We arrived in Atlanta yesterday morning BRIGHT and early! Our flight was only to be 2 hours and landed 40 minutes early! Since it was Sunday and we had no appointments or places to be (and because our apartment wasn’t open for check in until 3), we decided to make it a day of exploring. We rented a car and scoped out the location of our apartment, the CEC, and the hospital, along with the lay of the land in our temporary new neighborhood. I was in love with the ATL after about an hour and am absolutely ready to move here! We were headed to the zoo when we passed a local farmer’s market in a park. Being the total farmer’s market geeks that we are…we skipped the zoo and hit the market! And OMG am I glad we did! I was supposed to eat light yesterday, which was tough because they had tons of fantastic looking grub there. I settled on a yummy crepe with ham, eggs, arugula, cheese, and a sweet and spicy sauce. Followed by a carrot cake doughnut for dessert.
It was pretty much like heaven, I think. The rest of the day was pretty similar, in the way of being like heaven, that is. Our apartment is DARLING, there’s an IKEA right down the road, there’s also a huge Target, a Container Store, and malls…malls galore! I’m pretty bummed I won’t be able to actually enjoy this city more. We definitely will be back for a trip sometime soon!
Today I had my consult with Dr. Sinervo. I’m not joking when I tell you that I walked into his office and was star struck. I’ve spent months reading about this man. I stuck out my hand to shake his and could barely speak. I had to fight back tears just knowing that this man is taking me seriously and can help! He was so kind and took every second I needed to answer questions and thoroughly explain things. It’s impossible to express how wonderful the experience with him has been already! For close to 8 years (since my emergency hysterectomy) I have had people laugh, shake their head, question me, stare at me like I’m a three headed monster, etc. when I tell them I still have a monthly cycle. Discouraging doesn’t even begin to describe it. But today that changed!
While the doctor did profoundly state, “that is NOT normal”, he did have an assumed explanation. (We won’t know for sure until he is performing the surgery). This is a blog post that may get to be a little TMI at times, and I apologize, but my goal here is to share my experience accurately so that I can be of help to others in my situation. 1 in 10 women have endo…in case I haven’t reminded you today.
So what’s going on?
Again, I won’t know for sure until tomorrow in post-op. However, I learned today for the first time that when I did still have my uterus, the bowel was adhered to the back of it with endo. Because the situation in which my uterus had to come out was dire, they didn’t work on removing the endo in any way. Their main focus was saving my life…I’m down with that. 🙂 Because that endo was still there, it’s very likely that the bowel is now adhered to the vaginal wall and is infiltrating it. Exam today determined my sigmoid colon is attached to my vaginal wall. This would cause the bleeding each month. Because of this it is likely I will need to have a partial vaginectomy if the disease is too severe. This probably sounds somewhat horrific, but let me explain. I read somewhere to think of the vagina as a tube sock. When you have a hysterectomy, they make a cuff to stop bleeding, etc. from leaving the pelvis. That cuff is like the toe end (seam) of the sock. If I need this partial vaginectomy, they’d remove the diseased part and re-create the cuff. When the bowel and vagina are separated, they use a layer of fat as a buffer to keep the surfaces from adhering again. If they’re unable to get enough fat (they will…I have a couple little love handles in this 120 pound body they can have! haha) an ileostomy will be needed for about 6 weeks. There is a less than 5% chance of this happening.
An ultrasound was performed today as well, confirming information that I did already know. My left ovary is buried somewhere on my left side, it’s covered in cysts, it is very scarred and is double the size it should be. The goal is to remove the cysts and free the ovary so it can return to where it should be. Ideally I will get to keep that sucker and not have to go through any hormone replacement therapy, but there is a chance that it will need to be removed, along with my left Fallopian tube.
Because of my body being so jacked up inside (that was super technical), I also have pelvic floor dysfunction and will need to have pelvic floor therapy with a physical therapist starting in about a month. Along with the therapy, I will also be using valium suppositories to relax the muscles. They’ve spent a long time being tight and working to hold things in places they shouldn’t be!
I know how overwhelming this seems. And if you follow me on Facebook you’re probably wondering why on earth I would find this news to be “good”, but when you have a disease like this you spend a lot of your life looking for answers and for people to take you seriously. I’m so happy to have finally found that, that the excitement of a better future far outweighs the nerves!
Surgery day is tomorrow at 7:45am (if I don’t cave in and eat an entire pizza alone. Liquid diet is not my friend).I will be sure to update as soon as possible! I appreciate all the thoughts, prayers and well wishes everyone has been sending my way! Thank you so much for your kindness! 🙂 A big shout out to my “fan club” who came to join Mr. Pennington and I in Atlanta and be there tomorrow for my procedure. I love you jerks. 🙂
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