Jump to content
  • Welcome to the TransPulse Forums!

    We offer a safe, inclusive community for transgender and gender non-conforming folks, as well as their loved ones, to find support and information.  Join today!

Advice for treatment


chipped_teeth

Recommended Posts

Hi there. For the last several years I've been questioning whether I have an intersex condition, but I've been hitting dead ends and would like advice on how to move forward. Whatever is going on is causing me a lot of physical pain, not even counting the bullying and harassment I recieved as a kid. I'm providing a lot of details in hopes that somebody recognizes the symptoms or knows what to look out for.

Around 5 or 6 I started growing a lot faster than other kids, by 11 I was already being mistaken for a young adult and was one of the tallest kids at my elementary school. I also showed signs of hormone imbalances, I was assigned female at birth but by that age also had dark and thick body hair and bad acne, a C cup breast (I was not overweight at the time, they stopped growing size D at 13), moodswings, fatigue, having irregular and debilitatingly painful periods, and both opposite extremes of sex drive. (these symptoms never went away and some have gotten worse).

I've been told in vague words that reproductive issues run in the family (endo, pcos, miscarriages, one of my cousins has an unspecified "birth defect") and that I would probably have difficulty bearing a child. I also remember that I was brought to a gynecologist in middle school and remember being offered some kind of intensive hormone therapy, but my mom insisted I just take birth control, as it was cheaper. This only made me gain a lot of weight a lot faster and have fewer but heavier periods, so I was not on them for long. Every time I asked for further details about the test results or what issues specifically ran in the family, I've been brushed off or told she didn't know. I also found no record of these tests on my online patient portal. I've also been subject to severe medical neglect in several other ways, so this isn't unusual persay.

I started testosterone therapy on my own a couple years ago, and within I am not joking, a week, my acne was already clearing, my voice began getting deeper, and bottom growth was visibly and tactiley noticeable. When taking the preliminary blood tests, the doctor did comment that I had more testosterone than expected already. Additionally while on T I was finally able to eat a normal amount without gaining weight, which I have never been able to do, and I had much fewer problems with joint pain and fatigue. I was only able to continue T for less than a year, as I stopped being able to afford it, and since then my acne has come back worse and so has the fatigue and weight fluctuation, plus the pain that radiates throughout my entire body while menstruating...

Since being an adult I have tried to seek more help, once after being rushed to the ER with lower abdominal pain that I thought was an organ bleed, but while I was out my mom told the doctors that I was abusing laxatives (not true!) and so they only treated me for dehydration. I was also scheduled for and driven to a gynecologist appointment without my consent, where asking for some kind of genetic test or ultrasound only led to being pressured into a pap smear that I wasn't ready for. I'm really at the end of my rope, it's like nothing I ask will get me any answers, but even if I don't have an intersex condition I would like to know if there is some other hormonal disorder causing me all of this pain, fatigue, and anxiety. Not even asking to look into PCOS or Endometriosis has gotten me any real help, in fact having taken testosterone at all seems to have convinced doctors that I'm okay with it if I do have cysts or Endo.

One of the problems I've had is that my mom is nosey and lacks boundaries or respect for my autonomy due to me being disabled, but when I make appointments and pay for them by myself, I usually don't have any trouble with these tendencies.

I guess I need advice. Should I schedule an endocrinologist? Should I go to a different gynecologist or will I be strongarmed into a pap smear again? Is there some kind of secret code word that doctors have to hear before they'll xray or ultrasound your reproductive system for you? Any help at all is appreciated.

 

'm sorry if any of this is worded in a crude or gruff manner, as you might imagine it's been a frustrating thing to deal with for all of this time

Link to comment
  • Admin

My first thought here is to contact a local university's medical school / teaching hospital and consent to being involved in one of their research projects.  You are giving symptoms from several Intersex conditions but without testing that the medical facility could test you for without the routine and invasive  procedures you do not want.  I am sad to say this, but it also sounds like you need to investigate ways to get away from your mother and into a better living environment.  Your mother seems to have serious hangups about your potential IS, those are usually from a sense of shame and maybe blame for them, especially since you say you are otherwise disabled as well.  I will give a suggestion that you try and contact a local LGBTQ Community Center since they deal with professionals who know the Trans and IS communities better than most medical folks do. 

Link to comment
7 hours ago, VickySGV said:

My first thought here is to contact a local university's medical school / teaching hospital and consent to being involved in one of their research projects.  You are giving symptoms from several Intersex conditions but without testing that the medical facility could test you for without the routine and invasive  procedures you do not want.  I am sad to say this, but it also sounds like you need to investigate ways to get away from your mother and into a better living environment.  Your mother seems to have serious hangups about your potential IS, those are usually from a sense of shame and maybe blame for them, especially since you say you are otherwise disabled as well.  I will give a suggestion that you try and contact a local LGBTQ Community Center since they deal with professionals who know the Trans and IS communities better than most medical folks do. 

