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I guess this is the end

Started by luna, June 04, 2014, 02:54:21 PM

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luna

I know most of you don't know (or probably remember me). After several years of trials and more recent tribulations, I've been taken off of HRT. Why? Because my body was breaking down so badly that I could barely function. After so much denial (from my many, many doctors) that HRT was the cause, they started lowering my dosages. Because I started feeling better, they took me off all the way.

Of course it's fixed all of my crippling fatigue and inexplicable universal pain. They suspect I'm allergic to both Spiro and Estradiol for the effect to have been as pronounced as it was. That's right, I'm allergic to being a woman. There's a good chance that continuing would have killed me.

So Monday, I tried to commit suicide.

Of course I'm here so I wasn't successful, but I have a rather bleak outlook at the moment. Any words of encouragement, any advice for life without transition?


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DriftingCrow

Hi Luna:

I am sorry Hrt didn't work out.

You might want to check out the Non-Transitioning forum for lots of advice and encouragement from non-medically transitioners. https://www.susans.org/forums/index.php/board,487.0.html

Basically, my advice (as someone who's not medically transitioning) is to learn to control your mind so the physical isn't as bad.

Henry
ਮਨਿ ਜੀਤੈ ਜਗੁ ਜੀਤੁ
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ErinWDK

You are NOT allergic to being a woman!  You are allergic to two medications, and it is right to stop using them.  Suicide is a permanent answer to a temporary problem.

Nimrata is right, there are ways to transition without medical intervention.  Look at the other pages and see what others have to say that are non-medically transtioning.  This is not the end.


Erin
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luna

I know I'm not allergic to my womanhood, I am who I am... I was just being dramatic. But literally, estrogen is dangerous to my health. There's precedence for this, but it's rather rare... kind of like my chicken allergy, or my Pradaxa allergy. I feel like Niles Crane.

While I'm aware that I can technically transition still, I also know that I'm never going to be approved for any surgeries, I'm never going to look the part. If I keep running into brick walls and having my hopes dashed again and again, the next time it won't be a suicide *attempt*. It isn't a temporary problem, it's a permanent one. Between my very poor health and my broken psyche from losing this battle, I know I couldn't handle another failure.

I'll go read some on the non-transition forum. Thanks everyone.


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DriftingCrow

Luna, you might be pleasantly surprised by what the future may hold for you. There's one lady on this forum who's not on HRT but passes quite well. :)

I am not sure if being on HRT is a requirement for any surgeries, but it shouldn't opt you out from getting things laser hair removal done. If you can get FFS without being on HRT that might help with passing. Doing daily moisturizing facial masks can help soften and smooth your skin.

One step at a time though. I hope you start feeling better soon.
ਮਨਿ ਜੀਤੈ ਜਗੁ ਜੀਤੁ
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Jill F

There are AAs other than spiro.  I have personally never taken it.  I am also getting an orchi next month, so I won't need an AA ever again.

I also take bioidentical E transdermal gel.   I have never heard of a genetic girl being allergic to her own ovaries, BTW.

Hang in there, and maybe switch docs when you are able.   The one you have sounds like an idiot to me.   Believe me, I've had plenty of those where I was right and they were dead wrong.  Well, I was the one who almost ended up dead...  Anyway, just because you have an M.D. it doesn't necessarily make you right.
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luna

I won't get approved for surgeries because I have a heart condition and have this weird scarring issue where I produce an overabundance of intrusive scar tissue. I couldn't get approved for an orchiectomy because of these problems. I couldn't get approved to have my nose straightened, either, and I can't breathe through my right nostril at all because of the scar tissue in there. I've mentioned these issues before, I didn't think to bring them up today. My apologies to everyone for the confusion. I came to terms with this aspect of transition a long time ago. Fact is, though, I have a ridiculously oversensitive body, have since I was a tiny child.

