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Wednesday, December 20, 2006

Merry Christmas! Here's Your Diagnosis

What if, amid all the wrapped and ribboned gifts there was a little jewelry box straight from the great Infertile Santa and his barren reindeer himself (he's the gift giver at my IF Christmas) given to all with unexplained infertility--the gift of a diagnosis? You'd grab it, right? It would be the first gift you'd open because you'd finally have an answer.

Unless what you want is not an answer but a solution. The key to unlocking your uterus and getting a baby to stay in there for nine months.

I know the grass is usually greener on the other side, but regardless of which side of fence you're currently standing, the methods for getting one pregnant are usually the same regardless of diagnosis. You would still be taking the same medications and doing the same procedures, only now with understanding the reason behind the actions and what these drugs and procedures are supposed to be correcting or circumventing. A diagnosis may save you some time and catapult you past certain steps (no reason for an IUI if your tubes are blocked). There are some diagnoses that come with specific solutions that may or may not be the key that turns the lock--certainly clearing up endo or removing a septum is going to help increase your chances if your diagnosis is endometriosis or a uterine anomaly.

And there are some diagnoses that make the decision for you so that you can stop trying in peace. Though medical science has a funny way of still bringing up the what ifs even in the face of poor statistics. But, regardless, there are times when a diagnosis is helpful to have in the sense that it gives you limits. It can help you move onto a different path.

But beyond these basic advantages to having a diagnosis, at the end of the day, it's the same procedures and medications used on both sides of the fence.

The other side of the diagnosis is the guilt and the loss of hope. What is wrong is not always fixable, which is why sometimes answers just suck. I don't want an answer; I want a solution. Even if your reason for infertility is treatable, the treatments don't always work.

It's just me writing from the other side with a diagnosis in hand, looking at the unexplained side and thinking, "maybe it would be easier for both parties if no one knew why." Because while you don't want it to be the other person's problem, you also don't want it to be you. I didn't want my husband do have to undergo any painful procedures or be saddled with guilt AND I didn't want that for myself. In the end, his SA came back fine and my tests came back every time with another answer. Low progesterone. High FSH. Poor responder. Clotting disorder (hey, that almost rhymed!).

Even though my husband has never made me feel guilty and has been only supportive. And even though I don't feel guilty that my body overproduces cholesterol putting me at risk for a heart attack or feel guilt over any other medical issue that indirectly affects my husband, I feel so guilty that I'm the reason we can't conceive. I'm the reason we spend all this money and I'm the reason that for a long time, we had no children. And if I don't go through all of this, I'm the reason we won't have children. Sometimes, I feel like I have to put my body through treatments simply because it is my fault. That if my husband wanted to choose adoption, I could go that route. But since this is all my fault, I should be willing to do anything to conceive if my husband wants a child biologically related to him.

Which I know isn't rational and believe me, my head knows something much different from my heart. But my heart sometimes has the louder voice. It's almost as if my head speaks to me in my calm, Maryland accent and my heart yells at me in the voice of my Hungarian great-grandmother. And guess who wins out in a shouting contest?

But, again, this is just the grass always being greener on the other side. Which is why I want to hear the other side too. Plus, Kris, who is seriously tuned into the same wavelength as me (and we both jotted down this idea to one another back at the beginning of November), said that she was kicking around this idea too. Start writing, Kris!


Anonymous said...

Ahhhh yes. The guilt. We were unexplained until our first IVF cycle when I responded "poorly". No, no, lets try a different protocol.... etc. Turns out I was a "poor responder" with DOR. I question if this is really a diagnosis.... I mean, what caused it? Why is my FSH normal, but my ovaries don't do what they are supposed to do?
DH and I considered adoption. I have a brother who was adopted, and he is no different than my bio brothers. In the end, DH wanted that bio link. So, we went through a successful DE cycle. Was this more difficult than adoption? I doubt it. A DE cycle is a breeze compared to a regular IVF cycle. And no one is evaluating your "worthiness" as a parent.
I would like a solution to our infertility vs a diagnosis. But neither are applicable now, as we have 10 frozen blasts to finish our family with.
I wish you peace with whatever path you take.

Anonymous said...

You're the reason he wants to conceive.

Remember that.

Anonymous said...

I had all kinds of conflicting emotions when we got a diagnosis. At first I was elated--we finally had answers! After a few weeks, though, the reality of the situation started to settle in, and I began to worry about the ramifications of the diagnosis. Certain avenues were closed to us once we knew what the problem was, and that scared me.

As for guilt, I felt it, but in a somewhat bizarre way. Because the cause of our infertility was an infection I got from my husband, it was easy for me to simultaneously feel guilty about being the one with a fertility problem and angry with him for causing that problem in the first place. Those feelings are still unresolved, though we're talking about them.

GLouise said...

We fall into the fabulous "unexplained" diagnosis. I personally feel that, as you pointed out,most REs treat infertility the same way, they aren't as anxious to come up with a "real" diagnosis.

Of course- like demummie, I turned out to be a "poor responder" to the stims. But I don't think that is really a diagnosis, as my FSH is still OK.

