hello to all, I recently discovered this site while researching intersex of which I also recently discovered as the definition of my birth condition. I knew my whole life of my mess, just not the proper name. I just wish I knew someone else or some sort of support.
I am grateful for this site and as well contributors of this site who have given me more information then a lifetime of doctors. I am a 59 year old male but also someone who has grown up with the confusion and lies, disinformation and information withheld from me explaining my abnormalities since birth regarding physical and mental conditions especially my genital ambiguity, growing up internally a male, externally sort of male but never developing mature masculine features in fact, being constantly confused with female even then, never going through puberty or developing any normal adult male features, being sterile, constantly being confused as a twin of my younger sister, and the only child in my family to be named after a person in the Bible, of which it took me quite a while to put it together.
I am being treated presently for numerous and some very severe neuro-muscular disorders and being treated by a university with non-approved treatments. With that comes many secondary conditions which causes many head scratching shoulder shrugging moments between me and the docs always seeking answers.Now we are learning they seem to be related to the intersex condition of which I suspected, and asked but got shrugged shoulders because I asked the wrong way. But just within the last few weeks my urologist sent info on my web portal, references of endocrines disease with specifics in intersex and underlying areas to study relating to me.
Bottom line, I was always internally a male, externally people confused me with male and female having never gone through puberty, produced testosterone, developed male masculine features but yet never understanding why. Never knew the normal feeling or look of male genitals, having undeveloped testicles in my abdomen, no scrotum, micro penis and basically an overall feminine body.
Now, I am not here to whine, I have long ago gotten over being the spectacle even to ignorant doctors, this has been an enlightening couple years for me, I just felt a need to give thanks for the information provided by the site and contributors.
a very big thank you....
Welcome DustyDan, so glad you are here. I can only imagine the emotional stress you have had to deal with. I hope you feel free to join in, contribute, vent, and/or help others. My name is Moni. I hope you are able to get a handle on your health concerns. See you around the site I hope.
People don't like to think outside of binary gender system. Seems you're okay now, it's cool :) Welcome :)
@dustydan DustyDan
I am so glad that you have become a member of Susan's Place and that you have shared your introduction posting with other members here on the Forums.
I am thinking that you may lots more questions and concerns, this is the right place for you to be to find out what others have done that may have been in your circumstances.
Be aware that there are a lot of members here that can identify with your situation as you feel free to share it.
Please allow me to warmly WELCOME you to Susan's Place.
You will find this a safe and friendly place to share with others and to read about others similar trials, tribulations, and successes.
It is nice that you had signed up so you can share with others and involve yourself with some give and take with other like-minded members. When frustrated or if you have successes you can share it here if you wish and receive support from others and offer support to others. ....
***It's a very good chance that you might find that you will make some new friends here.
Please come in and continue to be involved at your own pace.
I have included Important LINKS that will tell you about Susan's Place. Included there is information about the site that will help you navigate around and best utilize the features here.
Please look closely at the LINKS in RED, answers are there to many questions that new members ask.
Again, Welcome to Susan's Place.
Danielle
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Things that you should read
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Hi DustyDan :icon_wave:
Welcome to Susan's Place :) Glad to have you here, join on in the fun
Hugs
V M
Thank you all for the welcome. I am not much of a poster. I do have many questions and am sorting things out now medically as we connect dots. I may be able to contribute , but so many here seem much more educated on things then me any ways, thanks for the welcome.
Hi Dusty,
I think you have been given an incredible gift. With the body you describe your wardrobe can have much more diversity than average. You can play both teams with confidence that no bulges will break our profile.
Enjoy your uniqueness!
Feel free to ask your questions. There's a lot of people with different experience and same goals :D
HI Dusty.
Feel free to look up AIS / DSD. (Short for androgen insensitivity syndrome / disorders of sex development).
There are multiple intersexed support forums on facebook and elsewhere and a network of doctors that are actually understanding of intersexed health conditions and problems.
They still haven't completely puzzled mine out yet, but at least they're trying.
Quote from: Jin on August 23, 2018, 10:29:13 AM
Hi Dusty,
I think you have been given an incredible gift. With the body you describe your wardrobe can have much more diversity than average. You can play both teams with confidence that no bulges will break our profile.
Enjoy your uniqueness!
This made me chuckle, its so true... But there was a time a bulge is all I ever wanted and one was required, especially in high school and beyond .. actually life altering because of the lack of... :)
Quote from: Doreen on August 23, 2018, 12:19:17 PM
HI Dusty.
Feel free to look up AIS / DSD. (Short for androgen insensitivity syndrome / disorders of sex development).
There are multiple intersexed support forums on facebook and elsewhere and a network of doctors that are actually understanding of intersexed health conditions and problems.
They still haven't completely puzzled mine out yet, but at least they're trying.
Yes thank you for the info, we know I definitely fall within the perimeter of ..
extra Chromosomes, ( AIS (PAIS)Partial or incomplete AIS :) ,Reifenstein syndrome
Neonatal manifestations, Hypogonadism , MEN l, several neuro muscular disorders ect.... . (PPSH) . I am presently being treated for several Neuro muscular disorders, one which is rather severe and had me on life support for quite a long time. I have not been diagnosed as Kennedy's although that will be brought up next visit with neuro as we are still chasing issues.
It seems my system fully crashed and we are unwinding the mess. There was a time it was confusing as you get plasma pharisees every other day, wear a vent and told there is no cure, no reason, no explanation and the you discover there actually is a reason. So fortunately, finally my urologist, cardiologist, endo, and GP PC gets it and we are unwinding.
I have searched some of the support groups you mention, I dont seem to find active ones. But, am limited in vision..