Friday, January 30, 2015

Surviving Mifepristone After a Misdiagnosed Miscarriage

Catu shared this week the story of her medical miscarriage.  She was unsure how far along she was.  They gave her a scan, saw nothing in the sac and came back one week later for a follow-up scan.  Still nothing.  So what did they do?  They diagnosed her with a miscarriage and gave her the choice to have a D&C, medical miscarriage (taking pills to end the pregnancy) or have a natural miscarriage.

Just like that.  She was given no hope and chose the pills. 

You can read Catu's story here:

Catu's Story-Diagnosed and Took Mifepristone - HEARTBEAT FOUND

She went through the heavy bleeding and the pain.  Just a side note...I've had women tell me who have had both a natural miscarriage and a medicated one that the medicated one is usually even more painful.   She went to the hospital where they gave her another scan and, yes, they found the heartbeat.

I am so thankful that her little gal (yes, they've found out they are having a girl!) is fine.  She is now 21 weeks.  But, I've talked to other women who were diagnosed with a miscarriage, went the medicated miscarriage route and found out that there was a viable baby.  Most often those babies end up miscarrying from the medication.  We've also had a couple babies on the site survive so there is hope if this has happened to you.

And, this is why I so dislike the idea of a medical miscarriage.

If you've read my blog, you know that I love the UK's new guidelines.  Wait until the sac measures at least 25mm and then, if needed, do a follow-up scan one week later.  This puts women at nine or so weeks. 

Mifepristone is NOT recommended after nine weeks.  Go ahead and read about it on the Reproductive Health Technologies Project site.   They want to promote the use of this pill but acknowledge it should not be used after nine weeks. Many women will miscarry by nine weeks naturally.  After nine or ten weeks, if you are going to miscarry and haven't, you may end up needing a D&C.

Thursday, January 15, 2015

If Gestational Sac is Less than 25mm, This is Not a Blighted Ovum...yet!

I love the UK's new guidelines for diagnosing a blighted ovum.  We've been saying for years that a blighted ovum should not even be suggested before nine weeks and now research is backing that up.

You can read more about my excitement here: 
Misdiagnosed Miscarriage? The UK Has Changed their Guidelines. Your Doctor Needs to Take Note

I am happy to say that a French study confirms not diagnosing a blighted ovum before the gestational sac reaches 25mm.  For women with a tilted uterus, that puts them at about nine weeks. 

French guidelines for diagnostic criteria for nonviable pregnancy early in the first trimester and for management of threatened miscarriage and nonviable pregnancy 

"First trimester nonviable pregnancy is established with gestational sac mean diameter and embryo crown-rump length. Mean sac diameter≥25mm without embryo (LE2) or embryo crown-rump length≥7mm without heartbeat (LE2) by transvaginal sonography allows to diagnose pregnancy failure."

In other words, if your gestational sac is growing, your doctor should not even be suggesting a blighted ovum until the sac is 25mm.  Some guidelines recommend waiting an additional week after you reach 25mm to just be sure.  Of course, this is if there are no serious complications (i.e. ectopic, partial mole, etc...).

Why do I feel so strongly about this?  My gestational sac at 7 weeks 5 days measured 21.5mm and still looked empty.  I turned down the D&C for the second time.  At 8 weeks 5 days, my sac measured 28.5mm and we saw my little one with a very strong heartbeat.    Since I shared my story, many more women have had similar stories. 

Your doctor really should not be diagnosing a blighted ovum if your gestational sac is still less than 25mm and growing.  If he or she is, might be time to find a new doctor.

Wednesday, January 14, 2015

Many Women with Viable Pregnancies have non-Doubling hCG Levels

On the Misdiagnosed Miscarriage site, many women are worried because their hCG levels are not doubling in 48 hours.  For the life of me, I don't know why some physicians are bound and determined to scare women when non-doubling hCG levels can be quite normal.

Taken from WebMD:

"Within the first 2-4 weeks after fertilization, HCG usually doubles every 48-72 hours. That usually corresponds to HCG levels below 1200 IU. From 1200-6000, the HCG usually takes 72-96 hours to double. Above 6000 IU, the hCG often takes over four days to double."

And as the pregnancy progresses through the first trimester, those numbers are going to slow quite a bit.  They will then plateau and begin dropping.  This is normal.  I've talked to women with numbers around 30,000 to 40,000 and their doctors are worrying them because the levels are not going up.  They've been fine.  In fact, according to Healthline, these are normal levels for women:

  • Six weeks LMP: 1,080 to 56,500 mIU /ml
  • Seven to eight weeks LMP: 7,650 to 229,000 mIU /ml
  • 9 to 12 weeks LMP: 25,700 to 288,000 mIU /ml
and according the American Pregnancy Association:

 "The level will reach its peak in the first 8 – 11 weeks of pregnancy and then will decline and level off for the remainder of the pregnancy."

Really, hCG levels are useful in determining that you do not have ectopic pregnancy.  After they find the gestational sac, most doctors will stop taking hCG levels because your numbers can rise and be normal.  They can plateau and be normal.  They can drop and be normal.  

Sunday, January 11, 2015

If I Could Have Just One Study Done on Misdiagnosed Miscarriages, This Would Be It

Flashing back to the year 2002.  There was NOTHING on the internet about misdiagnosed miscarriages.  A search yielded plenty of 'miscarriages of justice' but nothing on wrongly-diagnosed miscarriages.  Indeed, the only information I found was that miscarriages were not misdiagnosed and any suggestion otherwise just seemed to be an irritant to whomever was asked.

