Sunday, January 6, 2013

Our Experience with Infertility Part II - Testing, Diagnosis, and IUI's

This is part II of a 3 part post about our experience with infertility. To read part I, click here.

At our first appointment with Seattle Reproductive Medicine, we met with our doctor and were told what the diagnosis process consisted of and would test us for. Though the male partner doesn't give a semen sample at this point, he is required to either come to this initial consultation with you or to get a doctor's referral before the clinic will test him. I imagine they do this because they don't want to allow just any man who walks in the door to have a sperm analysis. He might only be looking to build his resume in order to market his sperm outside of a professional sperm bank (which right now is not a great idea. A man is currently being sued by the state of Kansas to cover child support and medical expenses after donating sperm to a lesbian couple who've since turned to state services in order to support their daughter. Click here for the full story). In the sperm analysis they're mainly looking for sperm count, motility (how well they travel), and their overall shape. There are a lot of other small things they test for, but those top 3 are the ones most likely to affect male fertility. Oscar had to come back two days after our initial appointment to make his "donation." Tough work for the guy, huh? Apparently he was required to use a sterilizing alcohol wipe, which stung a little, but that was the extent of his difficulties.

I, on the other hand, had considerably less pleasant, much more invasive testing. On the same day as the initial visit, I was taken in for a transvaginal ultrasound so the doctor could observe if everything at least looked the way it should. I was also given a blood test that day. As I recall they took multiple vials of blood. The blood tests are the biggie. They are able to test for your overall egg count based on the chemicals those eggs create in your body. They also look for other issues like thyroid problems and general health concerns that might be affecting your fertility. My doctor said the best thing I had going for me was my age. Most women at fertility clinics haven't had trouble conceiving until they are in their late 30's/early 40's. Egg quality is vastly more important than egg quantity, and egg quality is determined entirely by age (which is why the risk of chromosomal birth defects like down syndrome increases so much with maternal age). The fact that I was under 35 meant my egg quality was definitely good.

There was another test that I couldn't do that day since I was required to go into the Seattle clinic to have it done (my main clinic was in Kirkland, WA). This test is to determine if your body is releasing eggs properly and if the passageways that the egg needs to travel through are open. This is by far the worst part of not only the testing but everything else SRM had me go through in both the IUI and IVF processes. The test itself shoots some sort of ink into your fallopian tubes that highlights well, enabling the doctor to watch how it travels on the monitor. They'd encouraged me to take a large dose of pain killers before the process, though the amount of pain felt during the test will vary from woman to woman. I was not one of those fortunate enough to only feel mild cramping. I felt considerable piercing pain from the ink, and I don't think the drugs did anything to counter it. It was like digging the sharp point of a knife into my internal organs. I was cringing, huffing and puffing, and crying. They even have a baby mobile above the bed in order to distract you, but it didn't help any more than the pain killers did. Fortunately it was a short test, and the pain was over as soon as the ink had run its course. They give you a maxi pad and a washcloth since you're likely to spot a bit for the rest of the day, but there were no other side effects afterwards. When it was over they told me the good news was that the testing revealed that everything looked normal. In the moment I wasn't sure if that really was a good thing or not. I felt like I'd just gone through a whole lot of pain for nothing. A few weeks later when I got the bill and saw just how much my insurance had paid for that test (around $700), I was especially happy that I at least hadn't paid for that pain out of pocket.

After that it was a couple weeks of waiting to find out our test results. I was convinced that the problem had to be with Oscar. I'd told plenty of people that it just had to be him because there was nothing wrong with me. Men can't usually know if there's anything abnormal about their sperm unless they've been tested, while women with fertility issues are often clued into the issue by irregular menstrual cycles. As mentioned in part I of this post, I also felt like I'd be less of a woman if I was the one who had the problem.

The first thing my doctor told us at the results consultation was that Oscar had extremely high test results. She said they can usually find something that's below average in all the many small things they test for (most of which on their own are unlikely to significantly affect fertility), but Oscar's stats were good in every single area. In that moment I could feel my heart sink. Our fertility issues were clearly not due to Oscar. It was definitely me. It was the very thing I'd feared that had kept me from going to the fertility clinic for so many years - there was something wrong with me. I was broken. Even though inside I desperately wanted to cry, I laughed instead. I teased Oscar about having "super sperm," and later on would joke around with my friends about it. It was how I dealt with the pain. It was several more months before I would tell Oscar just how much it had bothered me. In fact, I didn't even realize that joking about it had been my coping mechanism until a friend was honest enough to tell me that he felt my reference to "super sperm" in his home had been inappropriate. It's been my experience that if I'm justifying doing something that someone could easily find offensive, it's probably because it's a much deeper issue for me than I'm aware of.

