Confession

Confession time. I went silent or mostly silent after my friend told me that sometimes things are better kept to yourself and low-key until after the results are known. I decided she might be right. I didn’t mention it on my blog, or in any of the IVF message boards I belong to, or even the one I created. I didn’t tell my friends, I completely cut myself off. Or well, I almost did.

Friday August 10th I had a transfer of my lesser graded embryo, it was unfrozen Thursday evening, a small hole was made in the zona, and it hatched and expanded fully upgrading itself to a 6AA quality embryo. It was growing so quickly that they called me and asked me to come in early for transfer. According to my embryologist, ” it was ready to implant now!”

The transfer went smoothly, and I decided that this time:

1. I wouldn’t test before hand to find out the results. *this failed miserably*
2. I would actually take it easy during my 9 day wait, actually 10 because my 9th day was on Sunday the 19th and they are closed on Sundays.

As promised my husband refused to help me with the progesterone in oil shot. Which was mostly easy to do and I very much prefer over any of the vaginal suppositories. Until the night when I hit a vein. My bathroom looked like a crime scene, blood all over the floor, all over me all over everything. Yes my butt cheeks are bruised and sore. But I will take that over the suppositories any day. I’ve tried both kinds and for different reasons they are both equally disgusting.

I was so happy to have a rest from the Clomid, so happy to be doing something different, something that felt hopeful. I can’t begin to tell you how much relief I felt at not having to deal with an egg retrieval and just focusing on something entirely different.  I felt so relaxed for a few days. By day 2 I felt some cramping mostly on the right side, by day 3 I had implantation bleeding, which also left me happy and hopeful. Day 4 the cramps turned into pinching and continued for the next few days. By day 6 I was anxious, and by day 7 when most people begin to get positives albeit faint ones, I tested. It was negative. And devastating. I’d had so many symptoms, heartburn, gassy, sore boobs, constant “something is happening in there” feelings.

I kind of melted down at the BFN, but on Day 8 at 4:30am I got up again and tested again. Negative. Day 9 (today) negative.

I suppose that there is a snowball’s chance in hell that the beta will turn out positive, however if it is positive and the number is really low, as in too low for an HPT to detect at this point, chances are it will fail. If there is no sign of HCG in my blood tomorrow, then I was never pregnant and all these symptoms were in my head. If there is some trace of HCG in my blood tomorrow, but not enough to declare a pregnancy then what it means is the embryo probably implanted, and then died. Which indicates a chromosomal abnormality. The logical part of my brain knows that this is ok. Its better to end sooner than later. But the part of me that has had 9 egg retrievals with so little success, and been through so much over the last 10 months is sad.

My gut feeling is that it was a chemical pregnancy and I will soon be experiencing a very early miscarriage. Tomorrow I will know. If I am right, then I need it to be over and to move forward.

I guess if I had to pick a silver lining, then Id say, even though I’ve been on enough progesterone and estrogen to choke a horse and am bloated like a balloon, I’ve lost 7 pounds in the last 5 days.

I don’t have enough distance from it yet to be philosophical, hopefully it wont take me too long to get there.

Asshat

CD12 Monitoring Appointment, Cycle 8

I was up at the crack of dawn this morning showering so I could go to acupuncture before this appointment. I showed up early with raspberry preserves for everyone, both at the acupuncture office and for my RE’s office.

Im sitting at the clinic using their computers to write this post. After 4 days off Clomid and on Estrace my numbers are better, I’m not sure they are good enough but there is definite improvement and this cycle may not be lost.

E2 149.8, FSH is 23.2, LH is 13.9. 1 follicle on the right side measuring 9.4.

The E2 is closer to where it should be, my FHS is more than 10 points lower so that’s a big improvement in 4 days, ideally though it’s not quite low enough, in my non professional, unmedically trained opinion. Because my FSH has been so high, my LH is also artificially elevated. So I’m waiting now. To see what happens next.

The plus side of this is for the first time since last Monday, I’m pretty calm. We also get to see my little Peanutgirl today so that’s a very happy thing. I’ve missed her a lot since she’s been in Hong Kong for the last 2 weeks. It feels like forever.

We will do some more work in the yard, Husband is building some kind of a fountain so I cant wait to see how that turns out. Our Neighborhood 4th of July block party is tonight. They have a fireworks show, a kids bike parade, a live band, dancing, face painting, pony rides the whole place comes out for it.

