My Depot Lupron Conundrum

     I don't want to do 3 months of Depot Lupron injections. There, I said it. I wish the decision was that simple. Today is the one day of the week that I decided to relax and do absolutely nothing. No homework, no housecleaning..I'm refusing to even walk the dog today. So, naturally, because I always need something to occupy my mind and elicit some sort of anxiety, I decided to focus on my upcoming Depot Lupron injections.

     To catch you up, Dr. Wang at SIRM CT recommended that I have the Endometrial Function Test (EFT) performed. You can read more about that here. My results showed that I had a high level of "Glandular Developmental Arrest," or GDA. Basically, this is corrected with three months of Depot Lupron injections.

    This is really fucking bad for several reasons. 1) Apparently Depot Lupron has been pulled from the market in several other countries because of the severity of its side effects. And we aren't talking just about the fact this it puts you into menopause. I mean things like cancer, chronic bone diseases, etc. Sounds fan-fucking-tastic. Of course there are many, many women who are just fine, but still. I don't exactly fall on the upside of odds as evidenced by my current bullshit situation.

    Second, we had our chemical in November. In December I didn't ovulate. In January I did the EFT. This month I cycled and for the next three months I'll be sticking myself with the menopause juice. In total, 6 months on the fucking bench. It's really horrifying to think that I will turn 33 in September. We started trying when I was 30. We still don't have a baby.

     This leads me to my major issue: I kind of want to try on our own for several months. Because of an underlying metabolic disorder, we sought treatment after 6 months of trying. That was fortuitous because I had Celiac and the septum. However, between all of the testing and cycling, we've only managed to try on our own for a total of 10 months. Only 1 month of which was after my big issues were solved. I kind of feel like we could have stuck it out longer. Plus, I am sick of feeling like I am spinning my wheels. The EFT and subsequent treatment is controversial at best. Am I doing the right thing by putting everything on hold for three months? Would I be doing the right thing by trying on our own? Should we do an FET with the embryos from this cycle (that are hopefully still growing) and implement Dr. KKs plan and see how it goes? Will I regret it if it is a BFN or winds up in another chemical? I hate not knowing the right path to take.

    To make matters worse, there is next to no research on this. My RE has quite a bit of ancedotal evidence showing that there is success with this protocol, but where is the scientific evidence to back this up? More specifically, where is the scientific evidence of this that isn't written by Dr. Kliman himself, the founder of the EFT? Along with this line of questioning, the population that actually requires this treatment is so small, and, quite frankly, if you make it to this point in your journey, are you willing to sacrifice potential success by participating in a study where you may wind up with a placebo treatment, or in a control group? Likely not.

     Between this, my emerging anger over my situation, and the fact that I have no damn clue about what course of treatment to take, my therapist will be hearing an earful.

    To quote Vince Vaughn and Wedding Crashers -  "I'm gonna go see Dr. Finklestein and I'm gonna tell him we have a whole new bag of issues. We can forget about mom for a while."

IVF #3: Roundup

     To recap, this cycle started with a baseline of 3 follicles and an estrogen of 195. Then I had a mental breakdown. A few days later, I had 5 follicles and my estrogen of 196. So, not a great start.

     We did everything completely different for this cycle. I was on a MDLF protocol with prednisone (for high normal Th1/Th2 Cytokine Ratio). I took 10 units of micro-dose lupron AM & PM beginning 2/8 and added300 units of Gonal-F in the AM starting 2/10. We added in a vial of Menopur in the PM on 2/12 and continued with that. I then added 20 units of HGH (Omnitrope) for four nights beginning Thursday 2/18. So, by the end, I was up to 5 injections a day!

     My follicle count grew to 11, which is the most I have ever had during a cycle, and my estrogen on the day of trigger was 3116! I was so blown away by this because I had never had an estrogen at trigger higher than 1979! However, I know how this IVF shit works...nothing good happens without anything bad...and I said to my husband "watch, we'll get 5 eggs."

