Misdiagnosed and Now Scared to Talk About the Pregnancy

Have you had a misdiagosed miscarriage? Please share your stories here.

Misdiagnosed and Now Scared to Talk About the Pregnancy

Postby briscoe » Sat Jun 20, 2009 5:35 pm

Hi All,

I am so glad I found this website - I now realize I am not alone in going through this emotional roller coaster. I am posting my story here for those interested and looking for hope after a miscarriage diagnosis, and also to seek advice from any others who, after a misdiagnosis, have been afraid to tell people they are pregnant. The story is long, and may be TMI in some cases, so my apologies in advance.

Part I - TTC

DH and I were married last May and decided to start TTC over the summer because while he is young (32), I was already 36 and have endometriosis, for which I had surgery when I was 34. As has likely been the case for many of you, things did not go as smoothly as we were hoping they would.

WIthin the first few months of TTC (and the inevitable 2 week waits - I had already purchased several pregnancy tests so that I could poas the second my period was due) we got into a car accident when a pick-up coming around a curve too fast wound up in our lane. I had a bulging disc and a pinched nerve. After they confirmed with a blood test that I was not pregnant, they gave me a muscle relaxer that caused cardiac problems and I would up in the hospital for several days. After that, I refused drugs because I did not want any side effects and because we were TTC.

And so, time went on, we kept TTC, and I dealt with neck and back pain with nothing but Tylenol. Five more cycles and 2 Week Waits, and at least ten prgnancy tests later, still no BFP. Meanwhile, four different people we know (all of whom are closer in age to my husband and therefore a bit younger than me) called or emailed with the happy news that they were pregnant. I don't know most of their stories, and can't speak to whether it was hard for them to conceive, but the one friend of mine was pretty much trying for about five minutes after she went off the pill! I was happy for everyone else, but also found myself suddenly feeling really old and a bit like a failure, especially when one of the women enthusiastically asked me if I was "going to catch pregnant too." She meant well, of course, but it was a painful question - I very much wanted to "catch pregnant" but it was apparently going to take me a bit longer than it had taken her. In December I nearly bit my mother-in-law's head off when, at a baby shower for some of the women, she commented that she hoped her son and I would have children soon (um yeah, me too). I have committed to never asking anyone if they plan to have children - you never know if someone is already trying and what they are going through.

A few cycles later, while it was still several months shy of a full year TTC, the doctor decided that she should run some tests - because of my age (37 at this point) she didn't want to wait any longer to tackle fertility problems if there were any. So, my poor DH had to provide a "sample" - although he was able to do it at home since we live close to the doctor's office (I still laugh every time I picture him driving to the dr.'s office with his 'boys' in a cup in his front pocket to keep them as close to his body temp. as possible!). He had some white blood cells in his sample and so they gave him antibiotics. With me, they determined that I do not ovulate regularly, so in any given month it was apparently anyone's guess as to whether I would actually have an egg available. This was better news, of course, then not ovulating at all, but the doctor decided to put my on medications. I started one medicine in March that was supposed to regulate my hormones, and was scheduled to start a second
medication upon the start of AF in early April to stimulate ovulation.

While this was going on, at the beginning of March I suddenly had crazy chest pain and pain radiating down my left arm. I called my doctor who thought it sounded like a heart attack and told me to call 911. We did, and two ambulances arrived along with a fire truck and a police car. It was 8 pm on a Saturday, so all the neighbors came out of their houses to see what was going on (we live in a small town so this was Saturday night excitement). I was taken to the hospital where it was determined that I had not had a heart attack, thank goodness. Three days and a million tests later, they decided that I had GERD (which can cause chest pain) combined with residual pain radiating down my left arm due to the bulging disc in my neck from the car accident. I was scheduled to have an upper GI scope on March 30.

Ironically (in retrospect), March was the first month since September in which I did not use OPKs to try to predict ovulation. I kind of wrote March off thinking I needed to get the first medication in my system and then add the other medication in April. So, we were completely shocked when, after getting all set up for the GI scope, the doctor came in and said the procedure was off because "Congratulations, you're pregnant!" My DH literally jumped out of his chair and kissed me, and all the nurses were smiling. I was so surprised that I made them run a second blood test in case there had been some mistake - I mean I hadn't even purchased a pregnancy test for that month! The second test was positive, and so the pregnancy journey began...

