Sick and Tired...

It's official... I am "sick and tired" of being "sick and tired"!

Last night I went to the Wal-Mart Pharmacy to pick up a prescription for another (sigh) UTI. As I approached the counter, the pharmacist, quickly recognized me and attempted to guess my last name. Thankful, she got it wrong, otherwise I think I would have cried (okay, so that would be a little over dramatic... but you get the point). She did reassure me that one of these days she was going to have it memorized. Just why would there be a need for her to memorize my last name... 'cause I practically live at the place these days!

On Monday I will go in for surgery number two, in less than two months! I am finally working with a urologist who is actively seeking a solution to my problems and not just treating my symptoms. It will be an exploratory type surgery to get a better look at my urinary system. It is his impression that I could potentially have an ectopic left ureter. Your ureter is what carries urine from your kidneys into your bladder (you have two, one on each side). If it is ectopic, it means that it has an insertion point other than the bladder. All of my tests, procedures and symptoms, thus far point to this diagnosis, but as I have come to learn, there is no guarantee this is what they will find.

Of all the uterine abnormalities, a unicornuate uterus is most often seen with some sort of renal (kidney) anomaly as well. For many patients diagnosed with a unicornuate uterus, it is discovered that they only have one kidney or a misshapen kidney. Thankfully, I have both kidneys, but it is sounding like I could have some abnormalities in other parts of that same system. If an ectopic ureter is found, there are two solutions. The first and most appealing, is if my kidney is found to be functioning properly; they can just re-route my ureter. The second scenario, would be if my kidney is found only producing water instead of urine. If this is the case, they would have to remove my left renal system (kidney, ureter) entirely.

I never would have imagined that the health problems I have endured would be so closely related and stem back to one simple diagnosis of a unicornuate uterus. For the majority of my life, they were treated as individual issues/symptoms. It is now clear that it needs to be treated as one whole condition with multiple medical issues stemming from it. I have adjusted to being the science project to many doctors as they observe my rare medical scenario.

I have to admit I am almost hopeful that it is an ectopic ureter. It seems a little strange to hope for such a diagnosis as this, but it would mean an answer and a solution. An answer to so many frustrating and wearing health issue. It would potentially mean no more UTI's or kidney infections. I have imagined the doctor informing me of the diagnosis and there being tears of joy rather than of sadness. Joy that I might not have to live the rest of my life being "sick and tired". Joy that we may soon be able to start IVF treatments, and thus our family, without another odd fighting against us. It seems to be a dream worth dreaming...

The Common Thread

If there is one thing I have learned from all of this, it is that I am not alone. My situation may be unique... but the outcome of infertility is not. The more I open my mouth and let others in, the more I realize just how many are struggling with infertility as well. I have found hope and peace, strength and courage from those with whom I share this one common thread. Having a network of friends that I can lean on for understanding or a listening ear has meant so much to me over the past few months. Often times it is with people with whom I have never even met or barely even know. That thread is what links each one of us together, and it is often times, what holds each one of us together through such a trail.

My sidebar contains a list of friends with whom have shared this common tread with me, and the type of infertility they suffer from. I know that this list is incomplete... I am not aware of the names of some of the conditions these women suffer from and I also know that this list will continue to grow as I create that common thread with new friends. If you are on my list please send me the proper abbreviations that link to your name (if you wish to be removed from the list completely, please let me know). For a list of abbreviations, please click here or visit the link entitled "Terms and Abbreviations" on my sidebar - if you do not see the applicable abbreviation for you, make one up! If you know of those who would like to be a part of my infertile network, please send them a link to my blog, I would love to get to know them.

I have also created a logo (picture above) or blog button that you can add to your blog with a link to your story. If you have any ideas on how I could expound on this network or networking system, please let me know.

There really is truth to the phrase, "strength in numbers". I hope that we can all lift and strengthen each other through our struggles and our one common thread.

Pieces

My surgery to remove my right uterine horn (which had no communication with my actual uterus and was suspected to have endometrosis) finally arrived last Tuesday. Everything went well and as planned and I am recovering. This surgery has left me with feelings and emotions that I don't typically allow myself to have. It is as if the surgery just sucked all of the positivity and optimism right out of me. The reality that my body will never allow me to conceive a child naturally has set in more than ever. The reality of how I was born, and what has been taken and removed, and how it simply cannot be fixed or replaced is clear.

