I'm writing this as a warning of sorts and to be completely transparent.
As of right now I'm still with this surgical team but I AM looking for different surgeons because at this juncture they've completely lost all my trust. I can't continue being operated on by people who do not have my best interest in mind. This is rather long so I don't blame you if you don't wanna read but there's a TONNE to go over.
So to begin, here's my surgery dates:
- December 2022 (Cetrulo): Phallus Creation (RFF)
- January 2023 (Cetrulo & Wintner): Covering of the arm graft with a graft from the leg and the beginnings of my urethroplasty
- May 2023 (Cetrulo & Wintner): The urethroplasty has split a bit so that was to be fixed with a buccal graft and then connected to my penile urethra. That didn't happen. Wintner inverted my clitoris and made it the end of my penile urethra. But with this nerve hookup was possible
- April 2024 (O'Brien and Boysen) This was basically just my vaginectomy and was supposed to hook up my two urethras but that didn't happen
- December 2024 (O'Brien and Boysen) This was to once again fix the stricture in my penile urethra but that closed again.
Okay let me know if any of this is confusing and I'll try to elaborate in the comments.
But as you can see, this is essentially a 4 year process and I'm nowhere near done. I've been with 2 teams and I'm now looking for a 3rd. It's THAT bad. Let me explain why and why I feel like no one should go with Dr. O'Brien’s team.
I originally switched to this team because my original surgeon, Cetrulo, was moving to LA. Also I was convinced by a bunch of idiotic ppl to switch to O'Brien. They sang him HIGH praises as if the sun shone out of his ass. I THOUGHT he was a good surgeon based on their recommendations and my own research but ofc I'm wrong.
From the jump (late 2023/early 2024) there were red flags. When I initially consulted with Boysen I told him I didn't want a vaginectomy. That's actually why I chose Cetrulo, he offered urethroplasty without vaginectomy. Boysen told me essentially that it wasn't really possible to do urethroplasty without another fistula appearing again unless I did a vaginectomy
(just say you're incompetent and go). I was against this initially but wanted phalloplasty more so I agreed to do it in the end. But the red flag was that I brought up that surgeons like Crane and Chen do urethroplasty without vaginectomy and he told me a bold-faced lie about it. Basically saying that those surgeons essentially extend the urethra only through the clitoris and do a separate urethra in the neophallus. Anyone that's gotten those procedures with either of those surgeons knows that's not true.
I knew it wasn't true back then cuz I've TALKED TO SEVERAL OF Y'ALL. But I let it slide.
My mistake.
In the midst of all this, before my December 2024 surgery, I also had a cystoscopy done by Boysen to see the extent of the stricture in my penile urethra because it scarred close. He told me based on what he saw on the camera he was optimistic it wasn't extensive and that they could go ahead with the joining of the two urethras in my surgery in December. That didn't happen. The scarring was much more extensive.
He WAS transparent and said that things may change once they get under the knife but still he had that optimism and fed ME that optimism only for me to be disappointed.
(I have to sidenote here to elaborate. Apparently multiple former patients of Wintner who have had the same inverting clitoris thing have had their urethras stricture. I was explicitly told this on more than one occasion and was told that they were going to put a skin graft to try and fix the issue. But this is what I was told was the problem in the past.
But now they're making it my fault. You'll see what I mean if you read on.)
Great.
So fast forward to recent days. I'm told I'm finally ready for Stage 2 and it's originally scheduled for TWO DAYS AFTER MY BIRTHDAY. NICE!!! I go to an appointment in April to see if the penile urethra closed and spoiler alert: it had. So that plan was shafted. I was DEVASTATED. And that's an understatement tbh.
In my post operative care they wanted me to pass a catheter through my penis every day but they didn't communicate to me the frequency, so I was only doing it 2-3 times a week. Moreover for a bit I stopped cuz I was very busy with work and getting home really late.
But still I wasn't told the pertinence of doing the catheter passing every day so I didn't think it was a big deal if I faltered. Well clearly it was!!
That appointment was a clusterfuck and so were the proceeding phone calls with Dr. Loughran (an assisting doctor of O'Brien’s. Idk her official title).
