Questions for intersex peeps :)

[Doreen]

I personally had a pretty underwhelming puberty, I had a little facial growth which has been getting thicker up until this point, I currently have a little hair on my top lip and the bottom of my chin but it takes a long time to grow. Iv always looked a lot younger than my age and iv always struggled to put on any muscle, I have a strange body shape. im 6"2 but most of my height is in my legs rather than in my upper body, my hips have developed strangely to anyone that iv seen they extend quite high (at the sides there is only a very small gap between my ribs and hips).
Although I have no idea what this all means.. Possibly nothing 😂,

Dysphoria wise I have always had it hanging over me but I wouldn't say that it is particularly strong. I have my bad days but who doesn't.

Well... you sound almost exactly like me! I have very high hips too.  I'm also 6'2. Muscle? laughable.  I do have an hourglass figure more or less.  About the same amount of facial hair as any woman my age.. and I also look much younger than what I am.

What I possess is partial androgen insensitivity and mixed gonadal dysgenesis.  You? not sure Could always get things checked out genetically.

[Linde]

I wonder how many people are out there who are one or the other version of intersex , and not know about it?  I did not know this, because i was told I am a boy, period!
After my peers went through puberty and started to get that real manly appearance, while I did not, I knew I was different, but had no idea what it was.
The only different people I had herd of were hermaphrodites, and who wanted to be like that to be displayed in a carnival?
I assume that my parents knew that I was different, but I was the only boy they had, and they had nothing to compare me with!  Klinefelter had not made his discoveries yet, and nobody had an idea what genes and chromosomes were.

I envy you young ladies, who have a chance to live a life the way you were supposed to live.  I had to live most of my live in an assumed male roll.  Sometimes I try to imagine how my life would have been, if I would had been allowed/had a chance, to live it the way I was supposed to live it.
I better stop, because now I am getting depressed!

[Myranda]

If you have a copy of your blood work, by looking at it you can actually tell if you (probably) have the commonest genetic cause of intersex, an XXY karyotype (Klinefelter's syndrome). Your testosterone will be low, but your gonadotropins (LH and FSH) will be high, and possibly flagged as above normal. Assuming you haven't yet started HRT, if your total T and gonadotropins are both low, it's more likely not Klinefelter's.

This is quite interesting.  I've had historically low T, but looking at my blood work from the last 6 years  my LH and FSH have always been just at or above the standard normal range.


LH Standard Range  2.0 - 12.0
      3/28/12   6/1/12   9/5/12   5/28/13   10/7/13   1/21/14   7/7/14   10/28/14   3/16/15  12/2/15   
IU/L 6.1           13.5           13.4       11.6   5.9           9.3            9.9           12.3           12.1        6.2


FSH   Standard Range 1.0-12.0 for Men
        3/28/12   6/1/12   9/5/12   10/7/13   1/21/14   7/7/14   10/28/14   3/16/15   12/2/15   
IU/L    17.3        31.2   26.6           17.2           25.2           24.5           20.8           21.5           17.1

Granted a good portion of this time I was on Clomid to help boost my T "naturally", but even before I started that, my FSH was above normal...

[Jessicauk]

Well... you sound almost exactly like me! I have very high hips too.  I'm also 6'2. Muscle? laughable.  I do have an hourglass figure more or less.  About the same amount of facial hair as any woman my age.. and I also look much younger than what I am.

What I possess is partial androgen insensitivity and mixed gonadal dysgenesis.  You? not sure Could always get things checked out genetically.

I think I am more confused than I was last week, iv been trying to get in to see my dr but no luck yet..    This has gone from a curiosity to something I need to put to bed either way.. I think it's the scars that are bugging me the most 🤔😑

[Marcie237]

Fantastic that you got out of the abusive relationship!!!
You def need some tests, though they, in themselves, may not be conclusive. For example, an ultrasound showed my well defined right ovary, but a CT scan does not show it. But anyway:
simple karyotype for x or y
external ultrasound looking for ovaries and uturus.
CT or PET scan of lower abdomen

if the 2 scars were for undescended testes, they would need to be very low - directly above and parallel to the top of your pubic bone.  where are they in relation to your pubic bone, and naval? But usually that is done by thumb manipulation below the pelvic bone, afaik.
That you have no memory of those scars before 10y and yet you do at 10y is confusing, though you could have been given anesthesia without your knowledge. That scenario is scary to me, though. Traumatic amnesia? PTSD amnesia?
Yes, parents that hide things... i had a couple.

