Azure Jane Lunatic (Azz) 🌺 (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
azurelunatic) wrote2016-12-29 03:49 pm
azurelunatic) wrote2016-12-29 03:49 pm
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As posted to tumblr: my post-PCOS vaginal radiation thingy
http://azurelunatic.tumblr.com/post/155137530202/clue-ambassador-stories-pcos -- with a few extra details edited in.
If you have been diagnosed with PCOS, please follow up about annoying symptoms like extra heavy periods and changes in discharge! Some of the symptoms around PCOS put me at greater risk for uterine/ovarian/endometrial cancer, and it turned out by the time they found it, my endometrial cancer had reached Stage 2.
I had wanted to have my uterus removed after PCOS started causing problems for me, and I’m glad it came out.
Hot flashes are annoying, but I’m coping with fans and ice packs. I will never menstruate again and this is great! I will never be at risk of pregnancy again, and this is also great!
My physical experience of the surgery was relatively easy. It was an uncomplicated procedure (robot-assisted laparoscopic), and I was able to go home the next morning and be left alone. I had some lifting restrictions and going to the bathroom was painful for a few days after the meddling with my pelvic floor, but otherwise the pain medication kept me covered and mostly I was just napping a lot.
I had vaginal brachytherapy for the radiation follow-up, which was essentially three sessions, each consisting of an hour or so of boring being still, followed by ten minutes of also boring being still with a danger dildo. There were minimal side effects.
They place the vaginal cylinder, which is basically a boring plastic dildo with grooves around the middle and a hole in the center. (My team had to ask me to unclench, because they couldn’t get it in at first. I'd warned them that I had strong muscles!) They gently tie it in place with those straps they use on medical gowns over your shoulders (medical bondage! whee!), then they gently immobilize you with foam wedges under your knees and shove you through the CT scanner a few times. You have to be alone for the CT scanning.
Then the physicists do the simulations. This adds about a half-hour to an hour to your first session. (The physicist I talked to said that it was sort of like doing flight simulations or some other high-stakes sim game, where the object is to figure out what combination of time and position of the radioactive sample leads to a therapeutic dose at 5mm of tissue, without also giving you sunburn of the bladder and poop chute.) Sometimes they run you through a few more times. All through this you’re holding very still, so the vaginal cylinder doesn’t move around.
But you can generally have your phone or a book or something when you’re not actively being shoved through the CT scanner. Then you get to wait for the radiation room to be available (still being still below the waist, but they can put you in a waiting room for this and your friend can be there), and finally you get in there. They then hook the cylinder up to the machine that holds the radioactive source. It's a box on wheels that looks a little like one of those portable air conditioners -- about a meter high, with something that looks like an old-school landline phone dial on the front. Those are the channels where the radioactive source comes out, when they send it out. (Prostate brachytherapy is a *lot* more invasive; I recommend against googling for images of that.)
There is a tiny tube that goes from the machine to the danger dildo, and the machine holds a tiny radioactive sample on the end of a very long thin wire. The machine shoves a test wire through the tube first, and upon finding that they didn’t put any bad kinks in the tube, they retract the test wire and run out the radioactive one. Depending on your body, how old the radioactive sample is, and other such things, and possibly the phase of the moon, it can take 7-15 minutes or so with the radioactive source actually inside you. (In case of complete failure of the motor or power or whatever, there’s a hand crank on the side of the box with the radioactive sample, so they can crank the wire back in and seal it up in its tungsten pressure cooker dealie.) The computer controls where inside the danger dildo the radioactive sample is *exactly*. Once the program is done, the computer pulls it back inside the box and they come out and sweep you with a geiger counter to make sure that the radioactive sample is back in the box. (I asked the physicist how many bananas I was. He laughed at me.)
You have to be alone in the room for the radiation. Waiting the 7-15 minutes wasn’t super bad for me. They let me pick the sort of music they had playing, and I probably could have brought something for them if I’d known I could. I had a book. They also had wifi in there, which was nice. I was tweeting from somewhere I had no business tweeting from. The first time around, I got super thirsty; they brought me water but they were worried because I was trying to drink from a cup while on my back reclining and being still below the waist. The second and third time I brought a little water bottle with a straw, which was totally the right decision. I think they were $7 for a two-pack, once upon a time.
Then they start disconnecting you. Once they untied the medical bondage, I was able to eject the cylinder on my own, which amused the team. (I’d *told* them those muscles were strong...) They use a fuckton of lube to get it in there, so they sent me off to the bathroom with a bunch of paper towels to get cleaned up.
Physically, mostly I was extra tired and needed to nap. They said there could be some soreness. There was some mechanical soreness from having an object shoved up me when I hadn’t gotten to do that for a while. There was also a little soreness from the radiation, sort of like the few days before a UTI where you’re wondering if you’re going to actually get the UTI or it’s going to clear up on its own. But mostly I was tired.
The patient relations person for the radiation facility that I went to had previously thought that vaginal brachytherapy was the treatment that she would least want to have, because it's rare and she doesn't hear many patients talk about their experience and it sounds scary. After hearing me describe my experience of it, she changed her mind and thought that actually it sounded like the one she would most like to have.
