December 19, 2013
People keep asking me how I am doing. I’m fine, some pain still but mostly I’m getting around pretty well. I’m not 100% yet and just sitting up for long periods of time is still problematic, but I can function on my own. I can drive, I can walk, I can work, etc.
No, but, how are you feeling EMOTIONALLY about having it gone?
Um…good riddance? It hasn’t hit yet?
At this point I’m starting to think it’s NOT going to hit. I thought I’d have some delayed emotional reaction to evicting my womb and any possibility of EVER carrying a child. But, so far…NOPE. I guess I’d already accepted that as fact long before Medusa was ousted. She was declared unfit so long ago. And twice even.
So here’s how it went down, sans emo.
It was a dark and stormy night. Well, dark and rainy anyway. It rarely storms here. We had to leave the house at 4am to drive the hour long trek to the hospital to arrive at 5am – two hours before surgery. Everything went pretty smoothly. I got checked in and paid my copay (which was more than they had originally told me but still quite reasonable). They gave me a space age gown you blow warm air directly into. BUT FIRST. Why don’t you just go pee in this cup real quick? Sigh. No, I’m not pregnant. But I will play your game ONE LAST TIME.
I’d been anxiously awaiting Aunt Flo for several days and wondering where the hell she was. She chose that pee-in-the-cup moment to finally appear. So, ten minutes later, when I’m in the super warm gown [Can I get one for home, please?] and the nurse is asking questions and comes around to When was the first day of your last menstrual period? I got to answer, “As of ten minutes ago, it’s TODAY.”
After the flurry of initial activity, Right Guy and I waited around for about an hour before anything else really happened. The anestesioloigst came in to introduce himself and explain his plan, etc. He was very sniffly and kept wiping his nose but claimed he wasn’t sick. It was a little unnerving but what can you do? I decided to take him at his word and just believe that he wouldn’t put anyone at risk. I explained that I had taken my Cele.brex just before I left the house as instructed and he seemed happy about that and confirmed my intent to try and go home after surgery. [The Celebrex was supposed to allow him to give me less general anesthesia and more local, thereby reducing the side effects of the general in the hopes of quicker/better pain management post-op so I could go home instead of needing to stay overnight. And I guess it worked.]
Finally Dr. CanDo arrived. She is ALL BUSINESS. You ready to get this done? Yes. Let’s do it then.
OK, she said more than that. And I was given the opportunity to ask any last minute questions, which I did. But it was still a pretty short conversation. Which suited me just fine. Let’s not drag this shit out. I appreciate a woman of few words.
The anesthesiologist came back and said it was time for the good meds. At some point the nurse had put in two IV lines. They wanted two two because it was robotic surgery. Something about the position you’re in during surgery and if anything goes wrong they want two lines. The explanation is a bit hazy. What happened next is A LOT hazy. The good meds kicked in HARD. I looked at Right Guy and smiled stupidly and said something like, “Holy Shit.” I honestly don’t remember if I said “I love you” before they wheeled me away. I know I meant to but, damn, I was out. I also don’t remember if I had to move off the gurney to the surgery table like I have had to in the past for pretty much every surgery I’ve ever had. I don’t know if my memory of doing that was from this surgery or one before.
Point being, I GOT THE GOOD DRUGS.
The next thing I remember was waking up in recovery and immediately trying to assess how much was done. I determined that I was not in enough pain for it to have been overly extensive. Don’t get me wrong, I was in pain, but not more than I had expected. The nurse said something about the catheter and did I want it out. Um, YES, please. And then he said it was time for more good drugs. And good drugs they were although I stayed awake too enjoy them this time.
I overheard him saying, “hysterectomy and bowel resection” and starting freaking out. What? Bowel resection? Wouldn’t I feel worse if they had done that? Also, he just gave me crackers to eat. Surely, I did not just have my bowel resected? I can only assume he was either misinformed or that there was someone else in recovery with a bowel resection.
