Back to the business at hand - BU & SU Primer

I want this blog to tell my story, but also be a resource for those who may have just found out that they have a uterine anomaly, like a Septate or Bicornuate Uterus. So I will just take a minute to provide you with my knowledge -- which you should know is based on my own experience and research. I am not a Doctor, though sometimes I feel like I know more than one about my condition.

• Bicornute (BU) and Septate Uteri (SU) can look nearly the same on the inside. The interior uterine cavity is divided in two by a kind of wall, which can be made of a vascular or non-vascular material. The wall can sometimes extend through the entire length of the cavity, bisecting it completely. Other times it may only partially divide the cavity.
• Bicornuate and Septate Uteri look very different from the outside. A Septate uterus has a "normal" or domed FUNDUS (the fundus is the top of the uterus, opposite the cervix). A bicornuate uterus has a cleft fundus, following the contour or the interior. A bicornuate uterus looks heart-shaped both inside and out, while a septate uterus has a "normal" shape outside and a heart shape inside
• Bicornuate Uteri are less common and have a relatively good reproductive track record. Issues range from breech positioning to incompetent cervix. I have read that 2nd trimester is the time to be most attentive, when the the fetuses weight is resting on the cervix, not the pelvis.
• Septate Uteri and the most common MA and have one of the worst reproductive outcomes of the MA's, but if threated properly can become statistically normal in pregnancy outcomes. Treatment involves a Lap/Hyst - where a surgeon can physically see the outside of the uterus to ensure it is not cleft, while at the same time, cutting away the septum hysteroscopically. It is an out-patient procedure with about a week recovery time. Doctor's will give you the OK to TTC anywhere from 1-3 months post-op.
• Bicornuate uteri are sometimes, but rarely operated on. This procedure is a major surgery.
• Ultrasound is an exceptionally poor diagnostic tool for determining the difference between a Bicornuate and Septate Uterus.
• MRI can be effective at diagnosing the difference.
• Lap/Hyst is the only SURE way to know what you got.
• A diagnosis of Bicornuate is the "catch-all". If you are told this is what you have via ultrasound, do not proceed with TTC. Make yourself an appointment with a reputable RE and request an MRI followed by a Lap/Hyst.

I had/have a uterine septum. I was told I was BU after a first trimester loss. Found out I was SU by MRI after second loss. Resected Nov. 14, 2007. Still waiting to find out if it was a success.

Please feel free to post comments to me if you are new to the whole MA thing and have questions. I know how scary and confusing it can be.

Post-op appointment was shady - BLURG!

Had my follow up appointment for my septum resection yesterday. It didn't really go as I hoped. So of course now I think that I either forecasted it, or caused it, by my recent feelings of despair.

My RE did an ultrasound. In the former location of the septum there was a big black splotch. She thought it could be a blood clot or residual septum. I am keeping my fingers crossed a clot and hoping I can pass it during my period.

I lost it. Of course.
I talked to my mother later in the day and she was shockingly supportive and understanding. At one point where I was telling her how this is straining my relationships with friends, I said something to the effect, "Well she doesn't have a magic wand shoved up her twat twice a week and get nothing out of it." My mom just took it. She also gave me some really good advise. She said that I need to give myself permission to focus on this right now, having a baby. She said that the job applications can wait. She said that the trip to Egypt can wait. It just felt good to hear someone say it.

Septum V. Bicornuate in MRI

MRI finally determined that I was not Bicornuate, rather Septate. First is the original MRI. The uterus is at the very center and looks like a heart or a butterfly. The second image I point out the determining factors. I had a Lap/Hyst to remove the Septum on November 14th. Still waiting for follow-up images.

Learning to advocate for myself

I AM NOT A DOCTOR - I GIVE YOU THIS INFORMATION AND ADVICE BY HAVING BEEN THROUGH IT AS A PATIENT. ALWAYS TALK TO YOUR DOCTOR FIRST!

Once I was tangled up in all of this TTC, miscarriage, bicornuate mess, I started to realize that I was going to have to learn to be a better patient-- at least one that knew how to advocate for herself. And the way I learned how to do that was through research and support. In particular, the MA Yahoo list saved me a lot of time and heartache by putting me in contact with other women who were going through or had gone through the same thing.

I had suffered the loss of my first pregnancy on my 32nd birthday, May 31, 2007. I lost my second on August 28, 2007 (this was a "missed miscarriage/abortion" which I will get into another time.) After the first loss, I was diagnosed with a Bicornuate Uterus by way of trans-vaginal ultrasound. I had both kidneys (good news, since MA's can be associated with renal anomalies.) After my second, I had to have a D&E and then wait for my hormones to back off and my U to get back to its "normal" be it mildly, jacked-up state.

Throughout the process I was marked by a particular medical taxonomy, a series of associated tags that were meant to help define what it was that was going on with me. Some were part of the diagnosis, some were kinds of tests, some insurance jargon, some... who knows. Here is a short list of the language I was forced to learn so I might understand where I was standing, medically speaking:

• Unknown, Expanded Problem Focus
• Threatened Miscarriage
• High Sev of Prob
• Bicornuate
• Fetal Demise
• Reeval Mod to Sev Prob
• Recurrent Loss
• Missed Abortion
• Uterine Anomaly
• Mullerian Ducts
• Uterine Septum
• Adhesion
• Laparoscopy
• Hysteroscopy (See image at bottom of post. That thing that looks like a ray-gun is what they use to look in your U)
  
• HSG

So there you are, the beginnings of a whole new language that you best become conversant in if you have been diagnosed with a Mullerian Anomaly (MA). More importantly, you need to know that different anomalies effect both fertility and pregnancy outcomes very differently. Some are just watch and wait situations, others have surgical options with much improved results.