Guess what?

   We got 5 fucking eggs. Ok, that isn't the whole story. We actually retrieved 12 eggs. I was pretty uncomfortable towards the end so props to you PCOS girls who have 1023232 follicles. Although I still hate you bitches because you make it rain embryos. #sorrynotsorry. #Iamkidding. #kindof.

     Annnyyywwwaaayyy, of the 12 retrieved, 5 were mature and 5 looked like they could possibly mature in the lab. 2 did. So, that brought our total haul to 7. This is hilarious because we have wound up with 7 eggs every cycle! My ovaries are pre-set on a very specific number apparently.  This is also the first cycle we have done ICSI and 6 of our eggs fertilized normally!! This is the highest number of embryos we've ever had!!!

     If I'm being honest, I'm slightly disappointed. I was really hoping more would mature and fertilize. However, 6 embryos is a totally normal number to have for anyone, let alone someone with DOR. I just feel so much pressure to freeze several embryos because I'm about to go on 3 months of depot lupron, after which, the lupron will hang out in my system and keep my ovaries suppressed for several months so stimming again too soon will yield a shit cycle.

     We are culturing out the embryos to day 5, which is nothing short of terrifying. We've never done this before. I'm praying that this protocol shift, my supplements and HGH really kicked the quality of my eggs into high gear, and that ICSI helped us get the best sperm possible.

     Mostly though, I'm just hoping that somehow, someway, my future child is in there.
    

 

You too, uterus?!

Source

     For an entire year now, since the dawn of our time at the RE, I have sung my praises far and wide for my uterus. Specifically, my endometrial lining. My lining has been the shining star of my reproductive system. It builds up like a champ and reliably puffs up to its desired thickness like a deliciously tempting pastry, it develops a trilaminar appearance with ease, and has been complemented on by many a reproductive specialist.

     Recently, my uterus, as a whole, has been taken down a notch by the identification of a Narbothean cyst by Dr. KKs people, and by finding out that my uterine blood flow was less than stellar. However, the nail in the uterine coffin came when I received my EFT results.

     My lining has failed me and I need to enter a lupron-induced menopause for three months before my next transfer.

     Gone are the days of endometrial superiority. My lining can now retreat back to the Island Reproductive Organ Misfits with the rest of my lady parts. 

     According to Dr. Wang, we did the EFT due to my endometriosis diagnosis because studies have suggested that women with endo have a higher chance of having a dysfunctional endometrium, which can negatively impact the implantation process. My results showed the receptivity of my endometrium to be decreased. To explain it further, Dr. Wang said that the endometrium is largely composed of two components - the stroma and the glands. The stroma is like the scaffolding of a building that holds up a structure while the glands are the structures embedded within the stroma that are important in the implantation process. Basically, the stroma and glands harmonize in response to the hormonal changes throughout the menstrual cycle, which allows the endometrium to prepare for, and accept, the implanting embryo during the "window of implantation."

     From my EFT, it appears as if the glandular portion of the endometrium showed delays in development, which may affect its ability to allow the embryo to implant. This specific issue is called Glandular Developmental Arrest (GDA). This was determined during the EFT analysis when they went to look for a protein in the glands called cyclin E. Normally, cyclin E is present 5-6 days post ovulation, however, to prepare for implantation, the levels should drop low. High levels of cyclin E would suggests that my endometrium did not develop properly to allow for effective implantation. Normal cyclin E levels should be less than 20%, and ideally less than 10%. Mine came in at 30%. 

     High levels are normally caused by endo, hydrosaplinx and/or an endometrial infection. I've had enough things shoved up, around and into my vagina and uterus to rule out hydrosalpinx, and I have endo, so, yup. Therein lies the reason. 

     I also have high neutrophil levels which is indicative of an endometrial inflammation, which is also common in endo. 

