sparklingdreams
09-27-06, 02:20 AM
After my last month of hell surrounding my C.A.H.,
And some questions about whether it is the one of the many D.S.D. (Disorders of Sex Development -or- Intersex conditions, which ever you prefer) that caused my ambiguous genitals. These questions started when I tried to have a misprint on my birth certificate corrected. I followed my state's rules and after several months of nothing happening, I had just kinda forgotten about it.
I'm starting to kinda repeat my last month's back story here... some may want to skip down a lil ways :arrow:
Then on the fifth of September, my world started falling apart, when I went to an Endocrinologist who I at first felt very comfortable about seeing. You can read my post "I'm excited... about seeing a new Doctor..." (http://www.bodieslikeours.org/forums/showthread.php?t=1891) for more about my feelings before my September 5th.
However my visit went terrible and was traumatic and triggered many memories of past abuse, from the father. To a certain extent I feel the Endocrinologist mis-represented her qualifications on treating C.A.H.; and especially with treating and understanding patients who are born with any of the D.S.D..
Logically I imagine she is simply completely uneducated about patients who are born with any of the D.S.D., but emotionally I feel lied to, deceived, violated, and even betrayed. Because not only did she expose her own ignorance about C.A.H. but she also contacted my P.C.P. / G.P. (Primary Care Physician / General Practitioner) and spoke with her about "proper treatment of women with C.A.H.". She did it in a round about way because after "interviewing" her I denied her request to speak with my Doctor, or send her office notes.
I explain my experiences and feelings about what happened next in my two posts: "I'm sorry & I was wrong. Hate is not to strong of a word for how we feel about Doctors." (http://www.bodieslikeours.org/forums/showthread.php?t=1896) and "Test results, denial of treatment... and loss of self." (http://www.bodieslikeours.org/forums/showthread.php?t=1905)
As I wrote I wrote the above postings I began having, kinda like, what felt like an emotional break down. I was terrified of being without my Cortisone & Florinef and ending up dying, or being stuck in hospital. I was almost equally terrified that my new Endocrinologist would want me to just like have all kinds of physical exams and all kinds of thing I was forced through growing up.
On top of that I felt like I was totally like loosing my mind, heart, & soul after a Karyotype test came back showing 46,xy. This test was at against how I felt, and because of this test my Doctor said that it meant "My previous Karyotype shouldn't have shown me as 46xx, that I shouldn't have my Uterus', Ovaries', Periods', Vaginal Canal's, my puberty shouldn't have been female, and I shouldn't be on three of my medications'.
So my Doctor gave me one last 30 day refill of my Cortisone & Florinef and said she "was afraid she simply wasn't capable or trained correctly to treat my C.A.H. ...", and that she feared she "was putting me at risk by continuing my current treatment's & medications' regimen." And basically she ended up giving gave me 30 days to live, of course that how it felt, though that's not exactly what she did.
:wave1: Okay I'm sorry about that, but I needed that, but now I'm done with my update's back story...
Now for my surprisingly good news :cfs_flowe
Today, I went to see my new Endocrinologist, Dr. Virginia Sarapura, at University Hospital (they're run through Colorado University). I was as preprepared, as much as possible, for what I expected to be another traumatic experience with yet another uninformed and undereducated Endocrinologist, at least when it comes to D.S.D. (formerly Intersex conditions) and C.A.H. (or at least my a-typical treatment's). I did have a little hope that she would be able to help me after Googling her and because she works' at University Hospital.
University Hospital's like Colorado's Mayo clinic, or maybe better. They've saved my life multiple times, I'm not sure how many times. Though I do know the saved my life when I was 20 after I suffered from liver & kidney failure; digestive, respiratory, severe yeast, & urinary tract infections; and a seizure followed by stroke. All of these ended up putting me in a comma for all of Feburary of 2000. I'm also seeing an excellent pain management specialist who is helping in the treatment of my Early-Onset Generalized Dystonia by performing my Baclofen pump surgery. But still I feared, more than anything, I would be forced to submit to the kinds of physically & sexually abusive ”exams” just to be sure I would be able to get my C.A.H. treatments' and avoid dieing or being hospitalized indefinitely.