Very's enough to make a girl yearn for PCOS!

Anonymous said...

I understand the guilt over diagnosis, both male factor and female. And my DH and I have both gone through that.
But, big but, without a proper diagnosis, lots of couples end up wasting thousands of dollars and years on treatment that can't work. I know one off the top of my head, who kept hearing just do clomid, just do this or that, and really they needed IVF for scarred & semi-blocked tubes. (HSG showed dye coming through, but not a chance in hell it would work for an embryo)
Four effin years they wasted...
Plus with my clotting disorder, as with endo, PCOS, and POF, it can effect the rest of your body and health for the rest of your life.
Any disease diagnosis can cause guilt, but a good relationship can erase that.

Anonymous Infertile said...

Every month I feel the guilt. Everytime that I tell him though that I feel so guilty he can't understand why. He sees this as 'our' problem while I can't stop seeing it as 'my' problem. I am the one who has to go to the dr., I am the one who has to take medication, I will be the one shooting up.
There are times when I get especially frustrated because I feel like I need J to be doing something or going through some of the stuff that I am going through so that he can understand. I have started making him go out and buy hpts and opks just so that I feel like he is a part of this.
We have had a diagnosis since the first 6 months (PCOS) but part of that diagnosis came with a problem that has yet to be fixed. I have PCOS which causes my insulin to be high so this should be an easy case and some meds should help me out. But, mysteriously, I am taking numerous insulin medications to no avail - a medical mystery I have been told! So, if you get that diagnosis but that doesn't help because no one can figure out how to fix it or get around it, what good is it?


Jackie said...

Wow, I feel like I could respond to your post and the comments for days. I keep going back to read it all so that I don't miss anything.
Our diagnosis is unexplained IF. And while it has certainly been frustrating not knowing which link in the chain of events is broken, it indeed does not significantly alter the treatment course. I have read other bloggers with unexplained infertility making statements that it is harder than having a concrete diagnosis in hand. Despite the frequent pity parties I throw for myself, I am extremely reluctant to agree. The part that is hard is being infertile at all. Period. Sure it's stinks that I don't know why. But this goes back to trying to compare pain. Or trying to grade or scale infertility. I won't take part in that.
Admittedly, I was guilty of something similar early on, namely, thinking that since I have a PhD in Endocrinology and Reproductive Physiology, somehow I was especially put upon with this unexplained diagnosis. Which is total bullsh*t. Hunching over my laptop all night, poring over the primary literature, analyzing the meta-analyses, trying to remember all the neuroendocrinology of the menstrual cycle, etc. etc. Where does this get me? And is my perseverating affliction any different than any other infertile individual's? I think not. We may only direct our energies differently (Dr. Google or Dr. Pubmed? I’m guilty of both!). And, in the end, I want a solution.
My husband and I are each convinced of our own ‘guilt’ in this matter. Who knows what the truth is. Sometimes it adds levity to the situation, me stating that I have crap eggs, him asserting that his sperm have no sense of direction. We let each other off the hook this way. I don't know how the guilty feelings would change if we knew or whether one or the other of us would find it difficult to cope with that knowledge or guilt.
All of that said, if you handed me a box with the diagnosis, I would snatch it open and read the diagnosis. In a heartbeat.

~r said...

When I met B, I'd already been through a few years of failed trying in my first marriage and was just sure I was the problem. I had so much guilt from that - although he went into our marriage knowing I probably had a problem, I felt like I was failing him, that he deserved better.

.. and then the first problem discovered in our testing was with him. That was the last time I ever let myself think of IF in terms of 'fault' or 'guilt'. Very easy for me to put the blame on myself, but I would never blame B for something out of his control. In a way, I'm grateful his problem was discovered before mine, because it freed me from the guilt. When I look at him and see love and not 'fault', I know I have to be able to look at myself the same way.

Anonymous said...

A solution, for preference. But I think I'd take a clear-cut prognosis for second best.

Uncertainty - whether you have a diagnosis or not - is what kills. I felt good about having an explanation at first, then came the unexplained spotting and the unexplained failed cycles/chemical pregnancies, and everything seems doubtful again.

On the other hand, I'm very grateful for the decisions I didn't have to make. Should we keep trying naturally a bit longer? (No, that's silly.) Should we do another IUI? (Dreaming, dreaming I tell you.) There's something to be said for just knowing what to do.


Anonymous said...

You got it, babe. I wrote it rather quickly, though, so I reserve the right to revise and resubmit!

lunarmagic said...

I hate not knowing. I've always hated not knowing. For me, even if the truth was horrible, at least I would KNOW. We are "unexplained." What really sucks is the waiting, the not knowing... is this cycle going to work? Did the IUI bypass whatever "problem" we had? Do we have a real chance this time? Or are we just going to keep getting negatives because there's something going on that we don't know yet? It drives me batty. Maybe I would totally change my opinion if we got a diagnosis... but to me it's sort of like when you're waiting for AF to hit (like now). The uncertainty sucks. AF is NOT the answer I'm looking for, but if she comes then at least it's an answer and I can start the process of moving on. Without an answer, I can't settle down.... limbo sucks.