I was PISSED cuz it felt like something wasn't communicated to me so I fucked up my post op care and this fucked me over big time. And I wanted Stage 2 to happen. I told them I didn't want to have another redo and I wanted to go ahead with Stage 2. They were saying no cuz I'd have to have a catheter for an extended periods of time. that it was “unpleasant”. I didn't give a single fuck.
My spouse can attest to me being a tough cookie and idc about catheters tbh (I look forward to them almost cuz I can sleep through the night with my OAB). But we worked out that I would get a revision in July and then Stage 2 in December. Okay smooth.
Before I go on I need to point out something about these calls with Dr. Loughran. There were two. The first one was enraging. We agreed to have a second one on the following Thursday and she ghosted me. I think it was a surgery that ran extra long but no one sent me a message or anything and I rearranged my whole day to be available at the time we had arranged. She said we could talk over the weekend and I was available on Saturday and she never replied to me after Friday afternoon. So I didn't hear from her all weekend. We did talk next week which was when the plan for July and then December was hashed out but the poor communication is going to be a pattern.
So from this point on there's barely any communication unless I initiate it which is already fucked up imo. I reached out to the team in May, and asked for a surgery date. This is what was said to me by Piper (the admin I think):
Great timing--I actually just emailed Dr. Boysen about this! I believe we have to wait until your cystoscopy with him on June 23rd to officially schedule, but we have a possible date of Monday, July 21st for you. Would this work for you if you're cleared after your appointment?
So based on this I'm thinking that July 21st is my surgery date (barring being cleared by Boysen). Cool! I prepare but not extensively. I move my hotel stay to the 20th and just tell my spouse about the new day. I don't do much else.
Mid June I also get a message from the PA Lineidys:
I know your surgical plan is still pending after you see Dr. Boysen on 6/23/25, but we currently have your surgery scheduled for 7/21/25. Therefore, if we move forward with that date I just wanted to let you know that we may ask you to stop your HRT 2 weeks prior - so your last dose should be no later than 7/6/25. You can restart your HRT at 7 days after surgery.
Note: If you use Androgel, that can be stopped 1 week before surgery.
Please tell me you peeped her saying “your surgery is scheduled for 7/21”. So I hope I'm not crazy for thinking that date was at least fucking reserved or something right???
I do get an appointment with Boysen for another cystoscopy on June 23rd. After he takes the fucking camera out my dick I explicitly ask him about my surgery date and he says that the date should be good. I also tell him I have paperwork from my job to be filled out for my leave and he says to send it to his team. So from these interactions I'm under the impression that he knows about the July 21st date. In addition after I sent his team the paperwork for my job I get this message:
We have received your documents. Once completed by Dr. Boysen we will send them back.
So things are working in the background for a surgery date of 7/21. At least that's what's being communicated to me.
Lol. LMAO even.
So I haven't gotten a pre-op appointment so I sent Piper a message. And she sent me back a message asking me to come in yesterday for a conversation to discuss the surgery. No problem!! I come in and it's Lin and the social worker, Emma, so I already know something is fucky.
They tell me some REAL BULLSHIT:
- I'm not getting surgery next week! Apparently that was only “pending” and not set in stone. Even though I was told numerous times it was pending Boysen’s approval and I was given Boysen's approval. So apparently he communicated something completely different to me than he did to O'Brien. AND NO ONE TOLD ME. No one gave me any indication until today that my surgery wasn't happening. I already started the process for leave off work. My spouse took time off. My SIL took time off. I booked a fucking hotel and I can't get that money back because I used a card with an account that I closed. WHAT THE FUCK.
- I'm too fat for surgery. Even though they operated on me twice thus far and were going to operate on me a 3rd time, suddenly I'm just morbidly obese I guess and completely unable to be operated on unless I lose an absurd amount of weight or something. Mind you, I lost almost 40 lbs hitherto in the past 4 months! But that's not enough. I need to lose more (I used to be 270 lbs). Lin straight up told me to get on Ozempic. Like???? What the fuck!!??! (I used to be prediabetic too so wouldn't going on a GLP-1 fuck with my potential diabetes idk the ins and outs tho)I even told her and Emma that I have trauma surrounding food and weight loss and she said that O'Brien might not care. So this man is operating on a vulnerable demographic that MANY have their fair share of various kinds of trauma and he wants to inflict more??? Why the fuck did he operate on me to begin with? Why the fuck is he working with such vulnerable people??? Why not just turn me away if I was too fucking fat!???!? Lin said they made exceptions for Cetrulo’s patients (Cetrulo had no BMI limit) and now they're pulling the rug from under me.
