Post-GCS Update - Day 11

5
u/TWGCSOMGWTFBBQ
Mon Nov 21 15:02:13 2022 UTC
(9 comments)

For those who haven't followed my previous post - GCS at Mass General (MGH), Penile Inversion, with Dr. Winograd's team.

I've been lurking here for what feels like forever, and I feel like I'm in a decent position now to discuss something that doesn't seem to be high on a lot of people's minds - the hospital stay.

Out of everything that has happened since surgery, the 5 days in the hospital were some of the worst of my life. MGH's team takes care of pain by setting you up with an epidural. This was huge over the first couple days, because I felt next to nothing pain wise. I didn't press the pain button for over two days post - surgery. It was the least of my worries.

What really bothered me? Sleep. I begged from day one in the hospital to get something to sleep. between an uncomfortable bed, a loud roommate, and plenty of comings and goings overnight, it was impossible to get any sleep whatsoever.

The patient assistant team at MGH was...not great. The people tasked with assisting me seemed unequipped to do so, or in other cases, uninterested. Their main focus was getting my blood pressure and stats as tasked by the nursing team. The nursing team was helpful when available, however plastic surgery shares a floor with the burn unit, so I was really relegated to the least priority throughout my stay. In some cases I didn't see my nurse for almost 5 hours during the day.

At one point, while trying to lower my epidural in advance of removal, I asked for pain medication and was made to wait over an hour because they couldn't find my nurse. Just plain unacceptable.

The last two nights in the hospital I begged for something to go to sleep, so much so as to complain about itchiness again in order to get a benadryl on the last night, which helped. I was then awoken twice before midnight to erroneously get my blood pressure one too many times. When I found I couldn't get another benadryl to try and sleep, I wept to myself for over a half hour. It took me two hours to go back to sleep. The last day in the hospital, I was laser focused on getting everything that needed to be done as early as possible in the morning.

If there is one piece of advice I can offer from my experience, it is to MAKE SURE YOU HAVING SOMETHING TO SLEEP ON YOUR MEDICATION LIST. I am typically the world's best sleeper, and this damn near broke me.

My current status is much better. Healing is obvious, swelling is decreasing, pain is now negligible. Dilation is going well, can definitely tell my body is trying to fight me, but staying diligent and consistent is keeping depth at the full 5 dots. Mobility is great, and energy is coming back faster than I expected. I'm expecting another full two weeks of healing before I'm mostly back to normal, but so far, so good.

all 9 comments


2
u/GETMONEYFUCKTHESYT3M
Mon Nov 21 23:05:10 2022 UTC
(3 children)

Thanks for sharing your experience here. I had phalloplasty at MGH 21 days ago, and i can really feel you on the hospital stay being hard, and at some points, reallyyyy distressing. being on the plastics/burn floor would have been fine if they placed GCS/SRS patients either in rooms together or just completely privately. it felt like a huge invasion of privacy having a roommate while nurses were handling my new penis and balls, all in earshot. at one point i had a roommate that was a GI patient and was burping and farting nonstop lol. the surgeons, anesthesia team, and nurses were and are phenomenally skilled and talented but that set up was definitely not the most optimal for comfy healing for SRS patients. i did feel as though my care was prioritized (phallo took 10 hours in the OR) but plastics and burns together is an interesting mix.

2
OP
Mon Nov 21 23:08:08 2022 UTC
(2 children)

Knowing there was another Vaginoplasty happening at the same time, I really hoped to share a room with that person. It was definitely not a great situation being on that floor.

2
Mon Nov 21 23:11:15 2022 UTC
(1 child)

there was another phallo patient there at the same time i was hoping to be placed with him. really sorry they didn’t get you something to sleep either. they had me on melatonin every night by 6pm and that didn’t do much after the constant vitals checks. hope your healing continues to go well now that you’re out of the hospital <3

2
OP
Tue Nov 22 00:01:22 2022 UTC
(0 children)

Thanks, definitely doing better since I was home. I got offered the Melatonin too. Took it every night and it didn't do squat.

1
u/MonetSouffle
Tue Dec 13 00:54:31 2022 UTC
(4 children)

It’s probably too soon to tell but how do you feel about the aesthetics? I wanted to use Bluebond but she won’t take Tufts so I likely need to see a Boston surgeon. Winograd is going to do my top surgery so I wonder if I should consider him for vaginoplasty too.

2
OP
Tue Dec 13 20:57:29 2022 UTC
(3 children)

It's still really early, going on 5 weeks. The majority of swelling has gone down, but it's still early. I would say so far that I'm happy with how everything looks and feels, as well as my depth. Everything works as it should, and by four weeks I was back up and being mostly my normal self. Overall I really have no complaints and Dr. Winograd's team have been pretty fantastic.

I would've loved to consider Bluebond but between having to stay close by as well as the obscenely long waiting list, I preferred to pick someone in Boston.

1
Wed Dec 14 20:29:02 2022 UTC
(2 children)

Did he show you any photos of his work at your consultation? I luckily got a decent date set with Bluebond and feel so comfortable knowing I’m going to get great results, but the fact I have to pay for Cobra insurance is too much money. I really wish Boston surgeons would be a lot more transparent about their work like other top surgeons for GCS. I’d go with someone in Boston instead if I could gain more confidence in them.

3
OP
Wed Dec 14 20:35:27 2022 UTC
(1 child)

Didn't see any photos at my consult. He was somewhat dismissive. But I knew someone who had gone to him and she overwhelmingly recommended him. The new gyno urologist, Dr. Kim, is an absolute delight to work with, and she's very sensitive to the aesthetics. I wasn't even her patient and she came to see me twice in my hospital room.

If you don't get the warm and fuzzies from Winograd, definitely go check with Dr. Kim before you decide to go elsewhere.

2
Wed Dec 14 20:40:01 2022 UTC
(0 children)

Okay thanks so much for your review and the info I’ll call to schedule a consult. Although there are hardly any reviews I guess it’s good to see that the info available is positive.