Dilating issue

[Maddee]

I’m pushing against scar tissue and what I think is the disconnected unsupported neovagina.  Theee structures do not give much.  So there is no depth gain.    So the skin above it stretches a little more easily.  
 

My concern is that this futile effort is pulling my urethra out of shape.  

AmI doing more harm than good?  
 

If only a medical person would commit to any opinion.  Or best course of action.  
So far my Drs have given up without ever  trying anything.  

[VickySGV]

You need to be seen either by your original surgeon, or by an actual Gynecologist an see what they observe about the situation you have there.  People claim scar tissue, when they are holding the dilator at the wrong angle.  An actual Gynecologist of Physicians Assistant RN can take the time to help coach you on the dilating. 

 

It will help you some to put a pillow under your hips as you begin dilating to help you get it in at the right angle and direction.  With the Soul Source dilators which are curved. with fanny on the pillow, hold the straight part of the dilator 90 degrees to the floor with the curved part sliding between your labia to the extreme back of the vulva and then tip the dilator away from you and gently put it in the vaginal opening, and gently drop the far end so the tip is starting to go up inside the vagina in a "J" motion and it should help what you are feeling. There is an upward curve, not a straight line which may be you problem. (You are not the first if that is what it is.  It also might help to twist the dilator end or wiggle it gently just a bit to follow the angle there. 

 

At one point or another I had to do all of this, but you will learn about your body by being gentle and knowing your anatomy there.  As I mentioned though, get your Gynecologist (and get a Gynecologist) to help you find exactly how to get it in. My Gyno saved my sanity, she also caught an early infection that was making life miserable for me.  A GP is going to have a silly look on their face about all this.

[Maddee]

Thanks @VickySGV 

II used to be almost 5 dots in every size soul source.  I know how to do it.  There just isn’t anywhere to go once the neovagina became disattached from inside my body and the scar tissue has thickered closing off the path.

 

i ’ve been seen by 2 different OBGYNs, a PFPT, my PCP, and the original surgeon. 

 

I got passed around for the past year by these people.  All except my original surgeon acknowledged these issues. but no one was willing to do anything to treat or advise me.  
 

the original surgeon is where everyone kept sending me back to.  The surgery teams answer (when I would eventually get a response from them after 2-3 attempts each time) was always “you’re fine, this is normal, just follow your original instructions, and… what do these other OBGYNs know about peritoneal vaginoplasty?”  

When I would ask about different dilation schedules or dynamic dilation techniques used by other peritoneal vaginoplasty surgeons to deal with similiar problems, my surgery team said that no one else in the world knows anything about this surgery.  That they were the only ones who know anything, so just keep doing their simple same original instructions “ dilate twice per day for thirty minutes using gentle pressure”.

 

This dismissive and non communicative attitude only became obvious AFTER  my surgery, but there were some clues of their lack of communication starting once I was actually scheduled for surgery.  With covid cancellations and lining everything else up, it just wasn’t enough warning sign for me to cancel and start over with another surgeon back then.  
 

They denied the scar that kept opening and thickening.  Said that never happened, even though both the OBGYNs and the PFPT had communicated these issues to the surgery team for months.  
They also completely ignored when they were informed by what the other Drs x called a prolapse last Nov.  my impression is that the neovagina had become disconnected to the body somewhere inside.  But they ignored me and the OBGYNs, and said dismissively that that couldn’t happen….and it can’t be a prolapse either.  Basically said there’s nothing wrong, you’re imagining this.  That was the end of any depth for me.  Now I’m just stretching out the skin, worried about damaging my urethra.  

Until this last appt where I was given a

five second exam finally, then he said 

”nothing can ever be done, let it close up for good and get used to receptive anal”
 

Sometimes Wish I’d never heard about peritoneal.  However I know my life and I can see that how this has gone down the way it was meant to.  Because I tried all different people to get in for GRS (PI or whatever)and this was the path that was opened and seemed to be the only right path for me back them . 

 

 

[Kylie]

I’m so sorry this has been your experience. When I was having issues with scarring my surgeon was quick to respond in correcting thru 2 separate revision surgeries. I hate their response is ‘let it close up’ because that is not compassionate care. I firmly believe you should seek out another surgical team to look into your struggle. each of us have a unique surgical plan so what I experienced is vastly different than what you and others experience. But as a medical professional, I could never tell a patient something so bleek without exhausting other options. 

[Maddee]

Thank you for the support @Kylie

 

im not quitting.  
Him saying that is more about him quitting than me.  It is unfortunate to have fallen under his authority. But I am resilient.  
My HRT Dr/obgyn has examined me this week and agrees that I shouldn’t quit dilating and pursuing revision.  
 
The surgeon was skilled in many aspects.   But it was obvious, starting immediately after surgery,  that he and the surgery team would not address or even acknowledge any issues inside the vagina.  They are no longer doing revisions for depth of scars for anyone.  Not just me.  
 

I’m still waiting for my operative report that I can forward to prospective surgeons able to do a possible revision.  Wishing medical records will release it soon.  

[Kylie]

@Maddee That is just so unfortunate. Many who have GCS do need revisions for various reasons! Keep me updated on what happens, please!

[Maddee]

Thank you @Kylie

If you’re interested, I keep a blog on this forum.  Started this thread hoping more people might see it.   😊💕🌈🌈

 

 

[Kasumi63]

Hi, Maddee. I'm assuming that you had the penile inversion method. I had sigmoid colon vaginoplasty, which I have read generally gives more depth. I also read, I think, that this surgery is sometimes used after the penile inversion method fails. I don't know if this would be possible for you, but it's worth investigating at least. This would be another major surgery (actually, it's two, as they resect some colon along with doing the vaginoplasty), so you might not want to go this route. 