Interestingly enough, though, there was nothing obviously wrong with me either. With one exception, my stats were also high. She told me nothing in their testing revealed any reason why we hadn't been able to get pregnant. If anything our high stats meant that we should be able to get pregnant without difficulty. Our infertility is considered unexplained. I'd been dying to learn why I hadn't been able to get pregnant, and $1,200 in testing later (of which I only paid about $100. Thank you Independence Blue Cross and Comcast), I still didn't have any answers. My doctor could see my visible disappointment and confusion with our lack of conclusive test results, but she told me that those are actually the best results I could hope for. The major factors that affect fertility are also likely to complicate the IVF procedure, so these results at least revealed that we were good candidates for IVF. Male infertility in particular is not something you want to deal with while doing IVF. If the sperm aren't strong enough to enter the egg on their own, they have to inject them with a needle in a special procedure called ICSI (intracytoplasmic sperm injection). Although it's highly likely that the egg will fertilize due to this procedure, it's much riskier that the embryo will die since, after all, you've just punctured it. All that time I'd been hoping Oscar had infertility issues in order to satisfy my own pride, but now I'm thrilled he doesn't since our future IVF procedure would end up being uncomplicated and successful.

For whatever reason people have a hard time accepting that infertility might be unexplained. When I tell people that the fertility clinic didn't find any answers to explain our infertility in their testing, they often ask me questions like "well did they check for such and such, cause I've heard that can affect fertility." I find it hilarious that the average person would think they might know something about infertility that the fertility clinic, whose entire existence is dedicated to that very purpose, hasn't already heard about and tested for. Even my own OBGYN found it hard to accept. After my first visit, he left me with the impression that I was the first unexplained infertility patient he'd ever had. This surprises me since 30% of all infertile couples that get tested are unexplained. The actual statistics for most fertility clinics are 30% diagnosable issues in the woman, 30% in the man, 10% in both, and 30% unexplained. Two thirds of the unexplained group are diagnosed with something small, but overall it shouldn't be affecting their fertility as much as it has. A friend of mine's daughter falls into that group. She has a thyroid problem, but it's controlled with medicine, and her husband has slightly below average motility. The issues were diagnosed but should have been causing them only minor difficulties, not complete infertility. The remaining third of the unexplained group aren't diagnosed with anything and their infertility is a complete mystery. My doctor did diagnose an issue with me, but since she also said it wouldn't account even partially for why I hadn't been able to pregnant yet, I have no idea whether we fall into the "mostly unexplained" or "completely unexplained" group. 

The one issue they did find with me, though, is likely to affect the IVF procedure. Because of it, my doctor encouraged us not to delay assistant reproductive services any longer and made me wish I'd come into the fertility clinic years earlier. I have extremely low egg count for my age. I'm 30 years old with the equivalent of a much older woman's egg count. When I first heard this, I assumed it meant I was going to have an early menopause. Interestingly enough, though, menopause and low egg count don't necessarily mean the same thing. Although it's true that your egg count decreases as you age, contrary to popular opinion, menopause doesn't happen because you've run out of eggs. It's triggered because you've run out of useful eggs. At menopause most women still have about 10,000 eggs, but because you've aged they've also reduced in quality, meaning they're less likely to respond to the body's FSH (follicle stimulating hormone), making them unable to grow into functioning eggs. Even though I'm young and nowhere close to menopause, having low egg count complicates IVF since the drugs you're given are meant to help stimulate and release as many eggs as possible. Each menstrual cycle, your body builds up about 20 follicles, and only the strongest one of those is released for ovulation while the rest are absorbed back into the body and discarded. My low egg count means I can't produce even half of the 20 they'd expect to retrieve from a 30 year old. According to my doctor, though, my low egg count would have had zero influence over the fact that I haven't been able to get pregnant on my own yet. I might not have many eggs, but the ones I do have are good quality, and they're being released through my body normally and in a regular, timely fashion.

