Breaking Up (or at least threatening it)

Dear Dr. ---,

Google is not at all helpful in giving me information on who "owns" or is CEO of Long Island IVF, but I eventually came across something that suggested you are the owner. If this is inaccurate and someone else is more appropriate for this to go to, please be so kind as to pass this on to them. This is not a complaint about any particular person, so please do not take it as such against any of the staff who have worked directly with me. It’s a complaint about the process and I don’t know who is behind each step of that. I just need someone to hear and understand my experience, someone who has the ability to make change within the organization, someone who can try to compensate for mistakes that have been made or at least help fix them for future patients.

I am a woman with a female partner; I did not come to Long Island IVF because we had been trying for years and were struggling with infertility, but simply because we needed assistance to get pregnant with donor sperm. Because the initial consultation led to the discovery of a 7cm dermoid cyst that had to be surgically removed, I was fortunate enough to be able to have all possible fertility testing done from the beginning; while in surgery, the doctors checked for endometriosis, blocked tubes, fibroids, etc. Everything has come back normal except that my progesterone is a little low so I have to take supplements. This gave us a confident start to the process.

After three failed natural IUI cycles, I met with my doctor who suggested Clomid. During the next cycle, I produced four eggs just on my right ovary (my left ovary was "hiding" and unable to be detected during that sonogram) and my lining had remained thick. We also learned that our vial of sperm had 15 million motile this time; the past few months, we'd had mostly 8 million and one vial of 10 million. This was all so promising! It seemed like we had our best chance, and knowing this gave us the confidence we needed to be able to decide on a different route if this didn't work.

But Long Island IVF did not give us our best chance, and our trust is badly shaken.

The first three cycles, the pattern has been this. My follicles consistently grow faster than expected. I'm frequently told, for example, "You're only at 16mm so we probably won't have you come back in for two days," only to be called that afternoon and told, "You're surging and need to go to Melville tomorrow" where I'm already at 21mm the next day. I’m told in that call that I need to take the Ovidrel and come in the next morning. When I go in, the sonogram reveals that I have not yet ovulated, and I'm told to come in the next day for a second round.

This time, our fourth cycle and the first with Clomid, I got the call on a Tuesday and was told to take the Ovidrel around 9:00 PM for a 9:00 AM IUI on Thursday. This was different than normal, but I was on Clomid and had several follicles at varying sizes, so everything was a bit different this time and I'm certainly not the expert here. I trusted my clinicians. I assumed Thursday would be my first IUI and Friday would be my second.

Imagine my surprise when the nurse did no sonogram. "Don't you need to see whether I ovulated or not and whether I need to come in tomorrow?" I asked in confusion. "No," the nurse said, "you were surging Tuesday and took the Ovidrel so you're ready now. There's no point in doing anything tomorrow." My heart sank. "So...today would be the day of the second IUI? I should have had one yesterday?" The nurse said, "You could request to always have two going forward if you want."

This isn't about indulging what I "want," it's about doing what will get me pregnant, and I tried to convince myself that if it was deemed that I didn't need an IUI the day before, then there was no point in it. They must know what they're doing...right?

But I had felt my familiar ovulation pains early Wednesday afternoon, like I always have the day following the Ovidrel injection. Except this time the egg would just be sitting there with no sperm waiting for it. Maybe the other eggs didn't release til that night or the next morning, but there was for certain one that was wasted, that would likely not be alive by the time of my IUI the next morning, and there was no reason for it to be missed.

When I went in for my pregnancy test, after having taken one at home to prepare myself for the negative, I asked the PA about it. She was very careful to protect her organization and to assure me that I should have been able to get pregnant with how this happened, but she did confirm after my persistent questioning that two back-to-back IUIs should be done if possible when using frozen sperm, simply due to its short life. I asked why this had not been done. Tears streaming down my face, I said, "I had the day off of work for Shavuot. I had a vial of sperm sitting in Melville. And I had an egg being released. Why was I not getting an IUI? Why was I not given every possible chance to make this cycle successful?" She could not answer me, stating only that she cannot tell from my chart how the decision was made.

