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Archive for the ‘diagnosis’ Category

I went in for my post-op appointment on Friday and also found out some information about my upcoming FET cycle.

In bad news, my endo had moved from stage 1-2 to stage 3. Blech. He said there wasn’t a ton of endometriosis on my left ovary, but there was a lot of scarring and adhesions that had left it adhered to my pelvic side wall again. It was also wrapped all around the uterine ligaments. Given that I don’t really need it anymore in terms of getting pregnant, we discussed beforehand whether it might make more sense to remove it as 90% of my pain is on the left side.

He said he was surprised that I had gotten PG on my own at all because both of the tubes had telescoped in on each other (I didn’t understand this description, but he just means they have collapsed like a closing telescope.) There was a little endo on the right ovary and tube that he removed.

He also removed a small uterine fibroid. Not because he thought it was a problem, just because it was bothering him to look at it (his words.)

He said he was up at 2am the night before thinking about me (um, weird!) and decided to put me on some add-back estrogen because he’s afraid being on the lupron depot could be cutting off too much blood supply to my uterus. When he did the hysteroscopy (camera in the ute) during the surgery, he said the lining looked very very thin. It should because of the Lupron Depot, but he didn’t want to go overboard.

So on Tuesday I’ll get my last Lupron Depot shot. That will be CD1 I’ve started taking add-back estrogen (2mg) 1x a day. CD 19-28, I’ll start up on prometrium (progesterone) again to bring on a period.

When I get my period, I’ll continue with the estrace, take prometrium CD 19-28 and start daily lupron day 21 (daily shots meant to suppress ovulation.)

I’ll probably do an endometrial biopsy between days 22-26 of that cycle. It should give him an idea of what my lining is doing after the lupron and will have the added benefit of “irritating” my ute so that it will produce a thicker lining the next month.

Somewhere around June, I’ll start a patch protocol for the FET, which, as I understand it, means using estrogen patches (Vivelle) of increasing dosages to build up my lining. Then I’ll start some antibiotics (protect against infection) and prednisone (a steroid to fight inflammation and help with implantation.)

My husband will also take antibiotics do he doesn’t give me anything gross. ūüôā About time he had to take a pill!

I may do intralipids at some point. I’m not entirely sure how they work, but they’re supposed to be helpful with women who have immune issues that prevent implantation/cause miscarriage.

My RE is VERY conservative and is still hemming and hawing about this. I have volunteered to be his guinea pig as it is experimental, and I have nothing to lose at this point. The only risk is that I could have an allergic reaction to them, and that’s a pretty small risk.

The actual embryo transfer will be in mid to late June sometime. The last shot!

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My friend Kerry was recently featured with her family in the NYT. (Her blog about her IVF w/ ICSI, twin boys and NICU stay can be found here: ourstorkgotlost.com

The topic of the NYT article was on “The Gift of Life and its Price” It had to do with the high cost of twin+ pregnancies and how the number of premature births has increased 36% over the last 25 years. That increase is due at least in part to fertility treatments. 60% of twins are born prematurely.

My friend’s Kerry’s beautiful boys Max and Wes were born about 10 weeks premature at around 3lbs and had 43 day and 51 day NICU stays at a cost of $1.2 million.

Kerry and Jeff, like Ben and I, have ONE SHOT for IVF. They spent 23% of their annual income trying to have a baby, so when the choice was given to them “put back one or two high quality blasts” they of COURSE chose 2 to maximize their shots of pregnancy.

The thing is most medical organizations, including the CDC and Society for Assisted Reproductive Technology (SART) suggest putting back only one embryo because of the increased risk of multiple pregnancies.

Yet most insurance companies don’t cover IVF. It’s a “luxury” to have a child, I guess. Well guess what. I have a child and am still willing to pay about $25,000 to have a second. We did put back one blast, but only because we had high qualities blasts to freeze. When we do our FET (it costs another $5000 or so), we’ll put back two. If I had my options, I’d put back one, one, one, one, one, one, one. That whole procedure would cost $60,000 for the IVF and all resulting frozen transfers. If that whole process were covered 2x (and most people are lucky to have 1-2 blasts make it to freeze), I bet the number of twin pregnancies due to IVF would go WAY down.

Unfortunately, so much of this is about cost.

My laprascopic surgery to remove endometriosos (a covered expense) cost more than $30,000. I got it in the hopes it would improve my chances to conceive. The pain from it can also be treated with birth control pills (though not when TTC, obviously.) My insurance company could have paid for 1 IVF for less than the cost of the surgery.

Too bad nothing about our medical care system makes sense.