I didn’t seem to get vaginal stenosis, where enough healthy tissue is burned and dies that you lose significant amounts of elasticity. The physical therapy with the dilators is a lot better if you have a partner Skyping with you. :-P
If you have been diagnosed with PCOS, please follow up about annoying symptoms like extra heavy periods and changes in discharge! Some of the symptoms around PCOS put me at greater risk for uterine/ovarian/endometrial cancer, and it turned out by the time they found it, my endometrial cancer had reached Stage 2.
I had wanted to have my uterus removed after PCOS started causing problems for me, and I’m glad it came out.
Hot flashes are annoying, but I’m coping with fans and ice packs. I will never menstruate again and this is great! I will never be at risk of pregnancy again, and this is also great!
My physical experience of the surgery was relatively easy. It was an uncomplicated procedure (robot-assisted laparoscopic), and I was able to go home the next morning and be left alone. I had some lifting restrictions and going to the bathroom was painful for a few days after the meddling with my pelvic floor, but otherwise the pain medication kept me covered and mostly I was just napping a lot.
I had vaginal brachytherapy for the radiation follow-up, which was essentially three sessions, each consisting of an hour or so of boring being still, followed by ten minutes of also boring being still with a danger dildo. There were minimal side effects.
They place the vaginal cylinder, which is basically a boring plastic dildo with grooves around the middle and a hole in the center. (My team had to ask me to unclench, because they couldn’t get it in at first. I'd warned them that I had strong muscles!) They gently tie it in place with those straps they use on medical gowns over your shoulders (medical bondage! whee!), then they gently immobilize you with foam wedges under your knees and shove you through the CT scanner a few times. You have to be alone for the CT scanning.
Then the physicists do the simulations. This adds about a half-hour to an hour to your first session. (The physicist I talked to said that it was sort of like doing flight simulations or some other high-stakes sim game, where the object is to figure out what combination of time and position of the radioactive sample leads to a therapeutic dose at 5mm of tissue, without also giving you sunburn of the bladder and poop chute.) Sometimes they run you through a few more times. All through this you’re holding very still, so the vaginal cylinder doesn’t move around.
But you can generally have your phone or a book or something when you’re not actively being shoved through the CT scanner. Then you get to wait for the radiation room to be available (still being still below the waist, but they can put you in a waiting room for this and your friend can be there), and finally you get in there. They then hook the cylinder up to the machine that holds the radioactive source. It's a box on wheels that looks a little like one of those portable air conditioners -- about a meter high, with something that looks like an old-school landline phone dial on the front. Those are the channels where the radioactive source comes out, when they send it out. (Prostate brachytherapy is a *lot* more invasive; I recommend against googling for images of that.)
There is a tiny tube that goes from the machine to the danger dildo, and the machine holds a tiny radioactive sample on the end of a very long thin wire. The machine shoves a test wire through the tube first, and upon finding that they didn’t put any bad kinks in the tube, they retract the test wire and run out the radioactive one. Depending on your body, how old the radioactive sample is, and other such things, and possibly the phase of the moon, it can take 7-15 minutes or so with the radioactive source actually inside you. (In case of complete failure of the motor or power or whatever, there’s a hand crank on the side of the box with the radioactive sample, so they can crank the wire back in and seal it up in its tungsten pressure cooker dealie.) The computer controls where inside the danger dildo the radioactive sample is *exactly*. Once the program is done, the computer pulls it back inside the box and they come out and sweep you with a geiger counter to make sure that the radioactive sample is back in the box. (I asked the physicist how many bananas I was. He laughed at me.)
You have to be alone in the room for the radiation. Waiting the 7-15 minutes wasn’t super bad for me. They let me pick the sort of music they had playing, and I probably could have brought something for them if I’d known I could. I had a book. They also had wifi in there, which was nice. I was tweeting from somewhere I had no business tweeting from. The first time around, I got super thirsty; they brought me water but they were worried because I was trying to drink from a cup while on my back reclining and being still below the waist. The second and third time I brought a little water bottle with a straw, which was totally the right decision. I think they were $7 for a two-pack, once upon a time.
Then they start disconnecting you. Once they untied the medical bondage, I was able to eject the cylinder on my own, which amused the team. (I’d *told* them those muscles were strong...) They use a fuckton of lube to get it in there, so they sent me off to the bathroom with a bunch of paper towels to get cleaned up.
Physically, mostly I was extra tired and needed to nap. They said there could be some soreness. There was some mechanical soreness from having an object shoved up me when I hadn’t gotten to do that for a while. There was also a little soreness from the radiation, sort of like the few days before a UTI where you’re wondering if you’re going to actually get the UTI or it’s going to clear up on its own. But mostly I was tired.
The patient relations person for the radiation facility that I went to had previously thought that vaginal brachytherapy was the treatment that she would least want to have, because it's rare and she doesn't hear many patients talk about their experience and it sounds scary. After hearing me describe my experience of it, she changed her mind and thought that actually it sounded like the one she would most like to have.
I didn’t seem to get vaginal stenosis, where enough healthy tissue is burned and dies that you lose significant amounts of elasticity. The physical therapy with the dilators is a lot better if you have a partner Skyping with you. :-P
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Yes, definitely okay to share.
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In all seriousness, thank you for the detailed write-up. This was fascinating.
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I'm glad that I finally had the energy to do the write-up.