Posted by: thedianestory | March 6, 2012

Endometriosis – Physical Impact

March 6, 2012

As I mentioned in my last post there are a group of fellow Endo Girls blogging this month for Endometriosis Awareness. Each week we will be blogging on a different topic.  This week’s topic is Physical Impact.

If you’ve read my blog for awhile or know me at all, then you may be familiar with some of what I will say here, because I have touched on it before. Endometriosis has made a huge physical impact on my life. While I was not officially diagnosed with Endo until I was 19, I had signs of it from the moment I started my period at age 11. I was the first of my friends to “become a woman” and they all thought I was so cool, but I quickly learned that it was anything but glamorous.

Each month when I would have my period I would double over in pain. Some months I would miss a couple days of school because the pain was so bad. I have vivid memories of me curled in the fetal position on my bed, screaming in agony because it hurt so bad. Around my freshman year of highschool the bleeding each month got out of control and I would pass clots and bleed through pads. After sleeping I would wake up in the morning to patches of blood on my sheets. It was awful.

Finally at age 15 my mom took me to our PCP and she put me on birth control pills to help with the cramping and hopefully regulate the bleeding a bit. I felt better on the pill for a couple of years, but by age 17 the pain was back and worse than ever. And at that point the pain wasn’t just when I had my period but started happening on an almost daily basis. So by age 18 I was sent to a GYN for the first time and after much research on my own I felt like I had endometriosis. When I told the GYN this he laughed and said “no one under the age of 26 gets Endo.” He put me on Lupron shots (which should have never happened before having a dianostic lap) for six months and said if I wasn’t better after that we would schedule surgery. Lupron was the worst experience ever and I was not better. I just felt worse despite not having a period due to the shots. The side effects from Lupron made me so sick. Finally right after my 19th birthday I had my first surgery…and low and behold my GYN said “guess what young lady, you have Endo!” I wanted to punch him in the face. He should have listened to me to begin with.

Anyway, that is kind of my back story. Fast forward to 2012, coming up on my big 30th birthday and I have had numerous lapascopic surgeries to clean the endometriosis out as well as a complete hysterectomy. Yet sadly, the endo persists and keeps growing. This has had a huge physical impact on my adult life. I am one semester shy of having my Bachelors Degree in Liberal Studies, but due to severe pain I never got to finish. I haven’t worked for three years because I am in debilitating pain every day.

I can’t keep/make plans with people because I never know when I am going to feel good enough to get out of bed and out of the house. If I do succeed and do something with friends, or even just run errands tending to what I need to get done, let alone attend a special event that requires lots of energy, I can plan on spending the next 2-3 days in bed. My body just doesn’t have what it used to to fight through the pain anymore. When I was in college I worked full time, went to school full time and volunteered as youth pastor at my church – all while fighting the pain of Endo. But my body just doesn’t have that stamina in it anymore. I feel like those years of pushing so hard just ran my body into the ground.

Traveling being sick is another part where the physical impact from Endo is great. It drains my body of energy and is super hard on me. It is hard to sit for an extended amount of time so whether I am driving or flying, I hurt after too long. I have many doctors appointments out of town and when I have these appointments, I have to schedule in extended stays to rest. I either go down early and stay in a hotel or I drive down the morning of my appointment and then stay over that night because there is no way I could make a round trip and be safe to do so.

Finally I want to note something about vacations that many people do not understand. This can fit into next week’s topic of the “mental impact” Endometriosis has, but it fits here as well. When I go on vacation (Disneyland for example) it isn’t like the rules of my body change. I don’t just wake up and then go play all day. Many mornings I still sleep in and don’t even start my day until noon. And after several hours in the park, I am ready for a nap. Often I will go back to the hotel and sleep while the rest of the group I am with continues to play. I don’t get to ever just “feel good” and keep going. I have to allow for what my body needs. Sometimes plans have to change based on how I feel. Even certain rides can’t be ridden by me because they are too jerky or exciting for my body. And by the time the “vacation” is over I am trashed and literally need a whole week to sleep and recover.

I know this was a long post, so if you are still here…THANK YOU. It is my hope that by the end of this month many of you can understand me better. I also hope that these posts will help raise awareness of how Endometriosis changes lives and why more funding needs to be allocated for research.

 


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Responses

  1. You didd a great job of helping people understand endo better and sharing your heart and helping people see why there needs to be more funding made available for research. You are a great writer and your heart comes through on the page.

  2. Hi Diane,

    I found your blog through the Blogging for Endo Awareness link up. Thank you for sharing your story! I am so sorry to hear about all that you have gone through with endometriosis. It breaks my heart. I too hope that endo awareness and funding increases greatly, and that they find better ways to treat this debilitating condition.

    Endo survivors are some of the most amazing women I know. 🙂 Stay strong!

    • Thanks for your kind words Carly. Much appreciated. 😉

  3. Hi, sweetie.

    Yes, what you go through is so hard for the average person to comprehend.

    What sorrows me most is that it is no longer rare. Too many are impacted by this, and so are the families.

    Your mom is a trooper! One of my heros.
    And, you are stronger than people realize, just not in the way you want to be.

    Very well written post.

    I love you.
    You lifelong friend. You can’t shake me. lol!

  4. During those times when you can steal away a moment or two out of pain, ask questions of those you care about, work on completing your bucket list, and share things with others to complete your journey here on earth. Do this as you consider only God knows if we will wake up the next morning. Yes, live one day at a time (Matthew Chapter 6:34), and also keep the mindset that God is watching you day and night.

    Finally, during all these times, continually keep your eyes on Jesus, your mind focused on what our heavenly Father would want you to focus on, and know in your heart that the God has supplied a ministering Spirit for us. For after all, we are never alone and although some may not know what is going on in your mind, our heavenly Father surely does.

    Love – your earthly father.

    • Thanks dad. I love you.


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