Good things. Things to look forward to and be thankful for.

Sorry I have been an asshat this week. Seriously. I’m sorry. My approach was abrasive.

Just spoke to the Dr. He says continue Estrace Monitor again on July 3rd.

My RE is going to some big IVF convention in Turkey for 3 days, and will be back on July 5th. He expects that if I get a retrieval it will be that day. When he was in China last month, I’m pretty sure my retrieval was also his first day back. I have no idea when this man sleeps. Seriously.

As an aside for everyone who comments on my controversy post, thank you for your input your opinions your thoughts support and even though I was abrasive in my approach, your kindness. I really enjoy being part of this community, even though it’s a club no one really wants to belong to. I’ve met some of the brightest most talented writers, kindest women and most genuine people even virtually than I ever expected.

I hope you all do something fun that’s NOT fertility related this weekend!

Faith

CD 8 Update

E2 was 40.9 still way too low. FSH was 34.1, way too high for any follicles to grow, LH 15.2 also not good, because it means I’m nearing my LH surge so I will soon ovulate whatever is in there. Or not. I don’t know what happens to immature eggs when you ovulate.

1 follicle now on the right side, 4.5mm the 2 on my left side have disappeared.

Its official, this month is even worse than last months cycle. I’ve been told to stop Clomid, start Estrace, and to monitor again on Day 12. Which is Saturday.

A high FSH for someone cycling as long as me is anything between 20 and 30, my lowest on day 8 was 7, the highest is 34 which was today. If your E2 is too low, and your FSH is too high, no follicles will grow.

I’ve tried to keep a good attitude today, tried to keep my chin up, because after this appointment I had a job interview for almost 3 hours.

I’m home now, it’s settling in and I’m tired, and sad. I know that things can still turn around but as usual, I lack faith. Sometimes I think lacking faith is a character flaw, that it makes me less of a person. But yeah I said it. I still and always really struggle with faith.

Dr Yelian said not to get too upset about it, but he is an eternal optimist. Something I love about him, but don’t have faith in. Because on some level I don’t believe his optimism applies to me. Where does one get faith? I even have a bracelet with that word on it, to remind me, but Id really like to know where faith comes from and where I can get some more.

So this months “new” thing is a new drug, another hormone something else to make me moody and crazy and weepy. Awesome. I’m looking forward to it.

 

 

Strange

CD20, Egg Retrieval #7

Today is my youngest brothers 42nd birthday. He has three kids, twin sons and a daughter all conceived naturally. His kids are amazing and beautiful, but he doesn’t speak to me so I don’t see them much. I miss his kids though, they are really special kids.

I’ve been awake since 4:30. I didn’t do my regular OCD superstitious routine before a retrieval because I don’t have a lot of faith in this months cycle. I’ve drunk a lot of water, but no pedicure, no shower last night, I will take one this morning. No visualizations for me this month. Maybe next time if things start ok. No food since Thursday in the afternoon I think. That’s going to piss off my acupuncturist. Sorry Dr P. I just haven’t been able to force anything down.

A lot of back and forth about if I wanted to let this cycle pass with no retrieval. What I choose was to have it. The reason is, if it’s a cyst, I want it out of me. I appreciate everyone’s hope so much. But the science shows that my LH has been elevated for too long. Which means that if the egg is aspirated and is still an egg, that it will be so degenerated it wont matter. If I don’t get it aspirated it may become a cyst. Where there are cysts, no good follicle or egg will ever grow.

This cycle was a long and strange one. It started as ideal, and quickly went downhill. Whatever is in there isn’t good. It’s too slow-growing, too much struggle to get my E2 higher, too much struggle to grow the follicle. P4 elevated for too long, LH elevated for too long. Even from Thursday’s monitoring my E2 was too low by over 100 points, and the follicle was barely large enough to aspirate as a mature egg.

To be clear, I dont cry over eggs or follicles. I cry over lost opportunities, that these cycles are stacking up behind me like firewood and not much good is coming from them.

I’ve listened to a lot of Bluegrass music which according to my husband is incredibly sad. Sadder than traditional Chinese music. Traditional Chinese music reminds me of Irish women keening at a funeral, so we’ve had lots of happy in our house lately. This particular CD makes me want to go running in complete darkness, the music is moody and haunting. Which is sort of funny really, because I hate running. I only run when chased.

