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.

Reeling

The HSG went catastrophically badly. To quote my RE, "I've never seen an image like that in my career." The radiologist was also mystified.

Instead of seeing a normal uterus and two fallopian tubes, or hell, even a unicornate uterus and one tube, there was the tiniest nodule of a uterus and one tube. In other words, the HSG showed fundamentally no open uterine cavity. No uterine cavity means no pregnancy.

I had a hysteroscopy a month ago - I have the images from it and the OB who did it said everything looked great. The hysteroscopy I had to remove my first IUD back in 2012 also ended with being told I had a good looking uterus. How the fuck did I go from there to an image with no uterine cavity and only one tube? The only HSG images even remotely similar to mine are ones with tremendously severe Asherman's - and my HSG showed even less of a uterine cavity than those.

If this isn't just a fuck up in the testing, which is what I'm praying for, then I'm scared we're at game over. I'll regroup with my RE next week if I can get an appointment. Meanwhile, I'm spending the weekend  trying to remember to breathe.

I will get through this. Somehow, I will get through this.

Not Gonna Be A Problem

I'm supposed to start taking antibiotics for the HSG tomorrow. I went to the pharmacy to get them today. The pharmacist gave me the use instructions (take two before the procedure, one each day after). Then before I left, she asked me "Oh, are you on oral birth control?"

I knew, immediately, that she was asking so she could warn me that antibiotics reduce the effectiveness of birth control. So I did the only thing I could: I laughed. I couldn't help it.

After that, I told her that no, I wasn't on bc, but even if I was, I'm pretty sure the efficacy wouldn't be lowered any for me by antibiotic use!

Some times you just have to laugh.

Wish me luck tomorrow?

What Goes Up, Must Come Down

Am I the only one whose moods can shift on a dime?

Yesterday, I felt really good after my appointment. I had a game plan. I trust this doctor, even when her advice conflicts with something I might be willing to try, because she refers to research. Everything seemed to be going well. I dropped DH at the airport after the RE appointment and then headed home to finish up work that needed to be sent out that day. Things were looking up.

Then I pulled onto my street to find the beautiful tree in our yard blocking half the street. Not going to lie, that sight took me back down. I love our house for the many trees here. The tree in the front was beautiful. Instead of getting my work done, I scrambled, at 4:30 pm, to find a tree service to come out and remove it.

While I was making calls, the next storm moved in, with thunder, lightning and heavy rain. Thus, it should not have surprised me to get a text from DH saying his flight might be cancelled. Half an hour later, he confirmed that he wasn't heading out that night, but would be on the 4:45 am flight the next morning. Thus, I drove through the flooding to bring him home, worked until 9:00, then slept for a few hours before getting up at 3:00 to take him back to the airport.

Now, tired, cranky, stuck working from home so I can meet the tree guys, and out $1,500 for the tree work, I'm feeling vastly more down. I'm grateful to be able to work from home and afford the cost, but it's still a bummer. I guess the up(side) is that I'll have fewer leaves to rake this fall?

We Have a Plan!

Today's consult with CCRM's local office went well. The doctor asked me to sum up what's going on in my own words, but also seemed to be well versed in my medical history. It was clear she had read all the files sent over, as she brought up things I didn't mention. She agreed with the goal of getting a pregnancy that lasts for 9 months, and didn't claim the issues to date were bad luck. While she agreed that my AMH means we should move with some speed, she also reminded me that it's really most relevant to IVF. Since we've gotten pregnant 3 times thus far, she told me, nicely, to stop worrying about it.

Unlike my OB, who said that uterine lining thickness only matters for IVF, Dr. B at CCRM expressed concern about my lining based on the sonohystogram in May. DH asked her to explain and she said that the lining helps to nourish the pregnancy during/around implantation, and therefore is important. Her target is 8mm. She noted that thin lining can occur when you have a short follicular phase. Alas, that isn't an explanation for me, since I typically have a 14-17 day follicular phase, which is normal. Increasing estrogen should help build the lining, and we know from my last labs that my estradiol is low.

