The Dream

So it has been a long time since I have written anything. I’ll be honest, I get lazy. This is going to make “the dream” pretty hard for me to accomplish, but I will figure this out.

So here is the dream: Someday I want to write a book. More likely I will get someone to do it for me, I have these ideas in my head, but when it honestly comes down to buckling down and writing, I honestly would rather not. I love to write in such an informal style and I don’t know that it would lend well to a book, but we shall see!

I want to write about vulvodynia and dyspareunia. I’ll probably through in some stuff about my battles with fibromyalgia, CMP, IC, and a long list of other conditions I have, but most importantly I want to write about chronic vaginal pain. I want to be the Jenny McCarthy of vaginal pain. I want to say what so many people aren’t talking about and possibly don’t even know exists. Sure, there are research societies out there and medical professionals out there, but there are so few people out there.

Sex is a topic that can be difficult for many people to talk about. Even more so is if there are any problems. Chronic vaginal pain, whatever the cause, is difficult to talk about. It isn’t normal. That is the biggest thing to understand. Chronic vaginal pain is not normal. But for some reason, we are made to think that it is.

This is not a topic that many girls are comfortable talking about. It is weird enough being in pain all the time, let alone having to tell someone. I told many doctors, and got brushed of- told to have a few drinks or use numbing cream. There was no way I was comfortable talking to a guy about it. How exactly do you tell a guy that it hurts to have sex with them? That the pain is so excruciating that you cry your eyes out for days afterwards? Nothing about this is easy.

Now, years later, a diagnosis in hand and treatments under my belt, It’s second nature to me. I have been through so much over the past few years, and what I have learned is that it is so much easier to talk about it than to keep it inside. The things that I have had to go to to get better and will continue to have to endure- it is easier to talk to someone. Thankfully I have some amazing friends, family and a great husband for a support system.

I wish that more people knew about this. I wish it would spread like wildfire and reach women far and wide. This is not normal, but it is okay. It is treatable. You will be okay.

I will be okay.

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The Big “OOPS!”

I couldn’t be pregnant. It wasn’t possible. Several doctors had told me it was not possible. The doctors that had ordered my MRI did not even give me a pregnancy test because it wasn’t possible. How could I be pregnant?

A week or two before I heard the news, the GYN that I had met with informed me that I most likely had a uterine defect. He did a transvaginal ultrasound, but was unable to get a clear picture because of the amount of pain that I was in. He told me that since I was missing my left kidney, he thought that I had a unicornuate uterus with a rudimentary horn.

Here is where google was my worst enemy. I spent hours researching what a unicornuate uterus was. After reading all that I could find, I was worried. Things were worse than I had initially thought.

It is estimated that about 4% of women have some sort of Mullerian anomaly. There are several different presentations, the most common being a bicornuate uterus. The most rare being a unicornuate uterus.  The chances of carrying a baby to full term with a unicornuate uterus is about 47%. The chance of a miscarriage is about 37%. The figures that I varied slightly from site to site, but all the information I found said that this was a rare condition with a very low full term birth rate and a high miscarriage rate.

A week later, I found out I pregnant.

I had a complete and total breakdown. I was so happy to find out that I could get pregnant, but at the same time I was terrified. I had not gotten the results back from the MRI and the best information that I had received is that the doctors thought I had a defect. A defect that would mean that I had a less than 50% of keeping the baby that I had spent 4 years thinking I would never be able to have.

All I could do now was wait. I had gotten the phone call from the MRI technician that I was pregnant on Friday. Monday was when my follow appointment was supposed to be. I received a phone call on Monday that the doctor’s office still hadn’t received the final report for the MRI so they would need to reschedule my follow-up appointment. My response? “Hell no. They called me on Friday and told me I was pregnant. I am coming in.”

What happened at this appointment was just the first of many traumatic experiences during my pregnancy.

My fiance and I showed up the appointment terrified. We still were unsure of the MRI results and neither of us knew what to prepare for. Scared, we waited in the exam room while the nurse hunted down the mobile ultrasound machine. The doctor walks in and says, “This is *so and so*. He is a student and he will be sitting in on this appointment.” Excuse me? Shouldn’t I have a choice in the matter? Shouldn’t I be allowed to say whether a strange man other than my doctor has the right to watch a probe be shoved up my vagina to find out whether or not I was carrying a baby in my defective uterus? Apparently not.

The ultrasound showed that I was about 6 weeks pregnant. I was scared. I had just had an MRI, and since I had never had an MRI before, I did not know if there was a chance it could have harmed the baby. I asked my doctor. His response shocked me.

“Well, you’re within the first six weeks, so if you lost it, you lost it. But you didn’t, so its fine.”

I was shocked. He continued talking about scheduling more ultrasounds, setting me up with a specialist, scheduling more appointments, but honestly, I only know that because I asked my fiance after the appointment was over. I was shocked that a OBGYN, a doctor whose specialty is women and their reproductive systems and pregnancies, could not care less whether I had lost my baby. He didn’t even seem concerned that he had made a massive mistake by never even giving me a pregnancy test.

I changed doctors as I was checking out after my appointment. I wish I could say that was the last time I had to change doctors.

6week

A few links for background information on Mullerian Anomalies and Unicornuate uteri:

http://en.wikipedia.org/wiki/Unicornuate_uterus

http://miscarriage.about.com/od/problemswiththeuterus/p/unicornuate.htm

http://www.pennmedicine.org/fertility/patient/conditions/mullerian-anomalies/