I told her how disappointed I was, and explained that since I am not diagnosed with infertility, my insurance was not covering this and we are out of money. We did not think it would take more than four times to get pregnant since I had been cleared as healthy and fertile, and now we would have to take a break for several months to save up again. I told her how disappointed I was, how angry and upset, that this last cycle that we'd broken the bank with and had to partly charge on a credit card was not given every chance possible to be successful. That our over $3000 (including sperm, thawing, and medication) was treated so lightly while we now struggle to save that up all over again.

That afternoon, I got a call from my doctor. She was not even in my local office that day, so the PA must have called her about this, and I appreciate her concern and responsiveness. I appreciate immensely that she reached out. But she was reaching out to tell me that if money was the issue, we could apply for a grant for IVF, and that IVF would be a logical step after four failed IUI cycles.

We are not infertile - or at least, it is too soon to determine that. We are gay. We only have a clinic involved to help us safely and effectively give sperm access to my egg since there is no male partner. I am not ready to jump to IVF when we have only been trying to conceive for four months, and I've been saying this consistently. IVF is not only very expensive, but it's very intense and has some ethical implications that we would have to figure out our stance on. I feel like to the clinic, it's a shortcut to getting pregnant. You want your success rates, you don't want me adding to the statistics of how long it takes you to get a patient pregnant. You are probably very confident that you can get me pregnant this way and would rather skip all this other nonsense that has lower success rates. But I'm not here for a shortcut. What I AM here for is to be given expert and attentive service to give me my very best shot at getting pregnant with IUI, and I don't feel that this is happening.

How could the nurse doing the IUI say I was surging Tuesday and that's why it didn't make sense to come in Friday, but when I mentioned that to my PA, she says my record shows I was NOT surging? How does such opposite communication happen, and what/who am I supposed to believe? Why would the other person have said something different? If both my PA and my doctor admit that there should be two IUIs when using frozen sperm, how was that missed? Did someone just skim quickly over my record before calling me and not pay attention to the fact that I'm using frozen? That's a $3000 oversight. That's a waste of a vial that finally had a wonderful number of motile sperm, and a waste of the vial that is still sitting in a tank in Melville for no reason. It's a waste of my cycle, my money, my time, my roller-coaster emotions and false hopes.

Maybe I wouldn't have gotten pregnant anyway. But we'll never know, will we? The fact remains that I spent $3000 after three months of IUIs and did not receive the maximum opportunity for conception that I deserved. We feel betrayed by a clinic and by doctors that we have been pouring our money and our faith into. We don't know how to trust doing that a fifth time.

We have an unwelcome break for a few months while we save up money again for a few more IUI cycles or even IVF. I suppose this will be an opportunity for us to re-examine what the best route is now, and understandably Long Island IVF may no longer be part of that plan.

Thank you for your time,

Rachel L

Round 4 and Still a Mess

I was okay for a while, really. I was very optimistic that we'd given ourselves the best chance we could, but also knew that the worst case scenario still meant knowing what to do next. I haven't felt any symptoms this time - no nipple soreness or breast tenderness from the progesterone, which is a first. A little odd, and I guess that COULD make me freak out, but honestly I just saw it as, "well at least something's different this time!" and kind of let it go.

Then this morning my lower back started aching, and it got progressively worse throughout the day. Nicole and I took a walk through town after dinner since the weather is cool and gorgeous, and that eased it a bit, and then it got worse again after I got home. I'm over a week from when my period would be due, so that can't be it. And it's pretty severe.

So that's when I did The Dreaded Thing. The thing everyone warns me against, and that I know I shouldn't do.

I Googled.