Given all of this, her recommendation was twofold. First, proceed with additional testing of other potential factors to explain the losses. I'll cover the testing in a later post. Second, unless that testing identifies a cause, we'll treat the lining issue. Doing that will entail FSH injections and vaginal estrace to build lining, along with monitoring and timed intercourse. Post ovulation, I'll use progesterone for luteal phase support, although she doesn't think there was any issue with my progesterone level of 14 during the last chemical pregnancy. Testing is to be completed this cycle, monitoring and medication next cycle.

I also asked about lifestyle changes I could make. I was told no caffeine, no alcohol, keep eating fruits and veggies, keep exercising. Easy peasy - all of that I already do. I asked about DHEA due to my low AMH and she said she'd just read a meta analysis that found DHEA had no impact on DOR other than causing acne. She's taken it off her recommendations list. Note to self: she told me she'd give me her supplements list, but she didn't, so I need to follow up.

Overall I feel really good about this as an approach to see if we can address the miscarriages. I have a few follow up questions I'll need to ask the nurses, that didn't arise until after I looked at the written instructions, but I don't think that will be a huge problem.

From Type A to Type D-

I'm a few days off from my consult with the RE, and trying to understand why my recent test results are impacting me (mentally) the way they are. That low AMH number is really eating at me. AMH is a gauge of ovarian reserve. It gives you a ballpark idea of how long you have until perimenopause. If you need IVF, it also predicts how your ovaries will respond to stimulation. A few studies have shown that independent of these things, low AMH also correlates with lower live birth rates, but the correlation is relatively small and hasn't been consistently reported.

All it takes to get pregnant is a single egg and I've proven, three times now, that I ovulate and produce eggs. So why does my low AMH bother me?

I can come up with two reasons. Number one is that I just wanted some tiny piece of good news amidst the shit show that is this process. I really wanted to be able to say 'cool, I don't have to worry about that!' or 'groovy - I'm normal in at least one respect.' Instead, I'm so far off normal that I just have to pray we don't need IVF, because my ovaries are not likely to respond well.

On reflection, reason number two is pretty embarrassing. You see, if you haven't noticed from earlier posts, I've been an overachiever for most of my life. I'm a Type A personality that's gradually relaxed into a Type A-. I graduated magna cum laude. I went to a top PhD program in my field. I moved up the career ladder quickly. When I decided to run for the first time, I set my sights on a half marathon, and completed it. My first organized bike ride was a century (100 miles). I screwed my left knee up so badly during the century that I couldn't put pressure on it after mile 70. But I don't like to fail, so I rode the last 30 miles only my right leg. Like I said, I achieve.

I achieve, but my ovaries don't. My ovaries apparently missed out on the overachieving message. Despite the fact that I went 15 years without periods, and therefore spent 15 years not drawing down my ovarian like a normal woman, I am still running out of eggs. In other words, my ovaries are underachieving. As much as I'd like to say that I don't care, that the only thing that matters is getting one good egg, apparently that isn't true. Given the mild desire to hyperventilate that appears whenever I think about my test results, I must care a lot.

We'll see what the RE says. My numbers are slightly mysterious. AMH is low, but so is estradiol, and FSH is normal for my age. That's an unusual combination. Usually low AMH correlates with high FSH. In cases where FSH is not high, it's often suppressed due to high estradiol. Having both low estradiol and normal FSH, along with low AMH appears to be atypical. Maybe there will be some logical explanation and I'll feel better. Maybe not. Here's hoping I can elicit a bit more Type A out of the old ovaries!

Reminder to My Future Self

One of the hard parts about RPL, or probably any other not-terribly-common-but-emotionally-devastating experience, is the feeling of being alone. The feeling that no one understands what you’re going through. When well-meaning loved-ones say things like “it’ll be ok, you can always adopt” or “if you have to go through a few more miscarriages to get a good egg, so what?” or “everything happens for a reason,” it becomes extremely clear how little other people understand.