I appreciate all the never-say-die type comments. I'm almost finished with electrolysis and laser hair removal for my face. If I can scrape money forth for my body, I will. Otherwise... I dunno.

I haven't received a definite diagnosis of allergy. What I have done, however, is ween myself off of Spiro (while under doctor supervision) and felt somewhat better, then weened myself off of estradiol. Frankly, it's good to be able to walk without being in pain again. Because of my lifetime of allergy issues and a pradaxa/cardizem scare a few years ago, I'm hyper-aware of how my body is reacting. And I've denied and delayed this as long as I could. I won't go back on any medications, I wouldn't be able to live through another disappointment if things didn't work out.

Nimrata: Thank you for the mask suggestion, that's awesome.


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mrs izzy

If transition is truly your path many with medical troubles have a orchie.

It kills the t

Have they tried patches or gel for E?

Izzy
Mrs. Izzy
Trans lifeline US 877-565-8860 CAD 877-330-6366 http://www.translifeline.org/
"Those who matter will never judge, this is my given path to walk in life and you have no right to judge"

I used to be grounded but now I can fly.
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luna nyan

:-(
*hugs*

I'm so sorry to hear that you're having such a rough time of it.  It really sucks to have such an overly sensitive system - without knowing any details sounds like an auto-immune sort of thing or related, and that can be so hard to manage at the best of times - your disappointment is entirely understandable.

I would say an outright allergy isn't what you have - it just seems as though you have an unusual response to the meds for whatever reason, and for you, testing for what's going on may prove upsetting.

Nimrata's suggestion is good, and looking for way forward.  Often doing what we can is enough to give us self acceptance.
Drifting down the river of life...
My 4+ years non-transitioning HRT experience
Ask me anything!  I promise you I know absolutely everything about nothing! :D
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luna

Actually having tests done now, seems to be whenever normal female levels of estrogen is in my system my antibodies go crazy and attack my body. Technically an auto-immune thing, but technically an allergy is an auto-immune thing anyway.

This rules out a lot of options, having *no* hormones is particularly dangerous too, but as Spiro in amounts above the absolute minimum drop my BP to 85-90 systolic and 40-45 diastolic, i can't have it either. I lost the anti-androgen battle after my last heart surgery in September (which led to the discovery of my scar tissue problem as well, it nearly killed me... what a joke my body is). So, laser has been wildly ineffective, electrolysis is outside of my affordability range, especially consider I have to travel 4 hours for it. I'm closing in on 34 in October and after spending so much time just trying to get resources in this god forsaken hellhole I can't help but want to scream. And die.

Also, hey another Luna. Nifty.


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luna nyan

Luna,  (wow, I feel like I'm talking to myself here)

I got distressed reading about your condition.  It sounds like a Gordian knot of immune markers going crazy, and must be hard to manage at times.

I assume you're under the care of an immunologist of some sort?  I'm going to go off the wall here - maybe talk to an immunologist about going on an immunosuppressant short term, perhaps coupled with some meds that will block the allergy cascade.  If your inflammatory response is mediated, perhaps that can be enough to at least get you through an orchiectomy,  (Not my field of expertise, so please don't put too much into it)

Please look after yourself, we Luna's have to stick together, :D
Drifting down the river of life...
My 4+ years non-transitioning HRT experience
Ask me anything!  I promise you I know absolutely everything about nothing! :D
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Allyda

Hi Luna,

I'm so sorry to hear about your situation. Unfortunately I'm not a medical expert so I can only offer my sympathy and support, and all my hopes things will somehow work out for you.

Hugs :icon_hug: :icon_hug: :icon_hug:

Ally :icon_flower:
Allyda
Full Time August 2009
HRT Dec 27 2013
VFS [ ? ]
FFS [ ? ]
SRS Spring 2015



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luna

Quote from: luna nyan on June 12, 2014, 08:40:17 AM
Luna,  (wow, I feel like I'm talking to myself here)

I got distressed reading about your condition.  It sounds like a Gordian knot of immune markers going crazy, and must be hard to manage at times.