I am impatient with myself to snap out of this dark mood, to move forward and stop thinking about what is past. In a little over 3 hours this will be over, and I will move on. I will focus on trying to stop looking back at these bad cycles and try to make an intention for ones coming.

Thanks to everyone that commented and said that they hoped for me. I appreciate it, its nice to know that even though I can’t hope for myself this month, someone is willing to step in and fill the breach. Thank you.

Circus School: Luteal Phase Follicle Edition

I am a Geek, a Nerd, a Dork. I want to know statistics, algorithms, percentages. I want to know whats happening to me, to understand the language.

Dr Yelian has commented on it before, saying that most patients don’t want to know, or don’t care, they just do what the Dr says. I say, this is something I am invested in being successful with so, I want to understand the language. That means breaking it down into terms the normal person can understand.

While I am sure many of you would disagree, I am the normal person in this scenario.

What is happening to me this month is an anomaly, because I get every weird scenario/cycle possible. So much for normal. Welcome to my life.

In the Mini-IVF community, the Luteal Phase Follicle is mythical. Everyone has heard of them, knows someone who had one, but no one really understands them, what they mean, why they happen or what their quality or outcomes are.

They occur, but not often and not usually with very good results. (this information is subject to change because Dr Yelian vehemently disagreed with me when I saw him on Monday but didn’t have time to go into specifics) I have asked him about these before, and he was ambivalent about them. Not sure if there was any real value to them, however he just returned from a conference in China and says he has some data that has changed his mind. I will be asking for that data the next time I sit down with him. Because I need to know things.

To review: I am doing Mini IVF, which is IVF with fewer medications, so you don’t get lots of eggs each cycle you may get 1 to 8 depending on your age, secondary fertility issues, autoimmune issues, and whether you have Diminished Ovarian Reserve (DOR), or Primary Ovarian Failure (POF) PCOS, Cysts or Endometriosis.  I have had as many as 5 and as few as 1. It varies from month to month.

I have diminished ovarian reserve, low AMH and I am of advanced maternal age.

Today, I am CD 17, have one follicle that Monday, before it was assaulted with Menopur and Clomid measured 9.8mm. Anything after CD 14 is considered to be “Luteal Phase” or post ovulation.

During an IVF cycle, the dr retrieves an egg right before the woman ovulates, while the mature follicle is still in the ovary. They want the follicle to be as mature as possible but don’t want it to have ruptured from the ovary. In a normal natural cycle (non medicated), this is the only egg that would be retrieved, and so you begin the 2ww wait for the next menstrual cycle and follicular phase to begin. However, sometimes there will be other follicles in the ovaries that may not have been mature enough to rupture at the time of ovulation, but are still viable. With monitoring and sometimes stimulation, the Dr is able to retrieve another mature follicle that has developed even after the patient has entered the Luteal Phase.

The statistics and data on the success rates of Luteal Phase Follicles is murky at best. Generally the egg quality is thought to be poorer by 10 to 20%. I know that there have been LPF pregnancies however again, the data is not easily found. If I could translate the Kato Ladies Clinic white papers and general information about it into English I could make a fortune. The Japanese don’t believe that American women want to know this information. So they see no need to translate these documents. Which harkens back to what Dr Yelian said about some patients not wanting to know.

I don’t understand that. As in, I can not wrap my head around the idea of not wanting to know. I want to know EVERYTHING. Not to second guess the Dr, but to be informed about whats happening to me, why, and if there is anything I can do to change it, stack the odds in my favor or improve my outcomes. Who the hell puts themselves through this without wanting to know?

Anyway. There is one scenario under which my chances might be improved this time. My cycles started getting bizarre in March. Why? I’m not sure, possibly over suppression, however it created a sync issue between my follicular stage and my menstrual cycle which I’ve been combating ever since.

Last cycle from start of my menses, through the aspiration of the cysts, the 10 days of Provera to the beginning of my next cycle was only 16 days. I don’t have confirmation on this yet but it would seem logical to me that while this is another abnormal cycle, the condition where a sync issue exists, would also show that while this may be a luteal phase follicle, it may also be a regular follicle that happens to have begun maturation later since the duration of my previous cycle was so short. By “regular follicle” I mean one of good quality.

This logic could also be a mechanism to encourage myself to move forward with it, and keep my head from exploding.

