“There was a difference between what I would have liked to have gotten and what I got” — quote from an RFF phalloplasty patient interviewed during this project
(This resource relies on database and hospital document research, interviews with patients who have undergone RFF phalloplasty, and medical professionals who work with people during and after RFF. Former RFF patients will be referred to as “interviewees” or “clients.” Medical professionals will be referred to by their medical title [doctor, PA, OT, etc]. Any information included in this resource has been anonymized for the comfort of the interviewees/medical professionals involved).
This section of the website was informed by interviews with patients who have previous had, and recovered from, RFF phalloplasty. All information has been anonymized.
RFF phalloplasty recovery is complex and occurs over a period of months, if not years. Clients go through a variety of therapies and recovery experiences in this process.
OT Access After Phalloplasty
Access to therapies after phalloplasty varies widely based on several factors; availability of therapists in the area where one lives, insurance coverage, surgeon recommendations, and so on. Some clients received months of therapy after surgery, including inpatient and outpatient therapies; others received a handful of therapy sessions, mainly inpatient. Some clients had access to several therapies, including pelvic floor PT/OT, OT hand therapy, postsurgery PT, and OT specifically for wound care or scar massage; others received only hand therapy and PT after surgery. Clients who received more therapies tended to report higher satisfaction with their care; clients with limited therapy often reported concerns about their functional outcomes.
Many clients reported “wraparound” services that involved inpatient and outpatient therapy from the same hospitals. Others reported seeing outpatient therapists at a different facility than their surgery took place at.
Some clients who had outpatient therapy at a different facility commented that they felt uncomfortable discussing the procedure with their outpatient provider or felt like their outpatient provider wasn’t familiar with the procedure. Some patients expressed interest in a handout that they could give to their outpatient provider that explains what happened to their hand and wrist without “outing” them as trans to the provider; download that handout here, or find it in the resources page.
Most clients return to full wrist functionality, although interviewees often reported that they were slightly reduced in their ability to flex their wrist. Two clients reported some difficulty doing push-ups.
Clients reported concerns about returning to a variety of activities that involved the hands. Playing guitar, working on their car, knitting and crocheting, working out, weightlifting, typing on a computer, and returning to work tasks that involves hands were activities clients mentioned worrying about being able to resume. Interviewees typically reported being able to resume simple ADLs with minimal assistance within a few weeks. All interviewees reported that they had been able to resume the reported activities within a month.
Other Ways OT Might be Utilized
A few interviewees shared ideas for ways that OT might be used after RFF phalloplasty that it is not being used currently. Two suggested ways are listed here:
These are offered as food for thought for OTs; how are our skills currently being incorporated into gender-affirming care? What are ways they might be incorporated in the future? It is also worth considering the ways clients are affected by this lack of services. I.e., a client who does not undergo sensory integration of the neophallus may struggle to gain sensation. OT could play a role in the healing process that could greatly enhance quality of life after RFF phalloplasty (functionality of the neophallus correlates significantly with higher QOL scores).
List of supplies that patients mentioned finding helpful in recovery (The links are not affiliated with this project in any way):
Shower chair: Useful during recovery, as standing may be painful due to thigh graft and patient may feel fatigue
Scalp brush for shower: Helps wash hair when one is only able to use one hand during early recovery
Caregiving needs after surgery
Clients may be following a variety of surgical precautions; for example, clients are unable to bend at the waist for a period of time after surgery because it will restrict bloodflow to the neophallus. Many clients report finding standing and walking painful, due to the skin graft taken from the thigh; conversely, some clients find sitting painful.
Clients who have limited caregiving are able to set themselves up for success during surgery by eliminating tasks that require bending at the waist. Clinicians recommend putting needed supplies for cooking and other tasks on the countertop ahead of time so they are ready post surgery and other similar adaptations.
Functionality after Phalloplasty 