After a cracker or two and a little juice they wheeled me back to the recovery area where you can have visitors and someone roused Right Guy and fetched him for me. He apparently slept through the entire thing. He claims he wasn’t fully asleep but later my surgeon said he was. Whatever, he hadn’t slept AT ALL that night and if he got to miss the anxiety of waiting so much the better. Again, I overheard the nurses talking and I heard something about “only one incision.” Really? Me? Not possible. I tried to mentally feel my belly for incisions. I wasn’t ready to see it/them yet. It does kinda feel like just one but that CAN’T be possible. Whatever, it is what it and I need to concentrate on other things right now. I got some more juice and some jello. I knew I had to pass tests before I could go home so I was determined to drink plenty so I could pee and go home.
I was a woman on a mission. Don’t fuck with me when I’m on a mission.
I waited until my bladder, which felt very weird, simply had to be full before attempting verticality and peeing. I rang for the nurse and she walked me to the bathroom and instructed me to pee in the measuring cup (no idea what those are called) that was tucked under the toilet seat. Walking was not as bad as I had feared. Peeing was not as easy as I had hoped.
Peeing after having a catheter is always a bit weird and slightly painful. It took a few minutes for nature to kick in. The nurse knocked and asked if I was OK. I guess I was taking longer than I realized but I didn’t want to force anything. Finally it happened. And I guess I performed well and met their requirements for volume. When I got back to my bed the nurse said something about an ultrasound and I nearly cried at the thought of someone putting pressure on anything in that general area. They were talking about checking my bladder for retained urine. Then they looked at my output and determined I could skip the ultrasound. Whew. Score one for me for waiting until I was bursting so I could pee in high volume. 😉
Now we just had to wait for my surgeon to get out of the surgery scheduled after mine since neither of us had actually talked to her yet. I had since confirmed with the nurse that I did indeed only have one incision. She asked if I’d like to fill my prescriptions at the hospital pharmacy. I said yes. Right Guy asked where it was so he could go get them and the nurse said, “Oh, you don’t need to go over there, they deliver them.” Say what?! What you talkin”bout, Willis?
The pharmacy delivers and the gowns have heat pumped into them. That alone is worth an hour drive. Silly me, my last few surgeries have been at university hospitals and this one was private. Yes, I think I need to go back to the private sector for ALL my docs from now on. So much NICER.
Anyway, it took awhile but the prescriptions finally showed up as did Dr. CanDo. Her first words? “Who wants to watch a video?” Me, me, me! She tossed the DVD to Right Guy and said I should probably wait a few days to watch it. [I STILL haven’t finished watching it] When I asked her about how I only had one incision she simply said, “Magic” as if she owned a HArry Potter wand. She told us from where she removed endo and mentioned surprise that she found no adhesions. Pretty simple fare for her, I think. But I’d rather have her expertise and not need it than the other way around.
And so I got dressed and dutifully sat in my wheelchair while Right Guy pulled the car around. The weather had gotten much worse and I had to do a bit of back seat driving, which I generally don’t do, because I really did not want to survive surgery only to die in an auto accident. Also…I’ve hydroplaned before and totaled my car doing it. It’s an experience I do not wish to repeat as I’m sure I wouldn’t be as lucky. But we made it. I set up camp on my sofa with some juice, Better Cheddars, Pops’ iPad and all my drugs. And I pretty much stayed there for three days straight. Oh, and the trend of GOOD DRUGS continued at home with delau.lid.
I drank A LOT of fluids so that I would have to get up frequently. I did this for two reasons:
- I did not want to get a post-op UTI. I recently discovered that I have developed an allergy to the OTC drug that alleviates UTI symptoms so I pretty much hope to NEVER EVER have one EVER again.
- Getting up was painful but I knew that the more I did it the easier it would get and the faster I would recover.
So, yeah, that’s my big recovery secret: drink a lot so you pee a lot. 😉 It kind of sucks at first but it gives good results.
By Day 4 the pain was starting to back off a bit and I was moving around more easily and felt better about attempting to sleep in my bed. I even logged in to check my work email and say Hi to my boss.
And now I am 4+ weeks post-op. In general I’m doing well. So well, in fact, that I keep overdoing it which brings back pain. The muscles surrounding that one incision are decidedly unhappy of late. I’m having a lot of trouble discerning where my limits are. I tend to only realize I have passed them well AFTER I’ve done so. But, all things considered, I’m still doing really well. And the emotional breakdown I’ve been expecting has yet to occur.
Dare I tempt fate and say it won’t?
