It took me a long time to come to terms with everything that happened to me in recovery, acknowledging my medical trauma. I was and still am hesitant to completely blacklist a surgeon that got me and others closer to comfort with our bodies. But no one should ever have to go through things like this again. This is my experience and can only speak for myself, but know there are several others of us who have been hurt and traumatized by this team.
I had stage one of RFF phallo with Dr Ganor and the gender surgery team at BCH in Boston, MA in April 2021. I had additional surgeries related to stage one complications on 6-7, 6-22, 6-30, and 11-18. For most of 2021 after receiving care here and throughout my consult process, I:
-Was told that urological complications happen in 40-50% of patients. I’m not aware of any patient of theirs that DIDN’T experience urological issues or didn’t take multiple surgeries to fix.
-Staging/method of my surgery changed 4 times throughout the process to “minimize complications”, including once right before my surgery with little to no warning. The staging did nothing to prevent/minimize complications.
-You are given direct emails to staff/PA’s in plastics, but nothing for urology. You have to call the general urology line, wait for hours while writhing in pain, and sometimes not even receive a call back. If it’s the weekend or before 8/after 5, you’re out of luck. Even if your catheter bag is filling with blood or you can’t pass urine, your only advice will be “flush the tube” after waiting hours.
-Had limb swelling and chest pain ignored and misdiagnosed as being “normal” or constipation for weeks until I had DVT in both legs, blood clots in my pelvis, and bilateral pulmonary embolism. I still have joint pain and swelling issues in my legs from DVT damage.
-Urology staff ignored my breathing concerns and listed my lung functions as normal in my ER report the night before my ICU admission for clots despite struggling to breathe and my chest audibly gurgling. They discharged me without any medications after saying “I wasted my time driving down there”. There was a chance the clots could’ve killed me soon after if I didn’t get a second opinion.
-BCH didn’t read any notes or reports written by staff at the hospital I was receiving clot treatment at. BCH supposedly discovered a urethral diverticulum for the first time on 6/22, but this was already diagnosed by the previous hospital on 5/11.
-Urology did nothing to treat my diverticulum for nearly 6 months, despite discovering it. It made me completely incontinent and in diapers 24/7 for that entire time frame. They said my “leakage was normal”.
-Urology would not diagnose or examine me for bladder stones despite getting new UTI’s every single week and constant lower left back pain. I had stones for at least 4 months straight with no treatment.
-Urology would not examine me for a stricture despite it getting to the point where I couldn’t push anything through my urethra except a couple drops. I told them multiple times, they said it was “probably constipation” and an exam was not necessary. I had stricture symptoms for over 4 months with zero treatment.
I believed that this team had my best interests for far too long and falsely thought “I was just that one unfortunate case”. There was hurt people before me, there was hurt people after me. The team has new doctors and staff that have greatly improved complications and experiences, don’t get me wrong. But the experience didn’t change whatsoever when several of us gained permanent complications, weren’t given treatment for months, literally almost died because of their frequent inactions. Honestly fuck this hospital and how it’s treated patients of the past as well as everyone now.
Dr Ganor is a great surgeon with an iffy bedside manner and not very warm, especially after you experience unplanned complications that stray your surgical path. But several other doctors and staff on the team, especially in the urology department, have given out reprehensible care or a lack thereof that has left patients in recovery limbo, traumatized people, or threatened some peoples’ lives. Their team changes, but the trauma and memories stay. I’m barely complete with stage one and don’t know when or if I’ll be having any more surgeries. I really can’t recommend anyone go to this team if they want optimal urology care, a short surgical timeline, or efficient treatment.