Friday, January 15, 2010

Introduction: My History with Hypothalamic Amenorrhea

I've decided to start blogging my way through my journey towards motherhood. Partially so that I can reference this in the future, and partially for others out there who might stumble across my blog and find it a comfort. Or those who might know nothing of infertility but would benefit from a glimpse into its twisted depths (which would be most people).

I'm currently 26 and have been very happily married for three and a half years. My husband is a graduate student, working on his Ph.D. in mechanical engineering. I have spent the past few years working full-time, getting my MA in English Lit, and then working full-time again. Ironically enough, I work with kids. I just turned in my thesis last December, and my husband and I had decided that our ideal timeline was for me to be pregnant and due sometime this spring, which we figured would put us in a semi-decent financial position and give me a secure job to potentially return to after maternity leave, should I choose to do so. So, I officially went off the pill last June, and we started TTC on July 8, our third anniversary.

Let me back up a bit. Back in high school, I used to weigh around 130 pounds at a height of 5'4". Not really overweight, but I have a small frame so it was actually a bit overweight for me. I got up to 140 the year after high school and decided things needed to change. So, starting that April, I embarked on an all-out weight-loss campaign. This was back during the low-fat craze (pre-low-carb craze), and so my method was to cut out almost all fat from my diet and exercise every single day. Looking back now, I can say I was bordering on a sub-clinical eating disorder--I was so restrictive and obsessive about it. Over about 4 months, I lost about 35 pounds, getting down to 106. And though I gradually loosened up on the eating and exercised over the next 5 years, I stayed around the same weight.

But. My period stopped coming. The last one I had was in April of that year, before starting the weight-loss crusade. After 6 months, my mother convinced me that I should see my OB about it, and I did. She basically said I had nothing to worry about, really, and just put me on the pill. I was 19. I tried going off the next summer because I didn't think I really needed to be on it, but still no period. At that point I started to get anxious about potential fertility problems, even though I had no idea why. My OB assured me there was nothing to be concerned about and just told me to get back on the pill.

Fine. By then, I was seriously dating the man who would become my husband. So I just stayed on the pill through the first 3 years of marriage. Always in the back of my mind was a fear about whether we would be able to have kids, but I kind of pushed it off and just hoped that since I was more moderate with my eating (or so I thought), I wouldn't have any problems. I include this because it gives a little more background on the anxiety of my fertility journey. Basically, ever since I was 19, I haven't been able to see friends get pregnant and have babies without an impinging feeling of fear. About a year and a half ago, we found out that my younger sister-in-law, who had been married less than a year, had gotten pregnant accidentally. I admit with great shame that my initial reaction was extreme anger. Why couldn't she figure out the birth control thing? Why did she have to upstage us? We should have had the first grandkids, if she and her husband could only figure out the planning-ahead thing (which, pregnancy aside, they really do suck at). I couldn't believe that was my reaction and I worked through it with God and my husband, but there it was.

So, back to last year. Took my last pill June 23. Lived in ignorant bliss for exactly one month, hoping good ol' Aunt Flo would show up right on time and I would have nothing to worry about (or else be pregnant). On July 23, nothing. Tried to hold back the anxiety, but didn't make it very long. I eventually started emailing my OB, and she ordered a bunch of bloodwork. Everything was actually fairly normal, so we tried progesterone for a week, which she guaranteed me would cause a period. Nothing. Well, lots of cramps. But no blood. More bloodwork and an appointment which included an ultrasound. She finally diagnosed me with hypothalamic amenorrhea, which means my brain wasn't sending the signals to my body to ovulate. She referred me to an infertility specialist. I found out the appointment with the specialist would cost $516 out of pocket and went right back to my OB. No way could we afford that much just for an appointment, and clearly any treatments would cost much more.

Meanwhile, lots of freaking out and crying.

Also meanwhile, I stumbled across the Hypothalamic Amenorrhea discussion board at FertileThoughts. Finally, some answers. There are actually a lot of other girls out there with HA! And most of them have been able to get pregnant! Their answer? Gain weight.

Ouch. At that point, I could hardly stand the idea of gaining weight. I was quite attached to my size 0 body. But, slowly but surely, I began to accept that I just needed to do it. So, I started gorging myself and gained 7 pounds in one weekend! I made it up to 115 and kind of camped out there for a while, hoping I wouldn't need to gain more. My OB had taken pity on me and done some of her own research on HA, even contacting  her RE (reproductive endocrinologist) friend to ask for advice. She suggested that we start with clomid. So DH (dear hubby) and I talked it over and decided to start a cycle of clomid right around the beginning of November. I picked up the prescription at the pharmacist and waited--and prayed that something would happen naturally.

Though I had been pretty religious about checking my CM, CP, and temping every day (these are infertility code words for cervical mucus, cervical position, and taking basal body temperature), I had basically given up that anything would happen and stopped reading into them. Then, about a week before I was planning to start the clomid, I noticed that my boobs were really sore for a couple of days. Then, all of a sudden, my BBT shot up from the upper 96's to the lower 98's. I had ovulated! I couldn't believe it! I got my progesterone tested just to be sure, and the ovulation was confirmed. My period showed up 10 days later. I was ecstatic! I couldn't believe my body had done its thing on its own after six years!

DH and I were more prepared with the BMSing (baby-making sex) the next cycle. I ovulated on day 33 and endured a gut-wrenching 2-week-wait, reading into every symptom and doing everything I could to think about other things. I had gotten progesterone suppositories from my OB to lengthen my LP (luteal phase--time between ovulation and period, which should be around 14 days but had only been 9 for me the first time). I had just about the worst pms I've ever had, but I was holding out hope that the awful cramps were a sign of a little fertilized embryo getting cozy. In the meantime, we spent Christmas break with my in-laws, hearing about little else than my adorable niece. Okay, maybe that's an exaggeration. But that's how it felt. I guess I expected a little more sensitivity on their part since they knew what was going on. But really, I don't think anyone who hasn't gone through infertility has much of a clue how it feels, so I can't expect them to simply not mention their cute granddaughter ever around me. That would be even weirder, I suppose.

After 18 excruciating days (and three or four negative pregnancy tests), my period finally showed. Even though I knew we only had a 25% chance, I think I had been so worried about ovulating for so long that I felt like once I finally ovulated, the problem would be solved. So many of our friends seem to be able to get pregnant on the first try, so when we didn't, I was crushed yet again. Yet again, intense negative emotions for no rational reason.

And here we are now. I'm on day 18 of my third natural cycle. The emotions of all this are just killer, and there's no way around them. I trust that God is sovereign and that he loves me, but I fear how much suffering he's going to take me through. DH had been reminding me to take this one day at a time, and to focus on all the many things I have to be thankful for--that I was diagnosed so early, that I found the HA message board, that I only had to gain 10 pounds, that I'm cycling. But it's hard not to focus on the fact that with a cycle as slow as mine has been, I only get half as many chances as anyone else. So this could be a long journey, folks.


myinfertilitywoes said...

Thanks for visiting my blog this week! I came by and often find it helpful to read someone's first post, particularly if it was recently. Looks like we've been blogging about the same amount of time - nice to 'meet' you!

I love your intro "about me" up top - my husband recently said 'i know we'll have kids, either our own, or asian or haitian' and I had actually added or ethiopian or guatamalan! Made me laugh to read yours - your own, chinese, bolivian or kenyan! :)

Josey said...

Ooooh - I so understand your frustration with half as many chances. My last three cycles were 56d, 49d, and 118d (forced a new cycle to start with Provera) and since I've been charting BBT, no ovulation. I look forward to reading more about your journey!