Dilating issue

[April Marie]

Oh, Maddee, there is no need to apologize. Vent, share, laugh, cry, update - whatever you want or need to do. I just wish there was more I could offer than a virtual hug or shoulder.

 

Have you found any other physicians who might do the revision? I think I'd at least keep the consult with the doctor - gatekeepers aren't always correct in their information/assessments. My wife had a situation where she was given bogus information during some assessment testing that the doctor later totally reversed. Hopefully, the consult will give you a path forward.

 

Sending love and strength!

[Kylie]

@Maddee I think it comes down to insurance if you’re using insurance? I’m not quite sure. I went to Crane Center in Austin TX. I didn’t need letters for my two revision surgeries, but I also used them for my initial surgery. Valentina is a wonderful resource and patient care coordinator thru California office. Which Surgeon are you meeting with? 

[Maddee]

Thanks April Marie.  The letters she requested are now due before my consult.  What sucks is that my consult was already scheduled, without these letters, and the gatekeeper was a totally optional appointment that I didn’t even have to do!

[Kylie]

@MaddeeYou should call and speak with someone at the office. If it is just a consult they should be able to at least assess you and give you options first - then if required - you can present letters in order to schedule a surgery date. 

[Maddee]

@Kylie

Dr Yun in CA

 

My impression - it did not seem that Valentina was the least bit interested in me.  
 

I have insurance.  Maybe that’s why these are needed.  She didn’t explain beyond that.  I didn’t know if she was talking about my insurance or insurance thatCranr Crnter has

[Maddee]

I will call the office again when they’re open. Thanks 

 

it’s hard because this is like where I was four years ago.  Nobody knows me and it’s like I just decided to do this. 

[Maddee]

@Kylie

You are helping me keep going.  
I’m so grateful you are here replying to stuff I post.

 

I want - scars to be gone.

-To have depth

-For dilating and other penetration to be comfortable and even pleasurable.  
 

I am willing and proven myself so, many times 

 

This is me!!
 

[Kylie]

@Maddee Girl I totally get it. First 18 months of recovery from me were horrible, painful and I was so depressed. After my final revision I was given green light to move forward. Yeah I still have to dilate once a day right now, mostly out of fear, but feels great to be able to have sex comfortably! 

[Maddee]

18 months is a long time to be depressed fighting this Kylie!!  So glad that things are better for you!!!❤️❤️❤️❤️❤️ I need that kind of thing too girl.  
 

My surgery was March 2022.   First 3 months very hopeful, but struggling since then.  It took a while to to go from frustrated to depressed, but pretty sure I’m there now. 
 

Making first contact with another 4 names that I haven’t reached yet. 

 

Looking for someone willing, able, and available; who will maybe even commit to me even though they weren’t the primary surgeon. 
Looking for rainbows 🌈 🌈

 

I’m not holy.  
Not religiously practiced. 

I believe that anything is possible through God.

 

Even for a lowly sinner -lovely person- like me.  

[Maddee]

-Horror- like me.  

 

 

[Mmindy]

🌈Maddee, it's you blog, your terms.🌈

 

As long as you're posting and commenting on other threads, I know you're alive and kicking. I want you to be engaging with others as you move forward.

 

Hugs,

 

Mindy🐛🏳️‍⚧️🦋

 

 

[Madison_1990]

I also have to jump in and say I hope things go better for you Maddee.  I dealt with some issues during my dilation after my surgery (mostly with infection issues).

 

But I wanted to join the chorus of support because sometimes, we really need to be able to lean on others.

[Maddee]

I have several appointments for surgery consults scheduled between today and  June 2028.  
 

Received a message from Mt Sinai NYC, moving my two consults up to this week (May 22)  and June5(they require two in person consults).  So I accepted the appts, booked two round trip flights. 

When I arrived at the first consult, I was informed that I wasn’t on the schedule for either date.  Apparently it was a glitch in their software update that changed my appts but didn’t update them.  I had taken off work and spent 24hrs in airports to be there so yeah I was almost tears and definitely gutsick to be told this.  Uber alone to and from the clinic & airport was nearly $300. 

As I was going through TSA to fly home unconsulted , they called and rescheduled me for today with a different surgeon.  So I cancelled my flights last minute and stayed at a hostel in upper west side Manhattan last 2 nights.  
 

