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View Full Version : In a serious bind- need advice


MelissP
06-19-05, 09:46 PM
As I've posted already, I had my mri on may 3'rd. If anyone would like
to see some pictures, I just need some way of converting dicom files w/
lossless-compressed jpegs into something shareable. So far, the free SW
I've tried can't handle lossless jpegs.

The pics first went to a Dr Hadley; who proclaimed me female w/ uterus
ovaries, vagina, and labia. My labia obviously must be fused. Last january
they had a camera in my vaginal area, so I know it's there. Personally, I
don't care too much whether I've got ovaries/uterus or not. All it's good
for is to explain the pain and bleeding of these last 8 years.

My PCP lied to me and said that there was some unavoidable delay on my
report. She later admitted that she sent it back and told them it wasn't
possible, then she told them what the report should say.

I guess Dr Hadley didn't change his mind, so a second report came from a
Dr Manzi. He said the thing at the top of my vagina was a prostate, that
there were no ovarian structures, and that the vagina (etc) is because I
had m2f surgery already. Two probs with that- (1) I haven't had surgery
yet (2) what's causing the pain/bleeding? When I say there's been no ops,
I mean I never had any scars. My parents apparently were raising me as
a girl by age 1, but so far no one has told me why.

One of the kind people here put me in touch with a friendly ob/gyn, who
had her radiologist look at it, and from the couple of brief sentences in
the note to me; it seems that they agree with Dr Manzi about it being
some sort of out-of-position and disconnected prostate up top, but that
they appear to agree with Dr Hadley about the rest of the stuff being of
natural origin. I don't know what kind of condition could do that.

Meanwhile, both Dr Hadley, Dr Manzi (and my PCP) decided they don't
want to talk to me on this subject at all. I was able to get a conference
on this wednesday evening, but they told me up front they won't act in
any way unless I bring a copy of that ob/gyn's email to me. However, I've
been told by the kind person here at BLO that if I do that they will kick
my ass. I won't take the threat literally, due to size differences, but I'm
a peace-loving individual and I'm not willing to start feuds.

As of this last thursday, I finally got software included on the mri cd-rom
to work properly. It took some system tuning (fer shure). The viewer app
even includes a tool for taking instant measurments. Kewl. That internal
vaginal canal measures over 6 inches long and more than 1.5 inches wide.
So I severely doubt it's a segment of urethra. Also, I traced the path of the
{mullerian ducts} or {seminal vessicles} (whichever it is) and found that at
the end of each one there is oval-ish shaped body measuring just under
2 inches in diameter. So much for Dr Manzi's report, and maybe for the
ob/gyn's opinion as well. I don't know enough to say so authoritatively.
And the thing at the top of the vagina is hollow, with only the downwards
exit. But maybe there are prostates like that? And the natural labia were
quite spectacular.

Anyways, right now I'm pretty confused by all these options. I'll be going
into that conference on wednesday, and it looks pretty grim unless I can
uphold some theory of my anatomy. I need advice, because I don't know
what to think. Partial AIS and some forms of CAH can cause an XY to
develop with a natural vagina and labia. More common forms of CAH
could cause a sealed vagina, but what are the chances? And then I've got
people telling me about strange things like PMDS causing XY's with extra
ovaries, and rare syndromes involving mosaicism.

My only two concerns are (1) officially reporting the vagina and labia,
because that would make my upcoming surgery a hell of a lot cheaper;
and (2) some eventual hope of treating this cyclical pelvic carnage I've
been a victim of.

If anyone could spare some words of wisdom and other practical advice
to get me from point "A" to point "B", it would be much appreciated.

Thank you, in advance, for any answers. If there are none, hey we're all
mortal anyways.

Betsy
06-20-05, 07:17 AM
Seeking second and third opinions are your medical and ethical right.

http://www.ama-assn.org/apps/pf_new/pf_online?f_n=resultLink&doc=policyfiles/HnE/E-8.041.HTM&s_t=second+opinion&catg=AMA/HnE&&nth=1&&st_p=0&nth=8&

What they are doing is inappropropriate in regards to your current relationship.

Here's what you can do about it if you want:

http://www.ama-assn.org/ama/pub/category/5105.html

Based upon our previous correspondance, I told you those choice words (figuratively, of course) because you wanted to make some slight changes to what was written by that third doctor. Of course, you are free to ask the third doctor to write something but you cannot change her words in her email.

Betsy

MelissP
06-21-05, 10:17 PM
Thanks Betsy,
But I'm just fed up with waiting on things that may or may not matter
to my goals in life. I guess if no one want to talk, then I'll just send those
files to the surgeon who will hopefully be un-fixing me before the year
is done. Money will be available shortly, 100% certain. The recommends
have been promised for the next few weeks. Once there is an easy access
to the canal, it should be much better to verify things visually and by cell
sample. Will change nothing either way in terms of diagnosis, and I get to
have at least a blood gutter.

In other news, today I've sucked down enough salt to cause heart conditions,
and with that plus HC I still feel ready to pass out every time I stand up. I
have to logout. It's hard to see straight.

Sunshine1
06-22-05, 09:52 PM
An Endocrinologist is the one to help with anything to do with CAH.

best wishes,

Aimee

Sunshine1
06-22-05, 09:56 PM
For CAH-- it's about the bloodwork by Endo that it is done about the CAH over anything else.