I'm about three weeks past my penile-inversion, full-depth vaginoplasty, and I wanted to document some of the problems I have run into and how I have managed to cope or solve them.
Dilating with Wound Separation
Problem:
At the base of my vagina the skin graft didn't take, likely due to being put in a sitting position many times to use a bedpan while on strict bed rest. The skin graft essentially peeled off and continues to slough more and more. At this point, there is basically a large mass of white skin that has separated from my flesh, but which has not fallen off or gone away - it is attached to the rest of the skin graft that goes into my vaginal canal, and more and more of the skin seems to be sloughing off.
The problem I have run into is that the skin is covering up the vaginal canal, making it hard to see the entrance of the canal so I can safely guide the dilator into the canal. Dilation poses a significant risk to furthering that wound separation, and applying pressure to the wrong place could create a medical emergency, at least according to my surgeon. (The hospital is in another city, I am several hours away by car.)
I usually use a lube syringe first, which is a much smaller diameter than the smallest dilator (I was given the Soul Source rigid plastic dilators, so the smallest I was given is the Size #1 Purple dilator, which is 1 1/8" or 29mm wide).
At one point I had resistance and difficulty even directing the lube syringe into the canal, and I had some blood and pain (a major warning sign).
Solution:
The solution I found for navigating the entrance to the canal safely (beyond my previous strategies like to completely relax the mind and body, to lie as flat as possible and relax the abdomen so I am not in a crunched position, and to use a mirror to help me see and navigate) was to put a latex glove on my dominant hand and to feel the canal and then finger myself to open the canal some.
Using a finger seemed to help the lube syringe enter safely - both because I had a better sense of direction, but also because I think it loosened the canal a little. Another strategy I found helpful was to carefully probe at different angles, sometimes when I ran into resistance, simply moving the direction would cause the syringe to find a way in.
This was also a solution for when I moved to the Green Size #3 dilator (1 3/8" or 35mm wide), I found it difficult to get the dilator into the canal until I turned the curved tip to the left and directed the pressure to the left as well - this somehow caused it to slide in almost effortlessly. Experimenting carefully and slowly with different directions and amounts of pressure has been generally helpful, as well as being very patient and relaxed and calm as it takes time for the body to relax and to find a position that allows the larger sizes to ease in.
Another strategy suggested by a nurse from my surgery team was to start the dilation with a smaller size, e.g. go 5 minutes of the dilation session with the Purple dilator, then swap out for the larger size for the remaining time. This I feel has also allowed me to retain greater depth, as I have noticed it's much harder to get the larger sizes as deep inside of the canal as the Purple dilator.
Douching
Problem:
Due to wound separation, skin has sloughed off and covered up the entrance to the vaginal canal, making it hard to see and access. I have been instructed to douche every other day with a 1:1 solution of Hibiclens (an anti-microbial chemical) and warm water.
Originally I just bought whatever douche I could find at the local drug store, which incidentally was meant to be disposable and came with a douching solution, so you have to break the seal and empty the douche bottle before refilling it with your own solution. I found those disposable douches had tips that were as comfortable to insert, but after a week or so the wound separation had gotten so bad that it was becoming much harder to get the tip in.
I bought a different douching kit that is not disposable, it's a plastic bottle with a pump, and it comes with a more comfortable tip. Even so, with the occluded canal, it's difficult to get anything in there now.
At first I tried putting a latex glove on and using my finger to locate the canal by touch, and then trying to guide the douche from there. At first I did this without lube, but I had some pain and bleeding as a result. So then I tried lube, and using a mirror to visually guide me (more than just going based on touch alone). That helped for a while, but over time and as the wound separation got worse, it became harder to do - even with a mirror and lube it was running into resistance and some pain and bleeding.
Solution:
What I found is that instead of trying to insert the douche in the shower or bathroom (even with a mirror and lube), I should try to treat it like my normal dilation - so I lie down in bed (on a "chuck" - an absorbent and water-proof pad), and use a mirror and lube like I would when dilating - that position seems to help reduce resistance compared to standing, and I haven't had problems with bleeding, pain, or resistance the same way since.
Bleeding from Toilet Use
Problem:
You are told you shouldn't sit for long, since that position puts a lot of stress on your sutures. I suspect it was sitting which caused the wound separation complication I am having, and the only time I sit now is when I use a toilet.
The only times I use a toilet are to make a bowel movement, or to urinate.
I found the contractions to pass a bowel movements often caused bleeding, I noticed a lot more blood in the toilet when I had a bowel movement than when I urinated, and in the first week it wasn't unusual for me to watch blood dripping from my sutures into the toilet just from the stress of crouching and sitting on the toilet.
