Conquering Endometriosis: My Endo Warrior Story | Part 2

Endometriosis is an “invisible” chronic illness that affects 1 in 10 women. It’s often referred to as endo by those who suffer from it. And I’m an endo warrior. This is the conclusion of my story and how I’m not just fighting but conquering endometriosis!

Miss Part 1? Catch up here!

Prefer to watch or listen instead of reading? Check out my video Inside Endometriosis here!

Free Endo Warrior Self-Care Cheat Sheet

Want self-care tips to help you conquer life with endo? I’ve got you covered! Get the password for the library with the free 16 Must-Have Self-Care Items for Endo Warriors cheat sheet here by filling out this form:

Something’s very wrong

About 5 months ago, I thought I had a bladder infection. I used to get them all the time before my endometriosis surgery—even as often as 1-2 times a month—but I hadn’t had that issue for years.

So I took an Azo and it went away. Until 2 days later when it was back with a vengeance, and my bladder was burning unlike anything I’d felt before. I had flank pain, a fever, and when I did a urine test at the doctor’s, there was blood, but no sign of infection. They gave me an antibiotic anyway, and I improved a little.

Then I got worse. My bladder just felt so heavy, and I started having pain all over my abdomen. It would move around, it would be everywhere all at once, and it was all different kinds of pain. Burning, stabbing, sharp, aching, pulling, dull, throbbing—you name it.

I went back to the doctor and there was still blood in my urine, but yet again, no sign of infection. An x-ray showed no stones anywhere, and everything looked normal.

Warning: This post contains material that may be sensitive to some readers. My goal in sharing my story is to be open and honest in order to help bring awareness to endometriosis and other chronic/invisible illnesses. That means some things might be TMI for some people, so feel free to read at your own discretion. Also, if you or someone you love deals with a chronic illness, my heart goes out to you! My goal is to encourage you in whatever struggles you’re facing, so please consider yourself virtually hugged by me! xo

I could do nothing for a whole month but sit with a heating pad on my stomach, day and night. The pain would wake me up during the night when it would time out. I thought for sure I would burn out the heating pad.

Finally, the pain became sharp in the middle of my stomach and started moving around to the side, so I figured I’d better go get a CT scan in case appendicitis was trying to set in.

The doctors who saw me in the ER were puzzled to see my appendix looking quite normal. So they deduced that I must have irritable bowel. They gave me an injection that plugged me up for a week and didn’t even touch the pain.

After realizing nearly everything had been ruled out, the idea of endometriosis popped into my head. But this pain was unlike anything I’d ever had before with endo. So it couldn’t be that.

The pain I’d had before was limited to the pelvic area, and this new and strange torture was shooting through my whole abdomen—my stomach, my sides, wrapping around my flanks—it felt like my organs were somehow stuck together and pulling on each other.

That’s when I thought, “Oh no. What if it is endo? Surely not. It couldn’t be. This pain is nothing like that.” But I’d ruled out virtually everything else and no one knew what was going on.

The gold standard

And then I remembered. On my last appointment with my favorite doctor, before she left private practice, she slipped me a card with the name of another doctor.

No number, just a name. I later learned that he was outside of her medical system’s network. So once again, she was going above and beyond to get me the treatment I needed.

“He specializes in complicated cases of endometriosis,” she said.

I asked, “Is mine complicated?” She’d looked at with me big eyes and nodded.

I hadn’t wanted to go see that doctor. For one, I felt okay. I wasn’t to the point of needing another surgery yet, and there wasn’t really any more a specialist could do for me at that point other than continuous birth control, which I was already doing.

And to be honest, I didn’t want to see a male gynecologist. I mean, my doctor might not have had endometriosis, but at least she had all the parts. She knew what it was like to have at least some female pain, she’d had kids for pity’s sake. She could at least imagine endo pain. I didn’t want to see a man.

8 years later, enter that double-you-over, can-barely-move, unrelenting fresh kind of pain. And all of a sudden I didn’t care.

The doctor that could help me could be from outer space for all I cared at that moment. He’s a man? I. Don’t. Care. Let me at him.

His office got me in within a week during the Thanksgiving rush. And this man? He listened to me. I couldn’t believe it.

It was as if my old best wonder of a doctor had turned into a man somehow. I was so happy to have someone promise to help me. I was smiling and crying as my husband and I left his office.

He validated that my symptoms could definitely be from endo. (He even used the term “endo” which I’ve never heard a doctor use before, only patients who have it.) He scheduled an ultrasound.

When the results came back that everything looked okay, I couldn’t believe it. I almost broke down into tears. I thought, “Great. Now he’s going to send me home and not even care or believe me anymore.”

And then he said this, “Just because we can’t see it on imaging doesn’t mean there’s not something going on inside there.” And he scheduled me for laparoscopy. For the second time in my life, I was ecstatic to be having surgery!

And then. THEN. He started explaining about ablation. I thought, “Yeah, yeah, I know, it’ll probably come back, who knows how long I’ll have any relief, blah blah.” And then I heard him saying that he wouldn’t be doing that.

He said excision was the gold standard in endometriosis treatment, and that he’d done special training for a whole year in just excision. That it was his specialty.

My jaw dropped to the floor. Maybe even down through a story or 2 of the office building. I’d searched and searched online for an excision specialist in my area, and the closest I’d ever found was hundreds of miles away. And here’s this man 10 minutes from my house.

God knew. That’s all I can say. God knew, and over the course of 8 years, this plan was finally coming to fruition for me to have some relief and conquer this awful disease.

