Endo...

Endo.
Short for Endometriosis. We are so tight, that we don't stick to technical verbiage anymore. :)
I wanted to share my story and what is going on with me, for friends and family who may not know exactly what is happening. Maybe you, or someone you know, has battled Endo also and you may have encouragement or ideas to share...and I would LOVE them! It is so nice to know that you are not alone and to have prayer and support as we face this battle. **This post is a little longer than normal. Forgive me. This journey has been a rough road but I would love for you to stick it out and read how God has taken care of me through this process**

I suffer from Endo. I have fought this condition for many years. It started as soon as I started, basically. We didn't know that is what it was, but every month there was a week that I was shut down. Pain like crazy--so bad I lived on prescription anti-inflammatory meds from 9th grade on, basically. It usually ended up causing me to miss days from school--sometimes even the whole week. Accidents were a common thing, as the bleeding was so bad. I just thought this was my lot to bear, being a girl. I didn't know other people weren't like me. I thought this was normal.

College came and did BC pills. Not for any other reason than to try to regulate me and help reduce the pain. It really didn't do much good, but it did help a little.

Then the pain became a nightmare around 2007. It was causing me to miss out on normal daily activities and withdraw because of pain. My doctor decided to do an endometrial laparoscopy to check for Endometriosis. Surgery was scheduled and completed. There was evidence of Endo, as well as Adenomyosis (another uterine condition). The next step in this battle against Endo was an IUD--again, not for BC but for pain management and regulation of the condition. (This is rare to receive if you have not already had children. Thankfully, insurance agreed and we had this inserted.)

The next several years were GREAT...minus one side effect of the IUD--cysts. I had another endometrial laparoscopy a year later to remove a cyst that was growing on my ovary and the drs were concerned of torsion. My goal at this point was to have the dr remove all my female organs. I was so sick and tired of being sick and tired. Being single, in my 20's, and otherwise healthy, this was not the route anyone, but me, wanted to go. I woke up in recovery in 2008 to be disappointed that I had all my "stuff". I know, everyone thought I was crazy. I was just tired of fighting this.

2009.
This is when the real deal started. I started having some low back pain and began to see a Chiropractor. I had regular adjustments, worked really hard on my posture, did some low back exercises, continued to work out regularly, but the pain would not go away. In fact, it was getting worse.
2010.
Starting around February of 2010, the pain started to intensify and be consistent. Dr visits started soon after. MRIs of my spine revealed I was in perfect health. Nothing to show. Xrays showed nothing. There was no medical reason found for why I was hurting. 2 rounds of physical therapy proved unsuccessful.
November 2010.
I can no longer work because I cannot sit, stand, walk, or perform normal functions due to the pain in my low back and now radiating down my right leg and into my right foot. I set up an appt with a spinal dr in Greenville, SC, hoping for insight into why I had this pain that has completely shut me down. The dr ordered an MRI and CT myelogram of my hip and spine. This is where we found the culprit.
December 2010.
I had just left the radiology center going to get my marriage license (Yes, I was still planning on getting married in Jan 2011--pain and all. Yes, I did marry one amazing man, who was willing to put up with me--pain and all.) I received a phone call from a tech at the center. She sounded puzzled on the phone and asked me if I could come back in, as they wanted to take a few more images of my hip. She also asked the million dollar question, "Have you ever had Endometriosis?" Ding, ding, ding. Bells and whistles start going off in my head. Could this be an Endo issue and not a spine issue after all???
December 2010.
I have the results from the MRI. I could not wait until after Christmas to see the spine dr to read the MRI results. I set up an appt with my Ob-Gyn dr and had her read the results. As we would then find out, the culprit was an Endometrioma that was growing and resting on my sciatic nerve! Sugery was scheduled for the end of January and there was hope of healing! Pain free wasn't going to be too far away. It is amazing how your outlook changes when there is hope in sight!

2011
Here we are. I'm now Mrs. Scott DeWeil and have had my 3rd endometrial laparoscopy surgery to remove the endometrioma and I ended up losing my right ovary and tube also. Physical Therapy was started to build back up my atrophied right leg and I was able to go back to work in February. It had been a long, hard road, but I was hopeful the worst was behind me.

Well...come May, I realized something was bad wrong. The pain, that I had felt all of last year, was coming back stronger and stronger. I jumped through every kind of medical hoop you can imagine from June to August as we struggled to find out what was going on. From back specialists in town to drs at MUSC in Charleston to an Orthopedic dr & painful injections that were trying to treat a condition I did not have...you name it, I tried it. Finally, Dr Clemow, at Blue Ridge Ortho, ordered an MRI of my pelvis. The radiology report came back normal. No issues with my pelvis or surrounding bones. But he dug deeper. He knew my history with Endo and called the radiologist and asked them to look at the images again. Yep, you guessed it. Endo. Endo is now growing on my sciatic nerve and in 2 of the major muscles in my hip. Here I am, not working, again, since end of July, and trying to jump through more hoops to get the pain to stop.

We are now trying Lupron injections. I had my first 3-month injection 3 weeks ago. The pain hasn't lessened as of yet. However, I am hopeful it will kick in and kill this Endo very, very soon.

I have the most amazing God and the most amazing husband & family/friends support system. I truly do not know what I would do without the love, strength, peace, support, encouragement, and provision from Jesus. He has filled me with hope and given me such a better outlook on all this than I've ever had. I, daily, die to myself. I had hopes, dreams, goals, and plans that I have laid at His feet in order to pick up the plan HE has for me. The one that is more perfect and amazing than anything I could ever think or imagine. Are some days still hard, yes. I will not kid you that this is a daily battle. Sometimes a moment by moment mental battle to fight the lies of the enemy that want to take me to a spiral of negativity and self pity. But God. He is so good and I give Him ALL the praise for being so amazing.

So, this journey with Endo is not over. We are hopeful the pain with cease. I do not know what treatment will make that hope a reality, but we pray for clear next steps and drs with wisdom to lead us. Thank you for taking the time to read about and share this journey with me. Your prayers are most appreciated for me, my amazing husband, and my family. They give up a lot for the sake of how Endo has me confined to stay at home or close to home. Your prayers for understanding and grace for them would be awesome.