     Naturally, I asked a few questions about this whole situation. I asked if my chemical pregnancy was a "good" sign and he said that it was, but that repeated chemicals are, in his experience, a common presentation of this lining problem. We can also treat for an endometrial infection but the possibility of that is low, and that, the success rates associated with the three months of lupron are exceedingly high. 

     So, that's that. We can now add my uterine lining to the list of fucked up reproductive pieces. For now, I'm hoping beyond hope that my oves yield a few good eggs (& embryos!) to transfer in May. So.Far.Away.

Cycle Update: IVF #3

Source

     I started injections for IVF #3 last week so today is day 8. I'm doing a Microdose Lupron Flare (MDLF) protocol and primed with estrogen. Things are off to a bit of a rocky start.

    IVF #1 was new and exciting. I knew I had DOR and would likely not bring in a haul of eggs like many others, but overall, I knew it was a "practice round." This still didn't stop me from leaving most monitoring appointments in tears. IVF #2 was s completely different story. Estrogen priming with patches was so quick and I began stimming during a weekend away in NH. I learned to let the techs know that I didn't want to know my u/s results and I didn't read into the results. Because that cycle did result in a pregnancy, even if only for a moment, I feel pretty good about it.

     Enter IVF #3. I began injections after finding out about my Dr. KK results and that SIRM CT was closing. To top that off, at my baseline monitoring appointment, I only had 3 follicles. THREE.FUCKING.FOLLICLES. As of my next monitoring appointment, I was up to 5 follicles and I'm wondering if almost 4 weeks on estrogen priming (to accomodate batching at SIRM - something I never had to do before) I go in again for monitoring tomorrow. I'm the crazy girl who rolls up into the ultrasound room with my ipod, and tells the doctor that I can't know any information or else I'll lose my shit all day, so please don't mind me laying there, music blaring and eyes closed.

    I started the cycle with 10 units of lupron AM and PM. Then a couple of days later I added in 300 units of Gonal-F in the morning along with the lupron. After my last monitoring appointment last week we added in a vial of menopur at night. I was on Estradiol until yesterday.

     I'm not feeling great about this cycle. It's not starting great and it's looking like it could yield the fewest eggs yet. I know the egg count doesn't necessarily mean much, but I had the highest hopes for this cycle. Stupid me. Worse, if this cycle doesn't get us some embryos, we run the risk of having nothing to transfer at the conclusion of the depot lupron treatment, if needed. That shit stays in your system for months  after the last injection and would effectively kill any stim cycle before it could even start for months to come.

    More uncertainty. More waiting. Less hope. That's where I stand today.

The Day the Music Died. Or, what happens when your fertility clinic is closing!!!

     Fresh off my overwhelming consult with Dr. KK the other day, I was feeling a bit dizzy. Somehow, even though my immune issues were super tame compared to most, and didn't require any sort of heavy machinery to tackle, I wasn't prepared for the realities of managing yet another medical provider, flying back out to Chicago for a blood flow check once I start Lovenox, or for all of the blood work that would be entailed. I had heard warnings about all of these things, but it hadn't really sunk in.

    So, imagine my surprise when that call is almost immediately followed by a call from my RE at 5:30pm telling me he had some bad news. I immediately figured he was calling about my EFT results, and told him I was prepared to hear what he had to offer. I was wrong.

    Apparently SIRM (and, like 70-80% of the fertility clinics in the U.S.) are owned by a company called IntegraMed. In June of 2015, SIRM in NYC (or, IntegraMed) forced Dr. Wang to open the SIRM CT office and direct it. I'm told he didn't want to go, but he did. I'm assuming he had some sort of a contractual obligation. Anyways, he uprooted his life, picked specific staff to accompany him, uprooted their lives, and caused chaos amongst his patients...many of whom weren't able to commute out to CT from NYC, and many who have killed themselves trying.