I assume you're under the care of an immunologist of some sort?  I'm going to go off the wall here - maybe talk to an immunologist about going on an immunosuppressant short term, perhaps coupled with some meds that will block the allergy cascade.  If your inflammatory response is mediated, perhaps that can be enough to at least get you through an orchiectomy,  (Not my field of expertise, so please don't put too much into it)

Please look after yourself, we Luna's have to stick together, :D

Oh, I can't afford all of that. I work for the hospital but I'm still making a very small amount of money. I was able to set aside $4 a month for HRT and $35 every three months for Endo appointments... coupled with therapy ($50/session) and laser ($200/session) I really had to watch my money. For what it's worth, my options medically will open considerably after I'm done with laser, but I'm going to have trouble getting surgery for anything at all at this point. I've been flat out told I can't have an orchi.

I wish I could afford to move, y'know? Go somewhere with people who know more about this kind of stuff. SC kind of sucks.


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Allyda

Quote from: luna on June 12, 2014, 02:25:13 PM
Oh, I can't afford all of that. I work for the hospital but I'm still making a very small amount of money. I was able to set aside $4 a month for HRT and $35 every three months for Endo appointments... coupled with therapy ($50/session) and laser ($200/session) I really had to watch my money. For what it's worth, my options medically will open considerably after I'm done with laser, but I'm going to have trouble getting surgery for anything at all at this point. I've been flat out told I can't have an orchi.

I wish I could afford to move, y'know? Go somewhere with people who know more about this kind of stuff. SC kind of sucks.
Just curious; have you gotten a 2nd opinion?

Ally :icon_flower:
Allyda
Full Time August 2009
HRT Dec 27 2013
VFS [ ? ]
FFS [ ? ]
SRS Spring 2015



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Emily1996

This is so sad, I am sorry, you don't need hormones to transition, there are toher ways please don't commit suicide! I guess they might allow you to get SRS even without being on hormones, right? I think I read something like that on Suporn's site, and you could still get breast augumentation or FFS I think, so really hormones don't make you less of a woman to anyone. I can't be on hormones yet, so I understand your pain.
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luna

Quote from: Allyda on June 13, 2014, 06:06:12 PM
Just curious; have you gotten a 2nd opinion?

Ally :icon_flower:


There's only one trans-friendly Endo in my area, and she's not in my insurance network. I just found out a few days ago that they've been billing me wrong and I owe them a bit over three thousand dollars. The southeast isn't exactly overflowing with trans-friendly endos, and looking at cost per visit out of my network now, I really have no options at all. The closest would be Columbia, well over an hour away... but I've been in contact with them and they've said there's nothing they would do different than my current Endo. I can't afford a second opinion with someone who refuses to prescribe a different HRT regimen.

Quote from: Emily29 on June 13, 2014, 06:55:28 PM
This is so sad, I am sorry, you don't need hormones to transition, there are toher ways please don't commit suicide! I guess they might allow you to get SRS even without being on hormones, right? I think I read something like that on Suporn's site, and you could still get breast augumentation or FFS I think, so really hormones don't make you less of a woman to anyone. I can't be on hormones yet, so I understand your pain.

I can't get GCS, my body produces too much scar tissue. Anyhow, I'd never afford it. I know there are people less well off than I am on here, so I try not to complain about that too much- but I've also got about $100k in medical debt from heart surgeries from before I was insured (and because I'm trans and was on hormones at the time and it might have contributed to the problem I didn't qualify for their debt reduction). I had an afib ablation in September and there were such awful scarring problems that it nearly killed me.  I'm not supposed to have any surgeries without everything being closely monitored for a few weeks (that's likely much longer with my heart and scar issues, assuming anyone would even do it). Aside from which, doesn't living without some form of hormone (e or t, primarily) cause a lot of complications and severely reduce lifespan?

