Foregone conclusion: I'm Not Normal

In reading through this, you might be getting a picture that things aren't normal for me.

I've had three miscarriages: not normal.
I have an AMH of .406 at age 36: not normal.
My SIS and HSG results showed something really off in my uterus: not normal.
My uterine lining was <5 mm the day before ovulation: not normal.

In light of this, the results of my karyotyping, which arrived yesterday, should come as no surprise: not normal.

Specifically, I have a balanced pericentric inversion of chromosome 9. The break points are at p11q13. Apparently this is just about the most common chromosomal error in the general population. Oh boy. I guess that means I'm normally abnormal?

What does this mean? Well, going back to biology class, you might recall meosis, the process whereby gametes are created. In my case, during meosis, the chromosome 9 that became mine broke at the centromere, and then again in each arm. Instead of rejoining correctly, it flipped itself. So if " | " is the centromere, the chromosome should have been: A B C D E | F G H. Instead, mine is:  A B C F | E D G H.

On the upside, this is the best of all genetic errors to have. If it was a translocation, we'd only have a 33% shot of a normal or carrier offspring from each oocyte. Pericentric inversions aren't nearly as bad, in fact the majority of people conceive successfully. Alas, they increase the chances of unbalanced rearrangements during meosis, which in turn increase the chances of miscarriage and other problems. Depending on which study you read, the risk of miscarriage increases by anywhere from 1 to 30%. No one bothers with stats on birth defects, but those are higher, too.

So, I wait for my doctor's opinion, but I expect to proceed with injections starting tomorrow. Wish me and my broken genome luck?

First Time for Everything

Due to my short luteal phase, I've been taking crinone this cycle. It can delay your period, so my OB instructed me to take a hpt at 14 dpo, and if negative, stop the crinone. Thus, I tested this weekend.

I know many women who struggle with infertility, and who talk about how much it sucks to see only one pink line, time and time again. Then they talk about how different it is to finally see two lines on a pregnancy test. I love hearing about that.

In my case, I'm a little bit backward. In the last eight months, I've never gotten a pregnancy test with only one line. I've peed on several dozen tests, mostly Wondfos, and each time I've seen two lines. Sometimes the lines have been faint. Sometimes, they've been present, even when I didn't want them, like in the weeks after my first loss and the d&c that followed. But wanted or not, I've always seen two lines on the test. Until this weekend. This weekend there was only one line, and it was weird. I was 100% sure I wasn't pregnant, since I had none of the symptoms from the last three pregnancies, but it was still weird only seeing one line.

AF arrived Monday, right on time. TodayI go in for my baseline ultrasound, doppler to check for bloodflow, and initial bloodwork. If all goes well, I start medications in another day. I'm praying that the next time I test, I once again see two lines.

I'll Take Medical Malpractice for $500, Alex!

I'm getting frustrated with my clinic. This is a year-old satellite office of one of the best fertility centers in the US. CCRM has phenomenal success rates, and they deal with some of the most challenging cases. At least, that's true of the Colorado location. 

I am using the Minnesota location, which is too new to have published success rates. So far, I've been impressed by the people, but increasingly horrified by the practices. What do I mean by that? Well, let's talk about went wrong last week alone:

• The wrong medications were ordered for me. I should be taking Follistim, progesterone and estrogen. What was actually ordered? Those things, plus hcg, depot lupron, cetrotide, and menopur. Those are IVF drugs. I am not yet to the point of IVF.
• No surprise here, when the wrong medications were ordered, the wrong treatment code was used with them. This caused my insurance to reject the request. I'm now fighting to have my actual drugs be covered, and there's a good chance I won't win the fight before I have to order them. 
• The big one. DH went in for a SA. He checked in, presented his driver's license, and had his identity confirmed. Good, right? Then the nurse asked him to look at the paper and confirm his wife's name. The woman on the paperwork? Definitely NOT ME. First name was completely different. Think, "Jane" was the name on the paper, while my name is "Sandra" (totally not the real names). Last name shared the first three letters, and then was completely different.

Makes me wonder: were the medications ordered for me really Jane's? Did she get my meds?