Thank you very much for the advice, I have been attempting to contact local LGBTQ organizations (and making steps to move out with some roommates in the nearish future), though understandably they're choosey about how much information they give you when you ask about meetups and support groups. I will continue looking into it. I may need to see a geneticist for another unrelated condition I am being evaluated for, so there's potential I will receive answers from that as well. Again, thank you!

Link to comment

Good luck @chipped_teeth . I agree with Vicky's advice, and just wanted to lend you more emotional support. I hope you'll be able to gain more autonomy so that you'll be better empowered to advocate for yourself. 

 

My opinion is that unless you get a specific recommendation for a gynecologist who has experience with intersex conditions, you may likely risk being "strongarmed" into a pap smear if you have not had one recently - gyns will necessarily tend to operate within their own traditional treatment paradigm. Consider also reaching out to some intersex organizations such as these:  https://interactadvocates.org/resources/intersex-organizations/ to see if they can advise you on knowledge doctors in your area. 

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Who's Online   5 Members, 0 Anonymous, 89 Guests (See full list)

    • Susan R
    • awkward-yet-sweet
    • Ashley0616
    • Betty K
    • Stefi
  • Recently Browsing   0 members

    • No registered users viewing this page.
  • Forum Statistics

    • Total Topics
      80.5k
    • Total Posts
      767.2k
  • Member Statistics

    • Total Members
      11,942
    • Most Online
      8,356

    taxicab
    Newest Member
    taxicab
    Joined
  • Today's Birthdays

    1. Amyjay
      Amyjay
      (58 years old)
    2. bettyjean
      bettyjean
    3. Breanna
      Breanna
      (52 years old)
    4. Emily Ayla
      Emily Ayla
    5. JET182
      JET182
  • Posts