I Googled "early signs of conception within one week of fertilization" and saw this:

"Backache
Backache is a similar symptom as cramping.  Some women just feel this aching in their backs.  When implantation takes place the egg burrows into the lining of the uterus.  This process can cause cramping and other aches and pains, like a low backache.  A backache around the time of implantation could be an early sign of conception. Early symptoms, the ones that happen shortly after conception, tend to feel like PMS but more exaggerated."

It's been seven days. Implantation occurs between seven and ten days after. It's just ever so possible. And yet I know that I have taken things as indicators in the last cycles that clearly weren't. I know that it's too early to really know anything. I know that I will never have an explanation for some of the other "symptoms" in previous cycles, so no matter how much I talk myself into this meaning something because it can't be random...it may mean nothing and just be random. I know all of that, yet I can't help it. My mind and my heart are made for hope, and I had quite a bit of it before this even happened. 

I'm approaching this with caution, of course. Part of me feels a sense of dread about even having something to overthink. I was more relaxed when there was nothing.

The Importance of Support

I can't say enough how glad I am that we have let the people close to us be part of this journey.

We ran into one of Nicole's coworkers in the waiting room once, someone she had never really spoken to before, and instantly bonded over this shared struggle. We have hung out with them several times now and appreciate having someone else who gets it and is in it right now. We check in with each other all the time.

My closest friends think to reach out to me once in a while to ask how it's going and how I'm holding up. This morning my best friend sent me a text with just hearts, which I received as I was waiting for the sperm to be washed. She was thinking of me at that very moment and just wanted me to know that.

My family is rooting for us nonstop and allow me to fill their phones with group texts at every stage of the process. They are excited and encouraging at every step, never telling me not to get excited or not to get my hopes up.

Our cantor didn't even blink when I asked him during Tikkun Leil Shavuot if I could use the privacy of his office to take my 9:00 injection at the break.

My coworker who had five IUI cycles before conceiving keeps an open door so I can come have a "moment" in her office after getting the official call in the middle of a workday. She helps put me back together and gives me the space to grieve for a bit before facing the rest of the day.

My other coworker, who is struggling to conceive their third and is doing IUI, checks in weekly to see what is going on with us and to share her own challenges. She is someone with whom I never have to feel like I'm talking about it too much.

Our friends A&A are our only same-sex-parenting friends, our only friends who have been here and can give us a different perspective than anyone else can. They also gave us a hand-done Chinese fertility drawing that they used when they were going through this to hang in our bedroom, and heaps of books and magazines.

This is tough stuff, and I can't imagine going it alone. Being surrounded by love and support and positive energy keeps us uplifted when we most need it.

Clarity

As I wrote about Sunday, my initial Day 10 exam showed one egg at 13mm so I was told to come back Tuesday. The nurse did mention that I had an unusual number of immature follicles, about 22 on each ovary. She said 4 to 7 is normal and asked if I have polycystic ovaries. I said I had never been diagnosed with it, and she said that because my hormones are normal and I ovulate regularly and have regular periods, I probably don't have polycystic ovarian syndrome but could have polycystic ovaries which is different. I said that I would imagine someone would have mentioned this to me before now if I typically have that many follicles because I've had many, many sonograms by this point, and could it be the Clomid giving me more? She said that's possible, and that since this is her first scan, I should ask my regular sonographer what my baseline is, though there is nothing to worry about either way.

Well, apparently it WAS the Clomid. I went back in Tuesday and had FOUR mature follicles! They were at 10mm, 13mm, 15.5mm, and 21mm. And my lining was thick and beautiful. I'd had no side effects from the Clomid, but the lowest dose made me produce four eggs?? I was so shocked and just so, so happy because now we could be in a better place to figure out what direction we want to go if this round doesn't work.

