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! 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.
Gender Outlaw 
Hey buddy I just read this because I was looking up other transmen who had hysto complications. I did not have VVF. My vaginal cuff opened up 5 weeks post op and I almost bled to death. had emergency vaginal surgery. 12 weeks post hysto and almost 7 weeks post 2nd surgery i am still not healed. Talking to gyno soon about options. I have always wanted a v-nectomy and he was going to do it in a couple months now I don’t know if he can or if I am at greater risk of complications with that. Plus I am scheduled to have a simple meta in December. It is so hard to deal with these complications. My doc never had one of these happen. It happens to 1% of all robotic hysto patients and it happened to me. I think Transmen are at a greater risk because of the androgenzied tissue. Greater risk for all complications in the genitourinary tract. I just hope you found a good treatment plan and feel better today, 2 years later.
How much money would it take for you to be able to get both the VVF repaired and the metoidioplasty? This sounds like a really awful decision (the forgoing of meta at this time, hurting your chances of having it work in the future) to be forced into for money reasons, and if you would be willing to accept it, I would be more than willing to paypal you a couple hundred dollars if it would be any help! (I have a high-paying job right now but absolutely no expenses while I’m in school, so I’m accumulating money for no particular reason; I’d much rather send it where it can do some good!) I would happily get my blog involved as well, and contact some bigger feminist blogs, to see if together we could make this happen for you.
I realize I don’t know you personally, but I wanted to at least offer, since I’ve seen the blogosphere gather to help people in similar situations in the past, and I’m sure a lot of the people I know would be similarly moved by your situation.
Anyway, I wish you the best of luck with whatever you decide to do, and all your future endeavors!
eloriane, um, wow!! You have a very generous heart.
If I were to go for a meta now, I would need about $30K. No small order. At the same time, there is no surgeon who could take me on now anyway. There is a 3-12 month waiting list for this surgery, depending on who you go with.
Quite honestly, this entire experience has been eye opening and a part of me is less convinced that I want to put myself through any further “dicking around” with my urinary system. Some guys have had complication-free experiences, while others have had multiple revision surgeries and urinary problems spanning over a few years.
I want to approach this conservatively, taking care of the VVF repair first and foremost. Then I want to take some time off from surgeries (this will be my 4th in 12 months, 3rd in 3 months) and just enjoy life outside the medical setting. I’ll evaluate my need to stand-to-pee after this and take it from there.
I won’t lie though: if my urogynecologist offered me a VVF repair and meta with urethroplasty in one go, I’d probably take him up on it.
Thank you again for your compassion. And congratulations on your job–I love hearing about people’s successes! It’s inspiring.
Haha, there’s a part of me that wants to put on my Rosie-the-Riveter face and say, “30k? We can do it!” but if you don’t have access to (or aren’t sure of) the surgery independent of the money question, it’s probably not a good idea. (3 to 12 months sounds like much too long to wait to take care of the VVF!) I can definitely sympathize with the desire to spend less time in hospitals– it just sounded like taking care of the VVF on its own would end up possibly preventing you from being able to do something you really wanted, and that was heartbreaking to me.
My job really is great– I work for Kaplan, and I get paid $8 an hour for every hour I sit at the desk occupying the building (and I can do homework at the same time!) and way more than that every hour I teach. Especially since I’m also a student on a scholarship, with generous parents, it leaves me with a lot more money than I know what to do with. (Yeah, I’m all wrapped up in a happy ball of privilege… if I wasn’t a lesbian, I’d probably be insufferable.)
Which is why, if anything changes– maybe your doc offers you that all-in-one package after all– please let me know! This is a standing offer. 🙂
Not an easy situation. From what you say, it sounds indeed socially crippling. Can’t really go anywhere can you. Dear gawd, I feel horrible for you and so sorry this happened. It’s wonderful that you keep yourself so well-informed though. You really do take your body into your own hands! Kudos!
please don’t go for metoidioplasty, better forget about it.
i had a few surgeries over my life due to medical problems… from one, i almost died, and once i had 5 surgeries just to fix one minor problem that resulted in 8 months of my life taken away and my sense of well-being completely destroyed. it’s better be not a male with perfect physique (myself i’m ftm), than suffer long time pain and complications. we can’t replace the time of our life spent being ill, physical health is a number 1 thing. i’ve spent years being sick and inactive, in bed, etc. even if there’s a 1% risk of nasty complications from surgery, best to leave it alone if only possible. you’re a man without bottom surgeries, they won’t make u any more of a man.
I hear you, and appreciate your comments. Health is #1. I am taking this experience as a message. I plan to forget about any further surgeries for some time, and just enjoy life outside the medical setting. I’ll evaluate my need for metoidioplasty at some point in the future, and may very well not pursue it. I don’t ever want to forget how this complication—one very small slip of the hand—has impacted my life.
