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Maddie

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Hi.
Need to vent.

I've been trying to get a surgery date for GCS since 2018. It took until fall 2020 to get a consult at UWMadison, and they turned me down for any services following a short, blind phone call, that the nurse navigator had told me was for FFS. the surgeon seemed irate and only wanted to discuss GCS.
Letters from Drs who have worked with me for years, appealing the UW Drs decision, have not changed their mind. so I cannot go there. I believe if I had been granted and actual in-person consult that they would not have turned me down. It's like they just don't believe me.

I have had a consult at IU Health for GCS. I've already sent them six letters. Three for the first consult, which they canceled, 3 for the consult they rescheduled and did actually happen this past Feb. Now they want 3 letters to put the date on the books. They did not tell me this at consult. I actually tried to book the date right then, but they said they'd call me in June.
Well they contacted me a few weeks ago, putting the pressure to set the date now, before they're booked up. Then they surprised me with the need for three more letters. I thought I wouldn't need them until before the surgery. And I will need another set then.

My HRT Dr is not getting my MyChart msgs passed along to her from her clinic, even though I keep reminding them that I need yet another updated letter from her. (Including all my consults that got cancelled with Dr Ting and Dr Bluebond-Langner in NYC, she must have written a dozen of them for me).

My professional team seems to be tired of sending these letters, as if they believe all my bad luck is my fault. It's not.

My two mental health letters come from different therapists who each worked with me for years, and promised they would always write letters for me. One says she's busy, but still hasn't gotten to it in a couple weeks. The other thereapist sent IU a letter addressed to a different (incorrect) surgeon....

My new primary care Dr happens to be a transwoman. She also wrote a surgery letter required by the two different NYC surgeons. I think the name wrong in that letter too. Also, she thinks I should get GCS and BA at the same time. IU will not do this. I'm so confused.

I just have bad luck.
 

Maddie

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On the bright side, now I have blue cross insurance that I didn't have before. Maybe I'm supposed to go somewhere else/other that might be better for me..???

I'm exhausted and have no time these past months. Just want to move ahead with it, instead of starting over again. I was down to 165lbs but with the stress I'm up ten from there. I've been told once that I'm too heavy for surgery. And then told not to lose more weight by my primary care dr......

Even though I know of others who got it done who must weigh more.

Also confusing me is the gut feeling I have that Dr Zukowski in Chicago is where I need to go for FFS. They don't accept insurance. This makes me trust them more, even though it would take years for me to put together the money. I'm already into them for thousands because I'm convinced after years of failing elsewhere that their techs are the only ones who can clear me with electro. I have consults with him and with a Dr Firar both in June. Dr Z shouldn't need letters. Don't know about Dr Firar. I was referred to them through my HRT clinic months ago, and nobody has said anything about letters yet.

It's been too long already. Especially considering the life I want to live, in the time I might hopefully yet have.

Chasing lost youth and whatever else we can't have is nowhere nowhere.
Adopt positive new vision.
Clarify.
 

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TonyaJanelle

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Have you looked at the Mayo Clinic where @Linde went? It's certainly possible to do BA and GCS at the same time, guess that be doctor preference.
 

Linde

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Maddie, I am happy with what the Mayo gave me. They don't try to make money, they are a non profit and take Medicare/Medicaid.
My pelvic floor therapist, and my gynecologist both tell me that I loo like a natal woman down there.

I am 5' 9" and weight 195 pounds. They told me they want a little fat, because they need it for building up the outer labia and the pelvic mount. I think you might not want to do the BA and the SRS at the same time, if you are looking for a full depth vagina I had an orchi already, which took a bout 45 mins away from the total surgery time, and my surgery was without any complications and still lastet a bit longer than 6 hours. If you add the time for the BA to it, it could be an awful long time under anesthesia, but it would be up to the doc to make this decision.

Linde
 

Maddie

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Thank you Linde and Tonya. you make me feel like a person.

Not sure what to do. It's my Drs idea to have both surgeries at once, not mine. Confused again. Conflicting information. Not fixed. I have blue cross now. I don't even know what that means. It's all BS that important people make up to justify their own salary.

Got my first covid shot at work yesterday. Wish my phone and work device would stop all the propaganda about it. Your a$$ is covered. Big deal.
Need a data mine collapse so we can breathe for a while.
 

Maddie

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I think I'm still 5'10".
Getting shorter seems like the thing to do around here. Maybe I will too.

Thought this PCP Dr was the answer to my prayers. A guide thru this transition. Put the pieces in the right order plan of actions. When I make my own plan, I screw it up. When I let experts plan me, it's worse.

I thank the Lord or the lucky stars or ms magdalene or whoever is....for the most important thing to my life:

The fact that I cannot effectively plan and enact suicide.

When people commit suicide, their friends are surprised and tell me there surprised it wasn't me. I told them I was immune to that. Similar to vaccination. Cocky stance, no?

I swear I won't, hoping like mad the circumstances do not press my belief in this immunity.
 

Confused

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Maddy,

I didn't have any problems at all with Dr Gray in Kansas City, and if anybody should have had trouble it should have been me. Although it is a greater distance from where you live, I would recommend my surgeon as well. I think you have options. Don't let one surgeon or location shut you down.

Hugs,
Mike
 

Maddie

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Letters done.
Got a call for a surgery date. Take it or leave it. But it was during the two months I keep telling them, in writing, that I can't do.
They'll get back to me when they can. And said my letters are good for a year.
They had said that last time too, but three months later they wanted more letters.
Runaround? Getting closer?
 

