Hey everyone, I am Jess, I am a 29 year old trans woman from the uk, currently pre hormones and surgery..
So a recent hormone level test has caused me to question whether I could possibly be intersex.
Obviously having dysphoric feelings something has always felt off however at the age of 28 after getting out of an abusive relationship I decided that I was going to transition to be my true self (nothing unusual there) and I totally understand the difference between being trans and intersex however after my initial blood test with my gp I have found out that my t levels are very low and my e is a higher than usual. Now, iv always looked a little andro and let's say, puberty didn't hit me ver hard. even when living as male, everyone has always told me that I look like the females in my family rather than any male relatives.
Now, I am waiting for my first appointment with the gic here and my gp doesn't seem to want to look into it but it has been a nagging feeling that something doesn't feel right,
So my question basically is, and I can understand how this could be a hard subject to talk about.. If anyone has had as an infant, any surgery what would possible scarring look like if any from it as I have two scars on my abdomen that iv had since I can remember which was around the age of ten. Iv not had any accidents as a child that I have required surgery and I can't ask my parents about it as they both have mental health issues.
It's hard to even guess for sure. Do you have a normal looking scrotum and do you know if your testicles decended normally before birth or right after?
The low T and high E is an interesting thing too. Would you share the test levels with us?
There are so many possibilities but to have high E either your body make much higher aromatase enzyme than normal or possibly you have one or both gonads being ovatestes. This is when the gonads form both testes and ovarian cells.
If you have no memory of any sugery then the scars do raise a flag. Perhaps they pulled you gonads down to make them drop. It might explain abdominal scarring.
Hi Jessica,
Its common for parents to hide it from their intersex children (mine did) but the only way to know for sure is to get a copy of your complete medical record and look for any genital surgeries (if its certain kinds of intersex). Otherwise, you'll need to do a blood karyotyping which can be expensive but maybe not so much in the UK.
If you have Persistent Mullerian Duct Syndrome, you'll have periodic blood in your urine and semen, inguinal hernias, and it shows up on an abdominal MRI.
In the end, whether you are intersex or not, only you know who you really are.
Many hugs and I hope this helps!
Quote from: Zoe_Kay on November 20, 2018, 03:59:20 PM
Hi Jessica,
Its common for parents to hide it from their intersex children (mine did) but the only way to know for sure is to get a copy of your complete medical record and look for any genital surgeries (if its certain kinds of intersex). Otherwise, you'll need to do a blood karyotyping which can be expensive but maybe not so much in the UK.
If you have Persistent Mullerian Duct Syndrome, you'll have periodic blood in your urine and semen, inguinal hernias, and it shows up on an abdominal MRI.
In the end, whether you are intersex or not, only you know who you really are.
Many hugs and I hope this helps!
One of my (many) diagnosis is Persistent mullerian duct syndrome. I had a left inguinal hernia mesh with a mass removal (didn't know that till they saw it internally later), and I also have pain in the right inguinal region periodically. Karyotype will not necessarily tell you if you are or are not intersexed. In fact there is a strong chance it won't... keep that in mind.
All of my childhood records were missing other than my birth certificate.
Like I said, Karyotyping is just one way to find out about certain kinds of being intersex - but certainly not all!
And I know what you mean about inguinal aches - those can actually menstrual cramps much of the time (if you have at least one ovary).
So your birth hospital has no records? Or that there were no weird surgeries and thus no records?
Quote from: Zoe_Kay on November 22, 2018, 03:39:01 AM
Like I said, Karyotyping is just one way to find out about certain kinds of being intersex - but certainly not all!
And I know what you mean about inguinal aches - those can actually menstrual cramps much of the time (if you have at least one ovary).
So your birth hospital has no records? Or that there were no weird surgeries and thus no records?
Literally 'missing birth records' when I asked. I'm also experiencing constant abdominal guarding and pelvic floor dysfunction, painful inguinal ligaments.. going to pelvic floor physical therapy for it. Literally the main reason why the abdomen presents this way is because of an inflamed or irritated organ. My organ, also known as the 'mullerian remnant'. Ya there's lots of squirrely stuff going on but hopefully I have a doctor that's skilled with intersexed peeps who's willing to do an exploratory biopsy. Contacting her next Monday to remind her :embarrassed: because she was supposed to contact me last Monday. Or so I thought she said.