Part II - The Pregnancy (or, why I'm still scared to tell anyone I'm pregnant)

My utter joy at being pregnant was somewhat short lived, when a week after the happy news, I came back from a walk, went to the bathroom and then found blood on the toilet paper when I wiped. Not a lot, just spotting, but for two days, there it was, every time I went to the bathroom. I called the doctor, and she said to put my feet up and relax, but that ultimately if I was going to miscarry there was nothing they could do to prevent it. They brought me in for blood tests, and my hcg levels were doubling right as they were supposed to be. But I kept right on spotting, for another full week. Then, at work one day, the spotting got worse, still not like a full-on AF, but more than mere spotting here and there. Panicked, I called the doctor, who had me come in right away. They had blood drawn, and my hcg was 30,000. She said that at that level they would definitely see a fetus if there was one to see, and I was sent for an ultrasound.

As I am sure is all too familiar to everyone on this board, the ultrasound tech got everything set up, inserted the wand, and then frowned. There was a gestational sac, and even a tiny little yolk sac, but no fetal pole, let alone an actual fetus. They put me in another room to wait for the doctor, but I knew what was coming and started sobbing before she even came in. She was very kind, but told me there was no hope, that if there was nothing there at 30,000, it meant the pregnancy was not viable and I was going to miscarry. I was devastated. The doctor said I could schedule a D&C or wait to (as they call it) naturally "expel the products of conception." (what awful terminology - I was only a few weeks pregnant, but it sure felt like more than 'products of conception). I decided to wait, since surgery terrifies me. I called my husband at work, who probably couldn't even understand what I was saying since I was crying so hard. I sat in the car for a half hour, sobbing, until I managed to compose myself enough to go back to work (although I don't really remember what I did there for the rest of the day).

Then I went home, and waited for the miscarriage. Emotionally, it was the worst two weeks of my life. Luckily I found support on a blighted ovum support group website - what a wonderful group of women. I still had pregnancy hormones in my blood stream, so I felt pregnant, but knew I wasn't 'really' - I was just carrying around an empty sac and my body hadn't figured it out yet. My husband was supportive and sad, too, but I don't think he completely understood how I felt. I felt like I had let him down. It doesn't help that they call this type of miscarriage a "blighted ovum." I mean, they automatically blame the egg, even though it could be the sperm that had a chomosomal problem. In any event, I was very depressed. I went to work every day and sought support on the message board, but really did nothing else.

For two weeks, I continued to 'spot,' waiting (actually, at this point, hoping) to start having cramps and actual bleeding. I read that it could take a month for the body to finally figure out that the pregnancy wasn't going to continue, and decided that I couldn't handle waiting anymore. I called the doctor to schedule a D&C. She told me to come in for an ultrasound because they could see whether the sac had broken up and the miscarriage was just about ready to happen. So, in I went, on a Wednesday afternoon where it seemed like every pregnant women in town was there for a check-up - the waiting room was full of smiling husbands and wives holding hands waiting to get ultrasound pictures of their little ones. And there I was, waiting to see if my miscarriage was going to happen any time soon.

Finally, it was my turn. The tech, who was very nice, said he would look to see if the sac had moved down and started becoming misshapen. This time, though, when he got me set up and inserted the wand, he looked shocked. He called the doctor in, and then she looked shocked. I've actually never seen a doctor look that surprised in my life. They turned the monitor towards me, and there, on the screen, was a tiny little fetus (8.5mm) with a heartbeat of 160. I couldn't believe it! I also then panicked - I had not been "acting" pregnant the last two weeks - I drank wine with dinner, ate unpasteurized cheese, failed to heat my deli meat to steaming (gasp!)... but they reassured me that I had not done any major damage.

Then, the doctor said that, while this was good news, the fetus still measured small, and the real 'test' would be whether ten days later there had been 'appropriate' growth. So I went from delighted to terrified in about 3 minutes. I then called my husband, who could not believe it. I think it took him at least a week to finally believe that we really were pregnant 'again.'

So, another 10 day wait to see if the pregnancy really was viable after all. This was hard, though not as hard as waiting to miscarry. Truthfully, I was just prepared for things not to be OK (I was still spotting after all, on a daily basis, as I had been for nearly four weeks). So, when I went in, I was ready for the tech to say "I'm sorry, but...."). Instead, the fetus had grown to 24mm and still had a good strong heartbeat of 160. I started to feel hopeful again, but I was only at about 9 weeks, and the doctor said the next 'test' was hearing the heartbeat on Doppler at about 12 weeks. So, another 2 weeks went by, with me alternating between feeling happy and terrified - although I FINALLY stopped spotting during this time frame. Again, I was prepared for her to be unable to find the heartbeat.

