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Thursday, April 12, 2007

The Diagnostic Blilt Unraveled

The squares on the quilt only represent part of the story. Read below to hear the larger reaction of each stirrup queen or sperm palace jester when he or she received that infertility diagnosis. Contribute your own reaction to your own diagnosis in the comments section. The Blilt projects are always open and we will be continually adding to them as new words come along from future members of the infertility and pregnancy loss community. Click on the hyperlinked words in order to learn more about the Virtual Quilt Project and how you can contribute.

When I was first diagnosed as infertile...

"Broken" - that's probably the first thing that came to mind. I've felt broken for so long (through the miscarriages, through losing Thomas and now dealing with infertility), I'm not entirely sure if that's the first thing the fell into my head or if the feeling just intensified, but when I think of trying to have a baby, broken is what comes to mind (from Certainly Not Cool Enough to Blog).

"I knew it was bad. . .but this bad" was my first thought when I found out that not only were we battling PCOS, but blocked tubes and mild MFI as well (from Sean and Mary's Family).

I knew in my heart from the time I was small that I would have problems having children, but I also knew it was the one thing that I wanted more than anything. We never received a diagnosis. We just reached the year mark. The two year mark. The three year mark. Things failed and failed. I think around the time we started seeing an RE (a year in) and I was officially infertile, the feeling was that things would work out. But often it's more like "I always knew this would happen. But holy crap, this is my LIFE" (from the private blog The Problem With Hope).

I've got to say that I didn't really believe I was infertile (despite being signed on with an RE, 5 failed IUIs and a cancelled IVF) until very recently...and now: I feel marked, broken and doomed (from You're Still Young!).

My dream life died! I had so many plans; I couldn't wait to see R with our baby. He gave me so much when we got married--he asked me to be a mother to Little H, and I couldn't return that sentiment because I couldn't make a Little anyone. And then my uncle passed away, the man our child was to be named after. At that point, I went from being infertile to being defeated and no longer whole. The last little dream I had held onto was telling Goofball that I was pregnant and that I was naming the baby after him, and that dream disintegrated right in front of me (from Making Toy Soldiers).

I knew that I wasn't going to let having to do IVF get in the way. I would go forward and keep at it with a determined, head-strong perseverance. I still feel this way. Even though it definitely gets me down, I still think that I just have to keep plowing through and eventually I'll get to my goal. It's just taking a lot longer (and a lot of different routes) then I originally expected (from Sticky Feet).

I felt a rising sense of panic. The day I decided to call my OB/GYN to ask about starting the fertility testing process was also the day I found out an acquaintance was pregnant. As soon as I read her e-mail, I ran to the office bathroom and just bawled for a good half hour. Then, fighting panic, I dialed the number to my OB's office and made an appointment (from This Sorta Fairytale).

My first thought, on hearing that my initially "slightly elevated estrogen" was actually masking high FSH (and therefore, "diminished ovarian reserve") was, "This can't be happening. I'm not THAT I?" (from This is NOT What I Ordered).

"Falling apart, body, mind and soul." I'm still picking up the pieces and trying to glue them back together (from Max's Mommy).

When the RE looked at my file and blood work, she quickly came up with my same conclusion that I had. PCOS. By this point I had gone to my primary care and a gyno - who both told me that I didn't have it because I wasn't overweight. Err---I wanted to call them up and tell them "I told you so!" And to refer them to RESOLVE (from Flutter of Hope).

Because we'd had several SA by that point, I wasn't at all surprised. In fact, I was glad because now we could move forward and do something. It was a little shocking to be told that my husband's sperm count was so bad that IUI was out of the question, but the unthinking steam roller part of my personality came out and just started working on the practical aspects of the problem. We were scheduled for a cycle by the time I left the office (from The Twinkies).

We never did get a diagnosis but after the first MC I can remember a small gurgling starting deep in the pit of my gut that grew to a wailing “WHY! WHY! WHY!” when it reached my lips (that wailing continued in my head for months). I can remember many days standing in the shower absolutely WAILING the words “WHY! WHY! WHY!” as I bawled. I used to turn the water up so hot it would sting my skin just so I could feel something besides the pain in my heart. Now that we are moving forward with adoption my whole outlook has changed. I’m reminded of a phrase my Grandmother always used … “Nothing is so bad that it aint good for somebody”. It took me years to understand what she meant. She was a very wise woman (from The Spirit of Magnolia).

Since I have known that we would have to do IVF (for male factor) for so long I was in total shock that we had female factor also. My first thought was "You've got to be kidding me" (from Changing Expectations).

I felt relieved. I went into the appointment thinking it was just all in my mind, that I wasn't ovulating, or that they wouldn't be able to tell why. PCOS really sucked, but I liked having the label and knowing there was a treatment plan. In fact, I really should have known better, having gotten that as a possibility when I was 18, but a lot a time had passed (from Southern Infertility).

"Finally. Let's get started." I think that's pretty much how I felt. In the months leading up to the "diagnosis" (which in our case was simply hitting the one-year mark), I had little to no hope of actually getting pregnant spontaneously. I was just waiting for the clock to tick over so insurance would cover us seeing an RE (from Relaxing Doesn't Make Babies).

My first thought when we were first diagnosed. Everything was in slow motion. It's like screaming... "No this can't be happening to me." "No not me." I guess I was immediately pushed into denial (from Baby Blues).

