Penile-Preserving, Laproscopic Peritoneal-Pullthrough GCS with Dr. Heidi Wittenberg, Post-Op Year 3-ish?

76
u/the_weird_stuff
Tue Aug 9 21:39:56 2022 UTC
(23 comments)

Wow, folks! Been awhile since my last update, and alot has happened. Haven't even looked on here for years but I figured y'all deserve an update from me :~).

My "Final Verdict" in a nutshell is - don't get what I got. The promising nature at the beginning (natural lube, some interesting sensation) has went away completely after a couple years. I think that there is still very slight lubrication (possibly even enough to clean it out) but is in general pretty dry and numb. To be honest, I'm probably going to get it removed. It was (as I knew going in) an experiment, and I'd consider it a failed one.

(That said, a teeny silver sliver: it didnt completely close even after maybe 1.5 years of not dilating - but any insertion would require dilating from scratch)

The thing I'm probably most disappointed by is the "2nd Stage" surgery, wherein the outer anatomy is supposed to be constructed. It didn't do anything to make it look more natural, and consider that surgery particularly to be a complete waste to the point of false advertising.

I hope others have had better long-term outcomes with it, but I have no idea what's been going on this space for years TBH. Life has got alot better all around especially since FFS last year so I'm not in the trans online spaces at all these days. Friends and family have accepted me due to FFS's success and I have a partner now and such. I honestly wish I hadn't got GCS at all, but oh well!

I'll keep tabs on replies and such for a couple weeks so feel free to reach out with extra questions if you'd like.

all 23 comments


17
u/MischiefThePony
Tue Aug 9 22:13:29 2022 UTC
(2 children)

So sorry to hear that it didn't end up what you were looking for, though it does sound like you have been able to move on anyway and be happy.

Not to discount your experience in any way, and certainly not a knock to your expectations, but something you said caught my attention pretty quickly. That 2nd stage surgery (vulvoplasty, I am guessing?) didn't do anything to make things look "more natural". Penile Preservation is still a very new technique - even more so when you got it - so the aesthetics would be a whole different level of alterations to original anatomy. There is really nothing 'natural' for the surgeon to reference for this, so trying to make the vulva look like even traditional GCS vaginoplasty I would have to imagine took some serious creativity. It absolutely didn't meet what you envisioned, obviously, but I am not sure that this is necessarily a knock against the surgeon given the uniqueness of the process. You are a pioneer in this based on the time line alone - and those who have come after you owe a bit of gratitude for the improvements which (I imagine) have followed in the intervening years.

Thank you for providing the honest feedback about your experience. It will surely help others with their journeys moving forward. đź’śđź’ś

19
OP
Tue Aug 9 22:36:31 2022 UTC
(1 child)

Thanks for pointing that out, and you're right that "natural" is a bit of an odd term to use here. However, I think you're wrong in saying that there's nothing natural to reference in this case. It is quite literally in the name vulvoplasty , and the goal of the surgery is to construct a vulva , and we do have documented examples of natural penis + vulva genitalia (intersex folk!) to reference. Regardless, I had (obviously?) discussed expectations going in to the surgery, and I think they were much too optimistic about what they could do with the material available.

5
Wed Aug 10 21:03:22 2022 UTC
(0 children)

What intersex condition is that? Do you have any sources for that, cos as far as I'm aware, it is developmentally impossible for humans to naturally have both sets because of the way the genitals differentiate in the womb. You have one genital tubercle as a fetus and then that differentiates. You can have ambiguous (large phallic clitoris, hypospadias, separated scrotum/fused labia ect) but not both. But I would like to learn if im wrong though!

I'm sorry your surgery didn't go well, but thank you providing the information and updates anyway. At the very least, your experience may be able to be used to further progress certain techniques. 'That didn't work, why not, what can we do differently?' Kinda thing. All the best

10
u/mononoke_princessa
Tue Aug 9 21:51:46 2022 UTC
(2 children)

So sorry to hear that you’re regretting getting PSV. Can you elaborate more? What was your mindset going in to surgery and how has it changed since?

If you could go back in time, would you have opted for traditional GCS? And if so, why?

If these are too personal, and you rather message me - that’s totally fine too.

I work part time with other post op women/people, and PSV is something relatively new to me and I’m trying to learn as much as I can prior to working with my first PSV person ❤️

28
OP
Tue Aug 9 22:49:32 2022 UTC
(1 child)

I think my mindset in the long-term was "oh boy if this works out, it'll be magical. But if it doesn't, I'll still have the penis. And it's contributing to trans health by participating in this experiment". It varied over time (it's hard to accept an experiment failed when it so impacts my life and took so much) but I appreciate every bit of emotional distance and kinda-objectivity I had fostered in these years.