To my complete surprise she was kind, polite, & respectful. She asked me about my experiences with & knowledge of my C.A.H. while growing up, and she was incredibly sensitive to my emotionally charged answers. She recognized my needs for all of my medications' and even gave me another reason for why I'm taking one of them, which made sense once she mentioned it, but it wasn't explained to me when I was first prescribed it, over nine years ago. She also calmed my fears and confusion about my Karyotype tests, she said that based on all the combined tests sonograms, x-rays, C.A.H. based androgen levels (21-hydroxylase), and my many hormone tests'. She couldn't have cared less about them. She merely asked a few questions about my menstrual cycle and etc. She ordered standard adrenal / hormone tests, liver tests, and then a thyroid test. We talked about all my treatment over the last nine years, everything from what my first Endocrinologist did and worked through to stabilize my adrenal system (my hormone levels) to changes that have happened in response to my Early-Onset Generalize Dystonia. She even discussed what the father did to me while growing from his abuse to the multiple stages of my genital mutilations, and seemed to kinda understand the trauma behind being mutilated.
I see her again on October 3rd to go over my blood work and discuss some possible changes to my birth control medications and other options for combining some of my medications into different types that may help with both issues with just one pill, instead of two. Though she made it clear though that she wasn't going to just like force any change or anything until my blood tests results' come back and she's sure what, if any changes, are needed. She was also completely comfortable with me asking a million questions and making my own statements, which (again) both often triggered a lot of emotionally charged reactions. She was also unbelievable cool about me actually knowing a lot about my C.A.H., but unlike any recent Endocrinologist I've visited in my recent past.
Her like number one concern is of making sure my health and entire adrenal system is working as best it can in combination with my medications. Another thing that was a wonderfully, and basically new experience, she actually knew more about C.A.H., in all its varieties, than I did. But the most important thing is that she understood why I was on each of my medications. Several times she even start talking out loud about why I would need this or that medication and then she'd catch herself and say something like “well you know that”. It was funny, and nice to not have to speak with a supposed specialist who ended up knowing basically nothing about C.A.H. let alone the many types of D.S.D. (Intersex conditions). I actually had a rather pleasant experience and very surreal visit.
The only down fall from the entire experience is that her clinic, at University Hospital, and its over one hour, at the very least (more often like two hours), away . Which I'm still in pain and like way totally exhausted from and today I saw a neurologist and barely made it there, let alone through my appointment. But given how well my appointment went with Dr. Sarapura, I'm excited about continuing my visits' with her. My visit with her was really unique and rare for two reasons. First, I was so totally prepared for my Endocrinologist's appointment for the first time in my life, even though I truly did feel ready, like at all.
I feel the deepest heartfelt thanks to so many here at B.L.O. for helping me get my heart back to a place of hoping & healing and for getting me ready mentally & resource wise. [B][I]I would like to express my deepest thanks to Wyn most of all for helping me look for alternative information, which helped calm me down a lot. I also want to thank Betsy for letting me know that its possible to have two of the D.S.D. at the same time. Which my Endocrinologist is sure is not the case, but thanks to your advice I felt prepared to ask a lot of questions (not without a significant amount of nerves and a tummy ache like straight from hell). Your suggestion lead me to a lot of questions and research that made me feel much more prepared for my appointment. And to Peter I owe you the same thanks, for pretty much exactly the same reasons.
*****************************************
One last note, I've found an article published in Pediatrics - Official Journal of the American Journal of Pediatrics (http://pediatrics.aappublications.org/) titled Consensus Statement on Management of Intersex Disorders (http://pediatrics.aappublications.org/cgi/content/extract/118/2/e488). I found the writing very inspiring and not only did it give me hope and encouragement for my Endocrinologist's visit but its given me some real hope about the eventual, and impending, end of genital mutilations.