I could easily make the argument I have an ovary.. and I'm actually concerned it may be cystic. Someday I'll know.
How did you find out that you have an ovary? I was tested and I have XXY chromosomes, but I have no idea what is going on inside my abdomen! A genome analysis done for other reasons states that I have the typical genome of a post menopausal woman. But I don't know what is inside, because if anything, it would be rather small and shrunk down. I know that I have one functional testicle only. I cannot remember (my menopause must have been 16 years or more ago) if I had something like menstrual cramps or pain on certain days of the month.
Now I want to become a woman very bad, it feels as if I am trying the body back that was taken away fro me may years ago.
I try to analyse my desire, and i don't feel like many of the trans women here, who feel thy were born in the wrong body.
I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!
Am I the only one who feels like this, or are you guys in a similar situation?
Quote from: Dietlind on November 23, 2018, 10:40:27 PM
How did you find out that you have an ovary? I was tested and I have XXY chromosomes, but I have no idea what is going on inside my abdomen! A genome analysis done for other reasons states that I have the typical genome of a post menopausal woman. But I don't know what is inside, because if anything, it would be rather small and shrunk down. I know that I have one functional testicle only. I cannot remember (my menopause must have been 16 years or more ago) if I had something like menstrual cramps or pain on certain days of the month.
Now I want to become a woman very bad, it feels as if I am trying the body back that was taken away fro me may years ago.
I try to analyse my desire, and i don't feel like many of the trans women here, who feel thy were born in the wrong body.
I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!
Am I the only one who feels like this, or are you guys in a similar situation?
Ultrasound said bilateral ovaries though poorly visualized, it also saw a uterus. Then again I have radiologists that disagree with that finding too. Ultimately I need and AM scheduling a diagnostic exploratory surgery biopsy to find out for sure.
I just know I always had estrogen production from the time I was young onward. At 21 I was perimenopausal estrogen levels.. around 60. So whatever I have isn't working that great.
I also have constant cramps and abdominal (lower) guarding that usually means there's an inflamed organ under. It hurts 24/7 and is quite miserable. Top that with pelvic floor dysfunction and frankly overstimulation of the pudendal nerve, life kind of sucks last couple years.
One thing that gets glossed over is that many of us have physical symptoms associated with intersex conditions. For whatever reason, doctors are very reluctant to diagnose intersex in someone who's assigned male though, so you're unlikely to be told you're intersex, even if there are obvious signs you are.
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.
Other than that, you'd need more extensive testing to determine a cause. One problem is that the tests can only pick up genetic causes of intersex, whereas environmental factors during the prenatal period can also be a cause of intersex (particularly exposure to external hormones or hormone mimicking chemicals). If your mother was given hormones of any kind during the pregnancy, that's probably what's done it.
Quote from: HughE on November 24, 2018, 07:54:43 AM
One thing that gets glossed over is that many of us have physical symptoms associated with intersex conditions. For whatever reason, doctors are very reluctant to diagnose intersex in someone who's assigned male though, so you're unlikely to be told you're intersex, even if there are obvious signs you are.
You are very correct there. It is either because they don't know much about these syndromes, or they don't want to "rock the boat".
Here I was gong through all my adult life without a hair on my body (except some sparsely growing genital hair that stayed nicely down there and did not grow up to my belly button), and no visible Adams Apple, a definitely female jaw line, not much beard growth and zero hair loss on my head, and none of my physicians ever said a single word. All of them knew that I was a fellow medical professional, and that we could have talked "shop" about it.
It was me who started to do research into this, after my body decided to grow breasts. And it was me who convinced my physician (an internist) to write an order for required lab tests and other tests that showed that I am an xxy chromosome person, who had never finished puberty and was in the process of doing so (the reason for the growth of my boobs).
Quote from: Dietlind on November 24, 2018, 09:13:14 AM
You are very correct there. It is either because they don't know much about these syndromes, or they don't want to "rock the boat".
Here I was gong through all my adult life without a hair on my body (except some sparsely growing genital hair that stayed nicely down there and did not grow up to my belly button), and no visible Adams Apple, a definitely female jaw line, not much beard growth and zero hair loss on my head, and none of my physicians ever said a single word. All of them knew that I was a fellow medical professional, and that we could have talked "shop" about it.
