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Endometriosis Explained: A Comprehensive Guide to Understanding the Invisible Disease

endo awareness Mar 31, 2024

The Invisible Disease

To close out Endo Awareness Month, I am excited to share a blog post on understanding the ins and out of endometriosis. This post is for everyone!!!  Today, I'm going to raise awareness about how to identify the condition early, offer support for women who suspect they may have it, guidance for those recently diagnosed, and empowerment for Endo Warriors navigating this disease over the long-term. No matter what phase you're in, the intention is for you to learn something.

In this article, I'll delve into not only the symptoms, treatments, and diagnosis of endometriosis but also how to empower yourself by "doing the research!" As always, I'll be sharing my personal experiences throughout for your perspective only.  The goal is for you to always take what resonates with you and throw out what doesn't. I want you to feel empowered so you can advocate for yourself or the people you love! Let's dive in! 

 

Why This is Such a Big Deal: Yes, it's Personal. 

Diagnosis came late for me—at 33—right in the middle of my husband and me trying to expand our family for two whole years. Looking back, I realize those symptoms had been knocking on my door since my mid twenties. Six years of medical professionals saying everything was "normal", and it makes me wonder—what if I'd known sooner? What if I'd been more proactive about my fertility, about understanding what was happening inside my body? It's a question that weighs heavy. The point is if I would have known earlier I definitely would have done things differently.

Learning more about my fertility status—AMH level, follicle count, which both measure ovarian reserve—could have changed everything. Maybe I would have chosen to freeze my eggs, or maybe my husband and I would have started trying for a baby as soon as we got married, instead of waiting over a year, thinking we had all the time in the world. And those large cysts I found out about—could I have been monitoring them more closely? Could I have caught them before they became such a hurdle? These are the kinds of questions that fuel my passion for spreading awareness about endometriosis!

And for many, an early diagnosis can make a world of difference, especially considering how often we're dismissed and gaslit about our pain. The moment someone chalks it up to "just period pain," the severity of our condition is often downplayed. But the reality is, it's excruciatingly real and debilitating. It affects teens' ability to go to school, adults' ability to go to work—I've talked to women who have lost their jobs because of it. Women who have been unable to work altogether and had to completely restructure their lifestyle (move back in with parents, relocate to have more support, etc.). Now, picture going through all of this without even knowing the root cause. Getting diagnosed early not only validates our experiences but also empowers us to take decisive action without endlessly searching for answers.

Let's spread the word about endometriosis! It's so important.

 

 Endometriosis is not just a period disease.

 

What Exactly is Endometriosis? 

Endometriosis is a systemic inflammatory disease where abnormal, endometrial-like tissue, grows outside the uterus. Picture this: you've got tissue similar to the lining of your uterus, deciding to set up camp outside of where it's supposed to be. It's mostly found in the pelvic region but it can pop up pretty much in any organ system in your body. Yep, it's a whole-body kinda thing. 

Just like the endometrium inside your uterus, it responds to hormonal changes during your menstrual cycle. But here's the kicker: because it's hanging out where it shouldn't be, it can't make a graceful exit like the endometrium does during your period. Instead, it sticks around and throws a fit, causing inflammation, pain, cysts, adhesions and even scar tissue to form.

Endometriosis isn't a one-size-fits-all condition; it comes in various forms and manifestations. Whether it's sudden pelvic pain, discomfort during intimacy, or pain with basic bodily functions like bowel movements or urination, this disorder can throw your daily life into chaos. And let's not overlook the fatigue, bloating, nausea and digestive troubles that often accompany it.

But what hits me the hardest about endometriosis is its toll on fertility. It disrupts the normal functioning of ovaries, fallopian tubes, and the uterus, making conception challenging for many, including myself.

So yeah, endometriosis is a complex beast that doesn't play by the rules. It's not just about your period—it's about your whole body, your whole life.

 
 

Endo Symptoms 

Here's a rundown of the primary symptoms linked to endometriosis. It's crucial to note that symptoms can vary widely from person to person. Despite never categorizing myself as someone who suffered from severe menstrual cramps, I've encountered most of these symptoms over the past five years.

 Additionally, many of these symptoms are cyclical, meaning they may only pop up around your period or worsen around that time. For instance, when I was dealing with intense digestive pain, I noticed it improving gradually, but it tended to resurface or worsen around my period. Looking back, I realize that this cyclical pattern was a significant indicator, although I didn't recognize it at the time.

 

What Causes Endometriosis? 

It's a bit of a mystery. The exact cause of endometriosis isn't fully understood, but several factors are thought to contribute to its development. There are many theories floating around, some of which are controversial, but It’s not like there’s just one theory that can neatly explain endometriosis for everyone who deals with it. It’s more likely that a mix of different factors and mechanisms are at play. These are some of the theories:

Retrograde Menstruation: This theory suggests that during menstruation, some of the menstrual blood containing endometrial cells flows backward through the fallopian tubes into the pelvic cavity instead of exiting the body as it should. This can lead to the implantation of these cells onto pelvic organs. 

Homeobox Genes: Abnormalities in certain genes, particularly those involved in embryonic development (homeobox genes), may predispose individuals to develop endometriosis. 