Time to start searching for docs that will do those things for you. endocrinology can only show so much.

[Jessicauk]

Fantastic that you got out of the abusive relationship!!!
You def need some tests, though they, in themselves, may not be conclusive. For example, an ultrasound showed my well defined right ovary, but a CT scan does not show it. But anyway:
simple karyotype for x or y
external ultrasound looking for ovaries and uturus.
CT or PET scan of lower abdomen

if the 2 scars were for undescended testes, they would need to be very low - directly above and parallel to the top of your pubic bone.  where are they in relation to your pubic bone, and naval? But usually that is done by thumb manipulation below the pelvic bone, afaik.
That you have no memory of those scars before 10y and yet you do at 10y is confusing, though you could have been given anesthesia without your knowledge. That scenario is scary to me, though. Traumatic amnesia? PTSD amnesia?
Yes, parents that hide things... i had a couple.

Time to start searching for docs that will do those things for you. endocrinology can only show so much.

Sort kristi I mean that iv had them for as long as I can remember 🙈

[Marcie237]

got it!
where are they?

[Jessicauk]

They are just above my belly button, almost exactly symmetrical one either side on my front I'm still struggling to link pics

[Marcie237]

Thanks! That makes me think things like exploratory/appendicitis/neonatal bowel obstruction or the like, but I am def no doc!!!
Yeah, I haven't advanced enough to be able to try the joys of attaching pics...

Be well!!!

[Jessicauk]

Thanks kristi .. I mean, it is possible that I am going crazy 😂.. I managed to upload a couple of pics to my gallery it they Havnt been approved yet

[Marcie237]

     Sure, you could be going crazy - I went there long ago, but, really, dysphoria of any sort can easily make you "think" you're mentally unstable, simply because you don't have what seem to be definitive answers, and, for many, there never really "are" definitive answers - meaning you simply have to go ahead based on what you feel. In the US, 50 years ago, there were only a couple people who would screen folks for gender treatment, so after much prep and psych self work, I picked one, traveled, and talked to him for an hour (psychiatrist), was passed and went back to the group for treatment. Nowadays it seems to be about the same thing, though there are MANY more groups, and with the internet, many opinions about where one should go, and what one should do - could easily still be as confusing because you still have dysphoria, think you're crazy, and don't have any answers.  The thing with any type of gender confusion is that imho you need to make sure that you only talk to professionals who are trans-or-whatever knowledgeable-AND-accepting. Again the internet can help you with that. Unfortunately I know nothing about the system in the UK, so can't help there with specifics. Usually google is your friend, but of course you need to be very careful about giving out personal info other than generic feelings until you really know who you are talking to - again, imho - it can come back to bite you - a tad of paranoia is a good thing for gender folk, imho. While I have practiced as a clinician, I freely offer the advice that "any patient has to be smarter - one step ahead - of any clinician that they go" to. Read that again. Do your homework!  The internet makes it a lot easier, but there is both good info and pure garbage to be had there - I suggest "ask your guides for understanding" each night before you go to bed, if that doesn't conflict with your belief systems - I do it, and it seems to help me...  It is an ongoing process. At least for me! 

[HughE]

This is quite interesting.  I've had historically low T, but looking at my blood work from the last 6 years  my LH and FSH have always been just at or above the standard normal range.


LH Standard Range  2.0 - 12.0
      3/28/12   6/1/12   9/5/12   5/28/13   10/7/13   1/21/14   7/7/14   10/28/14   3/16/15  12/2/15   
IU/L 6.1           13.5           13.4       11.6   5.9           9.3            9.9           12.3           12.1        6.2


FSH   Standard Range 1.0-12.0 for Men
        3/28/12   6/1/12   9/5/12   10/7/13   1/21/14   7/7/14   10/28/14   3/16/15   12/2/15   
IU/L    17.3        31.2   26.6           17.2           25.2           24.5           20.8           21.5           17.1

Granted a good portion of this time I was on Clomid to help boost my T "naturally", but even before I started that, my FSH was above normal...