They scheduled my appointment on a day where the ultrasound tech was there so that if she couldn't find it, I could immediately have an
ultrasound. This time I asked my DH go with me (I had told him not to before because he works an hour away from the doctor and it means taking a half day off for him to attend an appointment) as I just couldn't deal with it on my own. Well, it took a few minutes, but they actually found it - whish, whish, whish, like a washing machine.

At this point I was at twelve weeks and had made it though the Doppler 'milestone'. You would think I could relax a bit, but then the doctor started talking about genetic testing, given my age and all. So, relaxing was out of the question. I was opposed to any invasive test like CVS and amnio, because of the risk of miscarriage - I couldn't deal with that. But they have the new ultrascreen test, which is just a combination ultrasound and blood test and I was willing to do that. However, I live in a small town, and no one here is sophisticated enough to do that test, so I had to drive an hour to the nearest large city the following week. Sadly, I just kept thinking, how am I going to drive back if I get there and the fetus no longer has a heartbeat? I think the misdiagnosis has completely scarred me. The test went fine, the fetus was 3 inches long, and actually looked more like a baby than it had at the last ultrasound - it even waved at me :) The doctor agreed that there was no need for invasive testing. Of course, she then mentioned that we will look for nureal tube defects at the 19 week ultrasound (which is, as I type this) about 3 1/2 weeks away).

So, here I am, almost 16 weeks along, and I am still terrified to tell people I am pregnant (with the exception of our immediate famililes). I waited until last week to buy any maternity clothes, even though I had resorted to rubber bands and safety pins to keep my regular clothes on. I had this completely irrational fear that if I went in and bought clothes, something awful would happen. I will admit to you all that as I tried things on in the dressing room, I checked my panties at least ten times to be sure that I was not bleeding.

About a week ago, someone finally asked me at work if I was expecting, because she has been pregnant three times and noticed that unless I had swallowed a small melon whole, I was not just bloated from a large breakfast. So, I had to tell people at work. Everyone is really happy, and wants to ask me lots of questions - do we know the sex, do we want to find out, etc... And I know I should be really happy, and all excited to talk about cute little baby clothes, and the morning sickness, and my expanding belly and what color to paint the nursery. But instead, I still feel like any second the rug will be pulled out from under me. I'm afraid to be excited. We have a number of friends who live out of town, who don't see me, and we have not told any of them. I told my husband I wanted to wait until one of my friends had her baby, so that she would have good news all for herself. While my husband accepted this, its actually completely ridiculous. My friend would be perfectly delighted to know that I was pregnant while she was about to have a baby of her own. The truth is that I am just afraid to talk about it because I think I will jinx it or somthing crazy like that. But people may notice if we send out holiday cards in December welcoming our new baby!

Have any of you had this happen? Am I crazy? Is there something I should be doing to just get over it? I keep hoping that maybe once I feel the baby move I will feel like its real, and I can then be excited, but that 'milestone' is still a few weeks away.

Anyway, thanks to all of you for posting on this board. I don't know what people did before the internet.


PS - for everyone's reference as they compare stories, I do have a retroverted uterus, and had a large gestational sac at the time the blighted ovum was misdisgnosed. When they 'found' the fetus on 4/29 I was at about 8 weeks (but measuring 6.5). Later ultrasounds show me measuring where I would expect.
Me (37)
H (32) (married 5/2008)
B/O diagnosed 4/15, Heartbeat found 4/29
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Postby motherof2 » Sun Jun 21, 2009 12:44 pm

Congratulations on your pregnancy. I don't think you ever relax after getting a scare like that, you just have to take it one day at time. After my miscarriage last year, it took me a while to not worry so much during my last pregnancy.

I worried about her right up to the time that I miscarried our twins and then I finally said to myself that this one is different and everything is going to be ok. Not long after that I ended up at the ER bleeding pretty badly and passing some big clots. The ER doctor said my body was trying to miscarry even though the baby was still there with a good strong heart beat. After that scare I couldn't relax and enjoy the pregnancy until the end.

I'm happy that you have a doctor that didn't try and push for a D&C as so many do these days. I think once you get past your next U/S and see you peanut moving around and start to feel her, that you can start enjoying it a little more.
Linda and Jim
Healthy baby boy 2/09/02
Healthy baby boy 3/23/04
Two angel babies 1/02/08 D&C
Healthy baby girl 3/12/09
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Postby april1979 » Mon Jun 22, 2009 10:46 am

I posted on your other thread...
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