- They don't know WHEN my surgery will be. Not at all. Like, apparently Boysen talked to O'Brien and they came up with some basic semblance of a plan, ran this modicum of bullshit by me, and then O'Brien went on vacation. Cool. Like I genuinely don't know what they're going to do. Boysen posited to me doing a buccal graft instead of a skin graft this time to see if they yields better results (after the cystoscopy) but that's not even a fucking concept anymore I guess??
- To further elaborate on the first point actually. So like, let's say the original plan for my surgery was "Plan A", right? But after Boysen saw whatever he saw in the cystoscopy he was like "oh we have to do 'Plan B' actually". So I asked why couldn't Plan B happen on the 21st. She said they needed more time to hash things out. But this wasn't communicated to me!!! Moreover it's been 3+ fucking weeks do these ppl never talk?? She tried to make it sound like they needed to talk to me first before making their plan but all Lin told me was that I was too fat and to keep the catheter in longer and I don't see why that was such a necessary conversation when me being fat was never an issue before today and the catheter thing could've been addressed at my first post op. So it really seems like they just dropped the ball majorly and frankly strung me along.
One thing I forgot to mention was that in today's discussion Lin outright told me that she was unaware about my surgery date for 7/21. But as you saw above SHE FUCKING SAID that it was scheduled. So when I called her out on it, she pointed out that she said it was “pending”. Pending Boysen's approval. Which he told me he gave. But he gave O'Brien’s team some completely different information THAT WAS NOT COMMUNICATED TO ME.
NOTHING WAS FUCKING COMMUNICATED TO MEEEEEE!!!
I need to give further context: I don't live in Massachusetts, I live in RI.
Moreover, I don't have a car. So I have to ride a train, ride a subway, and ride a shuttle to get to these appointments. I literally leave 5 hours before to get to my appointments on time. And that's why I need to get a hotel: I book it for the day before and leave at 5 am to get to my surgery on time cuz there's no train that runs that early. This is a fucking kerfuffle for me to figure out each and every time. The logistics are ANNOYING. So I have to fuck everything and just throw it all away because I was low-key lied to for several fucking months.
I feel like this team thinks all their patients are privileged white ppl with all the support in the world when that's the furthest thing from the truth. And I expressed to them MULTIPLE TIMES how hard all this shit was on me at least from a logistical standpoint (and much more!) and it still seems like they don't care.
It's also just absurd to me that I was made to feel stupid for having myself and my family prepare for this projected date even though I didn't get a pre-op letter. First off
I had to ask for my surgery date all the way back in May to begin with. And then for the appointment yesterday
I had to ask for that too. Lin said she told Piper to reach out to me and SHE NEVER FUCKING DID. So if I never sent her a message I would've turned up at the hospital next week and no one would have any idea why I was even there. That's just wild to me because it makes me feel like they just think I can take extensive time off work, book a hotel, have my spouse take time off, have my SIL take time off, and so much more at the drop of a hat. FOR FUCKS SAKE NO???
Be more appreciative of the time your patients take out to fucking accommodate you.
I can't keep doing this. I hope it's clear why I can't keep doing this. The communication is abysmal. I was lied to in the very fucking beginning and forced to do a procedure I didn't want. I'm “fine” with it now but I'm still a little bitter about it some days.
Now I'm essentially going to be forced to do something else (go on Ozempic) or else they won't operate on me anymore and they don't care about the trauma this will cause me. Again, the communication is fucking ABYSMAL.
They were low-key gaslighting me tbh. Like I genuinely left the appointment today feeling like I was going insane and had to talk to my spouse and a friend to calm me down. They don't have any respect for the myriad of bullshit they're putting on me. And I'm sick of this.
Fun little side note: I asked Emma if anyone else was dealing with some fuck shit and they said “People have dealt with some _BS._” Oh that's reassuring. I mean that genuinely and sarcastically. It's nice knowing I'm not alone but saddening knowing that this team is full of bullshit. Also the fact that the fucking social worker is privy to this leads me to believe that multiple patients have vented to her. They're not on the medical side of things but they're still knowledgeable about all the fuck shit that's happening. This tells me it's a CHRONIC issue.
