I had said that I would have one more blog post in this series. But it was longer than I anticipated, so I divided it into two posts. The new final one should follow after this one in a couple of days.
My guess is that no two GRS experiences are identical. Some people have additional gender transition operations to recover from. My post-operative recovery was complicated by having extensive oral surgery 15 days after my GRS, and apparently having gone into the surgery with a blood clot caused by ankle trauma a week prior to the surgery.
Thus my recovery has been slowed and I have felt overwhelmed at times. But I will state one thing categorically: in no way do I regret having had GRS. The oral surgery so soon after bottom surgery was forced by insurance issues, but the decision was justifiable. And the blood clot was an unknown at the time, but I am dealing with blood thinners and recovery from edema or perhaps a mild form of post thrombotic syndrome (swelling of a lower extremity, in this case, my left foot, ankle and calf).
The biggest problem being on a blood thinner is that it had been increasing the amount of bleeding that occurs when I dilate (although that problem has abated somewhat now). And having to revert back to four dilations per day, this increases the bleeding even more.
The dilation kit provided by Dr. Leis as part of the surgery package included five dilators of different sizes. Based on my petite size, Dr. Leis felt that I would be able to reach the #3 dilator, with an outside possibility of making it to #4. I started dilating when he showed me how, shortly after my catheter was removed. I quickly moved up from #1 to #2 based on when he said I should be able to. I then advanced to #3 during my recovery at home. Returning to Bala Cynwyd for a follow up exam on November 6, he told me that I was doing well. I took with me a prescription for Estrace, an estrogen cream to put into my new vagina to help with the healing of the granulation (raw) tissue that remained after the surgery. Consulting with my primary doctor, I reduced my sublingual estradiol intake from 2 tablets a day to one as long as I was on the Estrace (2 grams a day for two weeks and then 1 gram a day for two weeks). I did this for two tubes of Estrace.
Things continued to progress nicely as told to me by Dr. Leis during follow-ups on November 20 and December 12. I noticed some decreased depth in the dilations shortly after my November 20 visit, but he reassured me that things looked fine on December 12 and I had a fine depth of 4½”. He also told me that while there was a bit of granulation tissue remaining, there wasn’t enough to cauterize (as he needed to do on the previous two visits). He noticed a bit of an odor during the December visit which he suspected might be a yeast infection. I took a single dose of Fluconazole as a precaution and made a connection and appointment with a local gynecologist as a follow up. A GYN is strongly recommended for a trans woman after GRS and I wanted to establish a relationship with one locally to cut down on travel once I reached a certain level of healing and Dr. Leis was in agreement that I didn’t need visits to him as frequently.
So I put my feet in the stirrups for the first time, a position familiar to most women. My GYN took a swab of my vaginal lining and the test results came back negative. She suspected they might as the Fluconazole taken five days earlier would have knocked out the yeast infection by then. But it was good to have the test done as a precaution.
Of greater concern was that she didn’t feel she could put a speculum in me because the opening was too narrow. This was only 8 days after Dr. Leis had no problem doing so (and I had expressed my concerns to him). Even so, he had a lot more experience dealing with trans women than my new GYN did. Yet in the back of my mind there was concern. But it took a back seat to Christmas and last minute activity for my tax practice. Not only did I have to get out my annual letter on a rushed and delayed basis because of the timing of the new tax law being signed, I needed to evaluate which clients had a possibility of benefiting by prepaying property taxes (and a few with quarterly estimated tax payments, making sure they paid their fourth quarter by the end of 2017). And I needed to contact them, both those who would actually benefit and those who wouldn’t. Making it more difficult, depending upon which town they lived in, some had an easy time prepaying and some had to go back multiple times. And I had handholding to do during this process.
My scheduled follow-up with Dr. Leis on January 4 got pushed back to the 9th due to snow and ice conditions all along the route between my house and Philadelphia. On the 9th I received the bad news: my vaginal opening had shrunk dramatically. He opened me up as much as he could manually. I had dropped down to dilating every other day based on his schedule and was using the #3 dilator (but with increasing difficulty and decreasing depth). Now I would have to return to the #1 dilator, try to increase it to #2 as quickly as possible (using #1 to open it up for #2 for a while) and then the same from #2 to #3 when possible. I would also need to return to four dilations a day, maybe five when possible.
Now that I am on a blood thinner (Xarelto) in response to my blood clot, at times I am getting more blood on my dressings immediately after I dilate and even a few hours later sometimes. So I am trying to find a proper balance with the help of Dr. Leis and my primary physician, Dr. Carolyn Wolf-Gould. Dr. Carolyn examined me on January 26 and pronounced the surgery to have been done very well and that my vagina is a bit narrow but perfectly functional if I don’t plan to have intercourse. (At this point, I have no one in my life that I would want to have sex with. But for now would like to keep my options open in the event I meet someone in the future.)