Free Endo Warrior Self-Care Cheat Sheet

Want self-care tips to help you conquer life with endo? I’ve got you covered! Get the password for the library with the free 16 Must-Have Self-Care Items for Endo Warriors cheat sheet here by filling out this form:

REALITY CHECK

If you’re not familiar, excision isn’t just burning off the top of the diseased tissue with a laser. Excision removes endo implants by cutting them out by the roots, oftentimes including the surrounding tissue. The chance of regrowth in the treated area is drastically reduced, and many women find permanent relief after excision surgery.

The aftermath

Surgery revealed that I had endometriosis implants all over my bladder. My doctor worked to get it all out by the roots, but because of how progressed it was—plus the weakened state of my bladder—he tore a hole in it.

He tore a hole in my bladder.

I ended up having a catheter for 10 days while my bladder healed. It was brutal. I had so much post-surgical bleeding, and everything that was done triggered my period, which was at a whole new level of intensity.

The doctor removed endometriosis adhesions in the space between the vagina and the rectum, so I had pain there too, and still do. But here’s the amazing part: about ⅔ of my poops are normal and pain-free now.

It’s a miracle. I couldn’t even remember what it was like not to have to go RIGHT NOW or else something out of Los Alamos was happening. (Insert tearful emoji.)

During surgery, my doctor also had to remove one of my ovaries. That “spleen” of a left one that was the original troublemaker back when I was a teenager. The doctor also scraped the side of my abdominal wall where the ovary had been attached, so he’s hopeful that he got rid of all the endo in that area.

I was a little wary about losing an ovary because of my experience with low-estrogen birth control. But my doctor assured me that my healthy ovary would take over for the missing one and I’d never know a difference.

But I did. I was really overwhelmed and depressed for a short while. I cried and felt worthless and just incapable of functioning. It was a horrible feeling I wouldn’t wish it on anyone.

Thankfully my husband is the best husband in the world (no bias there), and he directed me to scriptures and read them aloud to me even as I was crying.

I feel much better emotionally now, but I can tell it hasn’t run its course. I still feel down sometimes, and that intense feeling will try to creep up on muh soul in some situations. Through my experience with anorexia, I can identify it pretty quickly, and I go to the Lord in prayer immediately.

Conquering endometriosis

I’m 2 months out from my excision surgery now, and I’m still healing. I’m kind of a slow-mover when it comes to lots of things, so why should healing be any different, right? LOL.

I had the whole catheter and bladder issues to deal with, and I had a reaction to the stabilization devices, as well as the surgical glue used on my incisions.

A couple of them opened up, and a bit of glue got stuck in one of them. The tissue reaction caused it to start healing while it was open, so my doctor had to clean it out and scrape the edges raw again and get it bleeding so it could heal properly.

It’s finally closing up, but there’s still a sore, hard bump under the surface. It’s ridiculous that it’s taking my skin so long to heal, but I keep reminding myself that my insides probably still aren’t 100% either.

I can’t do much yet without having increased pain. I had to leave church early the first time I went back on Sunday. But I’m trusting that God is in control of all, and I have seen an overall improvement.

I’m so glad to be free from pain every moment! And the heating pad is no longer stuck to me all day and night.

The Lord brings healing in many different ways, and I’m trusting Him for full healing of this disease in His time. I believe His will is for us to be healed. The Bible tells us that all who came to Jesus in faith were healed. There is no record of His withholding healing from anyone who came to Him. (See Matthew 15:30-31.)

I know there can be some debate among believers on the topic, but sometimes the Bible simply means what it says, and it can’t get much clearer than this: By His stripes, we are healed. (See Isaiah 53:5 and 1 Peter 2:24.)

Praise God!

And ultimately, the name of endometriosis—and that of any other illness—has to bow its knee to the Name above all names: Christ Jesus!

Working together for His glory

An awesome thing about this latest part of my endometriosis journey is how God has used this season to reveal a few things to me.

Through the pain, the frustration, the roadblocks, the waiting… I decided to open up my ears and hear Him. And there He was, as He is always.

Here’s what He revealed to me:

1. Trust Me with your finances.
2. This is only one of many seasons that make up your life.
3. I am beside you, follow Me through this.
4. I will be glorified, and something good will come from this.

All of these 4 things have something big in common. Did you catch it?

TRUST.

My precious friend, whatever you’re going through today, whether it’s financial struggles, chronic illness, job loss, family issues, or any number of things, please know this:

The only certain thing in this life is God. He is the same yesterday, today, and forever.

Be like John. Lean into Him.

Read more about these 4 ways my chronic illness has blessed me here.

Awareness

I hope my story of fighting endometriosis has encouraged you to keep pushing through whatever you’re going through, and to not give up hope!

I’m sharing my story to help raise awareness of this disease and bring light to something that is otherwise invisible. And if you’re an endo warrior too—yes, with the help of the Lord, you can conquer this. KEEP. FIGHTING.

xo Liv

Free Endo Warrior Self-Care Cheat Sheet

Want self-care tips to help you conquer life with endo? I’ve got you covered! Get the password for the library with the free 16 Must-Have Self-Care Items for Endo Warriors cheat sheet here by filling out this form:

Related posts

• Inside Endometriosis: My Video Story
• 4 Ways My Chronic Illness Has Been a Blessing
• How I Beat Anorexia
• How Can I Stop Feeling Overwhelmed?
• 12 No-Cost Mother’s Day Gifts (from the Heart)

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