Tuesday, November 20, 2007

Learning to advocate for myself


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!


Jenny said...

This is so helpful - and I love your blog and humour! I was just diagnosed yesterday after an HSG with either a uterine septum or a bicornuate uterus. They've scheduled an MRI to try and determine which one I have. Did you have both an MRI and a lap/hyst or just one? I'm wondering how much I should push for the lap/hyst if they feel that the MRI is enough?

Thank you for sharing your story - so nice to see that you had (2!) happy endings! :)

admin said...

I had an MRI first. Make sure to ask the tech to give you a disk with images. Radiologist often read them wrong confusing a BU and an SU. Look at them yourself and compare to images online.
Be sure to join the MA Yahoo group! There are lots of helpful people there and many MRI images posted so you can compare yours. I was able to get the lap/hyst without a battle because the radiologist read it as an SU. http://groups.yahoo.com/neo/groups/MullerianAnomalies

Good luck!!