Prior to IVF (invitro fertilization), doctors will usually encourage you to try IUI (intrauterine insemination) first. Our doctor recommended we try it twice before moving on to IVF. Insemination is like putting "natural" fertilization into ideal circumstances. You're more likely to get pregnant through insemination than through sexual intercourse, so if you're using fertility drugs to regulate your cycle, you increase your chances of successful pregnancy with an IUI. I have a friend with PCOS, but fortunately for her, they can regulate her ovulation with drugs. She's gotten pregnant successfully 4 times with IUI, the last time with twins. Unfortunately IUI doesn't have a high amount of success for unexpained infertile couples like us. Still they want you to give it a try in case simple issues have been preventing pregnancy. IUI can help the sperm travel further than they normally would during intercourse if vaginal infections are creating a hostile environment or if there's an issue like a tipped uterus. IUI is also considerably cheaper than IVF (about $300 as opposed to $20,000), and many people feel IVF is unnatural and don't want to experiment with it for moral reasons. Though IUI isn't exactly "natural," people are less offended by it since it at least doesn't include removing your eggs from your body and then putting them together with sperm into a petri dish. Fortunately neither Oscar or I are bothered knowing the baby in my belly is essentially a "lab baby."

For the first part of your IUI cycle, you're given follicle stimulating drugs to make sure you do release at least one good egg for ovulation. Many will produce 2 due to the drugs, so there is an increased likelihood of fraternal twins. I produced 2 goodies in each of my IUI attempts. The man provides a sperm sample 2 hours before the insemination. During that time it is washed, meaning bodily fluids that aren't sperm are discarded so they can't impede the sperm in anyway, and only the highest quality, quickest moving sperm are used during the procedure. They then use a tool to clamp on to your uterus, which sounds more painful than it actually is, and insert the sperm as high as they can. It still has to travel to the egg on its own, but it doesn't need to go nearly as far as it would during intercourse, and it bypasses the main areas that small issues might be affecting.

The first time we tried IUI, I was given a drug called letrozole and told to purchase an ovulation kit. Typically women will ovulate on day 14 of their menstrual cycle, but it often happens a few days before or a few days after that. The kits give you 7 days worth of tests, and you start taking them on day 9 until you get a positive test result. I'd used an ovulation kit before in my attempts to get pregnant on my own, and it'd been completely ineffective for me. Not only did I not get pregnant, I never even got a positive test result. Because they're about $25 a piece, I didn't bother using it again. When I told the doctor this, she said that wasn't terribly uncommon. About 10% of all women don't test positively for ovulation from kits even though they do ovulate successfully. She encouraged me to come in for an ultrasound on day 11 or 12, and if the egg was developed enough, they would give me a shot to force ovulation. I figured that was better than possibly missing my ovulation from guesswork.

After being given the shot, you come back in for the insemination 24-36 hours later, your partner coming in a few hours before you. The process itself is a little awkward, but not painfully so, and it's relatively quick. Afterwards they recommend you lie on the bed after for 5-10 minutes, and I think I stayed there about 20 minutes just to make sure. They also recommend you have intercourse that night because they know you're definitely ovulating, so why not send as much sperm to the egg as possible. I had a bit of low abdominal cramping prior to the insemination and for about a week afterwards, which was a new experience for me. I hoped that would mean successful pregnancy, but unfortunately, it ended up just being my body's natural response to the drugs making me extra fertile. My period came 2 days early, which is, of course, because my ovulation was triggered two days early. According to my doctor, the amount of time it takes to get to ovulation can vary from month to month, but the amount of time it takes for the body to progress from ovulation to menstruation is typically pretty consistent.

Because my body had felt different from any other menstrual cycle I'd ever had, I have to admit, I did get my hopes up for getting pregnant, and I was pretty crushed when it didn't happen. We'd followed all of the recommendations, and both eggs looked ready to go on the ultrasound, so why didn't it work? It was after this first failure that I looked up IUI online and learned that couples like us didn't typically have much luck with IUI. The procedure is really only helpful beyond intercourse if something's been preventing the sperm from reaching the eggs. If there's nothing wrong with his sperm counts or quality and you don't have any issues that are blocking or making a hostile environment for his sperm, they've probably reached your eggs many times already in the years you've been trying to get pregnant on your own.