Consensus Statement on Management of Intersex Disorders:
http://pediatrics.aappublications.org/cgi/content/extract/118/2/e488
And some questions about whether it is the one of the many D.S.D. (Disorders of Sex Development -or- Intersex conditions, which ever you prefer) that caused my ambiguous genitals. These questions started when I tried to have a misprint on my birth certificate corrected. I followed my state's rules and after several months of nothing happening, I had just kinda forgotten about it.
I'm starting to kinda repeat my last month's back story here... some may want to skip down a lil ways :arrow:
Then on the fifth of September, my world started falling apart, when I went to an Endocrinologist who I at first felt very comfortable about seeing. You can read my post "I'm excited... about seeing a new Doctor..." (http://www.bodieslikeours.org/forums/showthread.php?t=1891) for more about my feelings before my September 5th.
However my visit went terrible and was traumatic and triggered many memories of past abuse, from the father. To a certain extent I feel the Endocrinologist mis-represented her qualifications on treating C.A.H.; and especially with treating and understanding patients who are born with any of the D.S.D..
Logically I imagine she is simply completely uneducated about patients who are born with any of the D.S.D., but emotionally I feel lied to, deceived, violated, and even betrayed. Because not only did she expose her own ignorance about C.A.H. but she also contacted my P.C.P. / G.P. (Primary Care Physician / General Practitioner) and spoke with her about "proper treatment of women with C.A.H.". She did it in a round about way because after "interviewing" her I denied her request to speak with my Doctor, or send her office notes.
I explain my experiences and feelings about what happened next in my two posts: "I'm sorry & I was wrong. Hate is not to strong of a word for how we feel about Doctors." (http://www.bodieslikeours.org/forums/showthread.php?t=1896) and "Test results, denial of treatment... and loss of self." (http://www.bodieslikeours.org/forums/showthread.php?t=1905)
As I wrote I wrote the above postings I began having, kinda like, what felt like an emotional break down. I was terrified of being without my Cortisone & Florinef and ending up dying, or being stuck in hospital. I was almost equally terrified that my new Endocrinologist would want me to just like have all kinds of physical exams and all kinds of thing I was forced through growing up.
On top of that I felt like I was totally like loosing my mind, heart, & soul after a Karyotype test came back showing 46,xy. This test was at against how I felt, and because of this test my Doctor said that it meant "My previous Karyotype shouldn't have shown me as 46xx, that I shouldn't have my Uterus', Ovaries', Periods', Vaginal Canal's, my puberty shouldn't have been female, and I shouldn't be on three of my medications'.
So my Doctor gave me one last 30 day refill of my Cortisone & Florinef and said she "was afraid she simply wasn't capable or trained correctly to treat my C.A.H. ...", and that she feared she "was putting me at risk by continuing my current treatment's & medications' regimen." And basically she ended up giving gave me 30 days to live, of course that how it felt, though that's not exactly what she did.
:wave1: Okay I'm sorry about that, but I needed that, but now I'm done with my update's back story...
Now for my surprisingly good news :cfs_flowe
Today, I went to see my new Endocrinologist, Dr. Virginia Sarapura, at University Hospital (they're run through Colorado University). I was as preprepared, as much as possible, for what I expected to be another traumatic experience with yet another uninformed and undereducated Endocrinologist, at least when it comes to D.S.D. (formerly Intersex conditions) and C.A.H. (or at least my a-typical treatment's). I did have a little hope that she would be able to help me after Googling her and because she works' at University Hospital.
University Hospital's like Colorado's Mayo clinic, or maybe better. They've saved my life multiple times, I'm not sure how many times. Though I do know the saved my life when I was 20 after I suffered from liver & kidney failure; digestive, respiratory, severe yeast, & urinary tract infections; and a seizure followed by stroke. All of these ended up putting me in a comma for all of Feburary of 2000. I'm also seeing an excellent pain management specialist who is helping in the treatment of my Early-Onset Generalized Dystonia by performing my Baclofen pump surgery. But still I feared, more than anything, I would be forced to submit to the kinds of physically & sexually abusive ”exams” just to be sure I would be able to get my C.A.H. treatments' and avoid dieing or being hospitalized indefinitely.