Maybe no one else really wants to know this information. Maybe I really am an anomaly. I find writing it down in words that make sense to me, helps me process through it. If its boring, I’m sorry. Maybe these school posts are really just for me.

Acupuncture today, Clomid with a big shot of Menopur tonight, and doing everything I can to keep my stress level down. Which means vegging out and trying not to think too much. There should be an off button. Seriously.

Circus School, Traditional IVF & AMH

There has been a lot of talk in my world lately about AMH and what it does and doesn’t mean.  Assume when I say “my world” what I mean is in my head. It’s involved reading a lot of white papers, and understanding who the players are and what they are trying to determine with this piece of information that can be so devastating to so many women. You may or may not recall that 5 days ago I was told that my AMH was .16, which puts me in the bottom 1% in my age bracket.

Prior to 2008, the “gold standard” for treating infertility was FSH and E2. As IVF became more popular and sought out by infertile couples, IVF clinics began to try to protect themselves by only taking on the cases most likely to have a positive outcome. The reason for this? Largely couples chose clinics on their success rates. If a clinic had 1000 patients, and only 20% of them were getting and staying pregnant, then you can see that those odds are really quite poor. Consequently you can expect that the profit margins can and will suffer. But if a clinic was able to “cherry pick” their patients by only taking on the ones who had the best chance of a successful outcome, then the clinic can control their percentages, stack the proverbial deck in their favor, and potentially make larger profit margins. Thus enticing new patients to cycle there.

For those of you who have been to more than one clinic, you know that some are hard sell used car sales man types, some downright refuse to treat you depending on your age, or your issues, and some promise the moon, knowing full well that they are taking your money without giving you the chance at a positive outcome. Trust me when I tell you, that the profit margin in these clinics is huge, primarily because most people pay at least partly, out-of-pocket. Overwhelmingly IVF is not covered by insurance. Yes there are exceptions but most people have to pay at least some amount out-of-pocket.

Is it ruthless of me to boil it all down to money? Maybe, but these clinics are business’ and every business is in business to make a profit. Some just go about it with more integrity than others. I’m not saying all traditional IVF clincs are bad either. What I am saying is “your mileage may vary.”

The best I can research is that the AMH test was conceived of,  and propagated by Dr. Schoolcraft at CCRM for evaluating the reserve for his patients who are mostly undergoing traditional IVF. If you had a low AMH, you would be shown the door right away so that he could keep his 40+ success rate in the 30-40% range, which didn’t last when he ceased cherry picking, because economic conditions are making it hard for him to be so choosy. AMH, just like FSH, is only indicative of quantity, it provides no indication of quality. It also provides no information about whether or not you can sustain a pregnancy assuming you should become pregnant.

Traditional IVF clinics now treat AMH as their “gold standard” but its only one piece in a larger puzzle. And to see the larger puzzle you need to understand the motivation behind this test, and at least grasp how the other pieces fit.

I am not doing traditional IVF. Because of my age, there are very few IVF clinics that will treat me without trying to shove the idea of donor eggs down my throat as an immediate cure-all. Not that there is anything wrong with donor eggs or people who use them. I’m just not there yet, and my RE doesn’t think so either. Donor eggs are seen as the single “condition” under which traditional IVF clinics would in fact be willing to treat older patients, or patients with secondary issues.

The treatment I am pursuing is based in the idea that fewer eggs produced =’s higher quality. So far I have found it to be so, but it’s still basically the same process as regular IVF, it’s just less drugs, and it’s significantly less expensive. Depending on where you do it, the outcomes are still very high considering nearly everyone getting treated there is of AMA, and lots of times, have secondary fertility issues. What I’m talking about here is still somewhere between 30 and 40% success rates even though this particular Dr, takes on the hardest cases. Women that are post hysterectomy, have cancer, polyps, PCOS and varying degrees of additional secondary issues.

AMH is rarely tested for at the kind of clinic I go to, because it’s just not that important to the goal or the outcomes, and my RE sees it as 1 factor out of a myriad of other factors.

Its harder to find information about the larger picture, because well, it just doesn’t serve most IVF clinics, so fewer are willing to write about it. But the information is there, from reliable sources if you look.

Its taken me nearly a week of researching, and mulling it all over to be able to articulate this, and I hope its helpful to someone. I think what it says about me is that I am an enormous nerd who has the ability to completely geek out with numbers, percentages and algorithms. Who also has the desire to truly understand this new language I am learning.

School is dismissed.