Today I checked out and walked to upper east side.  Beautiful day.  I’m at the surgeons office now.  They’re not sure when he can see me, so I will wait as long as needed.  My new flight home is tomorrow morning.  Hoping I can cancel my June flights also.  
 

Wish me luck.  I’m trying to be scheduled for a secondary colovaginoplasty (sigmoid colon) so I can have depth and remove these scars.

🌈🌈
 

[April Marie]

Sending prayers and good thoughts your way, @Maddee!!!

[Maddee]

Seen by one surgeon. Dr Purohit  yesterday.  No promises but they can try to do my surgery.  But I have to I stay longer in NYC and be seen by the sigmoid colon specialist Dr Wicklin of today in midtown Manhattan. 
 

rescheduled flight again. Now departing Friday. 

Took another vacation day from work.  I’ll have to check in and out if this hostel 3 times due to availability.  
Resources running low,  but this can be done!! now rather than another trip later.  
 

The timing of all these things is miraculous. Things are so much more possible in this city! 
I am praying for the miraculous to carry me all the way through to amazing successful results for my body and life.  🌈🌈

 

Beyond my dreams

[Jani]

It will work out for you @Maddee.  Things appear to be getting brighter.

 

[Kylie]

@MaddeeWonderful news. Keep us updated. 

[Maddee]

Thanks for the support ladies💕

 

Hopped s train to midtown this morning for my 2nd unplanned surgery consult this week (3 in all) .  Life can work this way, no?

 

Dr Wicklin talked to me about the sigmoid colon aspect of the operation. He echoed what Dr Purohit told me: they won’t know for  certain if they can perform this procedure until they are actually operating.  
 

I told him I’m seeking functional depth and why.  I believe that my path is us, even though there are rare, but very serious complications that can happen.   He says we’re good to proceed.  

Dr Purohit’s office will be reaching out to schedule me.  

 

[Maddee]

*a* train

 

My path is *this *

 

 

 

sorry!

[Kylie]

@Maddee I really am excited for you! I told you that you just have to keep pushing forward, after years of struggle for myself, I found comfort 💜

[April Marie]

What awesome news @Maddee!! I am so happy for you!!! This WILL work out for you!!! Safe travels home - and enjoy your time in the city!!!

[Maddee]

Correct spelling of Drs names this week

Dr Tran->Dr Purohit->Dr Wiklun

[Maddee]

If not for their software update schedule glitch, I wouldn’t have been in NYC.  

[Maddee]

Just had phone appt with Dr Purohit, who I am scheduled with on Aug 16th for secondary robot assisted sigmoid colon vaginoplasty. 
 

the series of events leading up to this surgery seems miraculous.  
 

but I do not feel anything warm or confident about the surgeon.  He’s actually going on vacation immediately after my surgery and will not be around postop.  A different surgeon will cover him.  Not saying they’re not competent-I have no idea-   It’s just a general feeling of unease and fear of abandonment by this surgery team that reminds me of my original surgery and postop. 
 

I’m still scheduled for consult with Dr McGinn in Sept.  I feel much better about her, Except:  she doesn’t do the colon vaginoplasty im told I need( from what I’m told Dr McGinn would create the new space using skin grafts)  AND there’s no telling how far back her surgery schedule list is.   But she is a transwoman herself and I know people who she stayed with through multiple surgeries until they got a successful result.  
 

I lost my job and am now paying a lot to keep the insurance.  Not sure how long I’ll be able to maintain that cobra coverage.  If I get a new job that pays enough, then I’ll probably lose this insurance.  I need this insurance in order to get surgery with providers like McGinn who normally do not work with insurance.  Because they’ll do one time pay agreements.  
 

I did this all on faith.  
and I don’t feel the faith now anymore

i need to have faith

I need to believe

 

wish I wasn’t so alone 

 

 

[Jani]

@Maddee That your doctor is going away afterwards is not a deal breaker.  As to having other doctors for your aftercare that is common.  When I had a major surgery prior to GRS the surgeon came in afterwards once to say hi and ask if I was feeling ok.  I dealt exclusively with other doctors and nurses.  

 

If you get another job, I believe you can maintain COBRA until you can actually get full insurance from the new employer, if they are large enough to offer it.  

 

Keep your faith!  You've come a long way and showed you can survive!  That's right, you're a survivor!   You will find your faith to be within you.  Keep believing you can and you will.  

 

Hugs, 

Jani