It was me who started to do research into this, after my body decided to grow breasts. And it was me who convinced my physician (an internist) to write an order for required lab tests and other tests that showed that I am an xxy chromosome person, who had never finished puberty and was in the process of doing so (the reason for the growth of my boobs).
XXY and potentially some androgen insensitivity. It is possible to have both. Most of my doctors know I'm a registered nurse, and still treat me like a peasant from the underbelly of the hillbilly mountains. I don't even have an accent from around here, and actually talk educated.
I've learned once they start talking like that to call them on their number. Point out the flaws in their arguments. Example: One reproductive endo told me a definitive diagnosis 'Didn't really matter as there is no impact on her long term health". I told him that was bull
>-bleeped-< because I'm disabled from chronic pain CAUSED by the condition. No impact? And the pain is progressively getting worse.
Sometimes I just hate dealing with it all. If I didn't have pain, I wouldn't be.
Quote from: Doreen on November 24, 2018, 10:18:31 AM
One reproductive endo told me a definitive diagnosis 'Didn't really matter as there is no impact on her long term health". I told him that was bull>-bleeped-< because I'm disabled from chronic pain CAUSED by the condition. No impact? And the pain is progressively getting worse.
Sometimes I just hate dealing with it all. If I didn't have pain, I wouldn't be.
OK I have a PhD in biomedical sciences, I am specialized in infection control and prevention, you should think that any physician would assume I know a little bit of the medical field. I try to make new docs aware of that, but I am pretty sure, it did not even register with the endo I a seeing. He really acted as if I was a dumb kid (and I am pretty sure that I am older than he is) from somewhere from the sticks. I don't know what they learn in med school, after we split in our field of expertise, but it is for sure not good bedside management or patient oriented treatments.
I think they feel like queens and kings because there are not many of them, and they all have a long line of patients waiting for an appointment! They can afford to be rude and belittling, because they would not loose any business!
You may not have scars, but that doesn't mean you aren't intersex. I'm a 26 y.o. trans woman with partial androgen insensitivity syndrome who "slipped through the cracks," as it were. It's hard to separate my trans experience from my intersex experience, but for what it's worth there are a couple things I attribute to being intersex that may resonate with you.
1) A feeling not just of "wrongness," but also "strangeness." I can clearly remember feeling that I was a girl and not a boy when I was little, but I also remember feeling that there was something somehow aberrant about me. That feeling almost eclipsed the gender dysphoria. I wanted to isolate myself because I didn't feel like I could fit in with girls or boys. The same feeling of strangeness followed me into puberty (which I still haven't fully completed, actually). My body went through a kind of mixed puberty -- first weight gain in my hips and breasts, but everyone thought I was just fat. Then I grew like a weed (I was taller than both parents by age 11 or 12) and got a dusting of facial hair and a slightly deeper voice by the end of high school. It was just enough to make me seem like a normal male, and I think my dysphoria wasn't as strong because I didn't go through full male puberty.
2) Not only feeling that the body doesn't match the mind, but also that the body can't fulfill the gender role expected of it. I definitely experienced gender dysphoria, but I also just had trouble physically being a man. Even when I was living as a male, people often told me that they saw me as more of a "boy" than a "man." I couldn't fake it even if I wanted to. People often commented on my soft baby face and weak muscles, were surprised by my age, and treated me more like a child than an adult.
There's probably more, but those two things stick out the most. Of course your situation may be different, but I just wanted to emphasize that you don't need physicals scars to be intersex--any number of chromosomal or endocrine abnormalities may be more subtle.
Quote from: Dietlind on November 23, 2018, 10:40:27 PM
I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!
Yes! I've definitely felt this way before. You are not alone :)
Quote from: grand_allegro_girl on November 28, 2018, 01:34:00 AM
You may not have scars, but that doesn't mean you aren't intersex. I'm a 26 y.o. trans woman with partial androgen insensitivity syndrome who "slipped through the cracks," as it were. It's hard to separate my trans experience from my intersex experience, but for what it's worth there are a couple things I attribute to being intersex that may resonate with you.
