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   Wednesday, December 29, 2004  

Anniversaries of a sort

Today is my anniversary. The one year anniversary of my first positive pregnancy test. Tomorrow is the MRI to determine if the outside shape of my uterus matches the shape of the cavity. This is going to be very pivotal in determining if this is correctable. I'm really looking forward to having some answers and maybe being able to move on with life. I have so many things that I need to post about, but for now, I'm going to pop a few tylenol and crash.

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I'll be thinking of you during your MRI. I hope good news and good doctors are in your future.

Julia
Uncommon Misconception



   Friday, December 17, 2004  

My uterus has a first name....

I woke up today feeling extremely nervous. My HSG was at 12:45. I went to work from 9:00 to 12:00, then my husband and I drove to the hospital. Here are the results...


Please note the differences between "normal" and "me." My doctor saw this and said, "Huh, your uterus is shaped like a sausage...that could be the reason." This also explains our pattern of getting pregnant on the second month of trying and never the first. I can also assume by this that I would get pregnant not in the 3rd month, but the 4th. The dye only spilled on one side. I know that I do have a left ovary because I've seen it in ultrasounds. But the left tube is either non-existant or hopelessly blocked.

I am extremely angry right now. Not at Dr. P. He'd never seen me before my first pregnancy. He's only seen my uterus in an enlarged pregnant state. I've had no less than 15 ultrasounds in the past 12 months and 3 D&Cs. I would like to think that a structural problem of this magnitude would be noticed, however it wasn't. In fact, nobody noticed it. My anger lies squarely on the shoulders of Dr. R (pronounced "y" for he is Korean). He had ultrasounds done long before my husband and I were ever trying to become pregnant. Nearly 5 years ago, I had him check me out head to toe to make sure that my health problems were not going to be an issue. He assured me that they would not. And, while I trust the opinions of all the other doctors involved (pulmonologist, GP, orthopedic surgeon, genetic counsellor), I think Dr. R (pronounced "y") needs to be beaten. The ONE thing he should have checked himself and he didn't notice it? This man is a former chief of obstetrics at our region's premiere hospital for maternity patients! What the fuck?!?!

But more than anger, I feel a sadness so pervasive that I cannot describe it adequately. I want to have hope. I want to be positive, but looking at something like that, I don't see how it's possible. I leave tomorrow for Christmas with my family and return home late on December 29. December 31 I have a pelvic MRI to see if the outside shape of my uterus matches the inside shape. Just in case there is a possibility that we can somehow surgically correct that fucked up sausage of a uterus (hereafter to be referred to as "Li'l Smoky"). If not...can any of you spare some change to help finance an adoption? Volunteers to carry my child within your less-fucked up uterus will also be accepted. Trust me when I say, my husband, myself and Li'l Smoky will greatly appreciate it.

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  Comments about my post, "My uterus has a first name....":
Damn, I am so sorry. And damn am I pissed at Dr. R (Y)--WTF?

Please try to enjoy Christmas--one day at a time until the 31st. I'm hoping you get some real answers then. And I'll be thinking of you in the meantime.
I'm so sorry. Is there not ONE of these RE's who can do their job right? And I'm not talking about the braggarts who opine their knowledge to us about their success rates with women who most likely would have gotten pregnant on their own -- yeah, buddy, thanks for nuthing. Why can't one of these idiots actually HELP one of us who really needs help and isn't an easy case? I can't believe they could miss something that obvious.

Thinking of you.

Emily
How the hell did Dr. R never do an HSG before?? This is so outrageous -- I'm sitting here with my mouth hanging open. My G-d, I am so sorry. I hope you get some real answers from someone who's actually doing their job correctly soon. Thinking of you.
I don't know if you've already left for vacation, but please don't freak out yet. Well, you can freak out if you like, but it might not be as bad as you think.

First off, ultrasounds can't diagnose any structural problems with your uterus. Secondly, D&Cs are done "blind" (I know - really reassuring), and can't tell the doctors if anything is wrong either. Thirdly, after three D&Cs there's a good chance that the sausage shape of your uterus is due to scarring, not a true, permanent abnormality.

If scarring is what is causing the problem, there's a good chance that surgery can repair the damage. Let me rephrase that: there's a good chance that surgery conducted by someone who is SKILLED AT TREATING ASHERMAN'S SYNDROME can repair the damage. Maybe even your tube.

Please go to my sight and check out the category on "Fun with Asherman's". You'll see that I've dealt with all this myself. It was scary, but the result has been wonderful.

I hope you get this message in time not to totally ruin your holiday with thoughts of dread. And I'm keeping my fingers crossed that all of this is "fixable".

Julia
Uncommon Misconception
http://uncommonmisconception.typepad.com/home
Oh man, that sucks. Not only Lil Smoky, but the fact nobody has clocked it until now. I guess the lesson is...trust no one. But that is harsh, really harsh, and I would be raging, too, if I were you. I'm so sorry.
I am so sorry MW.

My faith in ultrasounds are decreasing by the day.



   Wednesday, December 15, 2004  

HOLY MOTHER OF FUCKING FUCK!!!!!!!!!!!!!

Dr. Salafia's office called me. She's finished with my report. My copy is going to be emailed to me (since I'm not at work today and therefore not near the fax machine). But first I have to prepay.

I gave them the information for my health care spending account, and the card was declined. TWICE. So we called the company and found out that it is because, "Earlypath is not a recognized valid health care provider."

What the fuck?

They can't email me the reports or fax copies to my perinatologist and OB/GYN.

UPDATE:
Mastercard didn't list them as a health care provider, therefore the benefits company couldn't verify what they were and had to decline. They still can't pay it, but will reimburse me if I submit a receipt after the fact. Let me state for the record at this point how much I HATE insurance companies in all their many forms!

