My Hysterectomy Experience
I have been slack in updating my journal over the past month. It’s been a bit of a wild ride. Where to start?
My laparoscopically-assisted vaginal hysterectomy (with bilateral salpingo and oophrectomy) on March 12 went very well. In fact, I was quite certain that I’d had the easiest hysto experience recorded to date! Check out my positivity at 12 days post-op:
Watching this now, I feel like punching that smile off my face. I had no idea what was about to hit…
Post-Hysterectomy Complication: Vesicovaginal Fistula (VVF)
Two days after that video was recorded, I started experiencing symptoms of what I self-diagnosed as a Vesicovaginal Fistula. VVF is a hole between the bladder and vagina, causing constant urine leakage, or total incontinence. It’s a rare complication that occurs in less than 2% of hysterectomy patients. It is usually an iatrogenic injury, in other words “adverse effects or complications caused by or resulting from medical treatment or advice.” In my case, it’s believed that a stitch was accidentally looped into the bladder wall and when that stitch dissolved naturally two weeks later, it left a hole between the bladder and vagina in its wake.
The VVF was confirmed by my gynecologist in an exam that took place on March 31. In his 20 years of practice, he’s never seen a VVF. The following day, I went to a hospital an hour away to meet with a urologist who performed a cystoscopy on me. During this exam, a camera is inserted into the bladder via the urethra allowing the urologist to see the inside of the bladder, hopefully enabling them to locate the fistula. Indeed, my fistula was visible. It is small and located near the base of the bladder.
First Steps to Repair VVF
After discussion with a second urologist and one of my GPs, conservative treatment consisting of catheterization was recommended. I went to another hospital the next day and had an indwelling Foley catheter installed. The hope was that with constant drainage of the bladder, the fistula might have the chance to heal spontaneously. Success with this treatment is not very common though, in the area of 5% or less according to my studies. The catheter was quite painful. At first that pain was limited to the urethra accompanied by a constant sensation of having to urinate very badly—not pleasant. About 5 hours later though it deteriorated further: I started experiencing bladder spasms and lower abdominal pain. To make matters worse, the catheter was not doing it’s job: I was still leaking urine from the fistula. I spoke with my GP that night. He consulted with the urologist on-call and it was decided that the catheter should be removed immediately. The balloon of the catheter was probably irritating the swollen tissues around the fistula tract.
The next morning I went to the hospital again, this time for a CT scan. The resulting X-ray did not reveal the fistula, which is a good sign because it indicates that it’s small. I also met with my gynecologist again.
My extensive research about VVF reveals that a successful corrective surgery is highly dependent on the surgeon’s experience with the particular method of repair. Because VVF is rare, the local urologists do not have what I would consider to be enough experience with this for me to feel confident having surgery with them. The failure rate for first surgical attempt to repair VVF in the best of hands is 10%. I want the numbers on my side.
I got a lead on a urogynecologist based in Vancouver from the surgical assistant to my top surgeon. My gynecologist was also familiar with Dr. David Wilkie (of the Bladder Care Centre at UBC Hospital) and contacted him immediately to see if I could be referred to him. They spoke in detail about my case, he agreed to take me on, and I will be scheduled for corrective surgery in Vancouver with Dr. Wilkie to take place at the end of April.
Surgical Repair of VVF and the Impact on Trans Male SRS
Because of the location and size of the fistula, I am an excellent candidate for the minimally invasive transvaginal method of repair (as opposed to abdominal surgery.) Unfortunately, perhaps even devastatingly, this method typically uses tissues from the anterior vaginal wall and labia minora to repair the fistula—tissues used in metoidioplasty with urethral extension. I contacted Dr. Miro Djordjevic about my situation and his advice was to see him for the VVF repair and get a meta at the same time (something I cannot financially manage at this time.) He feels that if I proceed with the repair now but not the meta, the vascularization of the tissues required for the repair, and later for metoidioplasty, could be compromised, leading to intra- and post-operative complications when a metoidioplasty with urethral extension is potentially attempted in the future. I have contacted three other meta surgeons to get their feedback about this as well.
Because VVF is socially crippling and emotionally challenging, it’s most important to me to have this successfully repaired in one surgery, even if this compromises my future suitability for metoidioplasty. This experience has been eye opening: I just want to have my excellent health back and void normally again—sitting would be just fine, thanks! However, I’m not happy about being forced into these difficult decisions by the circumstances. Someone’s slip of the hand could radically affect my choices for further SRS! It’s very distressing.
At the same time, I have to keep everything in perspective. There is a very good chance that the surgical repair will work. I will need to put up with being largely housebound throughout April and then again in May, when I will have both a Foley and suprapubic catheter in post-operatively for 2-4 weeks. By June though I should be in the final stretch of healing. I’m hoping that I’ll be able to go swimming in the lazy days of July.
My Advice to Pre-Hysto Trans Men
So, that’s my hysterectomy story so far! The risk of VVF is real, but I don’t think it should dissuade trans men from going through with a hysterectomy. My advice to hysto-questioning and pre-hysto guys is to have a serious discussion with the gynecologist about VVF. Because it presents challenges regarding total incontinence and the men’s room, and more importantly, the devastating potential to negatively impact future SRS choices, VVF needs to be viewed as a risk with particular relevance to trans male health. Developing a VVF is a risk of apparently less than 2%, but my guess is that less than 2% of gynecologists realize what this complication can really mean to a trans man.