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.


Anonymous said...

Catching up. I'm really curious as to why your original RE didn't think IVF was the answer, given that was what ultimately gave you H. Wouldn't the drug protocol help produce better eggs than our poor PCOS bodies can do on their own?

Your new team sounds great. And more importantly, it is wonderful to read you thinking positively about the doctors, and about your treatment options.

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Anonymous said...

Hi Egg!

In answer to your question on my blog, yes- the IVF stims definitely affect thyroid meds. My f/s has FINALLY realized that this is a known issue, so I no longer have to fight him to get him to test my TSH every cycle.

What I do is I get my TSH tested on Day 3, and then again mid-cycle. And once I start taking any sort of stims or estrace (or birth control pills as they affect it too), I take an extra 1/2 pill every second day. That seems to work to keep me balanced, but I still make them check it twice, just to make sure.

Also, I would vote for PGS testing for sure. I have a friend who just did IVF with PGS testing because she lost a baby to a genetic disorder and they know now she's a carrier. She had seven blasts frozen- five turned out to be affected, either with that particular problem or some other chromosomal issue. So she only has two left, but she KNOWS that these are healthy blasts, so they've eliminated the miscarriage risk if they implant upon transfer. Her first FET is coming up next month.

Good luck, hun.

Caroline said...

Ah, hope. That wonderful and pesky little bastard. Wishing more hope finds you in the weeks and months to come.

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