I was also starting to surge, so the nurse told me to take my injection between 8:30 and 9:00 that night and to go in Thursday morning at 8:30 for the procedure. The last three times, I've been told to take the injection that night and go in the next morning, and then I end up having to go in again the following day because my egg hasn't dropped yet. So maybe they are starting to figure out my body's patterns and realized there was no point in doing IUI the next day and that I might as well give the shot its full 36 hours in my body before doing it. I was off of work for Shavuot and we had already bought the other vial, so I kind of wish they had just done me both days anyway, just in case!

babymaking tools

I felt ovulation pangs Tuesday afternoon, but it wasn't a surprise that the 21mm was ready to pop. I just kept hoping that the rest wouldn't be released for another day, and at their current size, that should be a safe assumption. There was no sonogram today since they didn't need to determine whether I should come in the next day, so I don't really know for sure how many eggs were still there or if any were already released.

Today was a simpler process than ever before. I got there a little early, as always, and this time they went ahead and started thawing it as soon as I got in instead of waiting until my appointment time. There was also only one other person in the waiting room, and usually it's half-full to full. I got in quickly and, because there was no sonogram, the procedure was quick. And I didn't even feel it, which has only happened one other time (not feeling anything is a good sign since your cervix is softest when you're ovulating). And the nurse let me know that there were 15 MILLION sperm this time! We have never had more than 10, and even that was only once. It's been around 8 every time.

With 15 million motile sperm and hopefully 3 viable eggs...I think it's safe to say that if this round doesn't work, we will be willing to consider switching donors. And really that's what I needed most: direction. We've been floundering trying to figure out how far to take this and what the next step should be. But our chances are really maximized right now, so we both feel pretty confident in trying something different if this doesn't work. Of course I've been praying for pregnancy, because how could I not, but I don't see God as a wish-fulfiller so I've prayed more for direction, for certainty in what we should do next.

Shavuot put me in such a peaceful and receptive place yesterday, and I have let the stress melt away. I went into this in a different state of mind and am hopeful and positive, both because we have an improved chance of pregnancy with these improved numbers, and because no matter what the outcome is, we know what to do next.

laying down on the ride home

Oh Shavuot, You Get Me Every Time

Shavuot is the harvest festival holiday at which we recall the giving of the Torah and the Ten Commandments at Sinai and remember how we made a decision to come together as a community, as one faith, with certain laws and traditions we agreed to uphold. We committed to God and God committed to us. We had both a personal and a communal experience of revelation. At Shavuot, we also read and study the Book of Ruth, who was a convert that made her own personal commitment to God, Torah, and the people Israel.

Last year, this holiday fell in mid-May, just a month after my conversion. The holiday holds so much significance to me personally as a Jew-by-choice, and I became so emotional in the service last year. I had full-on tears streaming down my face during several parts of the service, and my rabbi came up to me immediately afterward to check in with me and hug me. I told her it felt like coming out of the mikvah again, that feeling of being overwhelmed by awe and gratitude. It made sense to me that it was such an intense day for me then, but I don't think I expected this to hit me with the same power over a year later!

The holiday began the previous evening with Tikkun Leil Shavuot, a traditionally all-night study session that we do for a few hours. It's traditional to eat dairy on this holiday and people usually make cheese blintzes or cheesecake. I went a little nontraditional and made a tres leches cake, which earned rave (and heartwarming) reviews. We read the book of Ruth with discussion, and then Cantor and Rabbi each taught from it using a different perspective. We got so caught up in conversation that we went way over the time and had to stop ourselves. Then we went to the sanctuary for a brief ritual wherein we talked a little about the Ten Commandments (such as how the first half is about belief in God but the second half is about how we treat others, showing us that how we live is even more important than how we believe). We ended by passing around a Torah scroll so we could each have our moment holding it. It was a simple but powerful little ceremony that made me understand why people study all night in preparation for spiritually receiving Torah. This felt like pausing a movie at the critical climax to go brush your teeth and go to bed before resuming it the next day!

