Have you heard of endometriosis? It’s a disease many women around the world are fighting every day. It’s an intrusive, debilitating illness that can wreck the lives of those who suffer from it. And yet, it’s still largely unknown or misunderstood, even within the medical community.
Part of the reason is because, even though a woman can be fighting endometriosis with all she has, that war can appear invisible to others. It’s also because the women who deal with it are oftentimes trying with all their might to maintain a semblance of “normal.” Even when their bodies war against them daily.
It’s estimated that 1 out of 10 women has endo. I’m one of those 10. It’s a battle I never expected to face. But I choose to fight endometriosis. Because there’s no alternative.
Already finished Part 1? Jump to Part 2 here!
Prefer to watch or listen instead of read? Check out my video Inside Endometriosis here!
Fighting Endometriosis: My Endo Warrior Story | Part 1
My mom was afraid I had appendicitis. The pain in my lower right abdomen was horrendous. I was about 17 or so, so when my mom called the hospital, they told her to take me in to the children’s emergency room.
They ran several different tests and ultimately found nothing wrong. The ER doctor told me I should see a gynecologist.
The gynecologist told me none of my symptoms could be caused by any kind of female issue. She gave me a condescending smile, told me I had painful periods, and shoved a handful of 10-year-old pamphlets into my hands.
I read them all. And the very last one described every one of my symptoms to a T. Apparently this doctor could’ve learned a thing or 2 from her decade-old pamphlets.
She prescribed a birth control pill that was supposed to make my periods more regular and less painful. But all it did was make me sicker than a dog. I tried it again and I was even sicker.
From that point on, I basically gave up on getting a doctor to listen to me or try to figure out what was going on.
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
Endo’s attack on my body
For 10 years I had the worst, most painful, heavy, sick-making periods. Two weeks out of every month consisted of pain, bleeding, and other symptoms.
Two weeks each month. That’s half of my life.
It got to where my symptoms were seemingly random, completely unrelated to ovulation, PMS, or my actual period.
At arbitrary times I would get horrible pains—sharp and stabbing, cramping and aching—they would make me double over and take my breath away. And there was no way of knowing when they would come, how long they would last, or how bad they would be.
I got to where I’d refer to it as my “spleen” so people wouldn’t know it was a female problem. Because how awkward is that? (Obviously I’ve gotten over that now as, lo, here I am sharing my story.)
My mom or sister would be able to tell I wasn’t feeling well or that I was in pain and ask about it. I’d use my codeword and croak out, “My spleen.”
When I’d grab the bottle of ibuprofen and take 3 pills… “My spleen.”
That was my life for years and years. Only it got worse along the way. At first the painful bowel movements would happen only during my period, but then they became random too.
Diarrhea was something I had to deal with half the time, or very sudden poos that would send me running for the bathroom. I absolutely could not hold it. If I tried I’d turn green, break out in a sweat, and be sick from the other end. And then have the poos anyway.
My bladder was so frustrating to deal with too. I couldn’t hold my pee for very long at all. And right after I’d eat, my bladder would be full within 20 minutes. And after that, it would be full in another 20 minutes.
I was getting up at night to pee anywhere from 4-12 times. Every. Single. Night. I didn’t get much sleep and it wore me down and it wore me out.
Then it got to where I would wake up in the middle of the night and throw up. For no reason. No virus, no fever, no other symptoms. And that wore me out even more.
Endo’s attack on my life
I couldn’t do anything besides go to work, and I could barely do that. At the time, I worked as a sign language interpreter in K-12 schools, and when you’re interpreting in the middle of class, you can’t just get up and go to the bathroom for 10-20 minutes.
But I would, because I couldn’t help it. I would be in the restroom with the sick poos worrying about what I was missing and how the deaf student was getting along. I needed to get it all under control, but my body just refused.
It was such a helpless, hopeless feeling. And on top of that, I felt guilt. I couldn’t help having to leave the room at times during work. I couldn’t help being sick. And I couldn’t help that that would wear me out and I’d get sicker.
It got to where I couldn’t do anything but work. From the moment I got home every day, I’d lie on the couch. On rare occasions my husband would make our supper, or I’d put a frozen dinner in the oven. But mostly we’d go get fast food or take-out.
I didn’t have the energy or stamina. I couldn’t cook, go grocery shopping, pay bills, do laundry, do the dishes… And forget about going out to the movies even, or any sort of date, or to visit our family.
If I did anything other than rest, I’d get sick and miss work the next day. On the weekends, I had to use my Saturday to rest and recover from the previous work week, and my Sunday was spent resting up for the work week ahead.
I couldn’t go to church because I’d be sick and miss work on Monday. It was horrible. I felt like all I did was work. And because we needed my job, everything revolved around me trying to avoid being sick. So it was true, all I was ever able to do was work. Barely.
It got depressing. I couldn’t go out, I couldn’t participate in anything… I couldn’t have fun. It was miserable. I used to cry and wonder how other people did it.
Family and friends thought I was a recluse and didn’t want anything to do with them. But how do you explain your “spleen” to people without going into a lecture, weirding them out, or breaking down?
So the fact that people thought I was making something up added another layer to it all. And the fact that everything I felt was invisible made me start to second-guess myself and everything I was dealing with.
- Inside Endometriosis: My Video Story
- Conquering Endometriosis: My Endo Warrior Story | Part 2
- How I Beat Anorexia
- Why You Will Never Be Enough–and Why That’s Okay
- 12 No-Cost Mother’s Day Gifts (from the Heart)
Fighting back against endometriosis
Then my mom recommended her gynecologist to me. “She will listen to you,” she said. Which was all I ever needed in the first place. Someone to listen, someone to offer belief and possibly help. So I gave it one more try.