November 15, 2013
Today’s NaBloPoMo writing prompt is: If you could quit one bad habit instantly without difficulty, which would it be?
I am going rogue today because this arrived in the mail today.
And it needed to be posted.
I’m not one to hang a uterus on my wall normally. But I have never EVER seen a piece of art that made me feel so…not alone. This piece felt like someone made it SPECIFICALLY for ME.
It came from an Etsy shop. Click on the image to go to there.
Thank you to my #FoxTroop #TwitterFairies for sending it.
Oh and, if I could be better at finishing things I start, that would be a good bad habit to break.
October 30, 2013
First things first. This post is almost assuredly not about what you think it’s about. I just like catchy titles. 😉
I’ve been meaning to do this for a long time. I’m not sure why I didn’t do it before now. Perhaps out of fear that I was misremembering. Or out of hope that it would change. But I finally did it and, unfortunately, it seems I got low-res images or something but I maintain that I am NOT misremembering. It’s just that Medusa looked so much scarier on the big screen and, um, IN FOCUS.
If you’re lost, not to worry. Medusa is my uterus. Yes, I named her. I finally requested the Xray images from my HSG (hysterosalpingogram) from over a year ago and they came this week. I’ve seen other images that are more recent but I don’t think they saved any electronic images from the SISG (Saline-Infused Sonohysterogram) from earlier this year. Which, despite three months of Lupron (evil drug that puts you in a temporary state of menopause for those who don’t know) which was supposed to tame the Wild Wild West that is my uterus, basically showed the exact same thing as the HSG the year before.
This is the zoomed-in, low-res version so it’s not quite as clear as I remember it. But it appears that Medusa actually looks more like…Batman. That’s right – my uterus is dressed up for Halloween. Hands up! Who else dressed up her ute for Halloween? Anyone? Bueller?
All that darker gray stuff is my uterus. You can see how, on one side, the dye flows up and out my remaining fallopian tube. On the other side there is a stump. A much larger stump than I would have imagined they’d leave, frankly. But then the demarcation of intra-uterine cavity (dark gray) and uterine wall is kind of…well, MISSING. You see, the dye flows into the uterine wall. As well as into the pocket at the top that is Batman’s head. That’s where my zombabies implanted. Except, at the time, it wasn’t wide open like it is now. It was a pocket inside the uterine wall. Or my lining was so fluffy it appeared to be inside the wall.
Then there’s that weird spot where the dye seems to take an off ramp from the left fallopian tube (on the right side of the pic). No one is quite sure what to make of it – except that it is more likely a uterine issue than a tubal issue and that it is almost certainly caused by the adenomyosis.
I feel like no one really understands what adenomyosis is. I know it took me a long time to wrap my head around it. Ever since my first pregnancy when I first heard the word and, let’s be honest, began obsessivley googling it, I’ve been trying to imagine how exactly your uterine lining can grow into your uterine wall. And I’m not sure I really got it until I saw these images on the big screen. What looks all blurry and light-medium gray above is actually more like tiny rivers of dark gray through the light gray. There are tiny little rivers/nooks/crannies all over my uterus. Kind of like a bomb went off and shrapnel tore up the walls. Or as my RE said, “Your uterus looks kind of like…Swiss cheese.”
[For serious, he really did say that]
I often refer to the “hole in my ute” which is not really a true hole – or at least they think it’s probably not…??? No one is sure whether it goes all the way through. But “hole” just seems the easiest word to describe the thing near the left tube where the dye just kept flowing. And even though it may not look like it in this image, it’s the largest problem area of all. All the other “holes” are tiny in comparison. More like a sponge than a hunk of cheese.
[No, YOU briefly toyed with the idea of naming my uterus with a SpongeBob theme]
Whatever analogy you choose, it boils down to this: Not Safe For Tiny Human Cells With No GPS.
T minus 19 days to eviction day.
October 17, 2013
I mentioned this on Twitter about a week ago but everyone must have been off looking at something else [shiny baubles no doubt].
I FINALLY named my hangry uterus something other than AngryUte.
Perhaps this is not big news to everyone else but as she nears her demise I’ve felt more and more strongly about naming her. Having a name for something gives you power.
And so… I named her… Medusa.