I took the bus to temple, though Nicole had offered for me to drop her off at work and take the car. I liked doing something a little different, something that required a little more effort than how I usually get to temple. It made me feel like I was making a bit of my own trek to Sinai. I thoroughly enjoyed the 10 to 15 minute walk up to the road with the bus I needed; I smelled the flowers, heard the birds and mowers, felt the breeze, watched people gardening. Then I got to temple early and was the first one in the sanctuary. I just sat there soaking up God and letting myself feel that gratitude and wonder, and I was soon crying before it had even begun! I got pulled back out of it as people started coming in, but then had a few other breakdowns throughout the service, just feeling the enormity of how Judaism has impacted me, how very fortunate I am to have taken every step in my life that led me to where I am now and to this beautiful discovery that has changed my life.

I left feeling utterly at peace. The intensity and excitement and anticipation leading up to my conversion versus my life since then reminds me of planning a wedding versus settling into the actual marriage. Things have calmed down, I feel settled and secure and comfortable. I even come to take it for granted because it's my normal now. I really appreciate having an opportunity, at least once a year, to reflect on that period when I formally chose Judaism and made my own commitment. It's beautiful to continue having a communally sanctioned opportunity to recommit and to not take it all for granted for at least that one day, but to thank God for having brought me here and given me something so dear to me. It's a chance to really appreciate my community, my clergy, my faith, my traditions, and my life in a newly refreshed way.

So now what?

I met with the doctor two days after my pregnancy test, as scheduled, and she told me that she expected it to have happened by now, that I have been checked for everything that it is possible to check, and so has the sperm, so it should be happening. She recommended starting Clomid and went over the side effects with me, both the common and the rare but severe. She said that it would give more opportunities for fertilization, and then I should move on quickly if that isn't working either. She also suggested choosing a new donor, stating that it's possible that this sperm just isn't a match for my body. She said that she normally can't suggest this as an early-on solution because couples with a male partner would obviously not be quick to give up on his sperm. But we have "the luxury" of trying a switch there to see if that works.

I tried to explain to her, without investing too much energy into getting her to understand the emotional stakes, that choosing a donor was a very intensive process. We put a lot into it and it was very difficult to find the perfect one, and we're hesitant to give up on it and start all over with a donor search if we really just need to be patient for a couple more months. So she suggested doing one Clomid cycle with this donor, and then a second with a new donor if that doesn't work, and then if it STILL doesn't work, we should look at IVF. Of course this rushed plan assumes that my body actually responds to the Clomid and makes two to three eggs in each of these two additional cycles, which, spoiler alert, it hasn't yet.

I bristled at the mention of IVF. I just don't think I'm ready to go there yet. It's so intense and puts my body through so much - and while I won't hesitate to do it if I am truly convinced that that's my only way to achieve pregnancy, there's something about it that feels more artificial and disturbs me just a bit. Not enough to never do it, but enough not to want to jump to it prematurely as a shortcut. It's also super expensive, and since if I AM infertile it would be "unexplained infertility," my insurance won't cover it this early on. I just don't think I'm ready to be at my last resort. It's only been three tries!

I was taking one pill prior to this journey. ONE.

Another option is a recently offered known donor. My wife's friend's husband has always wanted to donate, and his wife said this would be the only way she would feel comfortable with it, if it is to help friends she knows personally. They live in Massachusetts and would be someone that our child could have access to but wouldn't grow up around or be close with. We could get a few free tries out of this (the cost of travel and hotel stay during a fertile week would still be so insignificant compared to our current fertility expenses), and if that didn't work - with a new donor and using fresh sperm as frequently as we need to - then we could embrace the "unexplained infertility" and discuss IVF. (We could even be saving up for that in the meantime, just in case.)

But this is STILL not something I just want to jump to. What if my body just needs a little more time? It's the doctor's job not to let people just put their money in a sinkhole without suggesting trying something different. That's their agenda. But my agenda is stubbornly spending more money than we have on something that hasn't been working. What is the middle ground? Who is right? I don't think there's any way to tell unless I could live in a parallel universe and try both options to see what works first. But we don't have that luxury, and we have to make a decision. At what point do we give up on our cherished donor? At what point do we give up on IUI? At what point do we give up on using a clinic and suck up the complications of using a known donor? We could make a sharp left turn and never know that that was the month it would have worked if we'd stayed the course. Every month that we have to decide whether to make a life-altering, future-altering change to our plans, we have the nagging question, "But what if this next month would be the one when it works?"

