I get asked a lot of questions about my condition and before my diagnosis, I did not know it existed and I consider myself pretty "up" on medical information. It is just a thirst for knowledge I guess, but I probably never looked up "uterine abnormalities"!
All of my annual OB/GYN exams were always completely normal. There were no signs that anything was wrong under the surface. I was a pretty healthy child and never had any abdominal surgeries or many x-rays other than going to the dentist. I'm not sure they would have found this condition anyway unless it was specifically being looked at. I do know that I always had a bit of a pre-occupation about being able to become pregnant when I wanted to. Every exam, I'd ask if everything was looking good and I was always told my reproductive outlook was "great".
I starting taking the Pill right before Bill and I got married. I laugh about this now thinking about all the years that I didn't want to get pregnant and did everything in my power to avoid getting us into an unplanned pregnancy. This is the cruel irony of infertility! I stopped taking the Pill in 2001 after we had been married for a few years and we were more secure in our careers and finances. I had purchased a copy of "Taking Charge of Your Fertility" by Toni Weschler and decided that introducing hormones into my body probably wasn't the best choice for me. I started charting my basal body temperature to determine when I was fertile and when I was not. We were still preventing but the thought of having a child didn't scare us very badly at that point.
Obviously, nothing ever happened. Fast forward a few years and we became more interested in starting a family. We at first left things up to chance and nothing. Then we really started being more conscious of my fertile times and nothing. Then we were using our graphs and charts to do optimal timing and nothing. My OB/GYN told me that she expected to see me back soon because I'd be pregnant for sure. She assured me we were doing everything right! I had my wisdom teeth removed as my dentist recommended that I have that done before I was pregnant because there is a higher incidence of problems. It needed to be done and now was as good of a time as ever.
Still, nothing happened. I wasn't even late one day on any cycle. I'm like clockwork. I ended up in her office the following year for an annual exam and reported that I still was not pregnant. We had a long talk and this is the best thing that I love about my OB/GYN office - they don't push people out the door. They schedule more time per patient than any other practice I know and I don't have to wait for months to make an appointment. She told me that she'd rather see me get some help from a specialist than continue beating my head against the wall and she gave me a referral a highly recommended Reproductive Endocronologist (RE). She ordered a lot of blood work that she knew they would want and that would get me off to a quicker start. Hormone levels, metabolic panels, you name it. Bill's doctor ordered a sperm analysis (SA) for him and the results of that were normal.
I researched the RE practice and was thrilled to find out that they had offices located just down the street from my office and close to home. It was going to be easy for me to bop down the street and back to work and it wasn't going to be a terrible distraction. I called the RE office close to work and they scheduled an appointment for just a few weeks away. A lot of people I know have had to wait months to get on the calendar. I felt very lucky! I went to get my blood work done and I wasn't feeling very lucky after they drew 9 vials from my arm. The last few tubes were a little iffy and I don't like those tests to begin with. But I survived and thought if I'm a whimp now, how am I going to expect to have a baby?
Bill and I sat down and discussed what our limits were going to be. I know when someone gets to this point and turns to ART (Assisted Reproductive Technology) for help, the journey becomes very emotional. I wanted to be clear what procedures we were willing to try and which ones we weren't to avoid making emotional decisions. We decided that we were open to some oral fertility drugs, limited shots, and IUI (inter-uterine insemination). In-vitro fertilization (IVF) is in the category of "not going to try" for us at this time. We feel that if we reach the point where IVF is our only option, God has another plan for us.
Bill and I went to our first appt with Dr. T full of hope and excitement. We had the big packet all filled out, our insurance information ready, my blood test results (all looked normal to me), my last PAP result, DH's SA test result, and over years of temperature charts. "Looks good", we were told after Dr. T reviewed all our information. We were told the next course of action - more tests since nothing looked out of the ordinary and to stay with timed intercourse. Bill had another SA done (standard procedure to make sure one is not an anomoly). I had more blood work taken on a certain cycle day to check for ovarian reserve and egg quality. I was also tested for every known STD (ummm thanks) and other genetic markers like cystic fibrosis (I am not a carrier). I also heard several times "relax, you are young, there is nothing to worry about".