Because she’s ugly and her wall has all sort of offshoots like Medusa’s snake hair. [I seriously have GOT to get the image from my HSG so I can post it]
And she’s just a mean hangry bitch.
I really hope Dr. CanDo doesn’t turn to stone in the middle of my surgery.
October 3, 2013
My guess is that it has not gone unnoticed on Twitter that one day I’m tweeting about pain and silly GYNs who don’t want to give me more pain meds just to make it to surgery and the next I’m tweeting about running a 5k. It’s confusing. Even for me.
So… here’s the deal. Most days I am in pain. Most days it is not so bad that I cannot walk/function/go to work. Of course, I do so operating on 800mg of ibuprofen every 4-6 hours (usually closer to 4 than 6). That’s 4 Advils at a time, people. [And, yes, I DO worry about giving myself an ulcer/liver damage, thank you for asking.]
I absolutely despise the pain scale doctors force you to use. The numbers have really ceased to have meaning for me. I have hated this scale ever since I awoke to what I now call an 11
during before (I knew of) my first ectopic. My first thought was that if 10=childbirth there’s no way I can survive it. Only much later did I realize that that pain was likely my uterine wall tearing. Anyway, I also recognize that it’s the only measure we’ve got so I’d better try to use it.
But how can you accurately characterize a constant/chronic pain? Even if it’s only a 3, if you get no relief, the effect is that it starts to feel like a 5 because it won’t go away. I am fortunate that my current pain hasn’t really topped a 7 and usually any level 7 pain is fleeting and doesn’t last long.
But most days I operate at around 2-4 AFTER the giant dose of Advil. But, for some reason I have yet to figure out, it often gets worse with exercise and also as day turns to night.
Evenings seem to be worse, real or imagined. Whether the pain actually gets worse or whether my tolerance just goes down I couldn’t say. But that’s when the narcotics come in to play. If nothing else it gives me a mental holiday from the pain. And that keeps me sane, boys and girls.
Running the 5k was a calculated risk. I had planned to take a prophylactic narcotic for it but I ended up having to drive myself there so that option fell off the table. But I
figured hoped I could hang strong for this ONE event.
And I did. Not having properly trained I knew I couldn’t run the whole way. But I finished (and NOT last!). And you know what pain bothered me the most during the race? My sciatica. Which I presume to be entirely unrelated to my endo/adeno pain (although wouldn’t it be nice if surgery fixed that?!).
I paid for it after the race but it was worth it. Also, THIS happened recently.
Also worth it. So I guess the bottom line is that I’m refusing to let my pain dictate EVERYthing I do. Sometimes I say no. But if it seems worth the pain, I just do it anyway.
September 12, 2013
Just in case you don’t follow me on Twitter [WHY DON’T YOU?], let me recap. I have a twitter friend. She’s a touchy-feely social worker type but I like her anyway. She works with an endometriosis specialist doctor and counsels endo patients. And she has endo herself (and in some pretty odd places that will make you go O_O ).
Long story short, she’s been bugging me to break up with my GYN and find an endo specialist in my area. Apparently there aren’t that many endo specialists out there. [WHY NOT?!?!?! THIS IS A DISEASE THAT AFFECTS MILLIONS OF WOMEN!]. In any case, a short list of expert endo surgeons can be found here. Perhaps there are more. I sure hope so.
I have a history of endo. As well as a history with doctors who said, “Oh no, that’s not a symptom of endo.” When I went off birth control at my RE’s instruction I was TERRIFIED it would just lead to horrible pain (like it did the last time I went off BCPs to TTC with Wrong Guy). But it didn’t. My body had shut itself down for reasons unknown to modern medicine. And the endo stayed away. For three years. I thought I was home free. I’m supposed to be reaching early menopause after all.
So anyway, this twitter friend perpetrated some minor chicanery and got me an appointment with a (somewhat) local specialist well in advance of when her office was normally scheduling new patients.
My GYN had said if she did surgery she would do ablation. If endo was on the bowels – nothing she could do. If endo was on the ureters – nothing she could do. A high percentage of women still have pain after surgery. Or she could open me up and find nothing and then I’d have pain and no diagnosis. Mind you, this GYN has NEVER done a physical exam on me.