Sorry it's taking me so long to respond, I lost my internet access at home and no longer have a computer.


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Allyda

Quote from: luna on June 16, 2014, 02:19:06 PM

I can't get GCS, my body produces too much scar tissue. Anyhow, I'd never afford it. I know there are people less well off than I am on here, so I try not to complain about that too much- but I've also got about $100k in medical debt from heart surgeries from before I was insured (and because I'm trans and was on hormones at the time and it might have contributed to the problem I didn't qualify for their debt reduction). I had an afib ablation in September and there were such awful scarring problems that it nearly killed me.  I'm not supposed to have any surgeries without everything being closely monitored for a few weeks (that's likely much longer with my heart and scar issues, assuming anyone would even do it). Aside from which, doesn't living without some form of hormone (e or t, primarily) cause a lot of complications and severely reduce lifespan?

Sorry it's taking me so long to respond, I lost my internet access at home and no longer have a computer.
What is GCS? I also live in Florida and have to drive an hour and 30 minutes to see my Endo so I know what you mean. And my Ram 2500 4x4 ext cab has a V10 -not the best motor for gas mileage. It costs me $40. round trip cause of all the stop and go traffic. I looooove my truck though. It's Pearl Black, lifted 8" and running 17" Pro Comp 37 XT's. Also you are correct, even if you were to get SRS you'd still be granted on a much more reduced, but a maintenance dose of E. Your body needs hormones to function properly.

Again, I offer my sympathy and if you need to just talk I'm only a pm away. I'm also on Facebook, just look for Allyda Blackwolf.:icon_bunch:

Allie :icon_flower:
Allyda
Full Time August 2009
HRT Dec 27 2013
VFS [ ? ]
FFS [ ? ]
SRS Spring 2015



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luna

Quote from: Allyda on June 19, 2014, 01:50:04 PM
What is GCS? I also live in Florida and have to drive an hour and 30 minutes to see my Endo so I know what you mean. And my Ram 2500 4x4 ext cab has a V10 -not the best motor for gas mileage. It costs me $40. round trip cause of all the stop and go traffic. I looooove my truck though. It's Pearl Black, lifted 8" and running 17" Pro Comp 37 XT's. Also you are correct, even if you were to get SRS you'd still be granted on a much more reduced, but a maintenance dose of E. Your body needs hormones to function properly.

Again, I offer my sympathy and if you need to just talk I'm only a pm away. I'm also on Facebook, just look for Allyda Blackwolf.:icon_bunch:

Allie :icon_flower:


GCS is SRS. Gender Confirmation Surgery, more politically correct I guess... I'm used to people who use the term GCS and not SRS.

So there's a good chance that if I managed to talk some doctor into doing an orchi, eventually they'd have to put me on testosterone anyhow as my body attacks itself when I'm on estrogen. FML.


  •  

Allyda

Quote from: luna on June 19, 2014, 03:20:46 PM
GCS is SRS. Gender Confirmation Surgery, more politically correct I guess... I'm used to people who use the term GCS and not SRS.

So there's a good chance that if I managed to talk some doctor into doing an orchi, eventually they'd have to put me on testosterone anyhow as my body attacks itself when I'm on estrogen. FML.
Please though Luna if you need to transition don't give up. Medical technology improves every day. You may even be able to try herbals. Some girls have good luck with them. Of course you must do what's right for you that goes without saying. But if I were in your shoes I'd definitely be exploring any possibility no matter how remotely successful it may be, in order to be who I truly am both inside and out.

You have all my best wishes, and hopes, you can find an alternative.

Big huggggs! :icon_hug: :icon_hug: :icon_hug: :icon_hug: :icon_hug:

Allie :icon_flower:
Allyda
Full Time August 2009
HRT Dec 27 2013
VFS [ ? ]
FFS [ ? ]
SRS Spring 2015



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