I returned to work this Wednesday and to the love and concern of the people with whom I work with. The other designer I work with asked for a better explanation than I had previously given her of just what exactly they did. The best way I knew to explain it was by drawing a picture. I pulled out my sticky notes and drew what a normal uterus looks like and gave a brief explanation of the parts (uterus, fallopian tubes, and ovaries). Then, right below that image, I drew what my anatomy looked like when I was born. That image was followed, by how my anatomy looks now (after two surgeries). When I glanced down at my own drawing, I realized just how pitiful it looked. And not just because of my artistic inabilities, but rather that there really wasn't much there. It was all just a bunch of PIECES, none of which do what they are suppose to do.

I am left with two fabulous ovaries. The right has a fallopian tube to communicate with, but no uterus communication. The left side contains my unicornuate uterus (half the normal uterus), but does not have a fallopian tube to make communication between my uterus and left ovary(my left fallopian tube was removed as a child). Simply put... a bunch of useless PIECES, a scar covered tummy, and no baby to hold and call my own.

Follow-up

As a follow-up to my last post entitled, "Avoiding the Why Me's" I wanted to share the following. In this post I shared a few of my feelings and thoughts on the possibility that we chose our trails in the pre earth life. My sweet friend shared a story on her blog in relation to what I had said. It is such a touching story, and it brought tears to my eyes. Her family has been blessed through adoption and is currently trying to adopt again. Please visit the following link to read the story which she shared...

Click Here

Avoiding the "Why Me"

I know it has been a while since I posted. I guess I figured that if I didn't talk about it then it all might go away, but I was, unfortunately, wrong. The past several nights I have laid in bed, contemplating my situation and the emotions that usually follow when I do so. Every time I do this, the "why me's" seem to creep into my mind. In an attempt to push them out, I decided to try and think of every trial or challenge that those around me have been faced with or are facing in their own lives. As I would do this, I would ask myself, "would I prefer this trail over my struggles". Each time I answered, it was a resonating "no".

Now, I agree, that some of these trials or challenges seemed a little easier than my own. But what I realized is that I would not be the person I am today if I had been faced with some of the seemingly easier earthly tests. On the contrary, there were also many trials that seemed much harder than the ones I face. The weight of these struggles would be unbearable. I am not sure that I am strong enough to face these trails (I would like to think I would be, but in reality I doubt I am).

I like to think of it this way... Maybe, just maybe, in our pre-earth lives with our Heavenly Father, we sat down with him and helped choose our earthly struggles. I imagine a big long list that seemed to extend forever of all the earthly trails that one might face in this life. I picture reading through each one until I came across the struggles for me, in which I would respond, "sign me up for this one", "I think I am strong enough for this trial", "Oh, and this one too... I could learn so much from this trial". I envision my Heavenly Father guiding me through the list, helping me to choose the trials most suited for me. I imagine He would then explain why it will be important for me to experience these trails in my life, but more importantly, why it is important that I overcome each one. Now, I am not sure that this is really how it works, but it gives me peace and strength to think that maybe I knew of the hardships I would face in this earthly life and that I gladly accepted them, knowing that if I endured each one I would be a stronger individual. It also brings me peace to know that the Lord will never test you beyond that which you are capable of bearing.

At times, it is so hard to understand why there are so many blessed with children who don't even want them or care for them. And then there are those who pray each and everyday that they might be blessed with a child to hold in their arms only to be empty handed. I cringe each time I hear an ungrateful mother talk of her annoyance of raising children, the supposed sacrifice of her career that she is making, or her slim figure. My heart breaks as I watch a mother yell uncontrollably at her child in the middle of the store or when I hear the news reports of a mother dumping her baby in a dumpster or leaving their baby to die in their crib because they are too drugged up to realize what they are doing. Each time I can't help but think, "I can do better than that and yet I am the one who can't get pregnant". We have all heard the phrase (probably from our parents) that "life just isn't fair". This certainly seems to sum up the emotions that creep into my mind and heart..."why me, it's just not fair".