Circling back to the idiots that recommended this travesty of a surgical team: they would hem and haw about how Cetrulo was egotistical, didn't know what he was doing, rushed their appointments, and was an ass. I genuinely don't know why the everloving fuck I listened to them because that's the completely OPPOSITE of my experience. At least that man showed up to all my fucking appointments. I've seen O'Brien like once maybe twice since December. And Cetrulo always answered my questions, seemed very knowledgeable imo, and was a cool dude.
I will admit he did seem a tad egotistical but I thought it was humourous and it never put me off him. And lbr, what doctor doesn't have an ego these days? I know O'Brien definitely does.
And continuing on this train, at least Cetrulo actually tried to fucking work with me and get me further in my process, even though Wintner was chronically fucking me over. Like Wintner was supposed to be in my first surgery in December 2022 but he bailed 2 weeks before and Cetrulo still did something. He had to delay the nerve hookup but still progressed at much as he could (despite Wintner doing essentially the bare minimum surgically every fucking time) to like give me
something. Cetrulo has honestly been the only motherfucker that seemed to actually give a semblance of a rat’s ass about my care.
Anyway, back to the point I'm trying to make: just avoid this team. Clearly they're not above lying to their patients, they DEFINITELY don't give a rat’s ass about fucking talking to them about the bare bones necessary bullshit, seem to chronically fuck over multiple people, essentially gaslight their patients, keeping appointments is a suggestion I guess, and maybe you'll get a doctor that'll give you the time of day.
The only good thing about this whole experience has been Emma who's been candid, honest, and humble the entire time. Like they're the only one that I can look to in order to help me keep some semblance of sanity in these appointments cuz I outright don't trust any of these people anymore.
They even gave me the number to Family Services I think it's called where I can lodge a complaint about the team's numerous failings and I'm definitely doing that when I have the time. I doubt it'll do much but I still want to try. Also they're the only one that doesn't misgender me there so that's nice
(everyone there calls me “he”, but I'm nonbinary and use “they” pronouns. You'd think a team “dedicated” to helping trans clients would use their correct pronouns as a starting point).
I straight up told her I felt like there was some degree of racism (I'm mixed black) at play here, and please don't roll your eyes, the current affairs should tell you racism is alive and well. You have to realise
medical racism is still very evident with many white doctors still believing in current times that black people feel less pain. But we can also go back to the forced sterilisations of hundreds of black women, the methods Marion Sims used to discover his gynaecological findings, the Tuskegee Syphilis Study, and much much more. If you're going to fight me on the fact that medical racism is a thing just block me and leave. Many doctors are fucking racist and they may not even realise it.
So to sit there and essentially force a black person to undergo medical procedures they did not want and force them to retraumitise themselves or renege your services is fucking diabolical.
(And I'm going to address this here cuz I know there's O'Brien patients in this group:
yes Lin is not white. I believe she's Latina. First off, anyone of any race is capable of upholding white supremacy. Secondly, I've had my fair share of Latines be antiblack to me. So no, she's not exempt. Also, another sidenote she's the only PoC there which really shows this office's commitment to diversity.)
Anyway, I'm sorry if this rant seemed disjointed, again hmu if you have any questions I'll be happy to answer them. Like I said in the beginning I know it's long but I just wanted to be as clear as possible so I fit a tonne of info in. And there's still probably a bunch of nonsense I missed. I'm so over this whole experience. If you're going to get this surgery, just make sure the team you're going with is DAMN good. Do not make the same mistakes I did. And definitely do not trust O'Brien’s team.
I asked Lin if she actually cared or if the loss of funds was the most pressing issue and she outright said she got paid either way so I mean me leaving is not that big of a fucking concern. She tried to finesse it and say that she meant it in a way like saying she cares about her patients more than the income but then why gaslight them!????!
It's like I know at the end of the day this whole shebang is a business but you can operate a business and still treat your clients LIKE FUCKING PEOPLE. Everyone in this clinic is treating me like I'm a damned moron that they can lie to and the only (and biggest) moronic thing I've done is trust them with my care.