AND HERE IS THE MOST IMPORTANT PART - YOU MUST MAKE VERY SURE YOUR DIAGNOSIS IS CORRECT!! Here is some advise on how to guide yourself and your doctor through that process:

1. A diagnosis of BICORNUATE can be a kind of "catch-all" diagnosis by a doctor that is likely not well versed in MA's (it's ok doc, you probably only bump into us once or twice a year!) Even if you are told to jump back in the TTC wagon, take a break and find a reputable RE with MA experience to confirm your diagnosis.
   
2. Ultrasound is not an appropriate tool for making a concrete MA diagnosis. Sure, it can establish the existence of an interior division in the uterus, but it fails to visualize the exterior contour of the uterus, and this is KEY to a proper diagnosis.
3. Pay attention to your body and trust your instincts. The way in which your problems are presenting is likely an outcome of your particular anomaly. Are you getting pregnant, but having repeated early losses? More common for SU's, less for BU's. Match the symptoms to the anomaly.
   
4. Learn everything you can about MA's, and don't be afraid to show your Doctor how informed you are. Ask lots of questions. Prepare for your appointments as you would a test!
5. HSG, or Hysterosalpingogram, may be your doctors next course of action. I have been fortunate enough to never have to endure one (heard they can be wrenchingly painful.) HSG may be needed for a variety of reasons, but remember, like ultrasound, this test will only visualize the interior cavity of your uterus - NOT THE OUTSIDE. And the reason why that is so important is that the inside and outside are not required to match. A HSG of a Bicornuate and Septate Uterus may look very much the same. They can only then be distinguished by seeing if the fundus (top of the U - see diagram above) dips to follow the cleft of the interior, or is rounded in shape.
6. MRI can be a good diagnostic tool, but not always. MRI, if preformed by an experience technician and the films read by a radiologist who actually understands the difference between particular MA's, can reveal the exterior shape of the uterus - particularly the fundus (top of the U - see diagram above.)
7. The end of the MA diagnostic line for many is a procedure called a Laparoscopy/ Hysteroscopy, also lovingly referred to as a Lap/Hyst. In the procedure a reproductive surgeon uses laparoscopy to see the outside of your uterus, while simulaniously performing a hysteroscopy to see the inside of your uterus. Inside seen, outside seen - DONE!

Got an MA?

No matter what MA (Mullerian Anomaly) you have - this is something you DO NOT want to miss out on!
http://health.groups.yahoo.com/group/MullerianAnomalies/
JOIN NOW and get support you need and the best advise ever from people who have been through it already!

What the hell is a Bicornuate Uterus anyhow?

A Bicornuate Uterus is also referred to as a heart-shaped uterus. You may have been diagnosed with this. That diagnosis may have happened during a miscarriage. You may have only had an ultrasound to make this determination. You probably never knew this about yourself. It was probably told you you by a doctor you would never see again. That doctor may have created a rudimentary drawing on a scrap piece of paper for you to show you the shape, then wrote it down, B-I-C-O-R-N-U-A-T-E, then told you to go home and look it up on the internet. They might have tapped you on the knee and said, "don't worry, many women have this and have very uneventful pregnancies. You'll have lots of kids!"

At least this is how it happened to me.

In a follow up visit to see a midwife, I was told we should just try again. Not only that, there was no need to wait, no reason to investigate the diagnosis further. No biggie - just try again.
So we did, and in 2 cycles I was pregnant again. At that point, I was in the begin research Mullerian Anomalies. I was just learning the what, why and how I was born like this (and you can too if you click here.)

Before I knew I was knocked up again I had made an appointment with a Reproductive Endocrinologist - here on and ever referred to as simply, an RE. Arriving in her office pregnant was frowned upon, for the RE is meant to help you get pregnant-- once pregnancy occurs the RE gives you the boot. So my RE was pretty casual with me, said congrats and warned me that we would not be getting to know each other very well. But I felt really scared about this one, and she could tell I was not feeling like this pregnancy was a taker.

A month later during my 7 week ultrasound, the first time I was supposed to see the heartbeat, the shit hit the fan. "Sorry, this pregnancy is not going to work out. There is no heartbeat." So I guess me and this RE were going to get to know each other.

I was a mobile coffin for about a week, then scheduled a D&E. The worst part is that you have these little moments where you let yourself think for just a second that everything is ok-- That the little packet of cells inside you was just playing peek-a-boo, that your ovulation date was off, that the ultrasound machine was busted. Nope, this really was happening to us.

So what I meant to get to is that my diagnosis, done at a hospital during an emergency room visit, with ultrasound as the only imaging, was starting to look like it might be wrong. And what I learned very soon is that the diagnosis of "BICORNUTE" is a kind of catch all for any type of uterine anomaly that appears as though the uterine cavity is divided when seen on ultrasound. Thing is, bicornuate's have pretty good outcomes with pregnancy. More specifically, when they do suffer losses it tends to be second and third trimester. I was having first trimester losses. It just didn't jive.

So I was back where I should have been 2 months prior if any of the small army of OB's, Midwife's or Gyno's that I saw would have even lightly suggested a follow up or second opinion. Here I was, no less than 4 months in to trying to make a roomie. Two were gone, and I was left in limbo. Yeah for our health system!