I don't always understand the Lords plan or timing for me. But what I do know is that there is a reason for everything. I can choose to take my life's challenges and be bitter or I can choose to learn and grow from them. When my opportunity comes for me to hold a child of my own in my arms, I pray that I will remember what it was like to go though each day empty handed for so long. I pray that it will cause me to be a better mother than I might have been otherwise, that I will never take for granted a single day that I have to spend with my child. I have longed and waited, I have cried and prayed... and because of all this I have a greater appreciation of motherhood. I am trying to change those "why me's" into seeing this experience as a blessing. A blessing and opportunity to love my future child more fully and to never take for grated the amazing blessings of motherhood.

Hoping for a Miracle

Over the course of the past few days there has been one word that seems to have been ingrained upon my mind, and that word is "hope". At this point, I feel as though hope is about all I can do. I hope that I will find peace in my heart, I hope that I will have strength and courage to endure, I hope that I can fight all the odds that seem to be against me, but most of all, I hope for a miracle.

As I have been looking online for what little information is available on this rare abnormality, I came across a website dedicated to stories of women who suffer from this same condition. Although each of their stories is slightly different from my own, there is still one commonality, "hope". I read through each story of success as tears streamed down my face. In my moment of despair and doubt, the Lord knew that I needed some hope to hold onto and he provided just that.

Yesterday those same feelings of despair snuck back into my heart and I knew I needed something to lift my spirit. There on my nightstand laid the General Conference Report in the Ensign magazine published by our church. I went to the topic index and browsed over each subject. The topic of hope seemed to jump off the page in big bold letters. It referenced a talk given by Elder Uchtdorf entitled, "The Infinite Power of Hope". I sat down in my chair, pulled out a highlighter and read the beautiful talk he had given on the subject of hope. He states, "hope has the power to fill our lives with happiness. Its absence-when this desire of our heart is delayed-can make the heart sick". He later talks about how "the adversary uses despair to bind hearts and minds in suffocating darkness".

Throughout the 5 years Dave and I have been trying to get pregnant, I have felt as though I have kept a positive outlook in my situation. Not to say that there were not hard days, but I felt as though I battled each one triumphantly. Last Thursday, all of that positivity was suddenly drained away and I was left with feelings of doubt, frustration, anger, pain, and heartache. In my naive understanding, the outcome that I was given wasn't exactly what I had in mind. I went to the doctor for answers, and with those answers I expected solutions. I could have never imagined that my infertility would be something that was incurable and unfixable. It was hard for me to fathom that I had overcome my medical challenges as a child and that I would be faced with even more in adulthood.

As I have tried to drive such thoughts and feelings from my mind and heart, I am reminded of Elder Uchtdorfs words from his talk, "There may be times when we must make a courageous decision to hope even when everything around us contradicts this hope… never give in, never surrender, never allow despair to overcome your spirit.". He defines hope as the following, "Hope… is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear".

"Hope is believing and expecting that our prayers will be answered" (Elder Uchtdorf). In the days ahead, it is my prayer that my hope will overcome my despair. And as I continue down my road to motherhood, I will be hoping and praying for a miracle.

Part 2 of My Story

(If you haven't read Part 1, please click here)

Now that I have finished school, the reality that I am not a mother has set in harder than it had previously. When we moved to Arkansas I decided that I was ready to pursue more options and try and find solutions. This past year has been exceptionally hard as I have been faced with more UTI's than in the past and my body hasn't responded the same to the antibiotics as it has before.

Little Rock has a wonderful university medical center that I felt very good about and so I began the process of getting answers. I gathered and requested all of my medical records from the past 13 years of my life so that I would be able to give the doctors a better understanding of my situation. I set up a family care doctor so that I could get referrals to see the doctors at UAMS. At this point, I was finally able to make my appointments. When I did so, I could have never anticipated the wait that would follow. I made appointments with 2 doctors, a urologists and an OB/GYN. The earliest that I would be able to get into either doctor would be over 2 months. A week before my first appointment with the OB/GYN I received a letter in the mail informing me that they had pushed back my appointment for another month and a half. I was so frustrated after waiting so long to find out that I would have to wait even longer. Not to mention the fact that I had been bleeding for over 3 months and I was unsure why. As I explained this situation to the nurse who rescheduled my appointment, she simply said, "well, you have your appointment with the urologist in a few days, see what he says about it". Then to make matters worse, I received a call the day before my urologist appointment to inform me that they would need to move my appointment back one more month. And so the waiting process began again...