To my complete surprise she was kind, polite, & respectful. She asked me about my experiences with & knowledge of my C.A.H. while growing up, and she was incredibly sensitive to my emotionally charged answers. She recognized my needs for all of my medications' and even gave me another reason for why I'm taking one of them, which made sense once she mentioned it, but it wasn't explained to me when I was first prescribed it, over nine years ago. She also calmed my fears and confusion about my Karyotype tests, she said that based on all the combined tests sonograms, x-rays, C.A.H. based androgen levels (21-hydroxylase), and my many hormone tests'. She couldn't have cared less about them. She merely asked a few questions about my menstrual cycle and etc. She ordered standard adrenal / hormone tests, liver tests, and then a thyroid test. We talked about all my treatment over the last nine years, everything from what my first Endocrinologist did and worked through to stabilize my adrenal system (my hormone levels) to changes that have happened in response to my Early-Onset Generalize Dystonia. She even discussed what the father did to me while growing from his abuse to the multiple stages of my genital mutilations, and seemed to kinda understand the trauma behind being mutilated.
I see her again on October 3rd to go over my blood work and discuss some possible changes to my birth control medications and other options for combining some of my medications into different types that may help with both issues with just one pill, instead of two. Though she made it clear though that she wasn't going to just like force any change or anything until my blood tests results' come back and she's sure what, if any changes, are needed. She was also completely comfortable with me asking a million questions and making my own statements, which (again) both often triggered a lot of emotionally charged reactions. She was also unbelievable cool about me actually knowing a lot about my C.A.H., but unlike any recent Endocrinologist I've visited in my recent past.
Her like number one concern is of making sure my health and entire adrenal system is working as best it can in combination with my medications. Another thing that was a wonderfully, and basically new experience, she actually knew more about C.A.H., in all its varieties, than I did. But the most important thing is that she understood why I was on each of my medications. Several times she even start talking out loud about why I would need this or that medication and then she'd catch herself and say something like “well you know that”. It was funny, and nice to not have to speak with a supposed specialist who ended up knowing basically nothing about C.A.H. let alone the many types of D.S.D. (Intersex conditions). I actually had a rather pleasant experience and very surreal visit.
The only down fall from the entire experience is that her clinic, at University Hospital, and its over one hour, at the very least (more often like two hours), away . Which I'm still in pain and like way totally exhausted from and today I saw a neurologist and barely made it there, let alone through my appointment. But given how well my appointment went with Dr. Sarapura, I'm excited about continuing my visits' with her. My visit with her was really unique and rare for two reasons. First, I was so totally prepared for my Endocrinologist's appointment for the first time in my life, even though I truly did feel ready, like at all.
I feel the deepest heartfelt thanks to so many here at B.L.O. for helping me get my heart back to a place of hoping & healing and for getting me ready mentally & resource wise. [B][I]I would like to express my deepest thanks to Wyn most of all for helping me look for alternative information, which helped calm me down a lot. I also want to thank Betsy for letting me know that its possible to have two of the D.S.D. at the same time. Which my Endocrinologist is sure is not the case, but thanks to your advice I felt prepared to ask a lot of questions (not without a significant amount of nerves and a tummy ache like straight from hell). Your suggestion lead me to a lot of questions and research that made me feel much more prepared for my appointment. And to Peter I owe you the same thanks, for pretty much exactly the same reasons.
*****************************************
One last note, I've found an article published in Pediatrics - Official Journal of the American Journal of Pediatrics (http://pediatrics.aappublications.org/) titled Consensus Statement on Management of Intersex Disorders (http://pediatrics.aappublications.org/cgi/content/extract/118/2/e488). I found the writing very inspiring and not only did it give me hope and encouragement for my Endocrinologist's visit but its given me some real hope about the eventual, and impending, end of genital mutilations.
Consensus Statement on Management of Intersex Disorders:
http://pediatrics.aappublications.org/cgi/content/extract/118/2/e488