Endo visit

[kate.pixiecat]

I've been to visit the endocrinologist, who was easy to talk with, thank god. He's run some tests (including a synacthen test) and I don't have 17-hydroxylase CAH as suspected, which is a relief. I asked him what could have caused my unusual development and he said that something must have happened that was out of the ordinary, but nothing much that could be tested for because I had surgery. It means that it will be a mystery forever - although I have my suspicions, nothing will be confirmed. I'm still trying to make sense of what that means to me. On a practical level, it probably doesn't mean very much. But I've always held on to the idea that I'd have a name for it, and now I have to let go of that. Probably in a few weeks I'll feel more certain of things... I hope.

[peaceandparty]

hi

its terrible in this day in age to still have mysteries!

especially when you would like to have a bit more vaguer information coming from a professional!

this is not towards you personally person above!
but to all the countless others that hear alarm bells ring when they are told similar things from professionals
telling you things like"oh you are unusual!"(very blooming comforting!thanx dr.!)

so i hope that many people who go untreated
(except in cases where the doctor does all they can....yet you leave not knowing enough about the reasons why you look or feel a certain way!)
will not go on unheard of....
so that when a "similar " - "unusual" - "medical case" comes along with "similar" "complaints"...then they should be well prepared for people coming into say that they are a large majority of the population that have symptoms of a category called intersex...

very confusing i know
i will do another post

but in any case ,we people do not generally "complain"(ask for what we deserve in a nice polite way)enough with our doctors
when we pay a doctor...and end up educating the doctors on our "unusual condition",so they learn and earn more (LeArN)from us....!!!
and what do we get in return.....unanswered questions because the high almighty local or state doctor doesnt know!!
i question....!!!!........go figure!!!

i support you 100%
if i can assist you in any way at all please let me know
i feel for you(no violins needed....because then we need an orchestra for the rest of our "similar" stories

peace be with any of you in this situation

[Kailana]

just curious, but you might want to look for yourself. With my experience with my local dr's I have repeatedly been told everything is normal but when i look at the lab reports nothing ever is. Besides you may just have another form of CAH, one that wasnt tested for.

[prince....ss?]

Kate.pixiecat,

I also don’t have a cause of my condition. I don’t have “one of the conditions” so that will always be a mystery for me also. It would be nice to know what happened but in the end what would it mater. We still have to live life with what we have and don’t have. So you have a good idea, let it go for now.

I also have another health mystery. I have severe osteoporosis along with that I have joint pain and mussel pain and I’m tired all the time along with other things that make me feel very old at 45. In fact my health is the reason I requested my medical records in the first place. Ok, the whole hermaphrodite thing threw me under the bus for a while but now I’m back on track for getting my health back. None of the doctors know why I’m having all this pain and why it’s quickly progressing to a point that my job is difficult to perform any more.

Hopefully I may have stumbled on the answer to my health problems. When I was 18 the US Navy gave me breast implants. Now some 27 years later I think they are making me sick. I have many of the complaints other women have with implants. They say these things have a 100% fail rate at 10 years. So I’ve decided to have my implants removed. I don’t know what will be left when they are out but I just want my health back. There is hope my health will improve once they come out. But I see the plastic surgeon on Oct 1 to start the process of removal.

I can’t help putting the blame back to my original surgery and the lies. I was so busy trying to prove I was a real woman (real women have boobs) that I allowed these things put in. If I only knew then what I truly was I don’t think I would have had the implants put in. So I guess I still resent the fact that I was not told the truth and allowed to make decisions about my own health. Now I suffer from its consequences.

[peaceandparty]

i think you are so close to xxy with that description
many xxys would disagree
but i am telling you!
lol

you were on xxytalk looking for answers a while back werent you?!?
at the time when i wasnt kicked off (still a mystery to me that crazy condition they have..lol)
you see...i have osteopaenia and i believe i have arthritis even tho its unconfirmed because id ont see doctors anymore too much...its too senseless and cents-non-worthy!!

and if i hadnt have gotten my masectomy maybe i would have types of breasts now
because i was told that my breast tissue would increase by me taking testosterone
and i was getting slagged in school at shower time...boys telling me i needed a bra

so there are a lot of resemblances between you and me i see
and between you and the others

and i believe there are many people walking around with mysteries on theor shoulders
either adults or parents of those adults

lets end the suffering and get people knowing about this asap

good luck people
for intersex awareness day coming up

[Melisma]

Originally Posted by prince....ss?

Kate.pixiecat,
I also have another health mystery. I have severe osteoporosis along with that I have joint pain and mussel pain and I’m tired all the time along with other things that make me feel very old at 45.

Wow, you've pretty much described my life in a nutshell there! The osteoporisis is understandable, of course. And I've had psoriatic arthritis since childhood. But the muscle pain and fatigue, nobody's been able to explain. My endocrinologist finally gave me a prescription for methylphenidate, because I was falling asleep at my desk almost every day.

[Kailana]

About being tired all the time, and muscle and joint pain aches. I am curious because as i mentioned many times before that after my surgery in 2002 i deteriorated quickly, couldn't do any yard work, carrying a grocery bag from the store to my truck killed me. Any sort of physical activity and my muscles ached as though i had just worked out for a cpl of hours, but in all reality i just did a little physical activity for a cpl of minutes. Sleep became nonexistent, night sweats, hot flashes, which happened most nights, only to wake up in the morning barely able to move, arms legs felt numb and couldnt support any weight, a cpl hours awake and id be exhausted and have to take a nap, 3-4 hrs of sleep and id wake up again, barely able to move, sort of like if i had slept on my arm and put it too sleep, but for 5 years now its my legs and both arms.

Since going on hrt the night sweats and hotflasshes are gone, the muscle and joint fatigue/ache is gone, but i still wake up feeling like a zombie, I have no strength im my limbs. I know its possible in my case that this is part of my multiple back injuries, but i was curious about Melisma falling asleep at her desk. Im usually awake for 5-6 hours tops, before i am in desperate need of sleep. i am also having some issues with my red blood cell count and am taking iron, ferrous sulphate which has helped some with my muscle fatigue, but as i still havent got a clue as to why everything happened, as i mentioned not so long ago, i have funny lab work, that really doesnt get discussed. Its like i get told to try this or that, but my doctors arent really looking for a cause of my problems. They wont acknowledge me as being IS anymore. Which does add a great deal to my distress, and feeling of being accepted.

[prince....ss?]

My doctor ran out of tests and ideas. He told me if “I” have any further ideas to let “him” know!!!

I told him about the silicone poising from my implants and he was more concerned about my mental health when I have them removed. It’s like losing an arm and you need to prepare for the loss. I did not have the heart to tell him about the other body parts removed when I was an infant. Talk about loss!!!

I will have a flat chest but I hope to regain my health. If you had fake boobs I’d suggest having them pulled. Other than that you sound smart so do your own figuring and have the doctors test for it. Good luck if you find the mystery illness and let us all know

[kate.pixiecat]

Thanks for the replies everyone, I've also been troubled with tiredness etc, although I think it is probably my mental health medication causing it. Maybe at least I will lose some weight, not being on the steroids anymore. I do wonder sometimes if a low level androgen replacement might help the tiredness and I'm not sure if any research has been done on that? It's an interesting point you make about implants and I will make sure I keep it in mind.