The specialist… what shall we call her? Dr. CanDo. She said the word CAN’T is not in her vocabulary. She couldn’t guarantee that she could fix all my pain but she felt confident that she could help it and whatever she couldn’t fix (i.e. something not endo or adeno) she could diagnose and refer me to someone else who can help. Oh and that endo on the bowel which she thinks I definitely have? She can excise it.
Dr. CanDo poked me in places not poked before. I’m still not confident that she has a handle on all my exact issues (it’s only been ONE appointment) but I do feel confident that she can help and that she can fix a fair amount of it.
For starters… Angry Uterus is going Bye Bye. Don’t let the door hit you on the ass on the way out.
This is something that GYN was extremely reluctant to do. She feels that as long as I don’t bleed my uterine pain is under control – which is partially correct. But it’s becoming more and more difficult to keep me from bleeding. Five doses of lupron and 3 packs of continuous BCPs later and I’ve bled twice and suspect I’m about to again. And Dr. CanDo suspects that removing the uterus may help other pains as well. Apparently when the uterus contracts due to adenomyosis it disrupts all the pelvic floor muscles which in turn throws off lots of other pelvic muscles. Long story short, she thinks a lot of my pain is MUSCULAR.
Angry Ute has tried to kill me. She’s not suitable for the growing of tiny humans. And she causes me pain. Why shouldn’t we get rid of her? Really, what’s the point? Because it’s so… FINAL? Well… most REs won’t touch me with a ten foot pole. Is that not final? You really think I’m going to accidentally get pregnant while not having sex because I’m in pain? Nope. I don’t think so. So let’s throw her out.
Dr. CanDo thinks I can keep my ovaries. I think Righty is suspect but we’ll wait and see what she looks like on the inside. As far as I know, there is no reason not to keep at least one ovary, if not both, and that is good news.
So… let’s just take her out a call me officially barren.
April 10, 2013
While I appreciate everyone’s support and cheering me on as I attempt one last FET, I really want to set the record straight.
It’s not just my pessimism that makes
me say things like IF I make it to FET.
Whenever I say that, I’m met with, “Of course you will!”
Well, thanks for staying positive, folks. But the reality is, I may not. And while I
want need to stay focused on a positive outcome (i.e. baby) I also need to remain grounded and realistic.
This is a Hail Mary Pass. The odds of this working are slim. My RE wouldn’t have agreed to it at all if I hadn’t expressly stated my understanding of that fact.
The first obstacle was to get on Lupron. I thought that was going to be an easy hurdle to jump. Not so. A cyst and a kidney stone delayed that by almost 3 months.
But now I’m on it and the first post-Lupron ultrasound indicates that it is helping. Although I’m still in pain (more on that another time).
So. First hurdle jumped. Jumped late, but jumped.
Now that we have an external view of things (the ultrasound) the RE wants to verify that the inside of my uterus is also looking better. This was done before my last FET as well. But I wasn’t as worried then. My uterus was not quite as fucked up at that point (or at least we don’t think it was). I’m not really confident that my uterus can make it back to anything resembling normal at this point.
It’s difficult to explain how adenomyosis works. Google it and the definition will probably make your head spin. At least, it took me quite a while to truly wrap my head around it. I like to compare an adenomyosis uterus to an inside-out asteroid. There are just a lot of craters and nooks and crannies in the inner wall of my uterus – it’s almost being eaten away. It is truly a scary place. I’ve seen the imaging.
But maybe it can recover enough which is why we’re trying.
Assuming my uterus can play the part of looking normal it then has to grow extra fluffy lining. The RE wants my lining thicker than usual to cover up all those nooks.
Then comes the really hard part (in my mind). The embryos have to survive the thaw and grow to blast. In the lab.
I’ve already lost one embryo this way. So this part worries me. A LOT.
I could potentially do the impossible and tame my body and still not make it to transfer because I’d have no embryos to transfer. (Alternatively, they could surprise the hell out of me and we’d have to re-freeze one of them.)
I know this probably all sounds trerribly pessimistic but I’m really just trying to be REALISTIC.
I can’t do this without at least a dash of hope. But I also can’t let that hope grow too large and cloud the reality of the situation.
The reality is that those embryos would be better off transferred to a healthy uterus. But mine is the only one available at the moment.