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.