1) A feeling not just of "wrongness," but also "strangeness." I can clearly remember feeling that I was a girl and not a boy when I was little, but I also remember feeling that there was something somehow aberrant about me. That feeling almost eclipsed the gender dysphoria. I wanted to isolate myself because I didn't feel like I could fit in with girls or boys. The same feeling of strangeness followed me into puberty (which I still haven't fully completed, actually). My body went through a kind of mixed puberty -- first weight gain in my hips and breasts, but everyone thought I was just fat. Then I grew like a weed (I was taller than both parents by age 11 or 12) and got a dusting of facial hair and a slightly deeper voice by the end of high school. It was just enough to make me seem like a normal male, and I think my dysphoria wasn't as strong because I didn't go through full male puberty.
2) Not only feeling that the body doesn't match the mind, but also that the body can't fulfill the gender role expected of it. I definitely experienced gender dysphoria, but I also just had trouble physically being a man. Even when I was living as a male, people often told me that they saw me as more of a "boy" than a "man." I couldn't fake it even if I wanted to. People often commented on my soft baby face and weak muscles, were surprised by my age, and treated me more like a child than an adult.
There's probably more, but those two things stick out the most. Of course your situation may be different, but I just wanted to emphasize that you don't need physicals scars to be intersex--any number of chromosomal or endocrine abnormalities may be more subtle.
I really can't remember what, or how I felt as a little guy. I think (or am told) that I also never finished puberty. I was already 40 years old, when people thought I was in my mid 20's. And like you, I could never really measure up to my male peers. Later in life I preferred to be mostly with females, because the typical constant (mostly hidden) competition between males is not existing between female (none of the girls has to pound her chest all the time).
I just had the first facial of my life done, and the beautician could not believe that my skin was so soft and almost baby like. She called her coworkers to show them how "young" and soft my facial skin is. Still today, most people and facial recognition software make me about 20 years younger than my biological age! I have to say that my mind is about that much younger, too! I just have to convince the rest of my body to follow the program!
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
I wonder about another thing, or a few things, and I don't know whether it is because of intersex or if it is just me.
I can't remember that i ever had this kind of dysphoria for my body or body parts. I kind of knew always that I was living in the right body, I was just robbed of my genitalia. That my body was right became obvious when puberty came around. My peers started to look like apes, and here was little me without a hair on the still baby skinned body and still singing soprano (now that I am old, I sing mezzo soprano). My gender dysphoria was always oriented towards those strong males, of who I was supposed to be one, but never could mange.
I also never developed a clear gender identification, and I still don't have on. I want to be a woman, very bad, but I can go as a guy for days in a row if it is of advantage to me (car places, Home Depot, etc). I prefer to go as a woman, but guy mode will not cause any dysphoria to me. I don't think that this will ever change, because part of me will always be a guy.
I also have no depression, or hardly any, and can get out of a depression period by pulling myself out by the neck.
How is this with you guys/girls, am I alone with this or do you have similar feelings?
Quote from: Dietlind on December 04, 2018, 09:58:15 PM
I wonder about another thing, or a few things, and I don't know whether it is because of intersex or if it is just me.
I can't remember that i ever had this kind of dysphoria for my body or body parts. I kind of knew always that I was living in the right body, I was just robbed of my genitalia. That my body was right became obvious when puberty came around. My peers started to look like apes, and here was little me without a hair on the still baby skinned body and still singing soprano (now that I am old, I sing mezzo soprano). My gender dysphoria was always oriented towards those strong males, of who I was supposed to be one, but never could mange.
I also never developed a clear gender identification, and I still don't have on. I want to be a woman, very bad, but I can go as a guy for days in a row if it is of advantage to me (car places, Home Depot, etc). I prefer to go as a woman, but guy mode will not cause any dysphoria to me. I don't think that this will ever change, because part of me will always be a guy.
I also have no depression, or hardly any, and can get out of a depression period by pulling myself out by the neck.
How is this with you guys/girls, am I alone with this or do you have similar feelings?
My gonads were neither fully male nor female. "Mixed" is the word they used, but they were far too male like for my liking. I got them fixed :angel:
I was also reared as a boy, but developed as a girl.. needless to say I had to change a few things there too. "Dysphoria" though? Not exactly. Just.. I wanted everything to agree with the internal image I had of me. I still do.
