Medical Jargon

Now that everything has pretty much been diagnosed, I thought I would take this opportunity to "spell it all out" for you. There have been multiple questions from friends and family on my condition and I hope this will clarify my situation and diagnosis in better detail than I have previously done. It's a good lesson in female development that every female should know and understand. It is also my hope that one day this information might find someone who has a similar situation as me to bring them peace to years of unanswered questions and health problems.

Müllerian Anomalies (MA): The uterus, fallopian tubes and upper vagina are made up of two partially fused tubes, which, in embryo development, are known as müllerian ducts (ovaries and lower vagina are not derived from mullerian ducts). These ducts are first present in embryos of both sexes.

In the male embryo, the presence of anti-müllerian hormone (AMH), causes the müllerian structures to disintegrate during early development. They persist in the female because she does not produce AMH.

In females, these ducts run down vertically from flank to pelvic floor in the young embryo and eventually fuse into a double-barreled tube with two loose ends, known as the uterovaginal primordium, or UVP. The double UVP will eventually merge into a single-barreled uterus, cervix and upper vagina, while the loose ends develop into the fallopian tubes. In adulthood, these organs are referred to as the müllerian tract and congenital malformations of this tract are called müllerian anomalies, or MAs.

There are 7 different types of müllerian anomalies. They include agenesis and hypoplasia, bicornuate uterus, unicornuate uterus, uterus didelphys, septate uterus, arcuate uterus, and DES related uterus. I was diagnosed with a unicornuate uterus (UU).

The cause of these conditions/anomalies is fairly unknown. To date, there is no singular cause for müllerian anomalies. Some may be hereditary, others result from an insult to the fetus while in the womb (the T-shaped uterus of fetuses exposed to the DES drug, used to prevent miscarriage between 1940-1970, is the only proven case of this situation), but most cases are simply attributed to random mutation.

Unicornuate Uterus (UU): A unicornuate uterus takes place when one müllerian duct is underdeveloped or fails to develop, causing a banana-shaped half-uterus to form. It may or may not be accompanied by a rudimentary horn, and that other horn may or may not have an endometrial cavity or communicate with the main uterine cavity. A missing kidney or other kidney problems accompany this asymmetric anomaly more than they do other MAs. Adverse pregnancy outcomes are common with UU.

The Statistics: About 2%-4% of women are thought to have some sort of congenital uterine anomaly. Of those 7 anomalies, a unicornuate uterus makes up about 4% (statistics vary) of the total number of diagnosed cases, making it the least common of the uterine abnormalities. About 65% of women diagnosed with a UU will have a rudimentary horn of some kind.

Having a unicornuate uterus unfortunately brings a significant risk of both pregnancy loss and preterm labor, as well as ectopic pregnancies. Of all the MAs, it has shown the highest rate of primary infertility (15%) and the poorest fetal survival (40%). Estimates vary by specific study, but one literature review found pregnancy outcomes in women with unicornuate uteri to be miscarriage in 37%, preterm birth in 16%, and term birth in only 45%.

Doctors believe the miscarriage rate is attributed to abnormalities in the blood supply to the uterus. Per-term labor is thought to be because of space restrictions in the half-uterus and often result in a failed cervix. Doctors may recommend cerclage for women at risk of preterm labor in this situation. It is also found that most babies convieved in a unicornuate uterus will be born breached because of the inability for them to turn properly in preperation for delivary in such a small space.

Kidney System Abnormalities: In the embryo, the müllerian ducts act as scaffolding for the mesonephric ducts, which give rise to the kidneys. Because of this parallel structural relationship, it is common for a kidney or other urinary anomaly to be present with a müllerian anomaly. As mentioned earlier, a missing kidney or other kidney problems accompany this asymmetric anomaly of a unicornuate uterus more than they do other MAs.

Ectopic Ureter: An ectopic ureter is a medical condition where the ureter which carries urine from your kidney to you bladder, terminates at a different site than the bladder wall. In females, the ureters may terminate at the bladder neck/urethra (35%), vestibule (30%), vagina (25%), or uterus (5%). It can be associated with frequent urinary tract infections (UTI), urinary incontinence, and decreased kidney function. Ectopic ureters occur in 0.025% of the population and therefore are extremely rare and often hard to diagnose.

How This Relates To Me: At the beginning of 2009, I underwent an HSG test, which resulted in the diagnosis of the rare anomaly of a left unicornuate uterus. After laproscopic surgery, they found a right (non-communicating) rudimentary horn , which after testing, proved it contained entometerial tissue. This means I was menstruating not only from my left unicornuate uterus but also from my right rudimentary horn. The horn had no outlet, as it was closed off from my uterus, thus my body had been re-absorbing the fluid for roughly some 13 years (I am fortunate it did not result in a rupture).

My left fallopian tube was removed as a teenager (at the age of 12) due to blockage of menstruation upon menarche caused by a vaginal septum. Because my unicornuate uterus is on my left side which no longer has a fallopian tube, there is no communication between my ovary and uterus. Thus, when an egg is released from my ovary it has no path to my uterus to be fertilized (the right ovary and tube are also considered useless since they do not attach to my actual uterus). This results in complete infertility outside of the means of IVF (which then takes into account the risks of the above pregnancy statistics with a UU).

