Wednesday, September 11, 2013

A Tale of All the REs

The balloon has landed, outside of my vagina. Gone is the plastic-tube penis. Alas, no Butterfinger or Jolly Ranchers fell out of it. It did, however, hurt like heck to have it taken out. FYI, if you ever find yourself going in to have a balloon taken out of your Queen Victoria, please do not overlook, as I did, the doctor's instructions to take some sort of painkilling or mind-numbing medication in advance. Because it's very difficult to try to relax, as they tell you to do, when they're yanking something from your uterus.

Anyway, the appointment went surprisingly well, other than the mind-blowing discomfort part. The RE who assisted on the surgery spoke very highly of my uterus. She feels it looks great, with really no signs of previous bouts of scarring. She didn't see any reason not to proceed as planned. The conversation, dare I say, made me feel something unfamiliar, something warm and fuzzy...something like hope.

Before we go any further, I feel like I need to bring you up to speed on where I am with REs. I've had some interesting recent consults that must be reported on. It feels like choosing the right RE could have lifelong implications, so I need you to help me make sure I'm not making a colossal mistake.

Let's start back in my old town, before my move this summer. I've spoken many times before about my devotion to the RE who helped us get to H. I first saw her back in the summer of 2008, when the first RE in the practice wanted to cancel a cycle. The nurses whispered to me that I might want to see this other doctor who would have more patience with the "low and slow" protocol required for PCOS patients. I'm sure it was against the rules for them to suggest another doctor to me, and I'll be forever grateful for their breaking them.

This doctor got me right away. She not only knows the medicine -- what was needed to get me to actually ovulate so I could get the IUIs done -- but she instinctively gets the hand-holding part too. I needed a coach, almost a mentor. I needed someone to say you can do this, someone to walk me through the tough parts, someone who saw me and believed in my quest for motherhood. Maybe it's not reasonable to need that from a doctor, but the good news was I never had to ask for it from her. She told me when I was being crazy, she gave it to me straight. But she never made me feel stupid or belittled my feelings about an intensely emotional process. She said the words I needed to hear, the right words at the right time, the words that helped me push myself harder and get through more than I thought I could handle.

And she did what it took, she came up with the formula needed to get us to our H. For that, my gratitude is and always will be beyond the bounds of words.


After I found out the third post-H pregnancy (in November of last year) was another fail, I started to get itchy. My RE was standing by her sense that IVF wasn't the answer. I didn't know if she was right or wrong, but I wanted to try something else. If the definition of insanity is doing the same thing and expecting a different result...I just needed to mix things up. I got two opinions.

One was perhaps the most bizarre meeting with a physician I'll ever experience, so that one is worthy of a separate post. But the other meeting was with an RE at a well-known center that's made many of my friends mothers. He said the right things. He thought he could help. He felt IVF might be the answer. We decided to try it, and we wanted to fit it in before our move. But I wanted closure with my longtime RE so I had her do the post-D&C look at the uterus. She pronounced it clear and was incredibly gracious about our moving on.

I started the Pill. It made me sick. I was stressed about the move, and the whole thing just didn't feel right. I stopped the Pill and decided to wait until after we moved.

Then we moved, I found out I was pregnant again (who knew I am now one of those women we hate, except for the minor point that all my easy-to-conceive fetuses have died), and things got a little more complicated. I had to find an OB in a completely new town and state to track the pregnancy. I had to trust her to do the in-office D&C and not scar me. I met with an RE, liked him well enough to have him to do the post-loss sonogram, and then decided when he found something awry -- the new fibroid in the cavity -- that I didn't feel comfortable enough with him (or, more specifically, his fertility center) to have him cut my uterus.

What I've realized is that I'm just more comfortable treating this process like it's a medical condition -- i.e. going to a doctor directly affiliated with a medical center, or more specifically, an academic medical center -- than a standalone clinic. There's something more "retail" about the latter, something that feels a little less grounded in science, even though I know the facts don't really back that feeling up. It's just my gut, and after everything I've been through I just think my gut deserves to be heard.

So I ended up at a center that has that hospital/university connection, and a team of doctors that I'm coming to trust. One just finished her fellowship at another well-known university-affiliated program, and while she's new to the specialty, I love her energy. She is the one who talked me down from the ledge before surgery the other day, and when she removed the balloon on Monday she inspired confidence by knowing exactly what she was talking about. It does give me pause to work with someone less experienced, so I'm meeting with a more experienced colleague of hers in the practice next week to come up with a plan. Together, they're beginning to feel like a team that truly might lead me to another baby.

I don't know when this fibroid came up. I don't know if it was there when my long-trusted RE scoped me in March, though I do know that my new doctor told me they didn't see it in the OR when they initially went in with the hysteroscope -- only when they used ultrasound did they find it. It sort of tells me that maybe it was there, and maybe her policy of using hysteroscopy versus saline sonogram may be flawed. But that fact, all the steps I took to get to this point, painful as many of them were, is starting to feel less important to me than the steps -- the possibility -- in front of me. I'm taking that as a good sign -- something I haven't seen in a while.

