WARNING: those sensitive to “womanly things” should steer clear.
I have been through so much over the past few years, medically speaking. Throughout all of my pain, I have found a severe lack of information to help me though it all. Few to no medical postings, no testimonials, almost nothing to help guide me. I’ve seen well over twenty doctors with varying specialties (in the past 2 years alone) and, until recently, I have not gotten sufficient answers. I cannot even begin to describe how depressing and worrisome the ordeal has been. I am thankful every day that my medical anomalies are not (to my knowledge) life-threatening or terminal, but the heartache, the worry, the anxiety and the breakdowns that I have suffered, have been harrowing. If I can be the one google search that pops up, the one story that is passed on, the one ray of hope for some that may have experienced or (is experiencing) something similar, than this blog will have served its purpose. No one should ever be made to feel like a freak of nature, a crazy person, be tossed around from doctor to doctor, to feel as though there is no help, or experience the amount of frustration I have the past few years. No one. Over time, I hope to share my whole story, piece by piece. Hopefully I will be able to end with a true recovery and some answers.
And so, with several years time to catch up on, I shall begin.
Since the day I “became a woman” I should have known that I was doomed. For a minimum of a week a month, I was bedridden and in excruciating pain. Never the same week each month, but for seven days or more every time. When I was fourteen, I discovered a lump in my breast and had to have a lumpectomy to remove it. The tumor was benign, but the doctor informed me that I needed to be fully examined to make sure that there were not other complications with other parts of my anatomy. When I was seventeen, I gained to courage to go to the local Family Planning office to get examined (a cause I support whole heartedly, especially now) and discovered I had a tilted uterus and an abnormal cervix. The doctors did not seem concerned, but still had me undergo an ultrasound where they learned I had a tilted uterus and my anatomy was primarily aligned to the left. The doctors put me on Depo Provera birth control to help with my abnormal and painful periods, and, to my surprise and joy, the periods stopped entirely after a few months time. I thought nothing more of these things until I got abnormal results on my first pap smear at twenty years old.
The results of my pap were made available not only to Family Planning where the test was done, but also to my primary care physician (PCP). My PCP told me that I needed to have a colposcopy done to make sure that the cells were not pre-cancerous. Family planning told me that recent studies were released that stated that a colposcopy was not recommended for anyone who had not been sexually active for more than 3 years because of the bodies sudden possible exposure to HPV (I had not been at the time, and since then every OBGYN that I have seen has agreed with the aforementioned studies). Being a scared teenager, I had the procedure done by my primary care physician. The colposcopy came back negative for pre-cancerous cells. I was relieved.
But then the pain after the procedure didn’t go away.
Since the first vaginal exam that I had at seventeen, I have been told I have a “weird” cervix. It is not in the right place, it is not the normal shape, it does not have a normal opening, and it is very hard to find. Every single doctor has told me this. The colposcopy only made things worse. I had never experienced such excruciating pain in my life. The next doctor that I had seen, an actual OBGYN this time, was when I moved to Connecticut almost a year later because I started having severe abdominal pain and painful, heavy periods again (I had stopped the Depo around the same time because I had missed a couple of shots and had to restart the medication three times, which did not agree with me hormonally). When I saw my new OBGYN, he stated that my cervix was very “weird” and almost entirely scarred over (likely from a poorly executed colposcopy). He ordered an ultrasound to explore to see if my abdominal makeup was abnormal as well. My ultrasound lasted for about an hour while the ultrasound technician looked for a left kidney that did not seem to be there. My doctor ordered an MRI to find if this was true. Around that time I was in the process of moving back to Maine and then my insurance ran out as I turned twenty-two, so I did not have the MRI. Before I left his services, though, he informed me that the chances of me conceiving a child with a scarred, flat, dimpled, half cervix were almost impossible without surgery and that I would likely need to undergo fertility treatments. This was a heartbreaking thing to hear at twenty-one years. I was not planning on conceiving soon, but I wanted children.
Another year passes. My fiance deployed to Afghanistan, and I did not notice the abdominal pain as often. He returned, and the pain returned with a vengeance. Legislation was passed that extended the coverage of a parental insurance plan until the age of twenty-six and my medical journey began again.
I returned to Family Planning once again because I had experienced trouble obtaining a referral to a gynecologist from my PCP in a timely manner. That is where I heard, for the first time, “has anyone ever told you that you have two cervixes?” No. I had not. And the nurse practitioner decided that maybe she was wrong. She referred me to a gynecologist in a timely manner. I did not receive a pregnancy test because she did not think it was possible for me to be pregnant.
I went to the gynecologist. He ordered an MRI to confirm that I congenitally had only one kidney. He also thought, that given my “weird” cervix and the potential that I had just one kidney, that I may also have what he referred to a Mullerian Anomaly. Specifically a unicornuate uterus, potentially with a bicornuate horn. Apparently, the kidneys and the female reproductive organs form from the same tissue at the same time in the womb. Generally speaking, when there is a problem or absence in one area, there is in the other. I had no idea what that would mean for me, but i was terrified and google searches did not help. Again, I was given no pregnancy test because the doctor did not think it was possible.
I eventually had the MRI and was sick with worry. I had done so many google searches, and all that I could find online was that the chances of ever having a successful pregnancy were slim to none. I was twenty-three years old. I had already been told that I would need surgery and potentially fertility treatments to get pregnant, now it looked as though even if I were got pregnant, I would not likely be able to carry the baby full term. I was twenty-three years old. I was terrified and devastated and I hadn’t even gotten the results back yet.
Finally the MRI technician called me. I was nervous. Listening to the sound of his voice, so was he. Panicked, he informed me that the final report had not been written, but he discovered something troubling.
I was pregnant.