post-op part two
I wish the final stage in my journey of becoming "who I was meant to be" went according to plan. I wish it was going to be the first thing after my accident to come easy and go according to plan. But, like everything in my life since 2015 this final step was a constant fight to the bitter end. A fight that I would raise my sword high up in the air in victory. Sadly, that wasn't my reality.
This surgery was important to me, even though I would have been completely happy keeping my penis, weird I know. Having this surgery was the mark of my hard-fought transition to becoming me. This was the surgery that was supposed to allow me to feel complete, confident, and comfortable in my own skin. The confidence I would get going into that women's locker room without having to hide or huddle into a corner always facing forward just so I wouldn't make anyone uncomfortable with seeing what was in-between my legs.
This was supposed to be the last stage. This was supposed to be the happiest time of my life, not the saddest.
The last six months post-op has been horrible, there's no other way to put it. It's been a battle after a struggle, after a fight. This week I was dealt the final punch to the gut. I was told that I've lost my vaginal canal. The skin graft used to line the canal is all but gone. All that's left is raw, granulated tissue that is never going to provide what is needed for healthy skin to grow. I pretty much just have a hole drilled into my body.
So, what are my options here because I can't have a canal full of granulation tissue that continuously creates enough discharge to require having to wear an adult diaper - yeah, I'm feeling really attractive now… Well, I'm in luck, there is one option for me in this situation. Allow the canal to close! Yaaaaaaaaaaaaaaaay!
My dream of having a fully functional vagina? Gone!
My dream of finally experiencing vaginal intercourse? You guessed it, gone!
Did I just go through 6 months of hell for nothing? Yes!
Did I just waste thousands of dollars of my own money and my medical insurance money? Yes!
Am I completely regretting my decision of having this surgery? In the words of Stone Cold Steve Austin, oh hell yeah!
Am I being a little overdramatic? Probably, but what do you expect. A lot of people don't really understand what has happened in these last 6 months. FYI, the next section goes into great detail of some of the things I've been having to deal with within the last 6 months so I guess trigger warning. In no particular order.
Not allowed to do any kind of physical activity beyond walking.
Unable to sit, stand, walk for long durations.
An incredible amount of pain and constant bleeding. The amount of pain killers I take in a day is ridiculous.
Unable to wear tight-fitting clothing and pretty much force to constantly wear sweatpants and joggers, yeah that makes me super confident and attractive.
6 months of not being able to just wear normal women's underwear.
Having to dilate 4 times every 4 hours during the day. Which then results in a dramatic impact on my social life. Try to plan anything when you only have 4 hours between dilations. Certainly doesn't make it easy when people don't want to come over to my place.
Having to cycle between a steroid cream and Medihoney on my dilators for my final dilation of the day.
4 weeks post-op I started hemorrhaging blood from my vaginal canal to the point I needed 2 units of blood just so I was stable enough to go into the OR. After that emergency surgery, my vaginal canal was repacked, catheter put in, and sewn shut. I pretty much restarted my recovery from the beginning.
Weekly silver nitrate therapy to treat the granulation tissue. Meaning, they take sticks with silver nitrate on the tip. They use a speculum to open up the vaginal canal and use the silver nitrate to cauterize the granulated tissue with hopes that it will kill it and eventually fall off/out to allow healthy skin to continue to grow. This therapy was done externally and internally of the vagina. The side effects of these therapies is a lot of pain and a tremendous amount of discharge and blood. I'm talking soaking through three to four maximum absorbent diapers in a day.
I mean, I could keep going with the nightmare that has been my new vagina.
Now the plan focuses on making sure the vaginal canal closes properly. You would think this is just cut and dry thing right… Just stop dilating and let the body do what it does best, heal. Not so fast cowgirl. You can't simply stop cold turkey.
But, Erin, there has to be a silver lining out of all this shittiness right!? Great question! Yes, there are some positives.
Pretty much all the crap I listed above that I've been dealing with the last 6 months, well that's all gone! I pretty much return to my normal life, just not with a functioning vagina.