Just my thoughts if it helps. ;)
Quote from: Doreen on December 05, 2018, 07:53:59 PM
My gonads were neither fully male nor female. "Mixed" is the word they used, but they were far too male like for my liking. I got them fixed :angel:
I was also reared as a boy, but developed as a girl.. needless to say I had to change a few things there too. "Dysphoria" though? Not exactly. Just.. I wanted everything to agree with the internal image I had of me. I still do.
Just my thoughts if it helps. ;)
Thanks, I feel as If I am reclaiming my original body. I did not really develop into anything. I basically stayed partly pre-puberty. I kept the soft skin and did not develop any secondary male or female sex characteristics (except some weak facial hair growth). I am told that I am now finishing my puberty, and that is he reason hat I am growing boobs. It seems that i should have been a girl, and all my genome indicates that i was more female than male, all the time!
And now I want my body, respectively the genitalia that I should have had, and be a woman!
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.
Quote from: Jessicauk on December 06, 2018, 12:21:13 AM
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.
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!
Quote from: HughE on November 24, 2018, 07:54:43 AM
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...
Quote from: Doreen on December 06, 2018, 02:29:32 PM
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 🤔😑
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.
Quote from: kristiM on December 08, 2018, 09:49:25 PM
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 🙈
got it! :)
where are they?
They are just above my belly button, almost exactly symmetrical one either side on my front I'm still struggling to link pics
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!!!
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
:) :laugh: 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! :laugh:
Quote from: Myranda on December 06, 2018, 03:38:32 PM
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.
Quote from: Jessicauk on November 30, 2018, 05:27:19 PM
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!
Quote from: HughE on December 11, 2018, 05:28:58 AM
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.
Quote from: Myranda on December 11, 2018, 05:20:37 PM
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.
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.
Quote from: Doreen on December 14, 2018, 11:12:59 PM
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!
Quote from: Doreen on December 14, 2018, 10:28:33 PM
'
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.
Quote from: Myranda on December 18, 2018, 01:50:32 PM
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.
Quote from: Doreen on December 19, 2018, 09:57:36 PM
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...
Quote from: Doreen on December 19, 2018, 09:57:36 PM
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.
Are you sure they left staples inside your body?
This was not standard procedure even in the early 90's not. Staples were used for closing the skin, but inside they used sutures (the polyvinyl alcohol ones that did dissolve in the body). Staples are to critical inside, because they could migrate away from the closure and poke into other organs.
Quote from: Dietlind on December 19, 2018, 10:21:36 PM
Are you sure they left staples inside your body?
This was not standard procedure even in the early 90's not. Staples were used for closing the skin, but inside they used sutures (the polyvinyl alcohol ones that did dissolve in the body). Staples are to critical inside, because they could migrate away from the closure and poke into other organs.
I had an inguinal hernia repair around 2009 and they used staples. Must be common in the US still.
https://photos.app.goo.gl/nJknvThd3X9ncdJo7 (https://photos.app.goo.gl/nJknvThd3X9ncdJo7)
Quote from: josie76 on January 09, 2019, 03:44:14 AM
I had an inguinal hernia repair around 2009 and they used staples. Must be common in the US still.
https://photos.app.goo.gl/nJknvThd3X9ncdJo7 (https://photos.app.goo.gl/nJknvThd3X9ncdJo7)
Sometimes staples are the only way to close a surgical wound, because there is no suitable tissue around for securely holding the stitches.
I don't know why staples were used in your case, but it should not be the common way to close an internal wound.
Quote from: Dietlind on December 19, 2018, 10:21:36 PM
Are you sure they left staples inside your body?
This was not standard procedure even in the early 90's not. Staples were used for closing the skin, but inside they used sutures (the polyvinyl alcohol ones that did dissolve in the body). Staples are to critical inside, because they could migrate away from the closure and poke into other organs.