Using accessibility rails helped by using my upper body to keep some of the pressure and weight off the sutures, but that does get exhausting (and you already use your upper body all the time to get out of bed or adjust position, etc. - you need a lot of core and upper body strength to recover from this surgery!).
Then I had a problem with unexpected and suddenly large amounts of bleeding from using the toilet to urinate. It seemed random to me, and I couldn't predict why there was bleeding, but one particular instance shook me because of how much blood there was, and I had no bleeding before sitting to use the toilet (nor did I do anything crazy, I carefully lifted myself down and did not contract excessively, etc. just as usual).
Solution:
To solve the bowel movement bleeding, I started to take 17 g of miralax (a stool softener and laxative) every morning, increased the amount of water I was drinking, and tried to keep a diet with more vegetables (esp. with mucilage and fiber, like tomatoes, cucumbers, etc.). I also have been taking a specific Align probiotic my doctors advised me to take (I started those once my anti-biotics were finished).
On days when I eat more processed food and fewer vegetables and fiber I notice more pain and difficulty with the bowel movements, though I have luckily avoided bleeding from bowel movements since I made my changes.
To solve for the bleeding I had from urinating, I just stopped using the toilet altogether. This may seem extreme, but I now only stand in my shower to pee, and I use a Peri bottle to irrigate the whole area with a diluted Hibiclens solution, and then to rinse my lower body with warm water from the shower head.
This makes urinating more of a task (it's not fun to wake up at 2 in the morning and in my groggy and sleepy state to know I have to get up and prepare a Peri bottle and take a shower to relieve my bladder), but with my complications I would rather take the hard road if it might mean a better outcome, and so far I have managed to avoid any significant bleeding since.
Diet: Protein & Calories
Problem:
I am overweight, and have been working very hard to lose weight, especially leading up to my surgery.
At the beginning of the year I weighed over 220 lbs (~100 kg). I struggled to lose weight, but by the time surgery rolled around in June (six months later), I had managed to get my weight down to 200 lbs (~91 kg).
After surgery I gave myself permission to be less mindful about my eating, I only ate the hospital provided meals for the week I was kept on strict bed rest in the hospital.
Then the week after that, I stayed in a hotel and again did not think much about my diet and just ate what was given to me. I noticed the first two weeks I had almost no appetite, even though when I would eat it would taste good and it was clear I must have been hungry, I never got "hungry" in a normal sense, I never craved food or could feel food desires.
By the end of the second week that was starting to lift, and my appetite and eating was becoming more normal. I weighed myself and I had gained 8 lbs (3.6 kg).
So I panicked and started to log my calories again, and brought my diet back to a more normal amount - which felt fine to me, I didn't ever feel I was depriving myself, and I was on average eating a little more or less than 2,000 kcal each day (before surgery I was eating 1,500 - 1,800 kcal per day on average).
However, my doctors kept mentioning the importance of keeping up with hydration and eating enough protein, and I suspected I might not be eating enough protein. I tend to eat vegan, which especially makes it hard to consume excessive amounts of protein (a vegan diet is fine for daily life, but during recovery you need a lot more protein).
So I decided to get empirical about this and look up what exactly I needed.
I found this resource:
https://www.hss.edu/health-library/conditions-and-treatments/nutrition-for-healing
Now is NOT the time for weight loss! When people are immobilized, they worry about gaining weight. However, you should NOT decrease your calorie intake because you will be inactive. In fact, your calorie needs are now greater than usual because your body requires energy from nutritious foods to fuel the healing process. You will need to consume about 15-20 calories per pound (using your current body weight). If your overall energy and protein needs are not met, body tissues such as muscles and ligaments will begin to break down. This will compromise healing and may prolong your recovery period.
Emphasis is mine.
So at 20 kcal / lb, I need to eat 4000 kcal per day (assuming my baseline 200 lb weight).
Regarding protein I found this source:
https://www.med.unc.edu/uncsportsmedicineinstitute/wp-content/uploads/sites/1189/2022/10/Nutr-Strategies-Recovery.pdf
During injury recovery and immobilization, muscle protein breakdown accelerates, thereby increasing protein requirements to maintain protein balance. Nutritional goals should align with more traditional anabolic goals because when catabolic hormones rise, increasing protein intake results in a net protein balance. Thus, during rehabilitation, protein intakes of at least 1.6 g/kg/d and closer to 2.0 to 3.0 g/kg/d are recommended, with an emphasis on consuming about 3 grams of leucine per serving. ...
...
Protein consumption should occur within 1hour of waking, every 3 to 4 hours subsequently, around a rehabilitation session, and before sleep.
Emphasis is mine (again).
