Friday, July 6, 2007

So who doesn't blog about their infertility?

Evidently, I haven't been. But that's all going to change today.

Here's the whole story - thus far:

My husband and I have been married for 4 years, and started
Trying to Conceive (TTC) in December 2005. I'd been off the pill for a few months at the advice of my (really awful) doctor. I had a few rather long cycles, and then they just stopped. Poof. Nothing. I can't say I was surprised. My cycles started getting inconsistent from the time I started college. I would get them every 2 weeks, and then not again for 4-6 months. I can't tell you how many pregnancy scares I had. Of course, they were completely unwarranted, because I never got pregnant, even accidentally. When I went on the pill I was like clockwork for 10 years, but I always had the suspicion that getting pregnant was going to take some work. That is the understatement of the year. Sure, I'll pop some clomid and pop out twins, right? No way.

When we first started TTC and my cycles vanished, I went to the "bad" gynecologist who doubles as an RE with her own practice. She diagnosed me correctly, with Polycystoic Ovarian Syndrome (PCOS), although she refused to treat me with Metformin, the usual and proven treatment for PCOS, stating that since I was "thin" and didn't have any other PCOS symptoms short of anovulation and cyctic ovaries, it was useless. She made me get an MRI, which of course showed nothing. Then she gave me clomid, with no cycle, and of course it didn't work. Nothing happened. I wasted four months with this women, waiting weeks for appointments and follow ups when she went out of town.

Finally, a newly pregnant friend told me to stop screwing around. She had PCOS and went to a reputable university clinic in NYC. She was like me, tall and thin with no other symptoms. So, I made an appt with her Reproductive Endocrinologist (RE) and finally started to get somewhere. He is a PCOS expert and understood that Metformin was the right treatment to try out, even if I wasn't a typical PCOS patient. Within several weeks I got Aunt Flow (AF), and started cycling on my own. I was even ovulating (the Clear Blue Easy Fertility Monitor showed me this much!) My husband (DH) and I started trying on our own. However after a couple of cycles I went back to my new RE and we discussed the options and agreed IVF was the way to go.


Starting the IVF Journey

Before starting, there are a battery of tests you need to go through. I had a (very painful) Saline Hysterogram which revealed a poplyp-free, normal and happy uterus. Yay! At least I got something right. We went through the required immunity testing, genetic testing and STD testing. All clear. We were ready to start.

So last summer, on my next cycle day 2, on my 32nd bday, I trekked into my clinic, meds all ordered and ready to inject. I was beyond excited. Had my blood drawn for Follicle Stimulating Hormone (FSH) and Estradiol (E2) (my FSH is always good, from 4-5), and had an ultrasound (u/s). Unfortunately, I had a cyst and we were unable to start. As soon as the RE left the room, I started to cry. I had waited about 9 months, gotten ready, and now this? Worst birthday ever!

I requested to be put on the pill. My natural metformin cycles were long (~35 days), and I wanted to make sure that the cyst was eliminated. I wanted to be sure, and I was scared to start - so we waited for 4 months. Of course I did a great deal of research and I thought that being on the pill for that long might improve my egg quality as well. Worth a shot anyway.

When I finally gathered up the nerve to start a new cycle, it was Jan 2007. Day 2 u/s - no cysts! Antral follicle count is great. FSH nice and low. Ready to start for real this time?

Injections are a funny thing. I went to the injections class twice, the second time with DH. He was really eager to be involved and insisted on doing all my shots for me. We started with 2 weeks of the lupron and learned a quick lesson: leg injections are bad. Maybe not for everyone, but for me. I bruised up so much it looked like I had been in an accident. The bruises took weeks to clear up. so, we stuck to the stomach. Mine is relatively flat, but you can still pinch enough to stick a small needle in! So we couldn't really rotate the injection site once the stims started.

Anyway, I got my requisite Lupron period, went in for an updated u/s and b/w, and everything looked good. Now to start the stims. My doctor, concerned with Ovarian Hyper Stimulation Syndrome (OHSS - something that commonly happens to tin PCOS-ers), put me on 150 mg of gonal-f with reduced lupron to keep from ovulating. We did the injections for four days and had another checkup. All was looking good. We kept going until day 12 of the stims. I had so many follicles from 16-24 that I lost count. My lining was good at 9. I was instructed to do the HCG trigger that Monday night and come back for retrieval on Wednesday morning.