This is the March of Dimes Prematurity Awareness month. IMO, the quickest way to reduce premature births is to do all we can do to reduce multiples. My first baby was in the NICU for 4 days. It was 4 days of hell, and I don’t know how those families survive extended NICU stays, let alone with young kids at home. IMO, the best way to ease that suffering is to cover the MUCH cheaper cost of IF. Don’t even get me started on what that would do to the mental health costs of IF patients! To me it’s all dollars and sense.

You can give money to the March of Dimes to help premature babies here:
https://www.marchofdimes.com/howtohelp/donate_online.asp

You can take action with the advice of RESOLVE’s (national infertility association) tips to improving IF coverage here (call your representatives and senators, write to your company’s HR department demanding reasonable IF coverage, etc):
http://www.resolve.org/site/PageServer?pagename=ta_home

You can see the letter I wrote to our insurance company here:
https://seekingsibling.wordpress.com/2009/07/27/why-i-think-insurance-should-cover-infertility/

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For my sinuses, the ENT had me start probiotics (2Tbs of liquid 1x a day), and Grapefruit Seed Extract (8 drops that I put in my POM juice so I can stomach it. It tastes FOUL). Got a new prenatal (I’ve polished off about 4 huge bottles since TTC), still taking the fish oil I was on. Started taking 1 Baby Aspirin a day again, per the RE. Started Folguard for the MTHFR (2x a day). Taking mucinex again for CM. Taking Wheatgrass juice in the am, just because I figure it can’t hurt (anecdotal evidence says it helps with egg quality).

That’s like 7 things a day to remember, and it’s all probably for NOTHING. 8 once I O and start progesterone again (2 suppositories a day shoved up my ho-ha).

But I feel like I have to give it a shot, just in case my body decides to get spontaneously pregnant again.

I do feel pretty good, I guess. Better than when my stomach and butt were a bruised mess from injections! Somewhere around here I have a picture of that…

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That must be it, right? My body couldn’t be THIS cruel to just keep fucking with me, could it?

The normal woman whose period is late (and I don’t mean normal late, I mean her luteal phase (LP-time between ovulation and AF-generally standard from person to person, unlike ovulation, which can vary) is significantly longer than normal) would assume she’s pregnant and either be freaked out or excited by that.

I just assume my body is messing with my head.

My normal LP is 10 days. My progesterone came back at 9.5 the one time they actually measured it, so low-ish. I’m now 13 DPO (guessing a little, but a pretty educated guess since I’ve charted for like 3 years, but this is just based on CM) with no sign of AF.

I KNEW there was no reason to test. Why would my body give me a nice surprise when it couldn’t even deal with the perfect grade 5AA blast we put back into a perfectly prepared environment?

Yup, BFN.

I suppose I’ll test again before the CT scan I already rescheduled once (it was supposed to be 2 days ago) if it doesn’t show up by Thursday.

Crappy body. I never understood cutting, but I’m starting to get it… I really really really hate my body for betraying me like this.

Oh, and this is totally unrelated, but I noticed at 4pm this afternoon that I missed a giant strip of hair on the front of my leg when I was shaving this morning…which wouldn’t have been as big of a deal, except that I hadn’t shaved in a good 2 weeks before today and was wearing shorts. PLUS, I found one hair behind my knee that must be six inches long that has missed the razor for about 10 years, it seems.

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Endometriosis sucks

At least I can take Advil again. That’s all.

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ANOTHER blog?

I know you’re thinking there are enough blogs out there to choke a million innocent internet hosts (or something, I’m not real up to speed on how all this technological stuff happens.) ¬†I‚Äôve therefore decided I‚Äôd start with a little raison d‚Äô√™tre to explain why I felt the need to start yet ANOTHER blog.

If you’ve talked to me in the last, oh, year or so, you know that I’ve been more than a little obsessed with getting pregnant. ¬†Some people do this on accident. ¬†Some do it the first time they “try.” ¬†Some are content to just let things happen. ¬†I’m none of these people.

With O, I started charting about 6 months before our wedding and we started actively “trying” (i.e. timing things perfectly) about 3 months before our July wedding. ¬†It took us 5 cycles (including an early miscarriage) to get pregnant with O. ¬†Not bad, huh? ¬†I was ¬†nonetheless a fricking nut job by the time I got pregnant. ¬†I think I knew too much and was drowning in details by then.

I’m a teacher, and there are certain times of the year that are optimal to have a baby. July is not it, but that worked out ok because we figured out a way for me to stay at home for a year with our son O. ¬†This “teaching timing” thing means I’ve always been a little uptight about getting pregnant. ¬†I get a great maternity leave if the timing works out and a really really crappy one if it doesn’t. ¬†5 months of trying felt like a LONG time. ¬†I remember talking to Ben about a woman on a chat board I frequent who got pregnant after trying for 19 cycles. ¬†19 cycles. Holy crap, how did they survive it? ¬†The ups and downs. ¬†The wondering. ¬†Interpreting every twinge in her body to determine whether it could indicate the arrival of her period, ovulation, implantation or maybe even <gasp> PREGNANCY!