Sunday, September 8, 2013

New Methods of Vaginal Humiliation

I'm sick of feeling vulnerable.

I'm sick of laying down and putting my legs in stirrups and bracing myself for whatever they're going to find.

I'm so tired of being wheeled into yet another procedure, brought down the long, sterile hall, alone with the doctors and nurses, because it's my body that's broken and needs fixing, and no one else can go through the surgery for me.

I'm long over laying on the couch, losing another sunny day to feeling like shit, or bleeding too much, or crying the hormones out.

I don't want to worry anymore about heartbeats or complications. Can no longer handle being the 1% standard deviation patient.

I had the surgery, on Wednesday. They successfully removed my submucosal fibroid.

And now, having thought I'd suffered every humiliation possible in this quest for children, I learned but wait! There's more. There's something called a balloon catheter that they sometimes put in your uterus after something like a fibroid surgery. They blow it up with saline and shove it in there so the walls of the uterus won't touch and form scars. My witty friend S. suggested that perhaps they could put candy in it instead, so you could be a human piƱata! That would only be mildly less humiliating.

Last night, the tube of this catheter fell out of my vagina, which they warned me may happen. So now? I have a long, plastic tube hanging from me. This feels nothing like the tampon string the doctors suggested it would feel like. They should really test these things out before they go making such declarations. What it feels like is a big, heavy piece of plastic hitting the inside of my thigh and shifting around every time I walk. I now know roughly what it would feel like to have a really skinny penis and it makes me sort of understand why guys are always adjusting themselves.

But back to the surgery. So I finally settled on a surgeon and center, though I still had reservations. It took me years to build enough trust with my old doctor to the point where I never questioned her, and surgery became if not comfortable, at least less panic-inducing for me. I'm still trying to process exactly what happened, but it seems like she missed the fibroid in the cavity when she scoped me in March, before the last pregnancy. That pregnancy was chromosomally normal. Did it land on the fibroid? Would I still be pregnant with a healthy boy if it had been caught? Was it indeed there, or did it surface during or after the pregnancy? I am asking questions about a doctor I adored and trusted wholeheartedly, and constructs of reality are being torn down. So I don't know exactly how to trust a doctor I really don't know at all.

I got my period last Friday, of course, the day we headed off with H for a much-needed mini vacation after a summer of moving and settling in. I called the office, scrambled in for blood work and the surgery was scheduled for Wednesday. And even after all I'd been through, every prior surgery that told me this one would be okay, I was terrified. We dropped H with a generous friend willing to watch him and then I was in my pre-op room, waiting.

I wanted my husband to do it for me. I wanted to run away. I wanted to pick up H and enjoy the sunshine at a park. They wheeled me in. I said I wasn't sure I could do it. They called in an anesthesiologist who "specializes in anxious patients." I asked the other guy if I scared him away. The row of doctors and nurses lined up at my bedside laughed. They gave me Versed, the edge was gone, and the last thing I remember is being told a random story about the anesthesiologist's first job.

When it was over, I couldn't wait to leave. I bounced up, relief overshadowing the need to move gingerly. I was standing in my friend's driveway talking about H's time with her when I felt the first gush.

I got home and assessed the damage. Lots of blood. Pad the heaviest I've ever seen, densely red. I called. They told me it's normal, it's probably less than I think, when you've been laying down a while it gushes out sometimes. You know what? I've been to this performance before. I know a pas de bourree from a pirouette. I know the difference between blood coming out and coming out in a way that almost hurts. They urged me to lay on the couch a while and see if it slowed. When I moved at one point and saw that my couch cushion looked like a b-grade horror film scene, we were back in the car on the way to the ER.

I sat on the toilet in the ER, giant clots coming out of me, and just thought I'm done. Worst-case scenarios whirled through my head. They tell you there's a risk of their piercing your uterus during surgery. Don't they say that because it happens sometimes?

That wasn't what happened to me. I was in a 1% complication bracket with the complication it was, but luckily it wasn't the kind of 1% that required more surgery or worse. It was a bleed at the site on my cervix where they put the tenaculum. Apparently bleeding at that site is common, but usually resolved at the end of surgery. Mine reopened and needed cauterization. Then I could finally go home to the couch, still dizzy from the meds. I slept on and off for two days straight. I felt like I'd had a run-in with a large truck. I'm still exhausted.

On Monday, the balloon catheter comes out. Then I meet with a doctor to determine an IVF plan.

I've known for approximately forever that I wanted kids. It's deeply part of the fabric of me, like feeling the first chill of autumn somewhere in my soul and loving Nora Ephron movies. I can't change that. I had a beautiful baby boy 3.5 years ago and it didn't cure me of wanting kids any more than winning the World Series makes a ball player pine for retirement. For some reason, the one thing I've wanted, more instinctively than anything else, is hard. Damn hard. Harder than anything I've ever done. And unexpectedly, despite all the time I've spent in this zone of fighting for it, I feel like I have fewer answers than ever about what it all means or where I'm supposed to go or how long I'm supposed to fight.

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