The HCG trigger was nerve wracking. You need to mix stuff, and if you screw it up, you are literally completely screwed. We thought we screwed it up. Something happened where DH almost injected it into the air accidentally, by the way he was holding it. We were 30 minutes late from our scheduled injection time. Timing is everything for this shot! I was scared and sad and nervous. But, we went in at the scheduled time on Wednesday for retrieval. Wouldn't you know, but they were a little late taking us in so my fears were alleviated.

The egg retrieval (ER) procedure was terrifying to me for several reasons.

1. It was the first time I had ever been put under with anesthesia.
2. What if they don't get any eggs?!
3. This is really it. The true test. I am scared.

The anesthesiologist at the clinic university is un-be-liev-able. I never felt a thing. I was out, and then I was up and being wheeled into recovery. I wasn't even woozy. The nurses said I was the most alert person they have seen post-surgery.

I felt fine at first. The RE - medical director of the clinic - who did my ER- came by with the news:

28 actual eggs!

I said: "That's alot, right?"

He just smiled and said, "that's pretty good."

And I knew it was good, because the woman next to me had 9. Then the next woman to be wheeled out had 12. Ha! I had beat them all.

But 28 eggs has a price. Soon after the joyous news, the pain started. REALLY bad, intense cramping on the left side. My RE said they got most of the eggs from the left side. That was probably why. Well, it felt like I was kicked in the ovaries by Beckham. The anesthesiologist came by and injected me with something nice, which made the pain subside. For a short time.

OHSS is NOT fun
Recovery from ER was a long, painful process. I couldn't pee because everything was so sore. I thought that whatever stuff was inside would fall out. I don't even know what stuff. Whatever. It felt awful. I had some pretty bad symptoms: intense sweating, hearing problems, huge, swollen belly. About a week after ER I looked easily 6 months pregnant. I was going back and forth to the clinic for OHSS bloodwork and IV's. I missed 2 weeks of work because I couldn't really walk. I had moderate/severe OHSS. I was sipping gallons of gatorade and eating bags ofsalt & vinegar chips with the intention of getting the fluid to drain. After about a week I was getting up to pee about 10 times a night, and when I woke up I would look almost normal again, but then I would slowly bloat up again throughout the day. What a miserable experience! I cried. Alot. Swore I would never do an ER again. Well, we say lots of things we don't mean when we're in pain I guess. Because looking back on it now, it's minor really.

The only oasis in my pain was the news that out of my 28 eggs, 24 were mature and 22 fertilized! They were looking good, with no abnormalities. They were confident with so many embryos that we could push from 3-day to 5-day blasts.

5 days after ER I took my bloated, swollen body to the clinic for the transfer. We had lots of blasts and they selected the 2 best - 5AA - for transfer. It went smoothly and we were excited and fill with hope.

The next day we found out they decided to freeze 7 more excellent quality blasts. Luckily, this clinic has very high freezing standards for embryos and their thaw rate is about 90%, which is amazing. A little insurance for the future.

The Official 2WW

My OHSS continued, which I was told was a good sign, since it is aggravated by HCG (pregnancy hormone).

At 4DP5DT, I took my first, very early Home Pregnancy Test (HPT). It was positive (BFP!), but just slightly. And that could have been leftover from the trigger shot. But I just *felt* pregnant.

The roller coaster that ensued after this was not pretty. Subsequent tests all came back "mostly" negative (BFN). I was a disaster. How could this not have worked? I had 2 amazing blasts. What went wrong??

Interesting News
I didn't sleep the night before my beta. I cried alot. Went in the next morning to have the beta (beta HCG blood pregnancy test). It was a Friday.

The nurse called me at work.

Nurse: "I am afraid I don't have good news about your beta"

Me: "I know"

Nurse: "You do?"

Me: "Yes. I took HPTs so I expected this"

Nurse: "Well, it's 9. That's technically positive but we like to see over 50 at this point. Come in again on Monday so we can make sure it is back to 0 and you can start your FET".

Me: "Should I stop taking the progesterone?"

Nurse: "Yes. Wait." Pause "No. Keep taking it until we have Monday's results."

Me: Devastated. What is this? 9?! I would rather have 0 and be ready to start my Frozen cycle (FET) quickly.

The weekend was rough. I had a glass of wine. It didn't help. DH and I were sad and I cried. Constantly. I would say that I was inconsolable.

I write this from my point of view, but I know how hard this was on him.

I just wanted him to be a dad.

The Beta Chronicles
Much to everyone's surprise, beta #2 was positive. 32. Hmm.

Beta #3,4,5 etc kept doubling and getting higher and higher.

An RE called and said, it could have been a late implantation but as long as the numbers are doubling, this is a good sign. We scheduled an ultrasound.

