The Unexplained

March 6, 2014

Recently [this post has been sitting as a draft for some time but that doesn’t really matter since this topic recurs on a regular basis] there was a discussion in the IF corner of the Twitterverse about whether it is better or worse to have an explanation for your infertility. This is an old topic that surfaces every now again – usually when someone who has unexplained (or not well-explained) infertility decides to stop treatments. She knows that stopping is the right choice for her but she still doesn’t know WHY fertility treatments didn’t work. It seems to be frustration piled on top of anger piled on top of heartache.

My infertility is explained – thrice over. Well…explained may not be the best word for it. But I have diagnoses. I can give a name to the cause of my infertility if not a name to the cause of the cause. Giving a name to a thing can give you power over it – or a sense of power. I have names I can bandy about: Diminished Ovarian Reserve, Endometriosis, Adenomyosis. I have test results like AMH, FSH, countless ultrasounds, MRIs and now a pathology report that validate those diagnoses.

In the end, no one can tell me why I have these issues. No one can tell me what caused them. Not even one of them has a known cause in my case.

But I have names to call out and curse. Unfortunately they are all too long to produce any catchy battle cries. “Curse you, Diminished Ovarian Reserve!” just doesn’t have a good ring to it.

Am I lucky? Maybe. Probably. Most days I think so because I’m a person who likes to know things. Also, in the world of fertility treatments I am a rare bird. I didn’t have to make the difficult choice to stop fertility treatments. My RE broke up with me and said your uterus is Swiss cheese please stop the madness. Most people who have gone through IVF don’t have such concrete evidence of what is wrong with their reproductive organs.

And so I am somewhat lucky. I can’t imagine not having a name for what is wrong with me or having doctors that say, “It’s just bad luck, why don’t you try again?”

Actually I CAN imagine not having a name for what’s wrong with me as I did go through that before getting the endometriosis diagnosis. For any health issue, fertility related or not, it can be mentally and emotionally debilitating to have symptoms and no diagnosis. Doctors start giving you that look. That look that says maybe it’s all in her head. And after a while you start to believe it, too. But for those of you with unexplained infertility your only symptom may be empty arms and a broken heart.

And for you I have a proposal. I have names but no ultimate causes. A name is just a word given to something. Why don’t you name your infertility? Give it a name. OWN IT. That’s why I named my uterus. Maybe it won’t work for you, but for me it has helped to actually embrace it, own it…then beat it the fuck down. I got to do that literally through surgery, but words can work too (The pen is mightier than the sword and all). So give your infertility some manner of -osis and start yelling at it.

Just pretend you’re Meredith Grey and invent something like “Hostile Uterus” (OK it’s not entirely made up). Or be cheeky and call it Raymond – because everyone does NOT love him – or some other name you dislike. I can see how screaming at George or Shirley that s/he’s an ugly sonofabeach and should get the fuck out could be therapeutic.

Or not. You decide.

[DISCLAIMER: In case it wasn’t glaringly obvious to you, it is not my intent to poke fun at people with unexplained infertility, merely to have fun with what could be a therapeutic process in dealing with it.]

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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?

It’s What’s For Dinner

November 17, 2013

Jell-O.
With some watered down Gatorade.
image

Fuck Uterus

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.

image

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.

Ch-ch-ch-changes

November 6, 2013

Oof. This one is a can of worms.

Today’s NaBloPoMo writing prompt is: If you could change one thing about yourself, what would it be?

Most people probably think first of some visible physical attribute they don’t like: nose, boobs, etc. But I can deal with my Spock ears. I’ve made peace with them over the years.

Can I choose something like “be healthy” or do I have to get rid of just one of my conditions? In the spirit of the question I guess I’ll give it a conservative interpretation.

I would make my uterus work. I can deal with all the other conditions that affect my fertility (and the ones that don’t) but I would really rather trade in Medusa for say… Samantha from Bewitched.

[Thank you Mona Darling for placing this reference in the front of my brain]

Even if it takes IVF to get me pregnant, a working uterus would still allow me to be pregnant. You know, in the right spot.

I would love to not have ever gone through life-threatening pregnancies. Ectopics are no joke. It’s been two years since the last one and I’m still working through the resultant anxiety and PTSD from the one before it.

So yeah, if I could change one thing… I’d change the thing that has brought me closest to death. My own death, I mean. This organ just keeps trying to kill me so I’m evicting her (T minus 12 days). But I’d really prefer to REPLACE her. Or to have not been dealt her in the first place.

I’d swap out Medusa for a more Samanatha-like uterus (bonus points if it can work magic).

Holy Halloween, Batman!

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?

xray image

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.

Greek Mythology

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.