It took some discussion with Dr. Leis to reconstruct what went wrong. Apparently there was an omission in his dilation instructions, perhaps something that was expected to be communicated orally. I have been told that it will be added to a revised instruction sheet. The decrease in dilation frequency should not have begun until the granulation tissue has been completely healed. Until that time, the body is sending even more resources to heal what it is interpreting as an open wound. And with my body having an extremely active immune system, I will have even more healing resources sent there than most people. Suffering from a massive mouth infection following my oral surgery, those immune system resources were temporarily diverted, so much so that even my psoriasis retreated for a time (one area is completely healed still). But the psoriasis has returned and the vagina started to shrink by some time in December.
To combat feeling overwhelmed, I have been actively taking ownership of my medical situation, doing a lot of research on estrogen effects on trans women, blood clots, blood thinners and post-thrombotic syndrome. Meanwhile, use of knee-high compression stockings on my left leg and keeping my leg elevated as much as possible have almost completely eliminated the swelling in my leg. A Doppler ultrasound of my leg on January 19 revealed that the blood clot (or possibly scarring caused by the clot which has by now dissolved) moved up to the popliteal vein, which is on the back side of the upper leg. As far as I could tell, the only swelling occurred below the knee.
On January 29, I had a CT scan to check for any pulmonary blood clots. And the good news is that none were found. But Dr. Carolyn has me off of estrogen for three months and she never wants me to take it sublingual again. So I will use a gel.
I saw Dr. Leis again on January 30. Once again I learned something new. The majority of my shrinkage is at the opening to the vagina. I still have good depth (~4”) and it is wider inside. But the dilator has to get past that opening and it is with frequent dilations that I will hopefully be able to gradually open it up. Fortunately the skin there is supple and after using the #2 dilator, I am able to successfully use the #3 again during the same dilation session.
On February 5, Dr. Carolyn told me to continue wearing a knee-high compression stocking for another 4-6 weeks, but that I could try sitting and lying down normally, without elevating my leg. If the swelling returns, I will resume elevating the leg again for a time. So far, so good.
Recommendations to Prospective MTF GRS Patients:
Selecting a surgeon – I had an excellent primary doctor who is also a specialist in transgender medicine. She did this ground work for me, although I most certainly interviewed her suggestion before I committed to him. Many of you will not have a primary doctor who is as knowledgeable about transgender medicine as Dr. Carolyn is. Therefore, you will need to do your homework. Check out websites, but remember that some of the reviews are bogus or by people with an agenda. Dr. Leis received many excellent reviews, but also some low marks with complaints that simply didn’t match who he is. Go to transgender events like the Philadelphia Trans Wellness Conference (note the new name) or First Event or similar events close to you. Attend the seminars offered by surgeons at those conferences who do the type of surgeries you are looking to have. I only had bottom surgery. Some of you will also want breast augmentation, facial feminization surgery or a tracheal shave. Talk to other trans women who have had surgeries to find out about their experiences.
Physical condition – I suggest that prior to bottom surgery, you especially work on four areas of your body: strengthening your legs, your core and back, and your arms and shoulders. At the same time, increase your flexibility as much as possible in your legs and hips. It’s amazing how quickly you lose your muscle tone in your legs if you are in bed for a few days, let alone two weeks. The sequential compression devices work your calves, but not your thighs. My thighs felt like lead climbing from the ground floor up two flights of stairs three days after surgery. Working your core and back will also help deal with being horizontal for a couple of weeks. The flexibility and arm and shoulder strength will help when you do your dilating.
Dilation – Your surgeon should be the one to instruct you on how to dilate and what frequency schedule to follow. What I need to impress on you is the need to dilate often in the immediate weeks and months following bottom surgery. You need to dilate frequently at the beginning when your body is sending healing messages to the skin and tissues of your new vagina. It’s natural that your body wants to close it back up. What I learned is that it will close it at the entrance to the vagina as much as anywhere else (from the outside in as much as from the inside out, if not more). It is not necessarily a pleasurable experience, but it need not be painful, either, if it is done right. It is helpful to find a comfortable position where you can dilate properly. For example, I prefer to dilate with my dominant arm bare or with the sleeve rolled up so fabric doesn’t interfere with the groove. And remember: dilate so your new vagina won’t die early!
