen and putting it into my scrotum, where it should be.

The second involved a circumcision, but also surgery to fix something to do with the urethra. I only heard of hypospadias for the first time yesterday and it does seem to fit with what I remember.

I guess I'm just wondering if it's possible that I was/am mildly intersex? Is there any anatomical or psychological connection between the above surgeries/conditions and intersex conditions and trans-ness? Is it worth requesting my medical records, just out of curiosity or asking for tests?

Also, recent blood tests showed my testosterone is low end of normal at 13.9nmol/l  (pre hrt). Externally, I look like a fairly normal male, which is unfortunate for me because as far as I can tell, I'm trans/mtf!

I don't much like putting all this out there, but my curiosity has the better of me right now!

[Dena]

The odds just went way up that you are intersex. You might want to see if the hospital records are still available as they will have the diagnosis and surgeons report. Legally they may not have to keep the records this long but it is possible that the records were retained and are still available.

Intersex isn't any one condition but has a number of different ways it can express it's self. I often thought I might be intersex as well because of the lack of masculine traits but test that were run on me at the time did't turn up anything. In the end, all knowing it would have done is give me a reason why I felt the way i did. It wouldn't have changed my need for treatment. After 33 years of not knowing, I have just learned that while my body may not be intersex, my brain is. Go figure.

[Rejennyrated]

Unless you are misremembering details I'd say it was very likely.

The problems, and corrections you describe fit exactly with the pathophysiology of PAIS grade 3... however the only way to be sure would be to run a proper gene sequencing as there are known micro-satellite variations and point deletions that mark this condition.

You should note that a full genetic sequence of the androgen receptor genes at loci XQ11 and 12 is required - the earlier and far more primitive technique of karrotyping does NOT reveal the lower grades.

AIS comes in 5 grades ranging from 1 to 5

Some of those with the milder form of PAIS (grade 1 & 2) have either no symptoms beyond reduced virilisation and a very low sperm count, or such minor abnormalities that they are accepted as normal variance... Those people have only been diagnosable since full gene sequencing became available,

[saraht123]

Thanks for the info. That sounds quite sciency, which is good(!), and I look forward to reading up. I agree, It was a long time ago, but I have quite clear memories of it all (I was in and out of Doctors/hospital quite a bit and it was fairly traumatic and etched in my mind). And I still have scars too. Of course, it could all just be coincidence.

Anyway, I will have a read up on PAIS and I'm interested enough that I might see if I can request my medical records.

Dena, the more I think about it the more it seems like the brain might well be the only manifestion in a lot of cases. Maybe the brain is just more sensitive than other anatomy to whatever it is that causes trans-ness or intersex conditions?

[Dena]

Rejennyrated could tell you better than me because she is almost a doctor and she hasn't played one on TV. Because both conditions are caused by exposure to the wrong sex hormone early in development but at different times, it could be different hormone levels, different sensitivity or who knows what else. This condition goes way back in history but it's only the last 20 years or so that there has been any research into it and we still know very little about it.

I suspect in my case, may body might have responded some to the hormones but not enough for detectable changes while my brain took the full force of the hormones. It's just a theory and I never will be able to prove it, but like I said, I am not worried about it. I have found happiness and that's really all that's important now.

[saraht123]

Heheh. I'm still trying to read up on Dr Rejennyrated's info on PAIS. I got a bit lost in the loci XQ 11 & 12 bit!

Edit: Rejennyrated, if you stop by this thread later, is that kind of gene sequencing readily available now and is it expensive?

You're right Dena. It's not that important and it doesn't really change much, but I do find it all quite interesting. I'm not really worried about it at all. Just more evidence that there is a spectrum for gender, I guess.

[Dena]

If you had corrective surgery, it might make a difference. Sometimes the "corrective" surgery makes it more difficult to do reassignment surgery so you need to be more selective about the doctor who preforms your surgery. The doctor should be made aware of the differences and a doctor with a history of revision surgery might be a better option because they will be aware of the differences they may have to face.

[saraht123]

Thanks. I don't think anything they did was majorly reconstructive. They did (I found out the name of it today) an orchioplexy, circumcision and something to fix the urethra. I don't think my bits and pieces were obviously ambiguous or anything but I will definitely make them aware if it comes to SRS (which I would like to have, if possible).

[abd789]

Im curious as well

esp about the correlation to trans

I also had some "problem" with my circumcision as a baby, its mentioned in my baby book, took several attempts to fix it. I also had to have major surgery at the age of 12. I have a giant scar that follows the bottom of my rib cage from one side to the other. Took 72 staples to close it. They claim I had high blood pressure due to a bad artery to a kidney. The say they did a renal bypass. I have never tried to get my records. Of course my mother is clueless and believed whatever the doctor told her. And I can imagine if a doctor said "You can never tell him this when he grows up, it will wreck him psychologically"..... she would hide it from me. Even after I pried in my 20s.

