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Endometriosis Awareness Month

March just so happens to be endometriosis awareness month. This blog is dedicated to my journey thus far and by the end I hope to give you a better understanding of what endometriosis is.

Endometriosis is difficult to define. A lot of people don’t know what it is and a dear friend of mine sent me picture of what endometriosis is like. Here is what is says: “In the body of a woman with endometriosis, the lining of the uterus that is shed every month during is unable to be shed, so it’s reabsorbed by the body. It then sticks to other organs and grows like weeds in a garden, wrapping around and over organs. Endometriosis creates chronic pain, sometimes infertility, digestive and bowel malfunctions and chronic fatigue. There is no known cure.”

This is a very accurate definition for what endometriosis is and does. I was introduced to what endometriosis is because my sister has the same condition. Since we have the same DNA it makes sense that we would both have the same condition. If I’m not mistaken she has stage 3 endo. She, too, has had several surgeries to help remove scar tissue that was causing her pain. Thankfully she hasn’t needed to have any surgeries in the past 6 months.

I realized something was wrong because my periods were like hell, well worse. My cramps were so bad I would become nauseas and couldn’t eat. My back hurt so badly from all the pressure. Midol wouldn’t touch the pain and the only way to get rid of the pain was to sleep. After an ER visit because I couldn’t handle the pain, I went to my OB/GYN to then discover I have endometriosis. February 2, 2016 I had my first surgery. My tissue was removed but not completely. The surgery was supposed to fix the pain but when I went in for my check up I had two options: have another surgery, more extensive with a hospital stay or have a hysterectomy. Obviously I chose option 1. 30 days after surgery I had surgery number 2. This time a robot was used to see exactly what was going on. My bowels, uterus and ovaries were all enveloped in scar tissue. My left ovary and fallopian tube were so badly damaged that they had to be removed. I woke up from surgery in a lot of pain. I was given a shot to stop my period for 3 months so I could heal and not have to worry about being in more pain. I will scars all across my stomach because of surgery. I have a 25% chance of having a baby on my own and I hope and pray that this will be all I need.

Here’s what the doctors don’t tell you about endometriosis. The shot that I was given stopped all my parts from functioning so now at 26 I am “menopausal” because I’m not ovulating. I get hot flashes all the time, I can’t sleep and my incisions hurt…bad. (Once the shot wears off I wont be menopausal anymore) I also feel guilt and shame over my condition. Endometriosis isn’t just affecting me, it’s affecting Russell. There are days that I am so sad because I want to give him a family. We have always dreamed of having 4-5 kids. I see people and their kids and wonder if I’ll be able to have that. I hope and pray that when we get married we’ll be able to have a baby the natural way. I know that having to see an infertility specialist is something we’ll have to do if I can’t get pregnant. I am beyond thankful for Russell. There have been times when I cry to him, apologizing for my condition. Each time he says we are in this together and no matter what his love for me doesn’t change. He loves me, endometriosis and all. He takes care of me, makes me dinner, helps me get dressed when the pain is so bad I can’t bend over. He is always there for me. He goes above and beyond all expectations I had for my soon to be husband. But he has always taken care of me. He gives me hope. He is my light in this dark tunnel. He loves me unconditionally and I couldn’t ask for better partner in life.

I had my checkup this past Monday with my OB/GYN and he says everything is healing nicely. He was frank with me and my entire life was put into perspective. He said I am in the top 5% of the worst cases of endo he has seen in his career and I am the only one who has been able to keep my uterus and right tube and ovary. There are plenty of days that I feel alone and wonder why this happening. I often wonder if there was something I could have done to prevent this. I hope one day there is a cure.

Please say a prayer for all the women who have this condition. Below is a link to an article from Huffington Post about what women with endometriosis want you to know.

http://www.huffingtonpost.com/entry/endometriosis-what-to-know_us_56e1f8eae4b065e2e3d567ac

XoXo

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How are you feeling?

Do you ever just have something happen to you and you look back and see what you could have done differently to prevent it?

Well that’s been me for the last few days. To say I’m in some pain would be an understatement. I was finally able to change my bandages and look at my wounds for the first time. It’s definitely not what I thought it was going to look like. I thought since they went in laparoscopically my incisions wouldn’t be so bad, but I was wrong. Two of my incisions are quite large and my belly button has two more incisions with another small incision close to my left hip. The pain is constantly throbbing and my back almost always hurts.

Here is what they did to my body: Going into surgery I knew that my uterus was going to be reconstructed because it was somewhat damaged. However, my OB found that both my ovaries were conjoined, which were attached to my uterus, and my uterus was attached to my bowels. So basically all my parts were frozen together, giving me all these crazy symptoms when I was on my normal period. During surgery my left ovary and fallopian tube were so enveloped in scar tissue that they were damaged beyond repair. Once they took out my left ovary and tube it was time to take care of my right one. My right one wasn’t perfect, it had some damage that they were able to fix but in the end I am left with half of my right ovary and a fully functioning tube. (YAY) Of course after that was done the rest of the endometriosis was removed. From what I understand there was a lot of damage done an it was very hard to fix (surgery was 4 hours)but they got the job done which is all I wanted.

The main question I keep getting asked is this: How are you feeling? Well honestly, I have no idea. I’m out of work for two weeks if not three, I can’t do much of anything because of the amount of pain I’m in, and we only have a 25% chance of conceiving a baby the natural way. So the answer to “how are you doing?” is not so great. I feel like I have to say I’m fine or that things are going well because people don’t want to hear about the awful stress my body and my emotions are going through. There are plenty of times in the hospital that I cried because I don’t have all my lady parts. I cried for Russell because I feel like he is marrying someone he is always going to have care of. I wonder if I would have taken better care of myself if this could have been avoided. I wonder how I got so lucky by having someone love me as unconditionally as Russell. He is always willing to take care of me even on days when he isn’t feeling well or he’s having an off day. Sometimes I feel like he deserves to be with someone who is healthy and can do everything he wants to do. But I’ve come to realize that’s not life. Life is growing old with someone, taking care of them because you love them, being selfless in a time when you probably deserve to be selfish.

Finding out that I have stage 5 (extensive) endometriosis it felt like my world was falling apart. I felt like I was being kicked in the gut. Each day brings a new struggle. Each day a new emotion arises that I have to face head on. Today I am feeling overly emotional because I want a baby. I want to give Russell a family. I want to feel what it’s like to give birth to a baby. I want to be up all night feeding and changing diapers. But what people don’t understand is that this disease can rip those hopes and dreams away from a woman in a heartbeat. I want to be one the women who can beat this. I wan to be able to say I have “x” amount of children. It may take a while to get there but I have to keep faith that everything is going to work out. My plan for life has already been mapped and I just have to keep following it.

xoxo