If you had low T when those measurements were taken then you have primary hypogonadism (testicles that are physically unable to make enough T), and taking clomid is unlikely to be of any benefit. It goes to show, a lot of the time doctors don't know what they're doing, and just throw stuff at us because they read somewhere it might help, or because a pharma sales rep told them it was a surefire win!

If you've had symptoms of low T all your life, then there's a very good chance you're XXY. You'd have to get karyotyped to find out for sure.

[HughE]

Hiya everyone, Thankyou all for your replys and I am sorry about the super late reply, my t at the test was 4.7 nmol/L,
I'm not sure how to reply to everyone at once but if anyone would be kind enough to talk more in depth please drop me a pm.  Thankyou so much

With T levels that low, you're already able to compete in the Olympics as a woman!

[Myranda]

If you had low T when those measurements were taken then you have primary hypogonadism (testicles that are physically unable to make enough T), and taking clomid is unlikely to be of any benefit. It goes to show, a lot of the time doctors don't know what they're doing, and just throw stuff at us because they read somewhere it might help, or because a pharma sales rep told them it was a surefire win!

If you've had symptoms of low T all your life, then there's a very good chance you're XXY. You'd have to get karyotyped to find out for sure.

Karyotype came back normal.

[Doreen]

Karyotype came back normal.

'
Don't let that discourage you. I'm 46XY DSD female mixed gonadal dysgenesis.. yet my karyotype is 'normal'.  NOTHING is normal inside me lol.  Trust me, like I said genetics is only a small part of identification of IS.

[Doreen]

Ultrasound showed well defined uterus but poorly defined bilateral ovaries. MRI showed uterus but it didn't look normal to him.  I had 2 pelvic laparoscopies.. supposed to be the most definitive and they couldn't find anything.  I find it very hard to see how they could see it on the other imaging but not the laparoscopy. 

Life goes on... as does my chronic pain in that region.  With no answers, no hope. Even more frustrating it was a doctor that specialized her whole life helping IS, trans, MRKH folks.. and she couldn't explain it either. Of all people she should be able to know. I trust her implicitly that she tried hard though.

[Linde]

Ultrasound showed well defined uterus but poorly defined bilateral ovaries. MRI showed uterus but it didn't look normal to him.  I had 2 pelvic laparoscopies.. supposed to be the most definitive and they couldn't find anything.  I find it very hard to see how they could see it on the other imaging but not the laparoscopy. 

I can understand that they did not see anything with the scope.  First you really need to know what you are looking for, and unless they pumped you abdomen up, it is a pretty tight and bloody looking mess inside there.  Mother nature did a real good job in high density packing!  The field of vision of a scope is very limited, and if something might have hidden around the corner, it can be missed.
I personally would ten to believe the MRI most, because that is specialized to see soft body tissue, and provides a layered image.  Ultrasound is only reliable if the objects are rather close to the surface and not covered by other tissues!

[Myranda]

'
Don't let that discourage you. I'm 46XY DSD female mixed gonadal dysgenesis.. yet my karyotype is 'normal'.  NOTHING is normal inside me lol.  Trust me, like I said genetics is only a small part of identification of IS.

Though I did have some "hernia" repairs when I was very very young.

[Doreen]

Though I did have some "hernia" repairs when I was very very young.

I also had hernia repair, and people looking at the laparoscope images.. more than one doc has suggested it wasn't just the hernia they 'fixed' when they were there.  I've seen them too.  There is a lot of staples & mesh in that region.  Something significant was done, but I have no records nor was informed of what they did.

They did things like that back then.  Then again that was back in the early 1990's.

[Myranda]

I also had hernia repair, and people looking at the laparoscope images.. more than one doc has suggested it wasn't just the hernia they 'fixed' when they were there.  I've seen them too.  There is a lot of staples & mesh in that region.  Something significant was done, but I have no records nor was informed of what they did.

They did things like that back then.  Then again that was back in the early 1990's.

My hernia repairs were much earlier than the early 1990s.  The only records I have is a simple form/report from the surgery and it doesn't say much and I certainly don't think that there is any images from back then, and having had Apendicitis and the requisit Apendectomy, as well as Kidney stones and a bunch of imaging for those and my Gall Bladder removed, no one has once commented on anything else being odd inside...