Anonymous said...

I absolutely prefer having a diagnosis - uncertainty and I do not get along. And once you have a problem you can begin to figure out how to overcome it.

And I will chime in with the person who said that they didn't feel like their doctor really tried to diagnose them - I feel that way, particularly since I have to go in AGAIN for surgery to properly diagnose Ute - after 4 failed IVF transfers. I am not blaming my doctor, but I would be WAY more pissed if we had paid for that cycle out of pocket, instead of it being covered under insurance. And I can't help wonder if because my insurance covered it, my RE didn't put enough effort into diagnosing me.

As for feeling guilty - there is some, yes. But we are fortunate enough that the both of us have issues - him with MF, me with a uterine anomoly. So there really isn't much that we can do except for commiserate - and make decisions that are best for us.

TeamWinks said...

The guilt of knowing, it's all me, it's probably not fixable, and even if I fix me, I won't work properly. That's a heavy heavy burden, and it's the strongest threat to my womanhood I've ever had. I have my answer, and most of me is thankful. However, when things happen like I posted about yesterday, I'm remided how "damaged" I am.

There's so much more to say, but it's so bunched up on the inside, and won't come out right. Perhaps I just need some time to think about it more.

Anonymous said...

I went through almost 2 years of uncertainty and now that we have a diagnosis (even though I was pretty sure what it was all along) is a much more peaceful place. There is still a lot of uncertainty because we have to do more tests to see if my husband has obstructive or non-obstructive azoo, but just knowing makes things better. I just had my first ovulation since the news and there has been no crazed woman needing to do it NOW. I know my period will come and go with out all the stress of wondering if I actually could be pregnant. I guess with that I've lost a little hope, too!

I know my husband is carrying a lot of guilt right now. He doesn't talk about it much, but when he does I know that this is and has been tearing him up for a long time.

What is even weirder is that I've had feelings of guilt over the last two years for wanting to have a baby so bad. I think sometimes that if being a mother wasn't my biggest goal in life we wouldn't be hurting so bad right now.

Lisa P. said...

I think I could handle it if we'd had one diagnosis over the years we've been trying -- but every time we go it's something new. Now DH's motility/morphology is low -- was that the case when we got pregnant twice? or was it my septum? My progesterone was low last month, but this month it's fine, so the doc's backing off on the Clomid suggestion and sending us back to the RE. I feel like a pinball and am just really tired of reeling from some new problem once I've had the chance to adjust to the previous one. *sigh*

Jessica said...

If I could have a diagnosis, I would take it in no time. Maybe it's the engineer in me. So I have a system that's working sub-optimally. We should be able to figure out why it is working sub-optimally and fix it. Oh, but we can't figure out why it's not working optimally, so we don't know what to fix. I have a hard time dealing with that. It's hard for me to say how we'd handle the guilt knowing it was one or the other of us, since we don't have that diagnosis. But I can't help but think I'd feel better if I knew what was up. Even if that meant we knew it was impossible. Then we'd know to start looking at other options to grow our family now rather than going through all of this infertility treatment stuff.

Anam said...

guilt is a horrible emotion :( i remeber when we were first told 'no way' to our own kid, i lsot it and my hubby said 'i didnt marry your womb' i married you - i love you - your womb comes with you and i accept all of you - we'll work through this together. i'd rather you than someone else with a reproductive system that is perfect." made me fall for him all over again.

sarah said...

We are techinically unexplained (though most of the glaring looks at the docs office are directed at me) and for a long long time I've been hoping for a reason. Not knowing why I'm not getting pregnant when all systems appear to be lining up perfectly is crushing. I ovulate like a champ, dh's has great numbers on all tests, lining is always fluffy and lovely, etc. Our docs have no idea why we aren't pregnant.

One doc we consulted suspected that even though my tubes spilled on HSG, that the passage may be too narrow to work properly. I was ecstatic that we would have a reason for our failures and hope that IVF might be the way to get around our issue. But two other docs looked at the films and were suspicous. I doubt we'll ever know.

For me, and for us, I want to believe that we have some issue that IVF will help us bypass. That something unknown was standing in our way all this time. If there isn't anything in the way and it's just terribly bad awful luck, I feel miserable.

May said...

As far as we know it's all my fault. I have PCOS. I am also overweight and extravagantly mustachio'd. At the moment my doctor won't treat me with insulin resistance drugs, because he wants me to lose weight on my own and see if that sorts it all out. So every day that I am still fat, and still not ovulating, it's my fault. I hate feeling like this, and I almost hate my doctor for leaving me in this situation. Being diagnosed has left me more out of control than ever. It's all dumped back into my lap as my problem, that I have to sort out, by losing weight. Sick to death of exercising and food avoidance, and for what? Nothing. My weight is not shifting. And now I have to deal with the fact it's my fault, I damaged myself by 'letting' myself get fat, and only I can do anything about it. That I have so far been unable to do anything about it leaves me raging and helpless and full of self-disgust.

Or perhaps I should change doctors?