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/

Persistent pain after a c-section: when is it nerve pain and what can you do?

One of the first articles that I read that helped me realize that I was not crazy. I have a real problem. And it is not new news that doctors rarely know what to do or care.

Persistent pain after a c-section: when is it nerve pain and what can you do?.

via Persistent pain after a c-section: when is it nerve pain and what can you do?.

The Beginning of My Journey

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.