Knowing what I do now, I wouldn't have anything more than the orchi. I still have mild amounts of dysphoria about my genitalia but I don't think current GCS would address it enough to be worth it, since I really am fine with a penis.

6
Tue Aug 9 22:58:23 2022 UTC
(0 children)

thank you so much for responding

8
u/TransThrowAway482618
Wed Aug 10 01:39:42 2022 UTC
(0 children)

I'm especially interested to hear about your experience not dilating for so long because I had a complication myself that will require not dilating for a while. Do you know how much depth you still have? How long were you regularly dilating before you stopped?

Thank you so much for sharing your experiences, and trying this out so many years ahead of me đź’ś

6
u/Medical_Cell
Wed Aug 10 03:28:06 2022 UTC
(0 children)

You mention sensation - would you be able to elaborate at all? Was the canal placed so that the prostate was above it and could it be stimulated? Has that changed? Or sensation on the outside?

6
u/efxAlice
Wed Aug 10 11:59:04 2022 UTC
(0 children)

Thank you for coming back! You imply that you haven't dialated in 1.5 years...could you tell us why you stopped after 1.5 years? Were there physical problems with the dialating itself (e.g. loss of width, pain)?

4
u/Optional_Joystick
Wed Aug 10 13:06:18 2022 UTC
(0 children)

Mine's still self-lubricating, but like you said, very slight. Mostly just annoying enough to wake me up if I sleep without underwear. I'm interested in the idea of stopping dilation, since it still hurts for me 2 years later. Lack of sensation isn't an issue for me, but all I feel is pain. Since width can be recovered later, can you tell me your depth after not dilating for so long?

I prioritized the vaginoplasty over FFS, but now you're making me think I should have done it the other way around. Did you keep trying to dilate after you got FFS? I was worried that I'd have lots of depth loss if I couldn't keep it up.

4
u/salamander-dalmatian
Tue Aug 9 22:04:36 2022 UTC
(1 child)

Would you say this was an issue with the particular surgeon, or simply an experiment that didn't end up working out for you as well as you'd hoped?

7
OP
Tue Aug 9 22:40:55 2022 UTC
(0 children)

I honestly don't know enough about surgery and the body and everything that went into my experience to say. Personally I think the specific surgery itself has fundamental limitations that could have been overcome since then. Even the second stage (vulvoplasty) was a mix. Seeing clearly in hindsight, there just wasn't enough material for a traditional proper stage 2.

2
u/unjxtapsd
Tue Aug 9 21:48:31 2022 UTC
(3 children)

I'd be interested to know about your overall experience with Hiedi Wittenberg, and whether you had considered penile inversion, and if so why you went with the PPT. Glad to hear FFS has helped and thanks for sharing!

7
Tue Aug 9 21:58:18 2022 UTC
(0 children)

OP indicated that they had Penile Preserving Vaginoplasty (kept the penis and added a canal), so PIV wasn't an option in that case.

8
OP
Tue Aug 9 22:52:52 2022 UTC
(0 children)

Yeah Pony is right. As far as my overall experience - she and everyone else were nice and helpful and professional and upfront about the experimental nature of all this, which I appreciate so much. They were a great team to do this with.

4
Wed Aug 10 09:31:19 2022 UTC
(0 children)

Well as you can imagine it's hard to preserve the penis if you turn it into the vagina.

2
u/GenderOtter
Wed Aug 10 21:06:47 2022 UTC
(0 children)

Do you experience any pain from normal activities like walking, sitting, exercising, etc.?

I appreciate your post. I’ve been considering this procedure and I’m thankful for your update. Really sorry that it didn’t turn out like you had wanted

2
u/zutaten2021
Sun Nov 27 23:58:26 2022 UTC
(0 children)

But do you think this was because of it being the penile preservation one or what you are saying is that peritoneal flap in itself is a failed experiment ?

2
u/Ectophylla_alba
Wed Aug 10 00:18:38 2022 UTC
(0 children)

Sorry to hear that you’re not happy with the results. I am pretty impressed that it didn’t heal closed after not dilating for so long, though! Were there other downsides to the peritoneal tissue besides losing lubrication after a while?

-8
u/symbolizsm
Wed Aug 10 06:16:06 2022 UTC
(4 children)

There's a reason why I will never get bottom surgery. It can be experimental.

7
Wed Aug 10 14:14:49 2022 UTC
(1 child)

There's plenty of surgeries that have a very high success rate and have been done thousands of times by now... By most health standards, those are not considered experimental anymore. Glad I could clear that up for ya :)

6
Wed Aug 10 19:46:45 2022 UTC
(1 child)

then why on earth do you spend so much time here posting about stuff you know nothing about? good grief