Endometriosis? I thought my life was over. I got diagnosed while I was single and before I'd ever tried to get pregnant. I'd been in so much pain that I was looking for a binary yes/no answer about whether or not I could have kids, because if I couldn't, I was going to have a hysterectomy to end the pain. Instead, I got a "Maybe, but it will be harder, and you may have more miscarriages." So, keep the uterus, but then what? My biggest fear at the time was that nobody would want me with such obviously broken parts. Well. Second biggest fear. My biggest fear was that they would stop making Vicodin, because Jebus, the pain (from herveryown).

My initial reaction was mostly a nonreaction. I knew we were going to have problems so it wasn't a surprise. After recent setbacks my reaction has changed to disbelief that it's taking so long and hopelessness that it will ever happen for us (from Peace of Mind Is All I Want).

I was so not surprised by the PCOS diagnosis. Just angry that we didn't know sooner. It was my first object lesson in needing to make myself heard by doctors. I'd known for over 10 years that something wasn't right, but no one took it seriously. Now I really understand about being my own advocate (from Our Own Creation).

Comfort him. Reach out and comfort him and make it somehow okay. An Explanation: We were told my husband's low sperm count and morphology made it impossible to conceive without IVF with ICSI. That simple. That complex (from Within the Woods).

I wasn't completely shocked to find out that I had PCOS. It was 6 months later, when we went for our followup when we were ready to start IUI's that we found out my hubby has a low count, plus very low morphology. At that point, I had already come to terms with the fact that it was all on my shoulders. My first thought was "Thank goodness it's not just me" (from A Sibling for Celia).

Like Msfitzia, "broken" was my first reaction too. Later: devastatedly confused and hopeful.
Broken has been the most resounding feeling though -- my stupid broken body (from Exile in Kidville).

Foggy. I remember hearing my doctor at my ear during my recovering from my lap saying, "This was the worse endo I have ever seen. We couldn't remove it." Shocked. I had no symptoms. Okay after the fact I did--but nothing MAJOR! My cycles were perfect. WHY ME! Numb. There was NOTHING I could do to fix Stage IV Endo. I just had to deal and move on. The best way to do that was to just not feel and be numb. I NEED A DRINK! Was my last reaction. I totally need a HUGE drink! (from My Journey Towards My Little Miracle).

That had to be one of the worst days of my life. I had survived much before the diagnosis, death of several close friends and family members I loved, divorce, two miscarriages totaling four babies, and yet this was what brought me to my knees. I felt guilty that the diagnosis hurt more. I felt anger that it wasn't something I could fix. I felt even angrier that nobody had noticed this before when there was ample opportunity. I was in denial for a while, then shock, and now I am in a place where I just don't know what to think about it. I was never able to put into words how that day felt for me. I instead shifted all of my thoughts and emotions into the technical realm. This is what an HSG is and these are articles on my condition. I couldn't go to the place where you have to emotionally explain and explore what was happening. It was too hard (from Are We There Yet?).

My first thought when we got our severe male factor diagnosis was "But we can't FIX that!" And then it was "what do we do now?" (from Serenity Now!).

Here's what I thought sitting across from Superdoc as he recounted our results: Are you kidding me? We're NORMAL! It was like a death sentance. Both of us are fine! There's no reason why we weren't getting pregnant! Fan-fucking-tastic (from Unexplain This).

I can't remember my first thoughts but when the world started to fade back in (it was my 22nd birthday and the doctor told me that there was a 10% chance that I would EVER have a child), my first thought was - "Maybe we can adopt twin girls from Brazil" (from Fertility Musings).

Well, I had so many things running through my mind four years ago when we got our diagnosis, but the ones that stand out are: Oh, CRAP! Does this suck, or what?. What did I do to deserve this?. Well, that fertility monitor was a total waste of money. And really, disbelief. I really thought that the testing we went through would show that either I didn't have the problem, or that there was something so minor that it could be easily remedied. I was so unprepared for what I'd heard, it didn't register at first. Only later, when I was alone, did it hit me like a Mack truck-this was going to be my life, like it or not (from Infertility Sucks).

Relieved. I was under the impression that once we had a diagnosis we could fix it and move forward quickly. Ha! (from Fatty Pants).

We were never given an exact diagnoses therefore never had an "A Ha" moment. But after uncountable iui's medicated & not, two failed ivf's and a look into a future that might include 3 more ivf's (one with a possible move to donor eggs from a younger sister) the continuing thought is ...but I'll still get pregnant, right?... Talk about a head stuck in the sand. Oh well, my head can stay in the sand until I emotionally can't take it anymore. Then I know I'll have to re-think my thought but I'll jump off that bridge when I have to (from the private blog Knock Me Up).

I felt as if someone had died. My grandfather had died the week before we got our diagnosis, and I felt the same feeling of loss in both situations (from Subfertile Sadness).

"You made me wait." I was devastated and so hurt by my husband because I told him over and over again that time was not on our side and his only answer was to be patient. Patience would never have gotten us pregnant. And, yes, a part of me still blames him for our predicament (submitted anonymously).


Anonymous said...

Because of what I said, and thought, I can't say it anywhere but here. But all I could think or say was:

"You made me wait."

I was devastated and so hurt by my DH because I told him over and over again that time was not on our side and his only answer was to be patient.

Patience would never have gotten us pregnant. And, yes, a part of me still blames him for our predicament.

Anon for this.

The Town Criers said...


I'm sorry that you have to go anon, but I wanted you to know that I'm making a square on the quilt for this and adding it. I'm sorry that you had to wait. I hope despite the waiting that you get the happy ending.

PCOS Fund for Laser said...
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