Community Conversation > Post operative life

Poor surgery, disability

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Hi, first let me say how difficult it has been making this post. It has taken me 2 or 3 months and every time I sit down to write, I've had a panic attack. If I have posted this on the wrong boards, please move it to a proper place. I don't see a lot of activity on this sub-board so I doubt I will get many replies, but here goes anyway:

I had a bad time with GRS/GCS and have felt alone ever since. Ok, I said it. Things haven't been easy and a lot of the time, they honestly suck. [TW: bad surgical outcomes, body stuff] I don't know if I would use the word "botch" because it seems kind of loaded, but I had a series of issues that have complicated recovery and impacted my life greatly.

Before I go on, I want to address how reading this topic may be difficult to you, the reader that clicked. First off, thank you for reading this far. I know it is hard to read about this stuff and for some, may retraumatize if you're in the same boat. Or maybe you are a younger trans person who isn't ready for any of this stuff (and god willing, will never have to experience) and it will never apply. Or you're an un-jaded rose-tinted optimist. To you, I say, press onward; being trans isn't so bad. But if I get even one reply, this will be worth it to me. I'm aware of the discourse surrounding trans issues and surgery and I am aware the internet is absolutely rife with "TERF" discourse aka rhetoric. I consider myself a leftist and TERFs are fascists, straight-up. I try to keep a low profile and avoid them at all costs. In fact, I avoid disclosing as often as possible, for these reasons. Sometimes just thinking about my issues gives me a panic attack or makes me shut down for a couple of days. Typing this post is like my own second coming-out in a way--simultaneously painful and awkward, but also liberating. :)

I am in my late 30s and had a vaginoplasty in 2017 and things have gone fairly poorly. I went with one of the most famous surgeons, one of the OG "rock stars" in their field, but it didn't prevent me from having a bad outcome. I will do my best to hit the highlights of my story, as quickly as possible, because it's not really the point of this post:

I contracted C. diff in the hospital during recovery, which I think complicated healing. I still have flare-ups of gastric issues like this. I have had 4 surgical revisions because I have experienced ongoing on/off wound separation at various spots of my labia. The first was stitches, done via local anesthesia. But they did not hold, as the surgeon said it was too soon for stitches to work. I continued to experience wound separation of the labia in a worsening fashion. Simultaneously, I had to drop out of grad school because I experienced a colorectal abscess that I needed to be hospitalized for. I was in the hospital for about 2 weeks over xmas and they were some of the worst of my life. They did a fistulotomy and the inexperienced surgeon attempted to do stitches/a minor revision. Pain from this and of the labia made me more or less bed-bound for the next few years. Well, bed-bound at first but after a time, I could move and walk and stuff fine enough. But I was unable to sit or stand for more than a few minutes at a time, and that's a symptom I still experience now. Just too much pain and pressure. Thankfully my issues are more external (labia) than internal (vaginal) but the pain has been/is dreadful. I was on opiate pain meds for about 4 years straight and during that time, because dependent. Thankfully I have since managed to quit them. In 2020 I had another revision, this time with my original surgeon. Things looked ok, but just like before, they kind of fell apart. My body is just bad at healing it seems. I had my most recent surgery 2 months ago--once again a revision--but this time they had to do a urethral graft as they worried scar tissue would soon prevent me from peeing. Since then it has been healing, but I am still being super cautious. I still have to wear a pad. Because of a build-up of scar tissue from all these revisions, it's hard to say whether I will be able to work again or be without pain.

That's enough blathering about me. The point of all this is to say that for the last 6 years, I have been unable to work. It's really uprooted my life and taken me down some dark paths. And now I am working on building my disability case with my SOAR representative, but it is an uphill battle. And so I turn to you, dear trans community. My questions to you are straightforward:

Has anyone tried to navigate getting SSI/SSDI/disability as a result of a bad surgical outcome?
Put more simply, has anyone had a bad surgical outcome that resulted in any degree of disability, and have you sought state aid or income assistance as a result? Is anyone willing to talk about these issues, or offer resources for those who have been in this situation, such as myself? Any input, MTF or FTM is welcome.

And once again, thank you. I am not here to "expose" the ~hidden dark secret~ of transgender surgeries, nor do I seek to dissuade anyone from having them. I have known those who have had complications, but more of them who would say it went well or very well. But there don't seem to be any studies on disability resulting from surgery, and but a handful on bad surgical GRS outcomes in general. Right now, if you were to ask me if I regret my decision, I really wouldn't know how to answer. I do know that I am not regretful of my choice to transition, however. And if you've read this far and perhaps some things resonated, you might also agree that it is exceedingly difficult to find resources for someone in this position. I would welcome links to any studies, or anything like that. Lastly, if it is easier and you'd prefer to PM me for any reason, please do.

Well thank you for reading my story. I wish you all the luck

Thank you so much for sharing your story.
I’m 6 months post and having some problems healing which is aggravated by my work. 
Nothing yet like you’re describing though. .   Sounds awful, and I feel for you.
Sorry don’t t know about disability caused by GCS.  Keep asking!

Northern Star Girl:
Dear qqqq:
I am very saddened to read of your Post-Op difficulties.

However I am glad that you had signed up and become a member Susan's Place and the Forums
way back in 2015 and you have just started posting again with your 2nd post.

As you read the various threads and replies to your questions and concerns you will
find that there are members here that can identify with some of the issues that you mentioned.

     Please know that I am not trying to hijack your post and your questions and stated thoughts
but since you a brand new member of Susan's Place and the Forums....
...I wish to warmly WELCOME you to Susan's Place.
You will find this a safe and friendly place to share with others and to read about others similar trials, tribulations, and successes.
    There is information and important LINKS that I have included below.   You will find information
about the site that will help you navigate around and best utilize the features here.   
Please look closely at the LINKS in RED, answers are there to many
questions that new members ask.... won't be able to send Forums private messages until you reach 15 postings, so please
feel free to Email me if you have any questions about the Forums.

Again, Welcome to Susan's Place.
Global Moderator

Here are some links to the site rules and stuff that all new members should be familiar with:
Things that you should readSite Terms of Service & Rules to Live ByStandard Terms & DefinitionsPost Ranks (including when you can upload an avatar)Cautionary NoteReputation rulesNews posting & quoting guidelinesPhoto, avatars, & signature images policyMembership Agreement

Northern Star Girl:
Dear qqqq:

***  ONE more thing............

Please feel free to stop by the Introductions Forum to introduce yourself and
to briefly tell more members about yourself.

Since the greeting and welcoming stuff is all done, I will hand this
thread back to you and others so the conversation can continue.

Wishing you well as you continue to be involved in the forums.

Warm regards,
Global Moderator

My understanding is that most people get rejected initially. You might want to consult someone that knows about the process, such as a lawyer or someone in the medical field that deals with that as a professional. You'll probably need medical documentation as to how bad it is, why and what's the prognosis. It's almost like a malpractice in a sense, but the government being arbiter. Good luck navigating it.


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