Everything was going very smoothly up until this point although I was a little annoyed that no one would give me any test results until ALL tests were completed and I had one left to do - a HSG. HSG or hysterosalpingogram is a series of x-ray images of the uterus and fallopian tubes as they are filled with a contrast dye. This has to be done at the beginning of your cycle because it could potentially "flush" out a fertilized egg if done after ovulation. There is a potential big benefit to this test as it is reported that there is increased fertility for the next 3 cycles as the dye helps flush out the fallopian tubes. Dr. T was all booked up when mine was to be done, so I saw another doctor in the practice. It really wasn't a big deal to me, but I didn't know her and she knows nothing about me. I was prepared as I had taken my antibiotics and pain medications as prescribed.
The test itself really wasn't too painful, thanks to the medications that were already in my system, and I had an idea of what to expect. It can involve cramping and sometimes you can get a false result because your tubes can spasm and close, showing blocked tubes. I could feel the dye fill once because it isn't warmed to body temperature and Dr. G remarked "hmm... that's not what I expected". She had me roll over on my left side and an image was taken then back on my back. She decided to run the test again just to make sure that she was seeing what she thought she saw and more images were taken.
This is a normal HSG where you see a nice triangular shape of the uterus and the tubes are nicely defined by the dye.
This is not my actual HSG image, but mine looks almost exactly like it. Maybe this is mine, who knows!?
Dr. G had me pick my head up so I could see the screen. She told me that I only had dye spillage on my left side and the test shows that I have a unicornuate uterus. "Don't worry", Dr. G said. Then I was asked to get dressed and a nurse would meet with me when I was ready. So when I came back out fully clothed, I was handed a booklet called "Birth Defects of the Female Reproductive System" and a prescription for a ultrasound. What??
Here's a better representation:
"Unicornuate Uterus - This is the failure in development of one of the Mullerian ducts, most likely due to a failure in migration (movement) of the duct to its proper location resulting in its total loss during fetal development. The resulting unicornuate or half uterus has connection to only one fallopian tube since the other tube was to be formed from the “lost” Mullerian duct. The size of the cavity in the unicornuate uterus is very important in determining the likelihood of reproductive success. Unfortunately there is no accepted benefit for the treatment of these uterine defects.
The unicornuate uterus is associated with renal abnormalities (lack of a kidney on the side of the missing Mullerian structures) and reproductive problems (abnormal lie or presentation, intrauterine growth retardation, preterm labor and delivery, incompetent cervix)."
Now there was a question about my kidneys and function. Statistically, there was a 50% chance that I would be missing a kidney on my right side, the same side as the uterine defect. Dr. G said until it was determined what my kidney status and function is, I was on hold. If I have only one good kidney, we would have to understand that a pregnancy would put extreme pressure on my system and it would not be recommended that we continue. "Have you ever been told that you only have one kidney?" asked Dr. G. NO! Don't you think I would have mentioned that to someone along the way?? I'm not a complete idiot.
I was in shock as I left the office. I had no idea what to think or what to feel. I must say that all thoughts of TTC left my head quickly as I was more concerned about what the status of my kidneys were. If I only had one, there would be no way that I would risk harming it in the quest to have a family. There was no option there for me to ponder. I don't remember if I called Bill on the way home or not. I called my insurance as soon as I got home and asked them where I could go to get an ultrasound done. I had no idea, I was in total foreign soil. The consultant on the phone was very nice to me as I'm sure she could tell that I was a little frantic. She gave me the number to a diagnostic center right by the hospital, just a few minutes away. I called the diagnostic center and read what was on the prescription to the scheduler. I was in luck, there was an opening the very next day. I would not have to wait long to see how bad the situation was.
Stay tuned for part two..... this has gotten long enough for today!
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