FYI, if you’re reading this blog, I want you to pinky swear, right now, that you’ll never utter any of words in quotes above to someone going through IF or RPL. If a reason exists to explain three miscarriages, $3,000 in hospital bills, and enough emotional pain that I’ve cried more in the last six months than in my entire life, it's a shitty one. If you smash your thumb with a hammer, do you tell yourself, "it happened for a reason?" No. You say a few unprintable words and feel a lot of pain. Even if it DID happen for a reason, is pointing that out in the midst of the swearing and the pain helpful? No.  

In the lonely space, I’ve looked for others who can help me feel less alone. They’re out there. I wish they weren’t. I wish no one else had been through this, but even though we’re only the 1%, 1% is still a lot of couples with an unbearable number of losses. I respect every one of those ladies, I grieve for them, and I thank them for sharing so that I don’t feel so alone. I’m also trying to learn from them.

One thing I’ve noticed is how bitter some RPL survivors are. I understand it. Hearing pregnancy announcements, seeing others have what you are desperately trying for, realizing that what will cost you thousands of dollars and countless heartache comes free to women who don’t want it . . . all of that is really hard. I completely understand how those experiences breed bitterness. Every woman has the right to feel whatever she feels.

Here’s my hope for myself, though: I hope I can avoid the bitterness. Is this shit unfair? Yes! Is it awful? Yes! Has it become a huge part of my life? Unfortunately, yes. But does it eclipse all the other wonderful things in my life? I hope not.

I grew up with parents and grandparents who loved me. I have an incredible husband. I have a career that I get great satisfaction from. I get paid well. I have friends who put up with me and make me laugh. I’m able to be physically active every day. I live in a beautiful place. Even if I never get to see a heartbeat on an ultrasound, I am so fucking lucky. 

I have never taken that luck for granted. I hope I never will. I hope that in those moments when the voice of bitterness kicks in, I can remember just how good things are. I’m here, in this life. I'm not a Yazidi girl being held by ISIS in Iraq, not an expectant mother with Zika in Venezuela, not any of the other horrifyingly unfair situations others are in. When it comes to unfairness, when I look at the rest of the world, I can't claim that I got the short end of the unfairness stick.  

So I'm posting this today. Seven months, three losses, two surgeries, one DOR diagnosis, and thousands of dollars into this journey, I'm posting this. I'm posting it to remind my future self. Here's hoping she reads this. 

DOH! DOR

On Thursday, I learned that going to the fertility specialist at your OB's office is like going to the cosmetic surgeon at your dentist's office. He may know more about cosmetic surgery than the other dentists, but he sure isn't an expert. In this case, the OB had never heard of AMH, per his own words, not my assumption. He also claimed that endometrial thickness and pattern had no implications for pregnancy/miscarriage.

I passed him a 2015 journal article whose abstract noted sustained pregnancy is extremely rare with lining <6mm. He got flustered, insisted it wasn't really an issue, and couldn't provide any data to support that.

Anyhow, based on the numbers, my ovaries are in their mid to late 40's. AMH is 0.4, FSH is 9.5, E2 was 18. Not good. We're moving on to talk to an actual miscarriage and fertility specialist. I've scheduled an appointment with CCRM's local branch in about two weeks.

Oh yeah, the best part of the doctor visit? He told us the miscarriages were just really bad luck and that we should start trying again. He said I should ovulate soon, and I told him I had already, three days ago. He asked "did you try?" I replied, "You told us we had to wait two weeks after the hysteroscopy, and that isn't until NEXT Monday, so no, we didn't try." At that point he got upset, raised his voice, and told us to go home and try immediately. Seriously, dude, my temp's been up for 3 days. The egg ship has sailed, no matter how much you yell at me for following your bloody instructions!

Moral of the story: go to a specialist for specialist advice.