I have had this blog post written for a couple weeks now and for some reason I just couldn't find the courage to post it. I am usually very open about my abnormality but for some reason posting it on the Internet has made me feel somewhat vulnerable. Maybe it's because I can't stick up for myself as easily? Either way I am over it now:) So here is the background of where my infertiltiy journey started...
Ever since I was twelve years old I knew having children would be difficult for me. What I didnt know was how difficult emotionally it would be. Try to think back when you were twelve years old.. would you have known how big of a deal a uterus is? I didn't.. I was having so much pain that I just wanted my doctors to take it out. In fact at twelve years old I was hoping for it to be removed. I wanted my pain to be over forever.
I got my first menstrual cycle and boy was I excited. I was diagnosed with scoliosis and had been wearing a body brace for two years. My spinal doctor told me 12-18 months after my first menstrual cycle I would never have to wear it again.
Here is pictures of me with my body brace compliments of my mother ;) Cute huh??
My excitement quickly turned to agony as my menstrual cycle that month was extremely painful. I had nothing to compare it to though, so I just assumed it was normal. I do remember lying on the couch in unbearable pain, wishing it to be over soon. A couple of days later it was, and the pain subsided.
Throughout the month I had more pain in my lower back. My parents had taken me to my regular doctor, and they performed multiple tests. They couldn't find anything wrong.
The following months as my cycle came my pain got worse. I was missing school, sports and activities with my friends. My parents kept bringing me to my doctor and after multiple visits they started to blame it on me not enjoying school. I even had some extended family members tell me to stop faking it because I am worrying my parents. The doctor eventually recommended physical therapy and my mom and I both left in disbelief that that was their answer. We never did the physical therapy.
The next month came and I was doubled over in pain. I remember crying on the floor not knowing what to do. I specifically remember this day. My mom called up the local gynecologist's office to see if maybe it had something to do with my reproductive system. They told her they were booked and I remember hearing my moms voice cracking as she cried trying to explain that I needed to be seen right away. My mom never cries. The doctors office hung up and they called back saying a doctor would fit me in at 1pm.
This was the appointment that finally gave us some answers. The appointment that proved to everyone I wasn't faking. The gynecologist didn't want to examine me because I was too young, but at this point we were desperate for answers so my mom told them to do it anyway. In this exam the doctor found a large mass in my abdomen, about the size of a grapefruit/softball. After this mass was found I had an ultra sound which confirmed the mass, but didn't show what the mass was exactly so they referred me to have an MRI and laparoscopy.
The MRI showed a normal uterus on the left side of my abdomen and, lo and behold, there was another uterus on the right side. This uterus was obstructed by a septum, which caused all my monthly cycles to pool up which was causing my pain.
Here is a picture for those of you who have never heard of it :
Following this diagnosis my new gyno had told us that there is a doctor that knows about my condition(uterus didelphys) however it would be impossible to get into see him because he was a specialist (back then it was hard to get into specialists). He told my parents it would be more then six months before I could get in. Obviously six months was not going to cut it, so I had a surgery to remove the septum where they found a second cervix. They removed the septum and opened up the cervix, so at this point I had two functioning uteruses. However the next month I was in pain again. The septum closed up again, and my parents had decided to bring me down to the Mayo Clinic where I had another surgery to remove it. My doctor at the Mayo Clinic explained to us that he had never had a patient come back with the same problem, but two months later I was back. The septum had grown back yet again. So I had yet another surgery to remove it.
A month or so later I was once more in pain. My parents called down to the Mayo Clinic and they said they were going to have to do a hysterectomy and take out both of my uteruses. My life altering appointment was scheduled for the next day. Now here is where I was secretly excited. My twelve year old mind wanted them out, in my eyes it meant no more pain, and no more surgeries.
This next part of the story my mom only told me a couple of years ago:
My mom felt differently. She knew what this meant for my future, no chance at ever having children. She was upset that the Mayo was just going to take away any chance of me ever being able to have children. In complete panic and desperation she called the office of the specialist (Dr. Nagel) that our original gynecologist told us we would never get into see. She spoke to the receptionist and cried to her on the phone. She bawled. She told them what the Mayo Clinic was going to do and the receptionist put my mom on hold. A couple of minutes later a new voice came on the phone; it was Dr. Nagel himself. The doctor that we were told was way too busy for us. He told my mom that he doesn't have any normal business hour appointments open, but he would keep the office open for us if we could come in after business hours.
We went to see him that night and I do remember the receptionist coming out and hugging my mom. I didn't know why, but again, I was twelve and oblivious to everything.
It turned out that my pain was coming from a large cyst on one of my ovaries. It had nothing to do with the septum coming back. I had some pain medication and went on my way. I had very painful menstrual cycles from then on, but nothing like it was.
Now fast forward 10 years and that is where our next blog post will pick up!
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