     And at 5:30pm on this day, Dr. Wang was calling to tell me that SIRM CT was closing...a mere 8 months after opening. Panic ensued. Dr. Wang was so professional and forthcoming about explaining why this was happening, and where he stood in it all. Basically, IntegraMed decided to purchase CT Fertility - a competing clinic that is about 15-20 minutes away from the SIRM CT location, because it's owner is retiring. It's been open since the early 90's and apparently is a very popular clinic with a loyal patient population. It's all dollars and cents, and it will be a much smarter business decision to stick with that established practice instead of keeping SIRM CT open.

     This is where things get sticky. Dr. Wang was offered a position at this new clinic, but isn't sure how he feels about it. He doesn't know their practices or lab, and feels that he cannot decide whether to go there without more information. He was also offered to work at SIRM NYCs satellite location in Westchester, NY - meaning he would see patients there and do some monitoring and minor procedures, but retrievals and transfers would be in NYC. Finally, he may leave SIRM altogether (whaaattt!!!!) for greener pastures (although, they've been fucking with him so much I wouldn't blame him if he shit on Sher's desk before peacing the fuck out), and may visit with his sick mother and mother-in-law in Taiwan for a bit. He gave me all of my options in this scenario, knowing that we were about to embark on a cycle. He wanted me to have control over how this went down, and for that, I'm so grateful. He was so transparent, and being so goes a long way to making this shitty situation much more palatable.

     I managed to hold my shit together for the conversation, which I am quite proud of, and asked some thoughtful questions, like, where the fuck are my embryos going to be living, yo?! CT Fertility will be using the SIRM CT office (since it's shiny and new) for their practice and I'm assuming that our embryos will be chilling there, which isn't something I'm really comfortable with since I know jack shit about this new practice. If Dr. Wang stays at the new practice, then everything will be copacetic and easy. If Dr. Wang goes, my embryos and I want to follow. If he goes to Taiwain, my embryos and I plan to pack our bags and head to SIRM NYC. SIRM NYC is our backup. It's a great clinic and a good lab, and if we are going to travel 2.5 hours to a clinic, we may as well add 45 minutes to the commute and go somewhere fun like NYC. Sorry, Trumbull, CT, you no interesting!

   Basically, Dr. Wangs FB group (yup, I'm a groupie), have banded together to write IntergraMed a letter outlining our demands. First, since almost all of us sought out Dr. Wang and NOT SIRM specifically, we demand that they move our embryos to the clinic/provider of our choosing without cost to us. Second, the wait list at SIRM NYC is cray, especially for Dr. T. So, we decided that since this was a hardship being brought unto us, that IntegraMed must guarantee that any of Dr. Wangs patients who choose to stay with SIRM have expedited appointment times with their new providers, within 1-2 weeks of transferring to the NYC office. I refuse to hop on a 4-month wait list after this bullshit.

    As you can imagine, this was me after hanging up the phone:

   So, now we wait to see what Dr. Wang is going to do. When he puts up his bat signal, myself and the rest of the Wang Gang will follow.

A Dr. KK Update

     Welp, I finally had my follow-up telephone consult with Dr. Kwak-Kim. It's not that I waited long, it's just that I'm impatient. All-in-all, the follow-up went really well!

      It's a bit difficult to understand her at times due to her accent, and the fact that we were communicating over the phone. She also didn't really explain things well. It was a bit difficult to follow along with what she was explaining, and particularly, to understand what lab values of mine were off or normal. My only real complaint was that she didn't seem to know me from a hole in the wall as she was speaking to me...I could hear papers rustling as she was speaking to me, so I kind of got the impression that she was viewing my results for the first time as she mentioned to me I should have a thyroid scan done, but I did have one done at her office, but she didn't see the notes until I pointed it out. Also, whenever their was an elevated value, she didn't quantify it, so I don't know how "off" it was. To be fair, I didn't ask.