Caregivers – It is not mandatory to have one while you are in the hospital, although it would be good to have one bring you anything you need while there, as well as having a visitor. You will certainly need them immediately after your release from the hospital. For those of you who don’t have good, willing and available caregivers in your immediate circle of family and friends, this is something you need to work on early. Once you get specific dates from your surgeon, then you need to firm this up with your list of potentials. I had to work to get a group of caregivers and it worked out that I divided the duties among three different friends who worked out a schedule among them. But I wound up with the first two days, the neediest days, uncovered. That first day was very scary and very lonely. My only triumph was figuring out how to work the remote. I was the happiest girl on the planet when my first caregiver walked in the door a day earlier than originally scheduled.
Budget – Remember to include in your budget the trips you will need for follow up visits with your surgeon and post-operative supplies. Many of you live in parts of the country where there are no GRS surgeons nearby. My surgeon is a 2-3 hour drive, depending upon traffic and weather conditions. I know of some trans women who have a minimum of either an 8 hour drive or a flight to their surgeons. And while you may save money having the GRS done overseas, the follow ups are part of your consideration. Since going home on October 19, I have had five follow ups with my surgeon, plus one follow up with my primary and one with my new gynecologist. A local GYN who is trans-friendly and transgender knowledgeable helps with the budget and is a long-term necessity.
Supplies – Find out in advance of your release date what your surgeon will be sending you home with. Presumably a set of dilators and a tube of water-based lubricant (the only kind you want to use) will be part of the package. Lubricant is cheap. I can get a 3 oz. tube of Dr. Sheffield’s Lubrigel for 88¢ if I buy it in Wal-mart (online they charge nearly double, which is still a pretty good price). It was a little more cohesive (i.e. stickier) than the medical supply brand I went home with so it is a little harder to control. But at the price, even using a little extra you are still ahead of the game. Body heat quickly warms it so it lubricates as just as well. A tube lasts pretty long so you don’t need to buy it in bulk. The other thing you don’t need to buy in bulk is douching supplies. As long as you clean them thoroughly after use, they can be refilled and reused. But as far as dressings (I use 4×4 4-ply non-woven sponges and ABD, aka combine, pads), disposable panties (aka Wings) and bed pads, you can buy them in bulk and save money. Forget the drug store chains. I found it much easier and cheaper to buy in bulk from Wal-mart. Their search engine for health supplies is a bit clunky and frustrating, but it is worth the savings. Target and the club stores might also have this available, but Wal-mart is the closest store to me, so that is what I chose as sometimes it is cheaper to do delivery to store. Other times it is shipped directly to you. Another thing you might want to have is a spritzer bottle. At the beginning, the pad inserted into my vagina needed to be damp, not wet. You can do this by running it under the faucet and squeezing out the excess, but a spritzer bottle of water is ideal. If you don’t already have one, you should get a hand mirror that you can use with ease so you can see where you are putting your dilator. You also might want to have an extra supply of facial tissues and toilet paper on hand when you get home to wipe off excess lubricant and for extra bathroom trips as you get used to new plumbing and learn new muscle control. Have as much of what you need on hand before you leave for surgery. You want to keep your life a simple as possible for a while when you get home.
Logistics – Have a place set up where you will do your dilating comfortably, where your supplies can be in easy reach and where you can store them nearby (out of sight, if necessary). I like my digital clock nearby so I have an idea of how long I have dilated. If you go to work at a job site, you may need to arrange a place where you can dilate on your lunch hour, if at all possible. I always dilate in a horizontal position so I have no idea if it is possible to dilate while seated on a toilet or standing up in a bathroom stall of the women’s bathroom. But if you work an 8-hour day and have any kind of commute, and figuring that you won’t want to be dilating right before you leave for work (i.e. after you have done your hair, makeup and put on your clothes nice and wrinkle free), that is going to be a lot of time between dilations when you are still at a point where you are dilating four or five times a day at the beginning. Once you are down to three times a day, and especially once you are down to two a day, this won’t be a problem any further. So hopefully, if your dilating goes well, this will be a temporary problem and the powers at be on your job (who hopefully are accommodating) can be told this.
Hygiene – A simple fact to remember: urine is sterile; feces is not sterile. If you do wipe towards it for some reason, keep your stroke short and away from your genitalia: especially your urethra. You don’t need a urinary tract infection. Learn as much about hygiene as you can. And although urine is sterile, it is an acid so it will burn in time. But you should have learned this long ago.
And moreover, because the preacher was wise, he still taught the people knowledge; yea, he gave good heed, and sought out, and set in order many proverbs. – Ecclesiastes 12:9