Based on my husband and my test results, my doctor didn't believe that the sperm not being able to reach and fertilize a functioning egg was our issue, which is why she didn't think any more than 2 IUI attempts were necessary. What the body does with an egg once it's fertilized, though, is something the fertility clinic can't test for. Doing so would require having you under close, constant observation and vaginal ultrasound for 5 days straight, so it's not exactly practical. Normally a fertilized egg remains where it is for 5 days before traveling through the fallopian tubes to implant itself in the uterine lining. Thanks to the awful test mentioned above, we know my tubes are open and able to carry embryos through them, but we have no idea if my body is actually doing that. If that's the issue (which in my opinion it is), then 20 IUI's aren't going to help the situation. The good news though, is that many women are able to get pregnant with IVF, and then are later able to conceive on their own. IVF implants the embryos directly into your uterine lining, and unlike intercourse or IUI, they never have to travel through your fallopian tubes. It could be that the reason for successful pregnancy after IVF is that your uterus has now had the experience of nourishing an embryo, something the body was previously unfamiliar with. Rather than flushing out the embryos like it's done in the past, the brain adapts to the situation and now knows where to send an embryo when it finds one.

We made our 2nd IUI attempt the month after the first one, but this time I didn't have much hope for it. Of course I still had a little bit of hope as the days progressed towards the end of my cycle, but I was much less disappointed when my period came. It might not have been successful, but I do have a funny story to tell about it. I thought it might be worth trying a different type of ovulation kit rather than just assuming that they didn't work for me at all. The first kit I'd tried was "First Response" and this time I went with "Clear Blue Easy." I got to day 13, and I was sure it should have responded by now (it should be positive by 36 hours before you ovulate, and on a normal cycle, you would ovulate on day 14). I was beginning to worry that I'd missed my ovulation entirely. I called my nurse and left her a message asking what I should do. I then drove down to work. My first delivery was for the Seattle Reproductive Medicine office in Seattle. I literally laughed out loud when I saw it. After I'd made the delivery, I told them I was also a patient and that I was worried about having missed my ovulation. My nurse from Kirkland called me back in that precise instant and said "yes, come in for an ultrasound." As long as I was already in Seattle, I figured I might as well have it done there, even though I still had deliveries to make. How many delivery drivers can say they had an ultrasound in the middle of their route at the same place they'd just delivered to!? Fortunately I had not yet missed my ovulation (though I was very nearly there), and they went ahead and gave me the trigger shot. I still took the tests for the next few days, but I never had a positive result even after being forced into ovulation. Now I'm convinced that I am definitely unresponsive to urine ovulation tests. Once again our pregnancy attempt was unsuccessful, and if there's anytime IUI was going to work for us it would have been this one. My eggs were definitely ready to go since they'd had 2 more days of growth than the last cycle, but alas, no luck.

After the 2nd IUI was negative, we began preparations for IVF by starting me on birth control for a cycle. It seems a little backwards, but apparently "it decreases the chance of getting ovarian hyperstimulation syndrome and ovarian cysts and may even improve the odds of success." I was nearly finished with that round of birth control and about to have my expensive IVF drugs shipped to me when I got a notice from my insurance saying they wouldn't approve my request for IVF until I'd tried one more round of IUI. This was rather irritating since A) I knew it wouldn't work and B) we'd wasted this entire month in which we could have done the final IUI had I known I needed to make 3 attempts. This now meant waiting for this cycle to end, going through the process again, and then waiting yet another month to start IVF. I had zero hope for the final IUI. I was doing it entirely to satisfy my insurance, and going in for the appointments was more of an annoyance than a hopeful anticipation. When the procedure was over, instead of lying there for 5-10 minutes, I got up and left. And just like the other two, it was fruitless. I'm happy, though, that all of my failed IUI's were followed by slightly early periods. At least they didn't tease me into believing I was pregnant when I wasn't.

The next month I decided I needed a little break before I started the process again. I let my body have a normal cycle. If there were any truth to the myth that you just need to relax and stop trying so hard, we would have certainly gotten pregnant that month. I started on the birth control again the next month, but this time I ran into a conflict with a show I was doing.
My egg retrieval and transfer days were scheduled very close to our dress rehearsals. I told my directors about it, and they were concerned that I might harm the process by trying to be involved in the show and do the procedure. The doctors encourage a day of rest after egg retrieval day, particularly since you were under anesthesia and may be groggy. And after egg transfer day, they recommend you keep off your feet for a couple of days. Though technically you can't jiggle the embryos out from activity, it's good to rest and recover since you've just had minor surgery. I ultimately decided just to delay the procedure, but since we were going on a 4 week vacation only a few days after the show was over, it made for a fairly long delay. After originally intending to try IVF in February, we weren't able to do it until August. 

And don't miss the last installment shortly to come "Our Experience with Infertility Part III - Invitro Fertilization (IVF) and Pregnancy."

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