As it is very common for patients diagnosed with a UU to also have an abnormality of the renal (kidney) system, such was my luck. In March of 2009, they discovered an ectopic uterter which had been misdiagnosed for some 13 years. In my case, my left ureter drained into the lower portion of my uterus, which if you read the statistics above, is the most rare of the insertion sites with the presence of such a condition.

Prior to the removal of my above mentioned vaginal septum (at the age of 12), my body had also been re-absorbing the urine drained from my left ureter into my uterus (sounds healthy-huh?). During an extensive surgery, they reconstructed the size of my left ectopic ureter and implanted it back into my bladder (thank goodness for modern day technology). Attributed to years of damage from this condition being misdiagnosed and years of battling infections, I am left with 40% function of my left kidney which will not likely improve.

After a visit to my urologist recently, a nurse at the front desk asked if I was Kara. As I responded yes, she proceeded to tell me, "my goodness...you are one for the history books". I have become quit use to being the "science project" and "show-n-tell" of many doctors. I even jokingly told my urologist that if he wrote about me in a medical journal, I wanted a copy of the article. I try and remind myself that we all have our trials in life...this was simply the one I was blessed to overcome. It brings me tremendous comfort to know that in the life hereafter my broken and somewhat pieced together body will once again be made whole and perfect. I can't wait...

For more information on Mullarian Anomalies, please click here.

Be Careful What You Wish For

I went for my post-op appointment last Thursday in hopes that he would be removing my catheter. It has been causing me a great deal of discomfort at the site where it was stitched into my abdomen traveling into my bladder wall. It also made doing much of anything very challenging unless I was wearing my leg bag. I hated the leg bag...feeling a warm liquid on your leg and knowing it was your urine...not fun! I also never enjoyed walking around with it on and hearing the liquid slosh around. I spent most of my days with my regular catheter bag, but that meant where ever I went in my house I had to have a place to hook it on. Whether it be the rail of my bed, the leg of the chair, a knob on a cabinet, or simply in my hand...life became a little complicated.



Thursday would be just shy of three weeks, so I was desperately wishing that he would be ready to remove it. Dave left work to come and pick me up for the appointment. In preparation for the appointment, I took my strongest pain killer before leaving the house. If he was going to be removing the catheter I wanted to make sure I was drugged up for the experience! Even though he had reassured me that it wasn't going to feel anything like the removal of my incision drain...I secretly didn't believe him.



He came into the room and agreed that because I had an infection and had been experiencing pain around the site of the catheter that it was time to remove it. I questioned him one more time as to whether or not it would hurt like the drain. He attempted to comfort me saying that it would not. He informed me that he never tells anyone how painful the drains are to remove otherwise no one would ever let him take them out. Those words were very reassuring (sigh) because I was beginning to think that I was just the biggest wuss in the world!



The nurse came in to remove it...snipped out the stitches, and told me to take a deep breath. At this point it was all sounding much like what they said when they removed my drain (if this is not making sense, please refer to Wednesday under "My Five Day Stay In The Hospital"). I took my deep breath, somewhat clinching the bed in expectation of sever pain as the tube was pulled from my abdomen. A slight sting was all I felt...you can imagine my relief! She then informed me that the whole in my abdomen would close up within 24 hours.



The doctor returned and instructed me to empty my bladder "often". We then proceeded to discuss how I was recovering. I BRAGGED at the fact that my stent had not really been bothering me, contrary to what I had heard about the PAIN they can cause. This is the point in which I took a massive bit of "humble pie". He proceeded to inform me that I may experience "more pain" from the stent now that I would be urinating normally.





I walked out of the office feeling like I was on cloud 9 (even though I actually threw up on the drive home and several times when I finally arrived home...but that is beside the point). When I returned home, I went pee for the first time in three weeks...whoohoo! It was a little painful, but I figured that was expected since it had been so long. I was exhausted after the big outing and from getting sick therefore I laid down for a nap. Upon waking up my whole world had suddenly changed.



I went to the bathroom again, and again, and again...each time it became more and more excruciatingly painful. I would sit on the toilet shaking in pain as my eyes would water up. I suddenly was very much AWARE of my stent! For three weeks, I had wanted nothing more than for my catheter to be removed and now I could think of nothing I wanted GREATER than to have it back in! And so the saying goes, "be careful what you wish for".



During the day I have to go to the bathroom about every 30 minutes to an hour and at night I have to set my alarm to wake me up every few hours to get up and go to the bathroom. Each time I go, the pain is agonizing, and nothing seems to take the edge off. I have two more weeks with the stent in before it is removed. I have been very humbled by this whole experience. It is ever so clear that now matter how bad something is...there is always something worse.

Beneath It All..