Maddie

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I can do PI or PPV with this surgeon. At the consult in Feb, they said I didn't have to decide yet.

If I do PPV I won't have to do bottom electro, which I have never started on. It's taking all my $ to do the electro I'm already doing. It might be possible to clear the bottom before potential surgery dates in early 2022, but maybe not?

Talked to a girl who had PI with no bottom hair removal. She mentioned having hairballs come out later. Interesting what people learn to live with.
 

TonyaJanelle

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Progress. Are you able to talk to any of this doctors PPV patients?
 

Linde

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Talked to a girl who had PI with no bottom hair removal. She mentioned having hairballs come out later. Interesting what people learn to live with.
I had no hair removed, they did it with electro-cautery, and I have no hair growing in any undesired area. All the other hair that they trimmed for the surgical field grew back very normal.
Who told you that you don't need to remove hair when you do PPT? The pull through is for the canal only, but the labia minora and the vestibule are still created the conventional way, and you don't want hair to be growing there either. You better check for that again, if they do it, like they did it for me, or if you have to take care of this hair removal.


Linde
 

Donica

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Are we talking PPV or PPT?
 

Donica

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Maddie, have they put you in the queue for surgery? I ask because usually once they put you on their list for surgery, you shouldn't need any new letters. For example, I got both of my letters back in August 2019, and am only just now having surgery, but they put me in their queue back in 2019.
 

Confused

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Maddie,

I had to tell them no for the first surgery date they gave me, but they called me back the same day with the date I did accept. I think you may be getting close.

Hugs,
Mike
 

Maddie

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Exciting to be close Mike. Thank you dear.
Need to really get on this more now. Hopefully moving closer to work in the next few weeks, which should add a few precious hours to research insurance, providers, procedures, and schedule all this. Since my hair removal and bottom surgery processes are the furthest along for me, then the rest will be time-based around these.

Linde, as usual, I think it's a case that we're all different The woman who relayed that story to me is a lot further along this path, having had her SRS with Dr Brassard at least ten years ago. She told me that he did not require bottom hair removal.
The issue she described was years after her procedure.
So maybe give it time...
In any case, she laughed about it, like no big deal

In Feb, Dr Joshua Roth at IU told me patients don't need laser hair removal for what the paperwork calls "Peritoneal (Abdominal Lining) Vaginoplasty" or the "Sigmoid (Large Bowel) Vaginoplasty"
They do require laser hair removal for
"Penile Inversion Vaginoplasty"
I am writing word for word from the paperwork, and what he said at consult. However I convert "laser hair removal" to electro in my plan because laser is not allowed to claim permanent results. And I had no real results with laser. (Please don't remind me about the dark hair/light hair thing. I know that, lol. My bottom hair is lighter, which makes me even more sure to want electro, if I'm going to clear the area. I think I want to clear almost everywhere on my body!! I want a clear clean machine for this ride onwards.)

Side note: the urologist/robotics specialist in this team is Dr Koch, who worked with Dr Gallagher at the same hospital doing what was described on forums as a PPTV. My take from the consult is that this would be the same as mine if I choose this approach. Dr Roth was in the team with Gallagher and Koch doing those procedures in 2019-2020


Donica, I am not in the same kind of system that is apparently in place in CA and a few other places
No mention of a queue.

The clinic seem to need new letters every few months. Although they say theyre good for a year. On my new insurance end, they need a full set of three or four letters, dated within 6 months of every appt, consult, surgery, and follow up. Hell. This why I want (pipedream) getting FFS with Dr Zukowski. He doesn't accept insurance, and he has many previous clients. I love that, (even though I don't have finances unfortunately). If you got the money nobody can make you beg for more letters, testify lies on paper, or jump like a monkey anymore.

I could put this off a couple years until my bank builds up, but a window is a window. If my time is soon, I don't want to miss the train because I assume everything will wait for me to catch up. Health is everything, and more important than money in this game.
 
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Linde

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The woman who relayed that story to me is a lot further along this path, having had her SRS with Dr Brassard at least ten years ago. She told me that he did not require bottom hair removal.
The issue she described was years after her procedure.
So maybe give it time...
In any case, she laughed about it, like no big deal
Maddie, ten years is a long time in tis field. Brassard did still do manual follicle scraping, because the did not have specialized cautery equipment available at that time.
I like that your friend took it that easy, because she would need a revision surgery if she would not like it.

Linde
 

Maddie

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I had no hair removed, they did it with electro-cautery, and I have no hair growing in any undesired area. All the other hair that they trimmed for the surgical field grew back very normal.
Who told you that you don't need to remove hair when you do PPT? The pull through is for the canal only, but the labia minora and the vestibule are still created the conventional way, and you don't want hair to be growing there either. You better check for that again, if they do it, like they did it for me, or if you have to take care of this hair removal.


Linde
I'm on this. Contacting the surgery clinic, and my openly transwoman primary care doctor, for clarication.

If I need to get cleared, there is not enough time to book surgery in January. I have not even started bottom clearing. Not just time, money could prevent this unless insurance could? I'm confused again.
Wish everyone would tell me the same thing lol. Feel like ping pong ball.
 
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Maddie

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Also, I read that with the PPT some erectile tissue remains, so your new clit sticks out when aroused.
Wtf???
I don't know about that.
I've seen a couple women with ones kind of like that and it was not my favorite thing.

No offense plz. Just an opinion
 
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