Now, look, maybe this will work out well for Jane. Maybe she'll get pregnant if she uses DH's sperm. Maybe I'll get pregnant if I go straight to IVF. But, hell, these kinds of mistakes, from a clinic that's supposed to be one of the best, they don't inspire confidence. They make me wonder if I should go out of state if we need IVF. They make me wonder if I should go somewhere else in-state now. 

To paint a complete picture, let me also share the positive experiences I've had: CCRM Minneapolis is responsive to my inquires. Dr. B, the sole RE there, clearly uses the most recent, evidence-based medicine in making decisions. She also seems to be interested in a challenge, which I appreciate, seeing as how I AM a challenge. Everyone is unfaillingly pleasant to work with. Unlike my insurance company, I never feel that there's a lack of competence - just a massive lack of communication and fact checking. 

Is There a Code for That?

So I'm expecting to start Follistim and Estrace next week. To give you an idea of the cost, according to Walgreen's specialty pharmacy, they'll bill my insurance $1,800 for 6 days of Follistim.

Anyhow, my insurance will cover Follistim if it's not being used for procedures related to IVF. So, IUI & related procedures = covered. IVF = self pay.

I am not doing IUI or IVF. I am taking drugs and having sex.  (As a relatively prudish straight-arrow, those are words I never expected I would type!)

The insurance company, because of the IVF limitation, will not authorize Follistim unless I can provide a procedure code. Because the procedure code tells them if it's for IVF or not. There's one big problem here: there is no procedure code for "have sex!"

I am stuck in this infinite loop. First, insurance assures me it will be covered, since I'm not doing IVF, so my doctor should submit an authorization request. As soon as my doctor submits the authorization request, insurance requires a procedure code. Then, insurance tells me there's no procedure code for sex, and I remind them that sex is not IVF, at which point they agree it should be covered.

GAH!

I've now wasted spent more than two hours on the phone with the various parties to this BS.

"Just relax and it will happen" - a phrase that is applicable to neither getting pregnant, nor getting insurance preauthorization.

Verdict is. . . .

There are times when I feel truly bad for medical professionals. They spend years, decades even, studying and training. They continue learning as they practice and complete CE. Still, the human body is an amazingly complex system, and not every human's complexities follow an expected pattern. That means there are times when the best explanation a medical professional can give is, "I don't know" or "It doesn't make sense."

So, what was the outcome of my follow up appointment? Well, the saline sono, taken in early May, and the HSG from last Friday both suggest a horrendous case of Asherman's syndrome. But both of those are imaging techniques that don't directly visualize the uterus. The hysteroscopy, with photos taken after the saline sono but before the HSG, shows a normal uterus. The surgical notes written by the doctor who performed it didn't indicate any evidence of Asherman's, or anything other than mild scarring. The actual pictures should be the gold standard, but they are completely inconsistent with the sono and HSG. So the verdict? "It doesn't make sense."

Where does that leave us? Well, we could keep doing tests. Maybe we'd start getting consistent results, maybe not. Either way, we've now done all the tests that can be done, so we'd have to start repeating things. Verdict: probably not enough incremental value to be worth the drawbacks. Alternately, we can go back to the original plan: an injectable cycle in July, with monitoring of lining and follicles. Verdict: This approach will should tell us how my lining responds, which is a critical part of the question. The risk is that it won't tell us if both tubes are open. We could spend the money and the time on the cycle, and ovulate on the left side, where we don't know if my tube is open.

Total cost of more testing versus an injectable cycle will probably be similar. If they run multiple tests, that would be more expensive. It all comes down to a question of what really matters? And what really matters is: can I grow a lining that will support an embryo? Going the injectable route should answer that, because if I do have severe Asherman's syndrome, I won't grow sufficient lining no matter what medications they throw at me. If my uterus is healthy enough to grow a lining, it probably means the HSG was flawed, and I'm not as worried about tubal patency.

So, we will try the old fashioned way this cycle. We'll pray for a healthy, fully implanted embryo out of that. If I do get a positive test, we'll monitor the hell out of it! I am not optimistic, since I've had continued spotting since the HSG, but hey, I'm not going to turn down the excuse to spend some quality time with DH. ;) If this cycle doesn't work out, I call C.CRM on Day 1 and go in for Day 2 or 3 labs and an ultrasound, and then we start drugs and see what happens.