Thankfully, my miscarriage was indeed misdiagnosed.  I shared my story online and women found it.  They started emailing me so thankful to find some hope.  Some of those women ended up being misdiagnosed as well.  From those stories, The Misdiagnosed Miscarriage was born and many babies' lives have been saved as a result.

I've seen wonderful changes in the last ten-plus years.  The medical community is starting to take note.  Sure, there are *still* doctors who claim miscarriages are never misdiagnosed but there are many more who recognize that some babies just appear later.  It has nothing to do with the actual baby being too small.  It's all about the ultrasound equipment.

During the last decade, I've hoped for one study and it hasn't happened...yet...

I would like a study that examines the relationship between the transvaginal ultrasound and the retroverted uterus during the first trimester and I'll tell you why.

It didn't take too many emails for me to realize that many of us had something in common:  The majority of us had a tilted uterus.

I searched for any studies on the tilted uterus and found this one:

Transrectal Ultrasonography for Problem Solving After Transvaginal Ultrasonography of the Female Internal Reproductive Tract

This study discovered that transvaginal measurements were not as  accurate as transrectal measurements in the retroverted uterus.  Of course, they weren't measuring babies but the results were intriguing.

Of course, not many women are going to want a transrectal ultrasound during pregnancy but, this study does demonstrate that measurements may just not be as accurate as your doctor would like to believe if you have a tilted uterus. 

If we could get a study done that followed a large group of women during the first trimester, I already know what they would find.  They would find that when women have a tilted uterus, she looks one to two weeks behind during the first trimester.  Later, when the baby is large enough to be seen, the measurement dating tends to be more accurate.  We've seen this over and over on the site.  

Now, if somebody would just do this study, perhaps physicians would be a bit more patient and not in quite as much of a rush to end a pregnancy that might still be viable. 

Tuesday, January 6, 2015

Created a 'Ten Reasons Miscarriages are Misdiagnosed' Page

I decided to write a page today on the top reasons why miscarriages are misdiagnosed.

Ten Reasons Miscarriages are Misdiagnosed

The top reasons I've seen on The Misdiagnosed Miscarriage site are:

  1. A Tilted Uterus
  2.  Empty-Looking Gestational Sac with High hCG Levels
  3.  Diagnosed in the Emergency Room
  4.  Gestational Sac Looking One to Two Weeks Behind
  5.  Non-Doubling hCG Levels
  6.  Unexplained Bleeding
  7.  IVF
  8.  A Doctor or Nurse Did Your Ultrasound
  9.  Enlarged Yolk Sac
  10.  Missing Gestational Sac
Looking at that list and there are just too many reasons miscarriages are misdiagnosed.  I've read that if doctors would just take a wait-and-see approach (and not scare women by bringing up the 'M' word), we could do away with the vast majority of misdiagnosed miscarriages.

No matter what, unless there is an urgent need to end the pregnancy, be certain you are indeed miscarrying before having your pregnancy ended.  Often, that means waiting until nine or ten weeks. 

Sunday, January 4, 2015

Blighted Ovum Diagnosis? Ask About the Size of the Gestational Sac.

I know, I've said it before but I just have to say it again.

If your doctor is diagnosing a blighted ovum (empty gestational sac), the most important question you need to ask is:

What are the measurements of the gestational sac?

  • It doesn't matter how many weeks you are.
  • It doesn't matter how high your hCG numbers are.
  • It doesn't matter that your doctor has the latest and greatest ultrasound equipment.
What matters most is the size of the gestational sac and whether it is growing.  If that gestational sac is under 25mm, one ultrasound cannot diagnose a blighted ovum.

I've blogged about the UK's new guidelines. If the gestational sac is growing and, if there are no complications, you should wait until the gestational sac is 25mm and then wait one week to verify.

Taken from the  National Institute for Health and Care Excellence's page:

Ectopic pregnancy and miscarriage: Diagnosis and initial management in early pregnancy of ectopic pregnancy and miscarriage

1.4.9 If the mean gestational sac diameter is less than 25.0 mm with a transvaginal ultrasound scan and there is no visible fetal pole, perform a second scan a minimum of 7 days after the first before making a diagnosis. Further scans may be needed before a diagnosis can be made.
1.4.10 If the mean gestational sac diameter is 25.0 mm or more using a transvaginal ultrasound scan and there is no visible fetal pole:
  • seek a second opinion on the viability of the pregnancy and/or
  • perform a second scan a minimum of 7 days after the first before making a diagnosis.
1.4.11 If there is no visible fetal pole and the mean gestational sac diameter is measured using a transabdominal ultrasound scan:
  • record the size of the mean gestational sac diameter and
  • perform a second scan a minimum of 14 days after the first before making a diagnosis.
1.4.12 Do not use gestational age from the last menstrual period alone to determine whether a fetal heartbeat should be visible.
1.4.13 Inform women that the date of their last menstrual period may not give an accurate representation of gestational age because of variability in the menstrual cycle.

Without a doubt, these are the best guidelines I've seen.  If doctors around the world would adopt these guidelines, the number of misdiagnosed miscarriages would plummet.

Generally speaking, the gestational sac will measure at least 25mm by about nine weeks or so for the vast majority of women.

Too many women have shared stories of being misdiagnosed because their hCG levels were really high with no baby seen or their doctor didn't believe there was hope because they were eight weeks.  Don't focus on these things.  Focus on the size of the gestational sac and whether it is growing.  Yes, it still may end up as a blighted ovum but, if you end your pregnancy before the sac reaches 25mm and it is still growing, you may be ending a viable pregnancy.