    First things first, my TSH came back at 2.66. This has been pretty consistent over the last year, except for a reading I just had in December where it was 1.25. None of my REs have been concerned with it, but she would prefer it to be under 2, so she prescribed 25mcg of Synthroid daily.

    Second, and what I already knew, blood flow to my uterus isn't great, so she prescribed lovenox injections for transfer. We have planned for a freeze-all for this IVF in anticipation of this, so I'll begin taking it at some point before that. However, a curve ball was thrown...I need to fly back to Chicago for another ultrasound to see if my blood flow has improved once I start taking it. It makes sense, but damn, I wasn't anticipating that.

    Finally, she said my T Helper Cells were elevated, I think. She may have been referring to my Th1/Th2 Cytokine Ratio or they may all be the same thing. I can't tell and this is where I got the most confused during our conversation. She's prescribing Prednisone to begin a few weeks before my next stim cycle. I'm actually already in my next stim cycle, but Dr. Wang already prescribed me Prednisone for my high normal Th1/Th2 so I started that when I began my protocol as well instead of having started it a few weeks ago like KK would have preferred.

   She did mention that if the Prednisone didn't work, I would have to do IVIG, but I'm pretty sure that is where we draw the line. It's super expensive, and even if it is covered by insurance, I don't know that I'm comfortable with using a blood product if it isn't absolutely required. In any event, she's running it through my insurance because coverage, if applicable, can take a while.

   Mostly, I'm overwhelmed with the amount of blood work required. I have to go back in two weeks to re-do my TSH and see if my Synthroid needs to be altered, as well as my free insulin level (which was normal, but she said it was higher than it should be for my age...so, maybe that's because of the 20lbs I've gained, or my crazy sweet tooth..) and two weeks after that.

    My plan is to e-mail her NP to explain that I'm stimming already so they know where I am in the process and can  view my lab results with that in mind. When I wind up having my FET, I'll follow her protocol fully. It's overwhelming adding a third provider to the mix, but I'm happy we went this route and can add a few more things to my protocol and hopefully find some success.

    

I HATE IVF

     Today was finnnaalllyyy the day that I was slated to go in for my baseline for IVF #3 and I'm certain this is going to be my worst cycle yet. An epic fucking failure of a cycle. Mark my words.

     After my chemical pregnancy in November, I had an annovulatory cycle. This put off the EFT, and switched me from cycling in January to cycling in February. In January (on CD 13 to be exact), I went in for my 3D saline sono and we happened to see 11-12 antral follicles. Holy shit. With numbers like that I could make it rain eggs. And so I entered my baseline this morning full of hope and optimism.

     Actually, I'm full of shit. Since school started my anxiety has been out of control, which was compounded by the anticipation of my Dr. KK and EFT results, which was further compounded by average IVF stressors, which was further compounded by the fact that MY FUCKING FERTILITY CLINIC IS CLOSING!!!! I can't even get into that now, but trust me, that information took the pile of shit I was wading through and made it look like a sun shiny day.

   Anyways, in true "my luck is absolute shit" fashion, I rolled up to my baseline appointment ahead of a winter snow storm. The only clinic that would monitor me locally and go through my insurance was Mass General Hospital (MGH). The doctors do the monitoring there, which is a huge shift from Boston IVF and meant I had to wait for the doctor to see me. I was fairly convinced that I had been left for dead in the ultrasound room, and had begun napping with my feet in the stirrups, when the doctor graced me with her presence. She was so sugary sweet to me and it was so disingenuous, but whatever. She proceeded to tell me I had a cyst on my right ovary (no shit), and when I pointed out that it's actually 2 cysts, and that they are endometriomas, she proceeded to educate me about how we "won't know how much the cyst is impacting my cycle because I'm already on estrogen." Ugh yea, lady, about that, they're effing endometriomas and they're fine. Way to listen.

