Bringing you up to speed

In February 2016 I was diagnosed with stage 4 endometriosis. If you are unfamiliar with endo, it is a chronic condition currently without a cure, where tissue that is similar to the lining of the uterus shows up in other places in the body. In my case it was all over my abdominal organs (bladder, bowel, intestines, etc.) causing severe pain and causing my organs to stick together. I also had an endometrioma (also called a chocolate cyst) that had ruptured on one of my ovaries. 
 

I would describe the pain I felt as barbwire wrapped around inside me, so when I saw this picture, it was the perfect illustration. Photo Credit: Center for Endo

1 in 10 women have endometriosis making it extremely common, even though it is highly misunderstood. It is difficult to diagnose because you must have surgery to know for sure if endo is present. It is often dismissed as other conditions. It often runs in families and I am convinced my mom had it, but never knew it.  One reason we don't talk about it is because it is a "woman problem." Some of you may be getting squeamish already, but the more we talk about it, the more women will recognize it and get the help they need. The average amount of time it takes from the onset of symptoms to receiving a diagnosis is 6-10 years. It took 16 years for me. I began having symptoms when I was a freshman in college. I would lay on the floor in the shared bathroom of our dorm, close to the toilet so I could throw up from the pain.
 

My daughter made this picture for me to take to Atlanta for my excision surgery in August 2016

I'm not sure if my doctor suspected endo when I was 18, but I was diagnosed with ovarian cysts and put on birth control pills. The BC pills controlled the pain but over time endometriosis was still building up inside me. There are a lot of myths regarding endometriosis. Here are some I've heard from well meaning friends and also from doctors: you waited too long to try to get pregnant, you should get pregnant and it will go away, you will have to have a hysterectomy, you will never be able to have children, it was caused by some repressed emotional trauma, it's just "normal" PMS, you need to go back on birth control pills, you will definitely lose at least one of your ovaries. I've also been sent from one doctor to the next because they didn't know what to do with me. Multiple doctors told me, "You definitely have to have surgery, but I don't feel comfortable doing it." 
 

Taken in February 2016 before my first surgery.

My first surgery was in February 2016 in Clarksville, TN. I was assured that my surgeon was well experienced to be able to remove my endo through laparoscopic surgery. She was planning to use a laser technique that basically burns off the endo lesions. Fortunately, she did not attempt to do this. She looked inside me and decided there was too much endo for her to safely remove. I was upset at the time but am very grateful that she did not cause any further injury by trying to remove anything. If you have or suspect that you have endometriosis, find a doctor who is an expert in this disease. Your regular OBGyn is most likely NOT an expert. Laser ablation burns the endometriosis but since it is not able to completely remove all of the disease, it tends to come back in one or two years. Women continue to have multiple surgeries throughout their lifetime. After my surgery I was told that there is not a surgeon who exists who would be able to remove the amount of endo I had.  

Thank goodness I did a little digging on the internet (yep, the internet gave me better advice than my doctor) and I found The Center for Endometriosis Care in Atlanta, GA. The Center for Endo uses a laser to excise or completely cut out the endometriosis lesions. There is a 10-20% chance the endo will return, versus a 70-80% chance with the laser ablation I spoke of above. I sent in my medical records and received a phone call from the medical director himself who would be doing my surgery. He walked me though all of the procedures they would do and told me he was very confident he would be able to remove all of my endo. I got off the phone in tears. 
 

Recovering from surgery in August 2016

I've been given a 12 week recovery time, which feels SO LONG! However, I am very hopeful, grateful, and thankful to be so blessed. During this time I've been reading 1 Peter over and over again. If you are suffering in any kind of trial, this book is full of encouragement. 

1 Peter 1:6-7 says, "In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed."

If you have stumbled upon this blog and have been diagnosed with endometriosis, think you might have endo, or know someone who does, here are some resources that might be helpful: 

The Center for Endometriosis Care in Atlanta, GA. The website has invaluable information all about endo. They will do a free medical records review to see if they believe they can treat you. If your doctor is saying you must have a hysterectomy, you'll never have children, or to live with your pain, please get a second opinion, and a third if needed! There is hope!

Endo What? is a documentary full of helpful information on what is normal and what is not. What is a myth and what is the truth.

Endo Resolved is a blog with info on surgeons, diet, treatments, symptoms, etc. One of the most helpful resources I found here was a detailed post on what to expect before, during, and after laparoscopic surgery.

Finally, another blog about endo that includes a thorough list of of items that might be helpful if you are traveling for surgery. You can also sponsor a surgery, or purchase Ruby, the Endo Roo.

My dad, Jim Jackson, and husband, Luke Baine who took care of me during my surgery and recovery in Atlanta.

It can feel very discouraging when you don't feel well and are unsure about the outcome. Will you ever feel better? Are you being a wimp and need to suck it up? Are you letting everyone down? How do you rely on God's strength on days you can't even get out of bed? Will you ever be able to enjoy the things you used to do?? 

"Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast. To him be the power for ever and ever. Amen." 1 Peter 5:6-11

It's interesting that Peter mentions our enemy, the devil, when he is speaking of suffering. He says that the devil is looking for someone to devour. The questions I asked above could easily devour me if I keep my focus on them instead of on God who, "will himself restore you and make you strong, firm, and steadfast." Praise God!