The pressure is more than either of us can stand right now. We feel at a breaking point. What I DO know is that, as per my sonogram this morning, this low dose of Clomid did nothing for me and I have only one egg to try with this month. So I'm trying to relax and do this "one more cycle" without worrying about the what-ifs, because if it doesn't work, we will unfortunately have a few months off to think it all through a million times over.

Hand-drawn Chinese fertility art that A&A passed on to us and is now hanging up next to our bed. Note the phallic image pointing right toward the empty tunnel, and the babies pouring out of the other tunnel. Classic.

Annnnnd the Envy Sets In

I was not surprised at this third negative pregnancy test, because the few symptoms that had started to give me hope began to disappear the weekend before. As my breast tenderness decreased dramatically within a few days, I could only assume that my natural levels of progesterone were beginning to drop, and that any residual soreness was due to the supplement. I was so convinced that I didn't even have that tough of a time waiting until the day of the blood test before taking a home test. And I didn't even cry. I felt disappointed and I felt sad, but it was a continuation of the disappointment and sadness that I'd been feeling for several days since I felt my body getting ready for a period.

I didn't cry for an entire week, until the night we went out to dinner with my friend Allyson and her husband and they announced that they were having a baby. Now it hit me. I smiled and squealed and congratulated her and kept talking excitedly in order to keep myself distracted and keep my bubbling emotions under control. She said that they were planning to do a big reveal at that Saturday's housewarming party but that she didn't want me caught off guard in a crowd because she knows how sensitive this is. I reassured her, because I really don't want to take away from her joy and don't want her to have to walk on eggshells around me because I'm not pregnant yet. I already know that when it's my turn, there are people struggling to conceive that I will have difficulty sharing the news with. I don't want her to feel that way, even though I know it's natural.

But this is the first time such news DID really hurt. I think it's because we haven't been in this place when other people close to us have gotten pregnant. I might have been emotionally ready, but we weren't financially so we hadn't started trying. Yes, I was impatient for it to be our turn, but I knew our turn was coming, and soon, so it didn't take anything away from my genuine joy for the parents-to-be. It never felt like it had anything to do with me. We hadn't started down that path yet, so it wasn't a race!

But this time, we have. No, it's still not a race, but it's not just a matter of "when." It's a matter of how, and how much, and what do we do next, and when do we draw a line and try something else, and will this happen before my agency's maternity leave policy drastically changes for the worse in exactly one year. And this is a friend who started trying at the same time as me. She came off of birth control the same month we first went for insemination, and we talked excitedly about raising kids side by side and even being pregnant together. She hasn't kept me updated since then, so I had assumed it hadn't happened for them yet either and she just didn't want to talk about it. But that wasn't why she didn't want to talk about it.

So she got pregnant the first time. She came off her birth control, made love to her husband, and conceived a child. Just like that. I've taken odd comfort in knowing that even for straight couples, it isn't so easy. That it isn't always a romantic sexual experience. That it can be frustrating and a lot of pressure and can up-end people's sex lives when they have to follow a schedule and consummate on demand. But my friend had the best case scenario, and I'm struggling to be happy for her. I would never, ever wish this on her, but I am feeling envious. And going to her party where half of their friends had babies with them did not ease it. My heart hurt and my arms felt empty. I felt sad watching her be welcomed into the fold of young parents and knowing our own circle is waiting impatiently with us for us to join them.

It's easy to say "be patient, your time will come" - but we are now $12,000 in and have no idea when this will happen. We've run out of money. We had to charge half of this final cycle, and if it doesn't work, will have to take a break for a few months to save up all over again for even one or two more cycles. There is a lot at stake that makes it very difficult to just let go.
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