I asked the ob/gyn (2nd lap), stated & took pictures of my uterosacral ligaments. Stated they're in the right location .. er.. correct me if I'm wrong? Uterosacral ligaments I know from anatomy holds up the uterus & is attached to it & the sacrum. Without the uterus you probably wouldn't have it??? She still couldn't find the 'mullerian remnant' however. Frustrating to say the least. Pain reminds me its still there. I also have 'omentum adhesions' which were pictured too but they're higher up in the abdomen than the actual pain location. Pain can defer, but I find it unlikely in this case.
https://www.fertstert.org/article/S0015-0282(07)02415-6/fulltext
Anyways ya I have staples inside along with mesh on the left side and palpable internal scar tissue. She also stated I had repair done on the right and noone ever told me. I feel twinges there too sometimes.
Quote from: Doreen on January 28, 2019, 05:39:02 PM
I asked the ob/gyn (2nd lap), stated & took pictures of my uterosacral ligaments. Stated they're in the right location .. er.. correct me if I'm wrong? Uterosacral ligaments I know from anatomy holds up the uterus & is attached to it & the sacrum. Without the uterus you probably wouldn't have it??? She still couldn't find the 'mullerian remnant' however. Frustrating to say the least. Pain reminds me its still there. I also have 'omentum adhesions' which were pictured too but they're higher up in the abdomen than the actual pain location. Pain can defer, but I find it unlikely in this case.
https://www.fertstert.org/article/S0015-0282(07)02415-6/fulltext
Anyways ya I have staples inside along with mesh on the left side and palpable internal scar tissue. She also stated I had repair done on the right and noone ever told me. I feel twinges there too sometimes.
Stapling ligaments could be OK, because ligaments don't really grow solidly back together, and a matrix has t be introduced that makes them interweaving into it and thus grow back together. I still have never seen this done with internal staples, non dissolving suture were mostly the attachment system of choice. But I was not present at the surgery an don't know the reasons why they did it.
One probably will never find out who played around inside you for what reason. But it should be possible to find the source of the pain. Have you ever thought about to go to the Mayo Clinic in Rochester, MN, and have them turn you inside out?
It mega sucks if you have to live with constant pain, if it seems to have a real source!
Quote from: Dietlind on January 28, 2019, 10:31:32 PM
Stapling ligaments could be OK, because ligaments don't really grow solidly back together, and a matrix has t be introduced that makes them interweaving into it and thus grow back together. I still have never seen this done with internal staples, non dissolving suture were mostly the attachment system of choice. But I was not present at the surgery an don't know the reasons why they did it.
One probably will never find out who played around inside you for what reason. But it should be possible to find the source of the pain. Have you ever thought about to go to the Mayo Clinic in Rochester, MN, and have them turn you inside out?
It mega sucks if you have to live with constant pain, if it seems to have a real source!
That radiologist that read my initial MRI suggested Mayo or Duke. I went to Duke, and the radiologists there sucked that read my CT scan. Refused to comment on the reproductive system whatsoever. Took months of badgering the reproductive endo for the radiologist to give me a very poorly written reply... through the same endo. A huge waste of time. I'll probably try Mayo next, but its so far away :( The reproductive endo there also gave me 3 diagnosis (17 alpha hydroxylase, 5 alpha reductate, PAIS), but said 'none of it matters as it has no impact on your long term health'. Utter bs. Its obviously having an impact... chronic pelvic pain, abdominal guarding, osteoporosis, etc.
Quote from: Doreen on January 30, 2019, 05:50:45 PM
That radiologist that read my initial MRI suggested Mayo or Duke. I went to Duke, and the radiologists there sucked that read my CT scan. Refused to comment on the reproductive system whatsoever. Took months of badgering the reproductive endo for the radiologist to give me a very poorly written reply... through the same endo. A huge waste of time. I'll probably try Mayo next, but its so far away :( The reproductive endo there also gave me 3 diagnosis (17 alpha hydroxylase, 5 alpha reductate, PAIS), but said 'none of it matters as it has no impact on your long term health'. Utter bs. Its obviously having an impact... chronic pelvic pain, abdominal guarding, osteoporosis, etc.
There are Mayo Clinic subsidiaries in Florida and arizona.
would that be better for you?
I prefer the Minnesota one, because that is where most of the specialists located. I am a patient there for over 30 years, and I worked there quite a bit to run experiments (we have a cooperation for that stuff).
rochester has a pretty large airport, and there are megga many hotels round the Mayo campus, with shuttle services to the different buildings.
If it would not have been for the Mao, i would be sitting in a wheelchair with bags for bladder and bowel exits at my side.