"Pain is bound to happen, being miserable is a choice"

After missing almost a month of church from surgery, I was finally able to attend on a personal level what seems to be the most dreaded Sunday of the year. Mothers Day is always a harsh reminder of what I am lacking despite our efforts. I have been attempting to emotionally prepare myself almost the entire week for the day filled with gratitude and joy. All in dedication to the most blessed role we can hold as women and that I simply cannot claim as my own.

I sat with eyes full of tears as each of the beautiful talks were shared, hoping that my emotional state went unnoticed by everyone, including my husband. I watched with wishful eyes as my sweet husband played with the baby of my dear friend sitting next to me. I smiled as the baby giggled back at Dave and stuck his hand out to reach for Dave's finger. I was smiling on the outside but beneath that smile, every part of me seemed to be breaking down inside.

At the end of sacrament comes what seems to be the most challenging part of it all... the handing out of a beautiful flower to all the women in the congregation. As they ask us to stand while the youth pass them out, it is always as if my knees cannot find the strength. I pull myself up feeling somewhat undeserving of such a privilege to stand under the circumstance. I have not yet had the chance to earn my flower; I have not paid the price to claim the title of mother. A part of me wants the youth to just skip over me so I won't have to stare at a flower I have not earned. And suddenly I am greeted by a hand holding out a flower for me to take. I unwillingly extend my hand to accept the undeserving gift.

Then comes the after sacrament greetings from friends holding their beautiful children as I sheepishly utter out some form of "Happy Mothers Day" with an all but fake smile plastered across my face. I get the feel from some of their unsurity of how to comfort me in my situation and circumstance on a day such as this. All I wanted to do is make a dash for the nearest door out of the conglomerate of mothers so blessed by little ones in their lives.

I have watched as those who were once by my side through much of my journey through infertility have slowly found their own path to motherhood. Leaving me behind to tread the road on my own. There are days the pain is immense and beneath it all I am crumbling into a thousand piece. On the day set aside to honor motherhood, I find myself in such a predicament... beneath it all...falling apart piece by piece. The good news is tomorrow is a new day!

For all the mothers who have been so blessed with the opportunity to be called such, I do wish you a "Happy Mothers Day". I send a big hug full of gratefulness to my own mother for the tremendous sacrifices she has made on my behalf and for her love. I pray that each one of you realizes your infinite worth and that you recognize the blessings of being a mother. There is no greater honor than the role we have been given as women. I hope that one day, I will be able to share in such joy with you. That one day beneath it all will be the pure joy of claiming the title of "mother" instead of the sorrow from what I know I lack.

Stop This Train…I Wanna Get Off

"To get through the hardest journey we need take only one step at a time, but we must keep on stepping" ~Chinese Proverb

This experience has tested my strength both physically and spiritually more than a few times. I don't know how many times along this journey I have wanted to say, "stop this train, I wanna get off". I have felt on more than one occasion so completely inadequate to keep going; so trodden down to pick myself back up. Each time I reach a new destination, or in other words, overcome another trail...there is this part of me asking, "This is it, right?", "I will be done after this one?". Funny thing is that it never seems to be "it". I haven't finished a race, I can't throw in the towel, and I am certainly not done...

I have come to realize that so often our trials are simply a means to prepare us for...you guessed it, even bigger trials. I know it isn't exactly fun to think of it that way, but I imagine if I were to look at it like this more often, I might have less disappointment and sorrow. I have also found it important to never assume that things can't possibly get any harder, because they inevitably will.

Life is full of surprises, which I am sure isn't news to anyone. It's full of ups and downs, highs and lows. Now speaking for myself, I would say I have had my fair share of both. At times it has been filled with nothing but those "highs", and more recently it seems to be filled with nothing more than the "lows". I am praying that my opportunity for some "highs" is soon in coming. So what do I do till they arrive? I am trying ever so hard to be patient… because there is one thing I know, and that is through adversity comes strength, courage, and blessings. Strength that I am certainly lacking, courage that I desperately need, and blessings that will fill my hearts desires.

After a trip to the ER Monday evening, after complications with my stent and a potential infection, I laid on the hospital bed in excruciating pain. I turned to Dave with my eyes full of tears and simply said, "I can't do this anymore…it is just too hard". His reply was simple, "yes, you can…you already are".

Throughout the course of the past several months, I have reflected a great deal on the Saviors Atonement. Most of my thoughts have been directed towards the peace of knowing that because of His infinite Atonement, he knows every pain my body has relentlessly endured and every sorrow that my heart has felt. More recently, I have turned to those sweet words He uttered to His Father in Heaven in the Garden of Gethsemane, saying "Father, if thou be willing, remove this cup from me; nevertheless not my will, but thine, be done" (Luke 22:42). Even the Savior Himself asked for deliverance from such hardship. But He, knowing what had to be done, suffered and atoned for each one of us.

The Father knows my heart. As much as I would like to be relieved of such physical pains from surgery and the emotion pains of infertility, it simply isn't up to me. He knows what will strengthen me. He knows what will prepare me for what the future holds. He knows what blessings are in store so long as I submit to his will and not my own. Every part of me wants to stop this train, every part of me wants to get off and try my hand at something a little seemingly easier of a ride. But I WILL keep going… one day at time…step by step.