    • Susan R
      The experience was the same for me @April Marie. I slept much deeper and I woke up each morning feeling so much more restful sleeping with forms solidly in place. For me, wearing breast forms at night started when before I was a teenager. I had no access up to modern breast forms and certainly no way to buy mastectomy bras back then. I wore a basic bra my mom had put in a donation box and two pairs of soft cotton socks. I have some crazy memories of things I did in my youth to combat my GD but regardless, these makeshift concoctions helped me work through it all.   All My Best, Susan R🌷
    • awkward-yet-sweet
      Colorado isn't exactly a Republican place, and won't become one anytime soon.  I think those folks might be better off not spending their time playing Don Quixote.    We certainly have our share of California "refugees" moving into where I live, so I wouldn't be surprised to start seeing Coloradans too.  I suspect the trend over the next few years will see the blue areas getting more blue and the red areas getting more red as anybody who can relocate tries to find a place where they fit better.   
    • awkward-yet-sweet
      Well, at least it'll be a place some folks could choose.  Options are a good thing.
    • awkward-yet-sweet
      My family would have gobbled that jar up in a minute or two.  When we do have pickled herring, its usually for Christmas.  I didn't grow up with that particular dish, but I grew up in a Greek family so I like just about any kind of fish if I can get it.  However, ocean fish and freshwater fish taste so different.  We usually have more catfish and tilapia to eat than anything else.    What I can't quite get used to is the tons of cabbage my GF insists on eating.  When you live with a Russian, there is always cabbage soup.  Always.  When I first moved in with her, breakfast was "shchi" for soup and either bread or "kasha" which is a bowl of boiled buckwheat with butter and salt.  Those dishes can be made in any number of ways, some are better than others.  In the winter, it can even be salty and sour like kraut.  Not exactly sauerkraut, but packed in tubs with vinegar and salt so it keeps partially for the winter.  But I drew the line when the cabbage soup included pieces of fried snake one day.  😆
    • Ashley0616
      Good evening to you as well @Mmindy   That is awesome that you have support from her side. My dad has communicated with me once and that was because he was forced to. His new wife wanted to spend time with my kids. He hated me so much he was in the process of taking my rights away as a parent to my two boys. He was talking to a lawyer and I called him out on it. I don't love him at all. I'll respect him because I wouldn't be here without him but I wished I had another father. My uncles don't talk to me and unfriended me on Facebook. Almost all cousins except for two are still Facebook friends but they don't give me any support. My mom said she won't support me with that but she has said that she loves me. I have nieces and nephews that are still Facebook friends but they have yet to talk to me. I have one sister that supports me out of three. The other's disrespect me by deadnaming me. They have never called me their sister. I think for them they think it's still a phase. They don't ask questions about me being trans. I have to bring it up and on the look of their faces they don't look comfortable about it. 
    • Mmindy
      Good evening @Ashley0616,   I just got offline with HP tech support trying to get my printer tool box icon locked to my tool bar. This is one of the most important features of my printer that I like because it keeps track of ink, paper, and scanned documents. I'm diffidently not a computer geek.   I'll catch up with the other bookmarks next week. We leave to go home for the Easter Holiday with our families. Saturday with her side, and Sunday with my side. What's odd about that is I'm out to more of her side and they're reluctantly supportive. My side on the other hand are less supportive, and my sister just under me in age will not acknowledge my being there. She will be constantly moving to keep from dealing with me. I'm dead to her.   Hugs,   Mindy🌈🐛🏳️‍⚧️🦋  
    • Ashley0616
      I used to follow baseball and the team I would cheer for is Boston Red Sox. My favorite player was Papi. He was an awesome guy and even held a child during the National Anthem. I haven't watched baseball for a long time. It just died off to me. 
    • Ashley0616
      That stinks that nothing transferred, and no bookmarks were saved! 
    • Ashley0616
      I'm doing patches for now but I think soon I'll go to shots because it's hard to alternate when you are doing two xx patches at once. Unless she gives me Estradiol and progesterone
    • Sally Stone
      Go Cleveland Guardians!  I love baseball and I loved playing it when I was younger.  
    • Sally Stone
      My view is we are "dependent" on government, because as a society, we are too lazy to stay actively involved. So, we let politicians do our bidding for us.  I think we'd be in a better place government wise if we policed the actions of our politicians.  We elected them; they work for us.  Sadly, we are allowing them to run amok.  We are where we are because we have chosen to let politicians make all decisions without us.  Remember "by the people, for the people?" That was the intent of our democracy.  Today, however, it is "by the politicians, for the politicians," the people be damned. 
    • Mmindy
      "Play Ball! Batter Up!" is the closing line of the National Anthem as far as I'm concerned. It's the call of the Home Plate Umpire and signals the start of the game. I grew up in the TV and Radio broadcast of the St. Louis Cardinals. Harry Caray, Jack Buck, Tim McCarver, and Mike Shannon, were the voices on my transistor radio. KMOX 1120 AM pushing 50,000 watts of Class A clear-channel non-directional signal. It could be picked up all across MO, IL, IN to the East. KS, OK, CO to the West. IA, MN to the North, and KY, TN, AR to the South. There has always been a rivalry against the Chicago Cubs, in the National League. As for the American League, I have to pull for the Kansas City Royals. I've also been a Little League Umpire, and fan of everything the Little League stands for. Going to Williamsport, PA and seeing the Little League World Series is in my top 10 things to do on my bucket list.   Mindy🌈🐛🏳️‍⚧️🦋
    • Mmindy
      Good evening everyone,   I don't think my mother ever cooked a meal that I didn't like. We also had a kitchen where mom fixed the food, dad filled your plate, and you eat it. It wasn't until our baby brother was born that we could have Pop-Tarts for snacks. Before that all snacks had to meet mom's approval, and in her opinion wouldn't prevent you from eating supper.   Well my day started off on a good note, but has become frustrating because my IT person didn't transfer my saved videos I use for teaching. Then I found out that they didn't save any of my book marks for websites I use frequently.   Best wishes, stay motivated,   Mindy🌈🐛🏳️‍⚧️🦋
    • MaeBe
      The number is relative to method of deliver, the time of the dose, and when the blood is drawn. However, I do want to keep away from DVT and other potential issues. I assume I may be getting backed down from my current dose, but my doc told me to stick with the higher dose, so? I also wonder if this has anything to do the my breast growth and mental changes that have been happening over the past few years, like I have some estrogen sensitivity so a little goes a long way or something? I don't have enough data to postulate, but who knows!   With weekly, subcutaneous, shots you expect to see big swings of serum level estradiol from shot to peak to trough. My doctor is interested in mid-week testing (for E and T levels only), which would be post-peak blood serum levels but they will be higher than trough. Most, if not all, resources I've seen online is to measure at trough (which I might do just to do it next time) along with a SHBG, LH, and other metrics.   This is from transfemscience.org for Estradiol valerate in oil, which is very spiky compared to some other estradiol combinations. It's also for intramuscular, which will have a slower uptake and is usually dosed in higher volume due to the slower absorption rate from muscles. They don't have subcutaneous numbers, which I would expect to see similar spikes but higher levels at similar doses due to the relatively higher absorption rate direct from fat.   Are you doing pills, shots, or patches? And when you do get your levels checked are you getting that done when your levels are lowest or some other time?
    • Willow
      Both of my parents were from the “North Shore” of Boston.  My mother Lynn and my father Swampscot.  They had an early 1900s Scots-Irish New England diet.  My sister and I were born in the 40s in Ohio well away from New England seafood and in an area where food was more German and Polish.  My first experience with liver and onions was during basic training.  They ate salt cod but never forced us to eat it same with oysters.  My dad ate oysters but my mother wouldn’t.  Anyone who ever ate an oyster can figure that one out.  I grew up eating lamb.  My wife won’t touch it. I love brazed ox tail, again no way. And the list goes on.  
  • Upcoming Events

Contact TransPulse

TransPulse can be contacted in the following ways:

Email: Click Here.

To report an error on this page.

Legal

Your use of this site is subject to the following rules and policies, whether you have read them or not.

Terms of Use
Privacy Policy
DMCA Policy
Community Rules

Hosting

Upstream hosting for TransPulse provided by QnEZ.

Sponsorship

Special consideration for TransPulse is kindly provided by The Breast Form Store.
×
×
  • Create New...