The woman was amazing. She realized right away that my symptoms were either from endometriosis or a certain kind of cancer. So she did a test immediately. She ruled out cancer and we scheduled laparoscopic surgery the same day.
I couldn’t believe it. This doctor had heard me. And believed me. And made it her mission to help me.
Endometriosis can only be definitely diagnosed through surgery as it very rarely shows up on imaging, which is why my wonderful new doctor got me in for surgery as soon as possible.
And guess what? She found it.
It was on my bladder in several places. And my left side where I always had the worst pain? My ovary was pulled tight and stuck to the side of my uterus. And the front of my uterus was adhered to my abdominal wall.
And she treated all of it. She used ablation—which is basically taking a laser to the endometriosis tissue, the adhesions, and the scar tissues—to blast it all away.
She spent hours working on me because it was even worse than she’d thought once she was inside. I ended up having to stay in the hospital overnight. She told me my endo had progressed to stage IV—the worst stage. And all because no one had listened to me 10 years before.
And do you know what else this amazing doctor did for me? Not only did she treat my endo as thoroughly as possible, but I had recently been diagnosed with a hernia at that time, and my incredible doctor arranged to have my hernia repair done at the same time as my endo surgery.
Two surgeries at once so I wouldn’t have to go through them separately, and have double the hospital bills. And not only that, she made sure she was the one who closed my hernia incision so that she was the only doctor I’d have to see post-op.
This doctor was truly a blessing, and although she only does emergency medicine now, I’m so thankful to have had her in my life at that time.
Unfortunately, many women with endometriosis struggle to find a doctor who (a) will listen to them, (b) will work to find an effective treatment plan, (c) are familiar with the disease, and (d) specializes in endometriosis.
Winning the battle
My recovery after endometriosis surgery went well. Honestly, I didn’t even notice the incisions. I had some bleeding afterward because my doctor ended up having to do a D&C since the lining of my uterus was in such bad shape from years of untreated endo.
I’d had the hernia repair at the same time, and that’s what I really felt during recovery. I barely noticed the endo surgery recovery at all.
It took a couple of weeks before I could return to work, due to complications with the hernia repair and infection. But overall, the results from the endometriosis part of surgery was more than I could have hoped for.
I slept through the night for the first time in years—only having to get up once to go to the bathroom. I think I cried.
Over time, it started to vary. Up to the bathroom a couple of times here, 3 times another night, 2 times the next. Even 4 times. But it was never half a dozen. And it was never EVER 12 times anymore.
No more throwing up in the night because #endo. Even my painful poos were less painful. I was absolutely thrilled.
A prognosis of war
But then the doctor told me that there was a good chance all the endo tissue would return and more scar tissues would form. Endometriosis is such an invasive disease, and the cause and nature of the illness aren’t fully understood, even by specialists.
I’d been on continuous birth control for years to address my symptoms—which is the typical first line of treatment—so I only had a period a few times a year, which helped keep my symptoms from progressing as fast.
But after surgery, my doctor wanted to take it a step further and go to low-estrogen birth control to try to keep the endometriosis implants from growing back as quickly. So I switched over to the new birth control. And it was horrible.
I became so depressed. I remember crying and being nearly nonfunctional. The smallest thing would stop me in my tracks and I couldn’t make a decision. It reminded me of how I felt when I was anorexic and my hormones were out of whack.
So the doctor prescribed another pill that was a level higher but still low-dose. And it was just as bad. I was miserable emotionally, and that was just as bad as—if not worse than—the physical symptoms. Thankfully, my doctor agreed it was no way to live, and I went back to my old birth control.
What endo does to the body
You see, the shedding of the uterine lining is what causes a period, right? Well with endometriosis, rogue bits of endometrial-like tissue travel around the body, adhering to and implanting themselves in places where they shouldn’t be. Like on ovaries. Or the bladder. Or the bowel.
Some women have even had endo implants cause heart failure or lung collapse. They can end up migrating to and causing trouble in virtually any area of the body, even as far away as the brain.
So when the hormones kick in and cause a period to begin, the implanted endometriosis tissues—wherever they’re located—start bleeding too. And over time that tissue builds up, with no outlet. So implants form, adhesions form, and scar tissue forms.
The treatment I’d received during surgery was ablation—using a laser to zap the problem tissues. And while ablation brings relief of symptoms for a time, it doesn’t remove the root of the tissue. This means it’s usually only a matter of time before the same problems return—and sometimes they’re worse due to scar tissues from previous surgery.
It’s not uncommon for results to last only a few months. And it’s not uncommon for women to have multiple surgeries, even as many as 10—and possibly more—throughout the course of their lives and the disease.
Endo’s sneak attack
I count myself very blessed because I didn’t have any more horribly unbearable symptoms for nearly 8 years.
Yes, the trips to the bathroom at night were increasing again over the years. And I was getting worn down.
I started having more issues with painful bowel movements, and I had to take anti-diarrheal medicine almost daily just so I could go to work.
My quality of life was deteriorating. I was able to do less and less besides work. My life had slowly returned to the necessary routine of recovering from one work week and resting up in preparation for another.
I started feeling aggravated by it, but because it took years to get back to the way it was before, it was only slightly noticeable at first.
I’d forgotten that having these symptoms wasn’t normal.
And besides, I wasn’t throwing up in the night anymore, so I was very happy to count that a win. But my body was still heading downhill, in many ways. And then it all hit me at once.
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