 

One more thought: SoulSource seems to have two types of dilators: the hard ones (with the dots) and the softer ones (with a stopper at the top). I've used both and feel much more comfortable with the softer ones. 

Good luck!

[Maddee]

I had peritoneal surgery.  

[Maddee]

The surgeon who did my primary does no revisions. This is not what he told me at consult.  Most things he said turned out to be false promises.   His unwillingness to invest one extra minute into the aftercare issues of any of his surgical patients is causing me to lose my dream and my life.  Set back now waiting for years just to get an initial consult for a revision surgery somewhere else.  
 

I have encountered several trans in forums who had to go through the ordeal of revisions with their primary surgeon.  their ordeal  sounds like HEAVEN compared to this,  and a much shorter road.   
 

I am not young.  No matter what anyone looking at my photos may perceive.  I’m in this forum because I’m from the lost  older generation too.  And I did not have a late life realization I’m trans.  I knew it all my life, though there was different words for it, and have been banging on the door for medical help since last century.  
 

[Kylie]

I’m so sorry this is still something you’re dealing with. What surgeons have you reached out to?

[Maddee]

Stiller,BluebindLangner, Soteropolous, Crane center, Wittenberg. McGinn, want to do more

[Mmindy]

Maddee, I know you're doing your best to move forward, and I'm only a distant digital connection. I really do care and pray for you to find the doctor, and revision you deserve.

 

Hugs,

 

Mindy🐛🏳️‍⚧️🦋💖

[Maddee]

I’m getting close to crazy @Mmindy

@Kylietoo.  There’s something wrong that leads me incorrectly .  

things can turn around.  I’m afraid of this free virtual consult with a “postop trans femme “ person from Crane Center who I’m scheduled with in an hour.  It’s like I know this person cannot and will not be able to help me.  Only surgeon who can do a secondary colovaginiplasty and whoever runs their schedule can help me.
 

 I need my rainbows back.  That is exactly when this trouble sll started when they went away.  As soon as I text them they disappear from my phone.  
 

I want my rainbows back to take me home🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈

[Maddee]

Thank you friends

 

please let me know if you know anything more

[Jani]

I hope this goes well. 

[Maddee]

Hindsight.

 

i allowed myself to be unwittingly used at material for  well financed medical experimentation.  I believe that some of the online forums for trans people are part of this machine.  
 

when looking for options it may seem that doors slam shut all around you.  And then a light appears…a door opens… and you think that your desperate lifelong praetors are being answered .  
 

It’s really just about luck.  Fate.  And if you are fortunate to be chosen by God to encounter people who have compassion.  Who share the right complete info with you or the skills to make it happen.  Resources.  $$

 

I researched and asked questions.  I did not rush into surgery upon coming out and transitioning.  .  In fact I meditated and deliberated for three years while living female before moving forward medically.  Longer than many others I’ve seen come through these forums and elsewhere.
 

 There is so much information overload that at some point you just go by faith and gut feelings.  
 

It is so hard to accept that my faith prayers snd gut feelings led me straight into this hell.  

[April Marie]

Oh, @Maddee, my heart aches for all you've gone through. I know I'm also just one of those forum friends sitting behind a keyboard but I do hope and pray that you find a surgeon and team who will help you to find those rainbows again.

 

Sending love, strength and hope your way.

[Maddee]

Thanks for support @April Marie

You bring smiles to me again😊

 

im going to ask moderation if my posts should be taken down.  They’re not really newsworthy. 

 

The entire human race is suffering in medical ordeals.  
 

I just want someone to “let me in” to what’s really going on.  
 

Maybe I’m lucky not to have a clue 

 

To get close enough to who I thought I was but then foolish enough to look backwards….oh lord

 

The further I go the more hurts I find.  Old and new .

 

I’ve been around a few blocks but not this one.  

 

 

 

[April Marie]

Oh, sweetie, you don't have to be "newsworthy" to be important, to be cared about, to be loved.

 

What is this forum about if it isn't a place where we can seek help, guidance, a kind word, a shoulder to lean or cry on, or a laugh. It's a place to vent - God knows it helped me when I hit a dark place a few months back and people like you helped pull me back.

 

Your post matters because YOU matter. I wish I could lift some of that hurt from you or offer more than a few words. As much as I love this time of day, it is also a very tough time when we're in a bad place in our minds. The darkness seems pervasive and overpowering. But, daylight IS coming.

 

I know that I am so new to this experience that I can't offer much but I, like @Mmindy and others, will always be here to hold you up when you need us...just like you've been there for us.

 

With love,

 

April

 

 

[Mmindy]

@Maddee I can't say any better than @April Marie did.

You don't have to be news worthy to post your heart ache. When you're down, we (everyone on these forums) are here to listen, hold and care about you.

Time and darkness always seem to be against us. Continue your research for a doctor who will do your revision.

 

Love and prayers,

 

Mindy🐛🏳️‍⚧️🦋

 

[Jani]

Maddee your posts are fine.  You belong here and this is a place for you to vent your frustration and gain support.

 

Hugs, 

Jani

[Kylie]

I hope you found some comfort. 

[Maddee]

Have a scheduled consult through Crane Center in June.  
 

but then I received a notice from them offering a free virtual consult with a post op femme person.  So I took them up on it.  Wish I didn’t!

 

She didn’t seem that interested.  I had to keep reminding her that this was a revision.  When I reminded her that I had a peritoneal, it’s like it went over her head.  In addition to all the letters I needed for my first surgery, Ishe says I now need to provide three updated letters from Drs for the revision.  I’m being told elsewhere that this is not WPATH to require these for revisions.  

Is this what gatekerpong is?  

concerned that my June consult will be a waste of time with the wrong specialist.  

[Maddee]

Sorry don’t intend to update every tiny bump in this journey.  
 

I’m trying to organize everything