And here I am today in trans mode, and with a mixture of male and female body... I was born in 1968

[Ashey]

I had an undescended testicle as well, which had to be corrected twice when I was a baby. And it never grew very big, and doesn't hang as low as the other one. Still, my T-levels were pretty normal pre-HRT even though I didn't masculinize very well (thankfully). But it does make me wonder too... I'd say that coupled with the urethral correction might be a pretty solid indicator but I'd look at other characteristics of an intersex condition. I personally have just about all the symptoms of klinefelter syndrome but only a karyotype test is going to confirm it one way or another. The tricky thing about all this is that individual symptoms or issues could be just that, individual and not a part of an overall intersex condition.

[BeverlyAnn]

The first involved taking a testicle out of my abdomen and putting it into my scrotum, where it should be.

The second involved a circumcision, but also surgery to fix something to do with the urethra. I only heard of hypospadias for the first time yesterday and it does seem to fit with what I remember.

Sarah, you don't specify your age but if you were born 1978 or before, is there anyway to find out if your mother was given DES while carrying you?  DES is a powerful estrogen that was given in very large doses to women who had a risk of miscarriage  Cryptorchidsm (undescended testicle) and hypospodias along with gender dysphoria are all things that can result from prenatal DES exposure. 

Since you are just researching a lot of this, you are aware that the undescended side is at a much higher risk of cancer, aren't you?  And if it was as high as in the abdomen that's the greatest risk.  That's why, as long as it's still there , you check monthly just like doing a breast exam.  Mine was abdominal and wasn't discovered until I was almost 13.  By that age, the doctor really should have removed it but he did an orchipexy on me. 

[cheryl reeves]

i never masculized,but the only surgery i had at the time was a circumcision that i wanted at 15 so to stop bed wetting,it freaked my parents out that i wanted this,it took convincing the dr to do it,i was happy i had read books and found why i was wetting the bed..if i was cleaned shaved you would think i was cis female..i found my mom took prenatal vitamins in 1965 while pregnate with me..

[HughE]

If your T was only 13.9 nmol/l prior to starting on HRT, that's well below the average level for normal, healthy adult men, so it's unlikely to be PAIS, and more likely the effects you describe are simply the result of having had low T production all your life. Were your gonadotropins (LH and FSH) measured at the same time you had your total T measured? If so, you can tell from that whether you have primary or secondary hypogonadism. If your LH and FSH were both at or near the top of their lab reference range, then it's primary hypogonadism, and most likely you're XXY. If your LH and FSH were low or low normal, then it's secondary hypogonadism, and perhaps you were exposed to hormones such as DES (or some other endocrine disrupting substance), during your prenatal development.

[saraht123]

If your T was only 13.9 nmol/l prior to starting on HRT, that's well below the average level for normal, healthy adult men, so it's unlikely to be PAIS, and more likely the effects you describe are simply the result of having had low T production all your life. Were your gonadotropins (LH and FSH) measured at the same time you had your total T measured? If so, you can tell from that whether you have primary or secondary hypogonadism. If your LH and FSH were both at or near the top of their lab reference range, then it's primary hypogonadism, and most likely you're XXY. If your LH and FSH were low or low normal, then it's secondary hypogonadism, and perhaps you were exposed to hormones such as DES (or some other endocrine disrupting substance), during your prenatal development.

That's pre HRT. I was looking at self medding at the time so I started getting some blood tests done. I don't know my LH and FSH, but I might look into it.

i never masculized,but the only surgery i had at the time was a circumcision that i wanted at 15 so to stop bed wetting,it freaked my parents out that i wanted this,it took convincing the dr to do it,i was happy i had read books and found why i was wetting the bed..if i was cleaned shaved you would think i was cis female..i found my mom took prenatal vitamins in 1965 while pregnate with me..

i found out my mum took pre-natal vitamins too. It was some kind of powder she sprinkled over food. Do you think there might be a connection?

Sarah, you don't specify your age but if you were born 1978 or before, is there anyway to find out if your mother was given DES while carrying you?  DES is a powerful estrogen that was given in very large doses to women who had a risk of miscarriage  Cryptorchidsm (undescended testicle) and hypospodias along with gender dysphoria are all things that can result from prenatal DES exposure. 

Since you are just researching a lot of this, you are aware that the undescended side is at a much higher risk of cancer, aren't you?  And if it was as high as in the abdomen that's the greatest risk.  That's why, as long as it's still there , you check monthly just like doing a breast exam.  Mine was abdominal and wasn't discovered until I was almost 13.  By that age, the doctor really should have removed it but he did an orchipexy on me.

