We need to talk about lower surgery after care
On the 12th Jan 2016 I was admitted to The hospital of St Johns and Elizabeth in London for RA Phalloplasty stage 3, the following day, under the care of Mr Garaffa. This surgical stage was set to be the final stage, where I would have the erectile device fitted, I opted for the inflatable device, and would have the pump as the second testicle in completing my scrotum.
I awoke from surgery in recovery to be told they had been unable to insert the erectile device due to finding an issue in my urethra. I cant remember the exact details as I was still very much under the influence of the anaesthesia.
I am of course hugely disappointed, however I do understand that issues needed to be fixed first and I am very glad they were found now rather than later. What makes the disappointment worse though is the shocking level of inadequate care and information that followed in the hours to come that led to me being discharged without any clear instructions as to what surgery had actually been performed, what wounds I had, or what after care was needed for wound care or for the catheter l had fitted which l would apparently need for 3 weeks.
The day following discharge, I spent all day making calls, leaving messages and sending emails in attempt to discover the details as to what exactly I had done and to get some clear post operative advice. By the end of the day l had not managed to gather much information at all, just a few pieces of the puzzle and l was exhausted. After giving up in the early evening, l finally received a message from Mr Garaffa. Although not clearly answering my questions, he did at least provide basic information as to what had been performed. Apparently, once under anesthetic he tried to catheterisation me and couldn’t and so performed a cystoscopy (a camera into the bladder) to see what the problem was. He then found “a widening” which needed to be fixed, answering the question as to why l have a wound on my scrotum where he went in to fix the issue. Mr Garaffa informed me that although I was asymptomatic now, issues could arise later and so it was best to get it fixed now before fitting the erectile device. He went on to say that once healed l will be able to have the device fitted. I am a little confused, a widening would surely not stop the catheter, so l presume he means a narrowing, i.e. that the urethral pipe needed widening. I didn’t email back to get it clarified, I’ve just had enough of chasing this now and l need to put my energy into healing.
It seems utterly ridiculous that it’s taken this long to get a full explanation, and actually not even a completely clear one. This simply could have been put on my notes and saved me a huge amount of stress, nursing staff surely should have been informed of what had happened, and surely they need to be so as to take care of me properly. Just having access to my vital statistics such as temperature and blood pressure is not enough to take proper care of me. I just do not understand this at all. What is worse than this really, is that I am not the only one to have been subject to such neglect from nursing teams involved with lower surgery care. Lower surgery outcomes are improving greatly but it seems that nursing care is not.
Experiences vary greatly between people and between hospital. I have had good experiences in The Spire Thames Valley hospital where I had stages 1 and 2 , whereas others have had awful experience’s there. Conversely, people have had wonderful experiences in the hospital I have just been discharged from. It doesn’t seem attached to one surgeon either. I have only had Mr Christopher before, and he has always been very professional, always visited me after to tell me what he did , how it went and how to care for myself post operatively. Other people speak as highly of Mr Garaffa. It seems an entirely hit and miss event where you never can tell if you are going to be one of the unfortunate people on the end of inadequate care.
So what is going on? Something is clearly failing somewhere. I wonder if this is due to the fact that the amount of guys opting for lower surgery now has increased so much that there just isn’t enough correctly informed medical staff to do the after care. The blame cannot lie solely with the nursing team however, they have to have adequate instructions from the surgical team so in the cases of inadequate care this must be what is happening, a breakdown in communication between the surgical team and the medical team. Whatever the issue is its inexcusable, we shouldn’t have to be fearful of going in for operations, not knowing if we are going to be properly cared for. Currently most of our information is obtained within our social support circle, if it wasn’t the Phalloplasty support forums I personally would be lost.
I know and understand the fear people have in making a complaint. Access to gender affirming treatment surgery for transgender people in the UK is tentative, with the NHS in crisis and views of trans people still misrepresented we often face the view that our treatment is a waste of money. I believe this has lead to a culture of just grinning and bearing it, because we feel we should just be grateful for what we have and put up with it. That and of course we only have one lower surgery team available here in the UK, we have no alternative choice and so there is a fear that if we complain, we may upset our only team of surgeon’s available to meet our lower surgery needs. This is just not on. We are not asking for special treatment, just the basic standards of care, correct information and post operative advice . This should be a right not a privilege
Surgeons surely want this too? With Phalloplasty techniques improving everyday, surely they want to protect these good statistics by making sure their hard work is properly looked after post operatively?
I believe whole heartedly in the success of lower surgery procedures in giving trans men a greater quality of life, this is why l share my own lower surgery journey so openly, to dispel the myths that still surround it and to show just how much more successful it is in current times. I am not happy that l am promoting something which then people have such horrendously experiences of post operatively. Therefore I feel a responsibility to speak out
I too am fearful of the consequences of speaking publicly but I cannot sit in silence after this. I’ve heard too many horror stories and now finding myself as the protagonist within one and truly understanding the trauma such an experience leaves you with I just cannot let this slide. By speaking out I’m not setting out to place blame on a particular hospital or on a particular surgeon because l simply don’t think it’s as straight forward as this, neither am l setting out to complain just for the sake of it, I am speaking out because I believe in this surgery and the surgeons abilities and l don’t want to see poor care and incorrect post operative advice give it a bad reputation and loose the forward motion that lower surgery has seen over recent years.
My hope is that in speaking out, the surgical team will be more aware of issues that they may not currently be aware of and will then work together with us and with those involved in our aftercare, to ensure better experiences and ultimately better outcomes, for all those who chose to undergo any type of lower surgery.
