Endometriosis Symptoms, Diagnosis, and Treatment: My Personal Story

Living with endometriosis is like trying to solve a puzzle where the pieces don’t quite fit. It’s confusing, frustrating, and at times, completely overwhelming. If you’re reading this because you suspect you have endometriosis—or because you’ve been diagnosed and feel lost—I want you to know that you’re not alone.

This is my story. It’s a story of pain, persistence, and learning how to advocate for my own health when the medical system failed me time and time again.

The Early Signs: When Pain Was “Normal”

I can’t remember a time when my periods weren’t painful. Ever since I was a teenager, I dealt with excruciating cramps and heavy bleeding that made me dread every month. While other girls complained about period cramps, mine felt like someone was stabbing me from the inside out. I would miss school, curl up in bed with a heating pad, and try to breathe through the pain.

But I was always told, That’s just part of being a woman. And for years, I believed them.

Things Got Worse After Pregnancy

In 2013, I gave birth to my daughter, and while she was the greatest gift, my menstrual cycles became an absolute nightmare afterward. The pain was worse than ever, and my periods were heavier than anything I had ever experienced.

I was exhausted all the time—not just tired, but deep, bone-crushing fatigue. My body felt like it was constantly inflamed, and I struggled to make it through the day. The pain wasn’t just during my period anymore; it was creeping into my everyday life.

When I finally reached out for help, I was put on birth control. Doctors told me that hormonal treatment was the best option.

But here’s the thing—I did not tolerate the pill well. My mental health took a nosedive. I felt like a completely different person—anxious, depressed, and not myself at all. The trade-off of physical pain for mental distress wasn’t something I could live with.

And when I explained this to my doctors?
I was met with blank stares and more prescriptions for different types of hormonal treatments that still didn’t work for me.

Finally—A Diagnosis (Sort Of)

It took years of advocating for myself, but in 2020, I finally met a gynecologist who suggested a uterine ablation as a possible solution. Since I was done having children, it seemed like a good option. I was willing to try anything at that point.

But during the ablation, something unexpected happened—they found endometriosis.

I finally had an answer.

The surgery did help for a while. Bleeding was gone due to the ablation, and the pain was more manageable. But within a year and a half, my symptoms came roaring back.

It was like my body was fighting back. I knew that ablations weren’t a cure for endometriosis, but I had hoped for more relief.

A Partial Hysterectomy—But Still Not a Cure

When my symptoms returned, my doctor recommended a partial hysterectomy (removing my uterus but keeping both ovaries). I was desperate, so I agreed.

For a little while, it felt like I had finally gotten some relief. My periods were gone, and some of the worst pain had subsided.

But two years later, my endometriosis symptoms returned—worse than ever.

Now, I was dealing with new complications:

  • Gastrointestinal issues that made eating a challenge
  • Bladder pain and discomfort while peeing
  • Pelvic pain that extended into my lower back and legs

I was devastated. I had gone through multiple surgeries, only to end up back at square one.

Why Hysterectomies and Ablations Don’t Cure Endometriosis

One of the biggest misconceptions about endometriosis is that a hysterectomy or an ablation will fix it. But here’s the truth:

Endometriosis is NOT a disease of the uterus—it’s a disease where tissue similar to the lining of the uterus grows outside of it.

  • A hysterectomy only removes the uterus—it doesn’t address the rogue endometriosis tissue that may still be growing in other areas.
  • An ablation only burns the surface of the uterine lining—it doesn’t remove deep endometriosis lesions.

For some people, these procedures might provide relief, but they are not a cure. I had to learn this the hard way.

Preparing for Excision Surgery—The Gold Standard for Endometriosis

Now, I am preparing for excision surgery, which is considered the best option for truly removing endometriosis. Unlike an ablation or a hysterectomy, excision surgery removes endometriosis at its root, rather than just burning the surface.

This time, I’m seeing an endometriosis excision specialist—not just a general gynecological surgeon.

And this is something I cannot stress enough:

If you have endometriosis, you need an excision specialist.

Most general gynecologists are not trained in excision surgery. Many only know how to perform ablations, which do not fully remove endometriosis.

If you’ve been suffering for years and have only been offered birth control, ablation, or a hysterectomy, please know that there are better options. Finding an excision specialist can be life-changing.

Advocate for Yourself

Looking back on my journey, I wish I had known:

  • It’s okay to say no to treatments that make your mental health worse. If you don’t tolerate birth control or hormonal treatments, you are not alone.
  • If a doctor isn’t taking your pain seriously, find another doctor. You deserve to be heard.
  • Endometriosis is not just a “bad period.” It affects your entire body—your digestive system, bladder, nerves, and more.
  • Excision surgery is the gold standard. If your doctor is only offering ablation or hysterectomy, keep looking.

If you’re struggling with endometriosis, I see you. I know how exhausting it is to fight for answers. But you deserve answers. You deserve to be heard.

I’m still on this journey, but I refuse to give up. And if you’re going through this too, I hope you won’t either. I find a lot of help leaning into a community over at My Endometriosis Team.

You are not alone. Keep advocating for yourself. Keep fighting for better care. And never stop searching for the relief you deserve. ❤️

6 responses to “Endometriosis Symptoms, Diagnosis, and Treatment: My Personal Story”

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    1 in 10🌻 Sending healing energy your way.
    I know the struggles.

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    1. littlehopenotes Avatar

      Thank you so much.

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I’m Nikki

Welcome to Little Hope Notes, my cozy corner of the internet dedicated to women living with Endometriosis, POTS, or ADHD. Here, you’ll find resources, practical tips, and hope for your journey. You matter. xx

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