From what I've read the use of DES to prevent miscarriage here in the UK was discontinued in the early 1970s, quite a while before I was born, though I've heard it can affect more than one generation.

I am now aware from reading up of the increased cancer risk. Thank you!

And here I am today in trans mode

That's how I feel too but I don't know if it's just a funny coincidence or not. Part of me also thinks that maybe I'm not anatomically intersex, but perhaps the surgeries I had had some psychological impact that later showed up as being trans.

I had an undescended testicle as well, which had to be corrected twice when I was a baby. And it never grew very big, and doesn't hang as low as the other one. Still, my T-levels were pretty normal pre-HRT even though I didn't masculinize very well (thankfully). But it does make me wonder too... I'd say that coupled with the urethral correction might be a pretty solid indicator but I'd look at other characteristics of an intersex condition. I personally have just about all the symptoms of klinefelter syndrome but only a karyotype test is going to confirm it one way or another. The tricky thing about all this is that individual symptoms or issues could be just that, individual and not a part of an overall intersex condition.

I did look into klinefelter syndrome, but I can't see it in myself. Whether the photos on the web I have seen are extreme examples, I'm not sure, but in general I'd say I appear less feminised. eg my hips are relatively narrow.   

I agree, being trans + cryptorchidism + hypospaedias(?) + low-ish T might not equal intersex. It does make me kind of curious though.

[jessicats]

From what you are saying you seem to have exactly the same issues as I do. I had the same surgeries when I was very young, I had undescended testicle when I was 1 year old and surgery for hypospadias when I was 5 or 6. I also had issues with my skin on the tip of my penis. I am also wondering if I am intersexed and really feel like I am. I am still on the process of starting HRT, but I think if I am intersexed HRT would have better results on me.

Forgot to say that also had my T levels checked and they were on the low side - between 13 and 14.

[HughE]

I had undescended testicle when I was 1 year old and surgery for hypospadias when I was 5 or 6. I also had issues with my skin on the tip of my penis. I am also wondering if I am intersexed and really feel like I am. I am still on the process of starting HRT, but I think if I am intersexed HRT would have better results on me.

Forgot to say that also had my T levels checked and they were on the low side - between 13 and 14.

Undescended testicles and hypospadias are both signs that your testosterone production was below normal male levels during and immediately after the critical period for genital development (which starts about 7 weeks after conception and finishes around the end of the first trimester). If your T production was low then, it was probably below normal male levels during the critical period for brain development too, which would explain why you have a female gender identity!

The medical profession tend to base their definition of intersex solely on genital appearance though, and completely ignore the fact that the brain is also a sexually dimorphic organ. Hence, people like you and me are being told we're not intersexed, even though we have clear signs of having undergone at least some female development.

If you're curious to find out more about what the cause is, you could have a karyotype done to find out whether you're XXY. Most other genetic causes of intersex are quite rare, so if it's not that, the most likely explanation is that your mother was given hormones, or there was some other environmental factor present, that prevented you from producing enough testosterone to drive full male development. DES isn't the only testosterone-suppressing hormone to have been given to pregnant women. There's an entire class of them called progestins, which are powerful testosterone suppressants in adult men, and some of which are still used during pregnancy.

[jessicats]

Thank you for the response HughE. Well, I had done a karyotype test and the result was that I am XY. Do you think smoking during pregnancy has something to do with undescended testicle and hypospadias? My mom has been a smoker all her life, she says that she had quit smoking while she was pregnant but I don't really believe her. Some people who knew her say she quit 2-3 months after getting pregnant.

[HughE]

Thank you for the response HughE. Well, I had done a karyotype test and the result was that I am XY. Do you think smoking during pregnancy has something to do with undescended testicle and hypospadias? My mom has been a smoker all her life, she says that she had quit smoking while she was pregnant but I don't really believe her. Some people who knew her say she quit 2-3 months after getting pregnant.

The undescended testicle, hypospadias and trans identity all point to you having had below normal male testosterone during your prenatal development, that was probably present all the way through (since it's affected both your genital development and your gender identity). As to what caused that to happen, I'd say it's likely to be an environmental factor of some kind, since aside from XXY, other genetic causes of intersex are all quite rare. Probably not smoking though, or there's be far more trans people about than there are!

The hypospadias shows that your testosterone production was already disrupted during the first trimester. Perhaps your mother took some drug or was exposed to some chemical during the critical period for differentiation of the testicles (6 weeks after conception), that prevented your testicles from developing fully, and the knock on effects from that are what led to you having lower than normal male testosterone for the remainder of the pregnancy (and later in life too from the sounds of it). That's purely speculation of course!