How will it all work out? Well, I'll give the most common answer from my own profession, which also deals with human beings and their irregularities: "It depends!"

Before and After

So, I love me a good before & after picture. Home reno before and after? Yes! Haircut before and after? Check! Recipe ingredients before to beautiful meal after? Bring it on! Today's before and after might not be for everyone. Today's before is my uterus at the start of the operative hysteroscopy. The after is my uterus after the scar tissue was cleaned up. If you don't enjoy viewing pictures of people's internal organs, don't scroll down.


So, here's the before photo. It looks rather like a tunnel, no? To the left and right are the ostia, or the openings to the fallopian tubes. From what the doctor explained, some of the white patches are scar tissue. Overall, there isn't much white where it shouldn't be, which means there wasn't much scar tissue from the January d&c.

Now for the after photo. In this photo, you can see everything is smooth and pink. There's less scar tissue, and the pink suggests that my endometrium is healthy and should be capable of a pregnancy.

There are two layers of endometrium in a healthy uterus, a basal layer, which remains at all time, and a functional layer, which is shed monthly. We're pretty sure I have trouble with my functional layer not getting thick enough, or having the correct pattern, to support a pregnancy. However, based on these photos, which were taken May 23rd, there shouldn't be anything blocking my uterus. This is what makes Friday's HSG so inexplicable.

At this point, I'm praying for an answer that isn't the end of our journey, and I'm focusing on the after picture, because it looks like it should.

Cause or Effect?

Just over five years ago, shortly after I became unable to eat gluten, I had an incident. One afternoon I started having extreme bloating, and the kind of horrific gas that usually accompanies gluten-poisoning for me. By the early morning hours, I was in the bathroom, while my digestive system emptied itself in waves. Once again, that's what normally happens when I come into contact with gluten. That's why I religiously avoid it! Along side the normal symptoms was intense abdominal pain. It hurt to touch  my stomach. It hurt to put on clothes and have my seatbelt across me. Going over bumps hurt. That was something I'd never experienced before.

I went to the doctor the next morning. She was worried about my appendix, so she sent me for an MRI. The MRI showed such extreme swelling in my intestines that the "T" shape of my IUD, and the uterus containing it, was actually horizontal instead of vertical. My intestines had pushed my uterus out of the way with their swelling.

What caused that? Well, after the MRI, a different doctor, a DO, sat down with me and asked me what I did for a living. When I told him I was a manager, he held my hand, and while gently patting it, informed me that I had an intestinal blockage caused by too much stress and not enough fiber in my diet. Then he turned to my husband and told him to "take better care of her." Mind you, he never asked about my diet, or about my stress level. I guess he just assumed a woman manager must be stressed, eat crap, and need care from her male protector.

I saw a GI specialist shortly thereafter. He looked at my films, then asked me detailed questions about my diet (30 grams of fiber a day via beans, brown rice, almonds, and fruits & veggies - documented via months of My Fitness Pal logs) and my stress level (pretty low as I'd just gotten my dream job managing an awesome team of people doing work I loved). When he had the answers, he politely told me I was an idiot for eating week-old leftover rice. He thought I'd gotten food poisoning, which explained the swelling and pain.

To this day, I don't know which of them was right, but although my stress level has gone up at times, and my fiber intake has gone down, I've never again had the issue - and I've stopped eating brown rice!

The day before the HSG, I was feeling oddly bloated. I had assumed it was because I'd upped my intake of gluten-free oats, which I have trouble with. I'd made a mental note to change my breakfast meal plan next week. In the hours after the HSG, I moved from slightly bloated to massively bloated, and in substantial pain. I couldn't take a deep breath without pain. I couldn't stand up straight without pain. I spent hours in the bathroom early Saturday morning, alternating between the floor and the toilet, in agony. It was like the experience 5 years ago, only worse.

I'll ask my doctor when I see her, but I wonder if I had swelling in my digestive tract before the HSG? If my uterus had been extremely compressed due to unhappy intestines, might that have produced the never-before-seen disappearing uterus on the HSG? Alternately, it's possible the digestive symptoms could have been caused by stress or a reaction to the contrast. Ugh. No clear answers, just more unhappiness.