So I was pregnant? Interesting. I certainly felt pregnant. Light headed, boobs so sore I couldn't even stand the thought of them touching anything. Nausea every morning. Exhausted at night.

Wow.

Pregnant!!

Me, DH and my mom all think it is a boy. Just have that feeling.

My u/s showed one sac, measuring on target. But he couldn't see a heatbeat yet (h/b) and said that was ok because it could be too early. I was to come back in a week.

Not so good news
I had a not so great feeling when the day before my next u/s, all my pregnancy symptoms just disappeared. No sore boobs, no more exhaustion. In fact, I had lots of energy. Uh oh.

The next morning u/s, the sac was measuring the same as before, still no heartbeat. This was bad news, I knew it before the RE even said anything. They started looking at this little chart to determine my due date, saying "hmm". And I just knew.

Me: "This is a bad sign right?"

RE: Comes over, puts her hand on mine. "Yes. I am so sorry"

Me: Cry cry cry.

RE tells me the options. I could wait to miscarry or have a D&C. Sometimes waiting can take a long time. Like weeks or more. UGH. Really?

So now I have to walk around with a embryo-less sack in my uterus?

The irony is my beta is sky high now. It didn't quite double but almost. Another RE calls and says to please come back in 2 days for another u/s, JUST to make sure.

I know it's the end, but I agree.

2 agonizing days pass and we go in for the next u/s. It's the medical director RE again. He explains what we already know. We could wait to miscarry, or we could have a D&C. The upside to option #2: he says he will do a pathology on the tissue. I tell him I want a D&C, I don't want to wait.

The end of my pregnancy
At 8w6d, I have the D&C. I'm in pain after. But, relieved it's over. The pain subsides after about an hour with another one of those amazing shots from the anesthesiologist.

That feeling of "relief" doesn't last.

I am moody, upset. Doing things like throwing furniture around. My hormones are insane. My beta drops from 14,000 at last check to 1,000. But that was the biggest drop.

It takes three months for my beta to drop. And it never quite gets to 0. Last official beta: 8.

Next Steps
Here's the thing about a slow dropping beta:

1. You can't do anything about it
2. You can't do anything about TTC again until it is below 5.

So every bloody week I get a beta. It's dropping sooooo slow.

Frustration, thy name is miscarriage.

We meet with my RE. He puts me back on the pill to try to get my cycles normal, since they can be wonky after a m/c. I bled for about 2 weeks after then it stopped.

I ask the RE for some additional tests. He doesn't think it's necessary yet, but agrees to re-test my thyroid function since I have these pesky antibodies. The TSH and other functions are perfectly normal, just these elevated antibodies, and they can contribute to a miscarriage. He puts me on a low dose of synthroid. I'll stay on this throughout the next cycle as well.

If that ever happens.

I ask for another SHG. He doesn't think it's necessary. Tells me my uterus is fine.

In the meantime, I make another appt with one of the top RE's in NYC at another university.
I wait 2 months for the appointment.

Pathology

The pathology report finally comes back. Normal XY karyotype. No genetic or chromosomal problems.

Am told the reason for the miscarriage is "a mystery".

This is exactly what you do NOT want to hear from a doctor. Ever.

A New Hope
DH and I go to see the new RE at university clinic #2. Wow. He is incredible. Completely on the same page as me. Tests me for all of the miscarriage and blood clotting b/w that I wanted. Suggests another SHG to make sure my uterus is in good condition to proceed with another cycle. My u/s looks good, but just in case. We schedule that for the following week.

The SHG is less painful then the first time.

But...

The RE found a polyp. It has to be removed with a hysteroscopy.

It went like this:

RE: "See this? That's a polyp or leftover tissue from the miscarriage. You'd have a hard time getting pregnant with something like that in your uterus. You could have gone through cycle after failed cycle with no pregnancies and we would have kept wondering why. I'm really glad we did this."

Me: Stunned silence. "Wow. Me too."

I can't believe I could have potentially wasted my 7 precious, precious frozen embies on a hostile uterus.

My hysteroscopy is scheduled for Wednesday 7/11. Next update then.

-liw







2 comments:

Denise said...

Wow, so well written. I know you've had a long road and I pray that there is a baby waiting at the end of it for you and DH. I'd love to know which practice you moved to, is it the other "C" practice? That is my guess. I'll continue to check in on you, I always look for your posts and think of you often! Good luck on Wednesday!
--Denise

Rebecca said...

Hey sweetie! Just wanted to pop in and see if you've been blogging again. How did everything go earlier this month? Sending lots of love and hugs your way...come check in with us soon!

---Rebecca