When the urologist appointment finally arrived they meant business. It was a long wait to get in to the doctor, but once I was in, he wasted no time in running test, after test, after test to try and get to the root of the problem and to get a clear understanding of my anatomy. He then confirmed, as my childhood urologist had already done, that my urethra was about 1 cm off from where it was suppose to be located. This in turn, directs a small amount of urine into the vaginal cavity and causes a significant amount of urinary tract infections along with a myriad of other issues. He then said that in his 35 years of practicing, he has never seen this situation before and wasn't sure if it would be able to be corrected or not. I then received a referral to see another urologist, as he attempted to comfort me by saying, "if there was a doctor who would have a solution it would be this new doctor". We then went to make the appointment only to be informed that there would be another two month wait to get into see him. This appointment will be December 12th, and I am very hopeful he will be able to repair and correct my urethra.

As for the OB/GYN, I went to that appointment and was again referred to another doctor who specializes in fertility treatment. Luckily this appointment was scheduled just a week and a half following this visit.

My first fertility appointment arrived November 10th, and I could hardly contain my excitement of the possibility that he would have an answer for me as to why I have been unable to get pregnant. Once again he wasted no time in finding a solution, as I underwent a series of tests and blood work. He discovered that I was not ovulating and that is why I had been bleeding for several months. He then ordered and HSG test to determine if there was any blockage in my right fallopian tube (since I only have one) and to get a clear picture of the shape of my uterus. During an HSG test, they shoot dye into you uterus and watch the path of the dye flow out through your fallopian tubes. It is done by taking a consecutive series of x-ray images as the dye is injected. It causes severe cramping for the point of dye injection up to two days later. I had watched a video of a normal HSG test before I went in for the procedure so I would know what to expect.

During the procedure I couldn't see the screen of the X-rays, but once they were done, the doctor sat me up and pulled the screen over to show me the results. The second I saw the images, my heart sank. I knew something wasn't right because my images looked nothing like the normal HSG test I had watched online. I left the hospital that Wednesday with a brief explanation of what the doctor thought might be wrong, but he told me that my fertility doctor would go over the results with me on Thursday. In my heart, I knew the outcome was not what I was hoping for. I spent the rest of Wednesday lying in bed because of pain from the procedure while I looked online for further explanation of what I had seen. There was alot of tears as I read through article after article describing my situation.

Yesterday was the follow up appointment for the test results. Going into the appointment, I had pretty much prepared myself for what the doctor would be telling me. He sat us down in his office and went through everything with us for almost an hour. I was born with a rare uterine abnormality known as a unicornuate uterus. This basically means I have about half the uterus that most women have. My unicornuate uterus has a left horn and a right non-communicating rudimentary horn (as seen in the diagram below, for a picture of a normal uterus please click here).




I have a very healthy right ovary and fallopian tube but there is no communication between them and my uterus. It is suggested that there are several women who have this condition and never experiance any problems from it. It is often diagnosed when a women suffers from repeated miscarriages, pre-term births, or infertiltiy. In my situation it has caused steralization. This is due to the fact that they removed the only fallopian tube that had communication with my uterus because of the damage the tube withstood as child. My uterine malformation was not discovered during my childhood operations because of the initial distortion of the organs from the blood that they held.

The doctor also suspects that I have endometrosis. He has suggested that I undergo a laprasopic surgery to remove my right uterine horn and fallopian tube and the portion still remaining of my left fallopian tube. This will resolve the pain caused from the endometrosis which has built up in my rudimentary horn and decrease the risk of any tubal pregnancies. I am waiting to see if the urologist will be able to operate on me to correct my urethra, and if so, I will have each doctor do their surgeries on the same day.

My options for motherhood are IVF (invitro fertilization), surrogacy, or adoption. If we were to go forward with IVF they would only be able to implant one egg at a time (they usually implant multiple Embryo's). This decreases the chance of the procedure being as affective. They would do this because of the risk involved if all the embryos took and I carried a multiples. Because of my uterine size, carrying just one is like carrying multiples for everyone else. I would be considered a very high risk pregnancy and the chance of miscarriage and preterm births are very high. The babies are usually breeched as well, because there is not enough room for the fetus to turn.

Amongst a lot of sorrow, there is certainly hope, but I have a significant amount of odds to fight. I know that if it is meant to be, the Lord will provide a way. Please keep us in your prayers as we continue are quest to become parents. I can't thank you enough for the immense amount of love and support that you all have shown. I will keep everyone updated as to what we find out over the coming months.