Why didn’t you consider Endometrial ablation ( removal of the lining of the uterus by surgically
burning it away or vaporizing it ) to replace getting your
uterus removed if your main reason for hysterectomy is wanting to stop periods.
Can pepole do Endometrial ablation together with colpocleisis, metoidioplasty and scrotoplasty?
Thanks for your comment, Jremy. I had several reasons for getting a hysterectomy and endometrial ablation would not have satisfied my needs.
Surgically speaking I’m not sure of contraindications for EA along with colpocleisis, metoidioplasty and scrotoplasty. For many guys though having the organs left in is problematic, either for personal or legal/identification reasons.
Hey, just had my lavh/bso last week. So far so good.
Just a quick Q..how long did you wait until you ‘tested the waters’? Cuz as you know T is making it very difficult to hold off, and I figured maybe you had the same problem.
Al, congratulations! Great to hear you’re feeling good. To answer your question, I came in my sleep about a week or 10 days post-op and was worried that it could have had a negative effect on healing, specifically pulling stitches. My GYN said it was OK. Obviously no toys though. I lean towards being overly cautious. The stitches should dissolve at 2-3 weeks post-op, indicating that tissues have fused. I imagine holding off until then is a good idea. But, do what you must young man 😉
LOL. Thanks.
Good to know the timeline for the stiches…I can’t get in to see my surgeon before 6 weeks but she said I should be back to normal by 4..I guess yours was a little bit longer?
…sorry about the VVF. vaginas suck.
If it makes you feel any better I’m 5 months out from my mastectomy and my nipple totally folds over..wtf?
6 more months ’till the meta, I don’t even wanna think what problems that will bring about…
Transitioning is fun..
There are different kinds of stitches, it depends on what your surgeon used, but 2-3 weeks to dissolve is common. I went back to work at 2 weeks post-op (that was the day the VVF appeared.) I remember feeling fine, maybe a little tired still. But “back to normal” doesn’t mean normal exercise, I’m sure you’re aware of that.
It doesn’t make me feel better to know your nipple folded over!! Sorry! Revisions are very common for a good result. Lots of guys would like revisions but don’t bother. They’re not included in those revision stats. I would like to tweak a couple of things about my chest, so maybe a second revision, but I’ll probably only do it if I’m combining it with another trip to the OR (like scrotoplasty.)
You’re so lucky to get this all funded. Not being able to pay for my bottom surgery is getting me down. These days, I’m seeing more guys in the US get surgeries and hormones covered through insurance than here in Canada.
I wouldn’t call it luck..
I will tell you that having ‘the big one’ booked is all I think about. I thought I’d be more at ease. Just try and picture yourself really having it done, losing that part of you (even if you hate it) and the risk of major complications. Forget about the finances and just think about the op.
You seem happy enough, take time and just enjoy the changes and the new view on the world. Maybe it’ll be enough for you in time?
Have I thanked you for your page yet? You are my reference guide; being about a year ahead of me.
Hey buddy, I had a question to ask and wanted to message you on YouTube, but it wouldn’t let me. I am a transman 2 years on T and am really wanting a hysto. The reason being is dysphoria knowing that:
1. I have a womb.
2. I could still get pregnant.
3. My body can still produce oestrogen.
I think my third point is the main reason why I want the hysto. I’m paranoid about running out of T and having to go back to Square One due to my body producing oestrogen again. I know most transguys experience an emotional meltdown whenever they find themselves unwillingly off-T whilst pre-hysto – something I don’t wish to experience.
My question is: say one runs out of T AFTER the hysto, are the emotional effects ‘as bad’ as if the transman were pre-op?
Joey, your timing is so appropriate, I’m about to write something related to this. Namely: There’s been a nation wide shortage of testosterone in Canada and I haven’t had a shot in about 6 weeks. What I’ve noticed is that 1) my dick shrank considerably after been a week late for my shot; 2) my sex drive plummeted to zero, and 3) I’ve been having more and more hot flashes. I think I’m having more headaches too, but can’t be certain that’s related to the lack of T or not. However, my mood and energy levels seem stable and this surprised me because I thought they’d be the first things to go downhill without T. I will say that I am *extremely* grateful I’ve had a hysterectomy otherwise this T shortage would cause me a lot of anxiety.
Ok, thanks for the info! That’s made me feel a lot better.
Bloody Hell! My heart goes out to you, especially as you do so much research into everything beforehand. It’s horrific that one small surgical mistake can have such huge consequences. I had a fistula between stages 2 & 3 of my phalloplasty. It was different to yours in that it only affected me when I was urinating but I still found it devastating. And even now I have stress-related incontinence affecting the actual bladder itself which makes having a cough for example a nightmare. Incontinence feels so shameful, dirty. Until you’ve had it you don’t realise just how it can compromise your whole life. Really hope the surgeons can sort this out for you. And well done for handling it as well as you seem to be doing.