Oh, how na√Įve¬†I was.

We’re now starting cycle #16 trying for Baby #2. ¬†We’ve been talking about this hypothetical baby for a good year or two before that. ¬†Bought a house with enough room for the baby. ¬†Thought about how my job would work with #2. ¬†I even scouted out rooms at school where I could pump.

So obviously something’s not working. ¬†Now before you tell me that if I weren’t so uptight, I’d probably get pregnant, zip it. It doesn’t work that way. Me being “uptight” means we didn’t waste any of those 16 months with bad timing. ¬†If you were going to suggest a nice vacation because you know this woman sister’s cousin’s brother’s wife got pregnant on vacation after they’d given up trying, save your breath. ¬†Since we started trying, we’ve been on 3 vacations. Once to Hawaii, and once to Vegas even. ¬†If you’re wondering why we don’t just adopt, I’m wondering why you don’t give me $15,000 (ish) dollars to facilitate that process.

It’s just not that easy, for a lot of reasons. ¬†Even though my first pregnancy was not the smoothest ever, I LOVED being pregnant. ¬†I’ve always dreamt of being pregnant and feeling a baby moving inside of you is something amazing you only get to do for a short period of time. ¬†I don’t want to give up that amazing experience yet. ¬†I’m also an only child and always wanted to have at least two children (more on that later.)

So what’s the problem? ¬†I wish I knew. I wish my RE (Reproductive Endocrinologist–i.e., fertility doctor) knew. ¬†Here’s what we do know.

I do have endometriosis.  This means the lining of the uterus has somehow ended up in my abdominal cavity and is growing, bleeding, causing pain and scarring.  When I get my period every month, I either spend 2 days in bed with a heating pad or take a Vicodin (no ibuprofen when trying to get pregnant!) to deal with the pain.  Too bad Vicodin makes me goofy!

I had laprascopic surgery in February to remove endometrial adhesions. ¬†Here’s why “just relaxing” wasn’t going to help much. ¬†My left ovary was no where near the fallopian tube. ¬†It was adhered to the back of my uterus. (explaining the pain I was in! Those ligaments were all stretched and twisted in ways they shouldn’t have been.) ¬†The GYN freed it up, but can’t guarantee it won’t “re-stick.” ¬†My right fallopian tube was kinked with scar tissue and adhesions, making it dificult or impossible for it to function, but he fixed that too.

That was February. ¬†We’ve done 2 IUIs (artificial inseminations) and tried on our own for a few months since then. ¬†We lined up all the many elements necessary to get pregnant, and still no baby. ¬†Before the surgery, we had done n 3rd IUI and a few other treatments too, so we’ve laid out quite a bit of money to make this happen already, and it’s feeling like we’re flushing it down my tubes. ¬†Each IUI has around a 10% chance of success and costs somewhere around $600-1000 (or more). ¬†Those are pretty bad odds!

After much deliberation (more on that later too!), we’re moving forward. ¬†The RE told us that success rates with IUIs climb for the first 3 months but then level off. ¬†Because I have polycystic ovaries (each of my ovaries make a TON of follicles ready and willing to develop into an egg every month), there are a bunch of treatments he won’t do on me for fear of HOM (high order multiples–I don’t want to be the Octomom, or Cathy and Ben + 8). ¬†That means our only choice is to keep doing what we’ve been doing or move on.

In order to maximize our chances, we’re doing IVF (in vitro fertilization.) ¬†It’s a much bigger investment (some where around $10,000-15,000 out of pocket, plus $5000 out of my medical flex spending plan), but the success rates are MUCH higher (at our clinic, 55.6% of embryo retrievals result in a live birth.) ¬†If we’re willing to go that far eventually, it was starting to feel like it made better sense to do it sooner rather than wasting more money on futile treatments.

So that’s the story, but it doesn’t explain why I started a blog. ¬†I figure there are 3 good reasons for me to blog about this.

#1, there are a million blogs about infertility out there, but not many about secondary infertility (people having fertility problems while trying for a second, third, etc baby.) ¬†In fact, there’s not much support for secondary infertility at all. ¬†I’m either selfish for wanting another baby or neglectful because I don’t love my son enough. ¬†Oh, and I’m crazy for spending the money to make it happen.

#2, people are going to be asking for updates, I assume, and it’s going to start getting old talking about it and explaining the process. ¬†Having a blog might help with that.

#3, therapy. ¬†This is one of the harder things I’ve had to deal with. ¬†It has taxed me financially, emotionally, physically and cosmically more than I can probably hope to express here. ¬†I need to get it out and am hoping someone else can find some solace here.

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