I can get back into triathlon training mode, get back into shape and return to racing! Sweet! Super stoked about that. I can technically do that right now because all my surgeons told me that I can't make it any worse than it already is. I did try going for a bike ride but it was SO fucking painful and made me bleed for days after.
I can have anal sex, so big thumbs up from this girl right here.
None of this affects my upcoming labiaplasty surgery in December so at least it'll look like a real vagina. There just wouldn't be that important hole there that I'm actually really wanting. But, it'll look like there's something there <sticking thumbs up>.
I'm sure there's more that I'm not thinking of but I would say that's a pretty good start of the positives list.
Would you be able to go through the surgery again? Yes, I can have another vaginoplasty. I would have to wait a full year from when the canal closes to be allowed to go through the surgery again. But, I don't know the statistics when it comes to redoing the surgery and the success/failure rates. But, I also can't ignore the fact that I lost my first graft, who says it won't happen again and I'm right back to where I am today? I don't know. That's so far out right now that I honestly can't even think about it right now.
What I do know is with everything that I went through after this first one I don't even know if I want to go through it all again. This last surgery had a profound impact on my life, social life, and mental health in a very negative way. I experienced a great deal of trauma that was/is very difficult to bounce back from. I can say for a fact that this entire experience/situation has changed who I am, physically, mentally, and emotionally. Making the decision to go through it again will be a lot more difficult than it was making it the first time and even that took me 2 years to be 100% positive of wanting it.
I really wish this was going to be the first thing since my accident to come easy and go exactly to plan but unfortunately that's not my reality in this post TBI world for me. I've had to fight to pretty close to the death every step of the way and this was no different. The only real difference was I didn't win this fight and that's a really hard pill to swallow, but you can't win them all Erin. I know, you've been pushed to that ground a lot, win or lose but just like all the other times, you've got to pick yourself up, dust off your shoulders, and prepare for the next fight.
amendment.
Okay, now that I got my emotional mind out of the way, I should really share some thoughts while in wise mind.
I would like to make one thing clear. Complications from this surgery are relatively uncommon to rare. The issues I've experienced are very rare, I just happened to pick the short straw.
My surgeon didn't do anything wrong. It wasn't because I wasn't following my post-op recovery instructions or anything like that. It was simply just bad luck. There wasn't any way of preventing it once we finally identified what was going on.
With that said, it's always important to ask a surgeon how many procedures they've done, their success/failure rate, and all risks that can happen. I haven't consulted with a surgeon who wouldn't provide that information. I know finding a surgeon can be hard and even restricting depending on what insurance you have. At the time, I didn't have another option other than the surgeon I went with, who happens to be one of the best in the field, because my insurance only contracted with that clinic. If I were to go with someone else I would have had to pay out of pocket.
Again, complications from bottom surgery are uncommon to rare, but you should also understand that any kind of surgery, especially ones when you are put under, are high risk. That's just reality.
cause.
My care team believes the cause of the loss of my graft was from the bleed out I had 4 weeks after my surgery. They believe the bleed out occurred between the tissue wall and the graft, which is not good. This ultimately resulted in losing it all.
It's pretty much impossible to know why the bleed out happened, it could be anything from a simple stitch dissolving early to whatever. It just decided to happen.
outlook.
Regardless of everything that has happened I am happy that we now know what is going on and the next steps needing to be taken, even though it's not quite the outcome or fix I was hoping for.
I can see the positives as I mentioned above, perhaps I should have emphasized them better. I’m happy to finally be getting my life back. I’m ready to return to a normal life; exercising, swim/bike/run, racing, sit/stand/walk with no pain, wearing cute things without pain, etc…
I'm excited that surgery wasn't a complete loss. Everything on the outside is healthy and for the most part, healed. None of this affects my labiaplasty surgery in December (hopefully this pandemic is resolved by then), so at the very least from the outside, it will look like a normal vagina. I'm more than thrilled to not have a bulge and that was the number one reason for having the surgery in the first place.
So, believe me, even though it is what it is, I can still see the positives coming out of something heartbreaking.