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  Comments about my post, "HOLY MOTHER OF FUCKING FUCK!!!!!!!!!!!!!":
That sucks...but you at least have a brilliant title for the entry ;-) Hope things work out!!
This could possibly be my favorite post title ever (as I stealthily file those words away for future stealing on my own blog). Hope that your reports were helpful.



   Tuesday, December 14, 2004  

In which I ramble for the sake of posting

Each day I wake up and think I'll post something. But frankly, I haven't had much to say. Nothing has changed. I'm still fighting feelings of guilt. I am still so sad and generally just...bad.

Finally, 40 days after my D&C, my body has become somewhat normal again. I called my doctor on Friday, cd1 and scheduled my HSG. I'll have that this Friday. I tried to schedule the endometrial biopsy that he also mentioned wanting to do, but the nurse couldn't find record of when during the cycle he wanted it. So, I called his office yesterday and he said that there is now no time to schedule it for this month so I'll have it done in January.

That one test being scheduled in January set me off. I was crying in the middle of the newsroom (where I work) as a result. I had expected to have my testing done by the end of the year. I was planning to have been given a different protocol for treating my pregnancies and begin trying again with the January cycle. And now I have to wait another full month. All in all, this is not making me happy and I, quite frankly, do not have the mental capability at the moment to process anything more. Maybe next week, when my finals are over and I'm on vacation, I'll have the ability to post something substantial.

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   Thursday, December 09, 2004  

It wasn't "Nature's Way"

My most recent miscarriage left me feeling a lot of things. Primary among them was the feeling of complete and utter brokenness. I had tried three times. Three times I had had good hcg levels, good progesterone levels, and yet...it never worked for me. I heard a lot of people saying a lot of things. About how it's nature's way; how sometimes God in His infinite wisdom; how the body does this to prevent an abnormal or non-viable child from entering into a world of pain. I heard that it wasn't my fault. I heard that nothing could be done to prevent it.

And then today I heard something different. Dr. P called me and said three words. The chromosome analysis of baby #3 came back. "Everything was normal."

Everything...was...normal?

If everything was normal...if this baby was normal...then, theoretically, my baby did not die of natural causes. This was not nature's way. There was no infinite wisdom in this that I can see. No. I did this. Somehow, I did this. My body, which is me, maybe not the thinking or feeling part of me, but me all the same, did this (evidence: If my colon discharges gas--I DID THAT! People will blame me for the foul stench because I DID THAT! If I try to say "but my colon..." well, nobody on Earth is going to buy that shit).

I find myself wondering if somehow someone else were carrying my baby, would he/she have died?

No. This was not "nature's way."

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I don't want to dole out a bunch of useless platitudes. I don't want to make suggestions - I won't be able to find the right words to make you feel better. But what I can do is let you know that I care and that I am sorry. Truly.

Moogielou
All of us in IF land have been betrayed by our bodies in one way or another, and it's really beyond awful. There's nothing I can say tht will help, I know, but I am thinking of you.



   Thursday, December 02, 2004  

The return of Hope

Now that I've completed all of the work for my graduate classes this week (next week...now that's another story!) I can finally post.

Tuesday morning I saw a perinatologist. She examined my case and all of the testing that has been done to this point. I fully expected her to look at it, say "hmmm...we can try tests x, y and z, but other than that there's just nothing we can do...move along please." I expected that because that seems to be the norm for people who get pregnant easily but continually miscarry. At least to this point, none of the tests have given me a reason. There is nothing wrong with me. But the perinatologist pointed out to me that there is nothing wrong with me in the series of diagnoses they currently test for. This does not mean that there is nothing wrong! In fact, 5 years ago, some of what they now test for was unknown! People with those diagnoses were told that there was nothing wrong with them--because we just didn't know.

At that moment that one of those giant cartoon lightbulbs began beaming over my head. Science just hasn't figured me out...yet. It's a lovely thought. But then I thought, "Hey, wait...there's something wrong with you, we just don't know what and we might not know for another 5 or 10 years or more. Great. I'm fucked again!"

The perinatologist then told me about the most exciting thing I've heard of in the last 12 months since my whole cycle of pregnancy and miscarriage began (yes, I became pregnant for the first time between Thanksgiving and Christmas last year...a fucking year and no baby!). There is a doctor in Westchester County, NY (so very near me!) named Dr. Salafia. She is a reproductive pathologist. Basically, she looks at the slides made of the tissue that is removed in a D&C. This is mostly placental tissue, and it is her opinion that the placenta will hold the answers. She examines these slides and is able to find problems that we don't test for. Because even though miscarriages may appear to be quite different (blighted ovum, later, earlier, with continued bleeding, sudden and without warning, missed miscarriage, etc.) they could ALL be caused by the same thing! She postulates that the placenta, the most important part of the pregnancy, is the foundation. If this foundation is flawed or abnormal in any way, nothing that is built on it can stand; at some point, it's got to collapse. This makes sense to me. It's so -- logical! This woman is able to find genetic links people! And even though we don't know what gene it is to give it a nice tidy little package of a name to call it by, they're developing treatments!

Ok, so I know I've probably just confused the fuck out of people, but she has a website! You can look it up for your own damn self! And she'll examine the slides of anyone who sends them in -- no referrals needed -- and doesn't charge much: max of $350 ($275 if you do have a referral) for ANY NUMBER of slides from ANY NUMBER of miscarriages! Please, check her out. Consider doing it even if you think it won't help you; because in the end, she's the one doing the research that could help all of us.

Dr. Salafia's site

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