     Mostly though, I wasn't aware that the doctor required the use of a medical assistant to write down my follicle measurements. Which meant she had to verbalize all of the follicle information. Which meant I heard it. I can't believe I forgot to tell them I didn't want to know anything about my numbers. It leads to personal disaster. My baseline AFC was three. Yup, 3.

     Apparently my old clinic categorized my last baseline AFC as "2-4" follicles on each ovary...so I could have been anywhere between 4 to 8, which would make my paltry 3 seem not so bad if I was on the 4 side of things last time. In any event, I ugly cried all day, threatened to cancel the cycle, threatened to stop fertility treatments altogether. Oh, and I decided a blizzard would be a great time to take up running...while donning a parka and winter boots. Mind you, I haven't worked out since August 2014. When running lasted about 10 seconds, I switched to power-walking around my neighborhood for about an hour and a half listening to my favorite angry songs from college....still in a blizzard.

    We decided to proceed with the cycle. I'm seeking confirmation, but it seems like I can cancel at any point before retrieval and it won't affect the number of cycles I'm allowed by insurance. So if my follicle count doesn't increase, we'll cut this cycle loose. If we make it to retrieval and have a shit amount of embryos (again) I'll be so disappointed. Especially if my EFT results come back that I need depot lupron because it takes about 6 months for the lupron to leave your system, so after one FET post-lupron, we'll have to wait about 5 more months before we can stim again.

     I'm so frustrated and sad about this. I had the highest of hopes by getting all of this testing and switching to SIRM and Dr. Wang, and so far, all it's brought me is additional waiting, profound disappointment and intense stress. It's not funny now. I really need a break. IVF has been a series of disappointments and bad news and there truly is only so much of that someone can take before they break.

    

When is enough, enough?

     There are a few things that have shaken my core this week, and planted my seed of doubt about this whole process even deeper.

     First, I stumbled upon this gem of an article, detailing a woman's death, and subsequent resurrection during labor and delivery. After 7 rounds of IVF, she was pregnant with her second child, yet somewhere around the 20-week mark, after finding out she had a placenta previa, she began having visions that something was horribly wrong. Well, something was. After birth she suffered from an amniotic fluid embolism, flat-lined, and was brought back. Had it not been for a physician who bought in to her intuition that something bad was going to happen, she would have stayed dead. Anyways, the article then delves into intuition - and how it is often correct.

     Well, what the fuck does that mean for me?! I've had an "intuition" that there is no way in hell that I'll ever get pregnant. Then I did. And while having a chemical pregnancy actually restored my faith in having a baby someday (hell, it's the most pregnant I had ever been...), I'm having doubts.

     Do my strong feelings that I won't ever get pregnant stem from an unconscious awareness? Or, am I just trying to protect myself from heartbreak? Is it next-to-impossible to picture myself pregnant or as a parent because it isn't meant to be? Or, is it because I feel so far removed from those outcomes that I can't even fathom it?

     Friday night I was at dinner with some friends from the mind/body group at my fertility clinic, and I mentioned that my greatest fear is that all the infertility treatments in the world won't work for me, and re-iterated the widely-known fact that not everyone comes out of this with a baby. My friend, L, was quick to shut that thought process down, by detailing an article she read that stated most couples (I think she said 90%) would get pregnant with IVF if they stuck with it long enough. No shit. If I had the time, energy, wherewithall, money and motherfucking sanity to endure 25 IVF treatments, I would sure as hell imagine that one of them would work.

     But, how many women and couples really have it in them to wait it out?
 
     The final blow to my shaky optimism moderate pessimism (woo hoo! I've downgraded from severe pessimism!) was reading two separate Facebook posts from women who just received BFNs and decided that they were no longer going to pursue fertility treatments. I found this beyond heartbreaking. Both for the couples making the decision, and for myself, in anticipation that we will soon be in this situation.

     So, which is it? Is it my intuition that is guiding my fear? Or is it my fear that is feigning my intuition?

     We'll know soon enough.