I have read elsewhere the recommendation of 1.5 - 2.0 g of protein / kg of weight. At 90.7 kg baseline weight (200 lbs), I estimate I need up to 181 grams of protein per day.
That's quite a challenge!
Solution:
So far my solution has been to eat high calorie and high protein foods.
I have been buying protein shakes, particularly high-protein, low carb protein shakes so I can use those primarily as a protein supplement and enjoy more tasty foods for the rest of my calories.
Specifically I've been buying Premier Protein pre-made protein shakes, which have 160 kcal per bottle and 30 grams of protein. They seem to be enriched, so they provide micronutrients like vitamins as well. So far I like the banana, chocolate, and cinnamon bun flavors the best. I drink three a day, once before or with each meal, and this guarantees a minimum of 90 grams of protein, allowing the rest of my diet to push me the rest of the way to my goal of 136 - 180 g / day.
I haven't done the research here on the best way to get protein, this is just what seemed like a good idea, but I'm not presenting it as The Best or Most Optimized option, so please let me know if you have thoughts or better ideas. I don't love the idea of supplementing with such processed foods (I usually skew towards a "whole foods" diet, using more processed foods like Beyond Beef usually to replace animal products), but my first priority is meeting my goals of eating enough calories and protein.
Despite recently increasing my calories to 4,000 kcal / day, I did lose 2 lbs in the past week, likely due to spending most of the week on a diet of 2,000 kcal / day. So I fully expect weight gain as I continue with my increased-calorie diet.
My diet could be healthier, but I'm allowing myself comfort foods as I crave them - ice cream, pizza, etc. as they are generally high-calorie and a source of protein. I love vegetables, but eating too many actually make it harder to eat enough - I am finding it challenging to eat 4,000 kcal / day, so sometimes eating refined carbs actually helps me feel less full for the calories I consume. It's probably bad advice, but it's currently how I'm coping. I also am eating vegetables and nutritious foods - I have oat bars I make with chia, flax, and hemp seeds and lots of nutritious foods like pumpkin seeds and walnuts, so my default is to eat healthy - I'm just incorporating more "unhealthy" foods, too.
Boredom
Problem:
I wasn't sure what I could do in the hospital after the surgery, so I over-prepared for a variety of situations. I brought my laptop, but I knew I might not be able to use it on my lap (I had read of people on Reddit describing the pain as bad enough they couldn't set anything near their lap, so they just used their phone).
To enable me to use my laptop from afar, I brought an external display and a way to anchor it, as well as a small bluetooth keyboard I could use (for either my phone or laptop). I was pretty worried about access to my laptop because it's how I log everything and do research to help solve problems - to me it's an important part of my autonomy and crucial to my ability to adapt to situations. When I had my orchiectomy, I did not feel I could trust others to handle the many drugs I had to take, and having my laptop and spreadsheet software allowed me to structure and organize my drug schedule, and actually helped me catch oversights and mistakes, and was important for me advocating for myself and knowing when I needed help.
Luckily, after the surgery I was able to use my laptop on my lap without issue, but I mostly used it to problem-solve and for entertainment. I used my phone to take quick notes and jot down times and dates of certain events (this is when I had my blood drawn, this was when I had a bowel movement, this was when lunch came, etc.). The phone was easier to quickly open up and write something down, compared to the laptop which was harder to get open and unlocked in time. The notes were useful later when nurses sometimes would ask me questions that I couldn't answer from memory, but which I was able to lookup (like when I had a bowel movement).
The hospital was so busy that I never struggled too much with boredom, but I did watch two films, though it felt like I squeezed them in. When I tried to play video games once (Animal Crossing on a Switch), I felt it was too exhausting.
So the problem I ran into increasingly, especially once discharged from the chaotic hospital, was that I was finding myself bored, particularly while setting a timer for dilation and just sitting there in mild to moderate discomfort.
Solution:
So my solution was two-fold: get movies and video essays on my laptop so I can watch them during dilation.
Since dilation is around 20 minutes and I go through three a day, it's not hard to knock out an hour long video essay.
My suggestion is just to find something passive, not too cognitively taxing (I can't handle lectures on mathematics as much as I would like to be able to), and something long or there is a lot of. This is a time to binge watch a show with many seasons, for example.
I can share a list of video essays and movies I have watched, but I think my tastes are particular and I'm not sure anyone cares or would find that helpful. My point is that it's important to think through dealing with boredom and to plan a little by having a significant amount of content lined up. I found listening to audiobooks wasn't easy enough to focus on - watching video essays was easier to pay attention to, for me anyway.
As usual, let me know if you have any questions or concerns - I want to learn from you, but also to be a resource for the community.
Thank you for reading. 💕