Immune System Dysfunction: This theory proposes your immune system may be "broken." It's possible that the immune system fails to recognize and eliminate misplaced endometrial tissue, allowing it to grow outside the uterus. Some have categorized endometriosis as an autoimmune disorder, but this has not been proven.

Genetics: We can't ignore the fact that endometriosis tends to run in families, pointing to a genetic component. If your mother or close relative have it, it makes you 7-10x more likely to have it.

Environmental Toxins: Exposure to certain environmental toxins may also increase the risk of developing endometriosis.

Lymphatic spread: This theory proposes endometrial tissue might travel through the lymphatic system to other parts of the body, where they implant and grow. However, there's limited evidence supporting this idea.

In other words, there is still so much to uncover in the area! 

 

Endo Screening Tool

I recently attended the Endo Black Conference and was struck by the idea of creating an Endo Screening Tool to help physicians consider Endometriosis during consultations. Since such a tool doesn't exist yet, I've put together a list of 10 questions that could potentially be included. Remember, this isn't medical advice, but if you answer yes to many of these questions, it might be worth discussing with your doctor.

 

How is Endometriosis diagnosed? 

Okay, let's talk about how they diagnose endometriosis—it's not as straightforward as some other conditions. You know how with diabetes, they can run a blood test and boom, there's your diagnosis? Well, with endo, it's not that simple.

The gold standard for diagnosis is a procedure called laparoscopy. Sounds intimidating, I know.  During this surgery, doctors use a tiny camera to explore the pelvic cavity and identify endometrial-like tissue. But here's the catch: your typical gynecologist may not have the training or experience to recognize all cases of endometriosis during laparoscopy. You need an endo specialist for that!

If you do opt for a laparoscopy to get answers, they usually recommend removing any endo they find during the procedure. But trust me, you don't want just any surgeon poking around down there. You need someone who eats, sleeps, and breathes endometriosis surgery—a true specialist. So, before you go under the knife, do your research and make sure you're in expert hands. Believe me, it makes all the difference. Check out my blog post on this.  Empowering Choices: Making Informed Decisions in Endometriosis Surgery

Now, you'd think that imaging tests like ultrasound or MRI could offer some clarity, right? Well, they might hint at the possibility of endometriosis, but only a specialist can decipher those subtle clues. However, ultrasound can reveal cysts, and a MRI can distinguish what type of cyst it is and identify the infamous endometrioma, a telltale sign of endometriosis. However, this method won't work for everyone because not all people who have endo have cysts!

I wish I could tell you there's a simple blood test or something, but nope, not yet. There are no definitive blood tests or biomarkers for endometriosis, but research is in the works. It's all about putting the puzzle pieces together—your symptoms, your medical history, and a little detective work from your medical team. 

 

Treatment Options 

I like to categorize endometriosis treatment into two main approaches: Traditional medicine, which encompasses the treatments recommended by your healthcare providers, and holistic medicine, which focuses on looking at the WHOLE YOU and making lifestyle changes. In my experience, there isn't enough emphasis placed on the benefits of holistic approaches in managing endometriosis symptoms. While healthcare providers understand their importance, they may not always prioritize them due to their focus on traditional medical interventions. However, I don't believe it has to be a choice between one or the other—holistic versus traditional. Throughout my journey, I've integrated both approaches. I advocate for exploring options in both realms to find what works best for you, as every case of endometriosis is unique. Remember, you are unique!

Traditional Treatments

Pain Medications:

  • NSAIDs (Non-Steroidal Anti-Inflammatory Drugs): Such as Advil or Naproxen. Long-term use of NSAIDs can cause gastrointestinal issues and damage the gut lining..
  • Opioid Pain Medications: In some cases these medications are prescribed for severe pain. Opioids run the risk of dependence, addiction, and other adverse effects.

Hormonal Therapy: 

  • Hormonal Contraceptives: Birth control pills, patches, or vaginal rings are commonly prescribed to help regulate the menstrual cycle and reduce pain associated with endometriosis. This is not effective for everyone and they come with potential side effects and risks.
  • Progestin: Progestin-only contraceptives, such as the contraceptive implant, hormonal IUD, or progestin-only pills, are used to suppress ovulation and thin the endometrial lining, reducing menstrual flow and pain. Progestins may have side effects such as weight gain, mood changes, and irregular bleeding.
  • GnRH agonists:  Work by temporarily inducing a menopause-like state, reducing estrogen levels and suppressing endometriosis growth. (ex. Lupron, Orilissa). Yes, I said menopause! Like above please educate yourself on the risks associated wtih taking these medications. 

Surgery: May be recommended for people with severe symptoms or when conservative treatments are ineffective.

  • Ablation Surgery: Involves using high heat to burn only the surface of endometrial lesions, leaving the roots. It has a high recurrence rate and can cause additional scarring and damage to organs. 
  • Excision Surgery: Gold standard for endometriosis treatment. It involves removal of endometrial lesions by cutting them out from the root. It offers better long-term outcomes, reduces symptom recurrence, and preserves surrounding healthy tissue compared to other surgical approaches like ablation.
  • Hysterectomy: Surgical removal of uterus. This does not cure endometriosis. 

Pelvic Physical Therapy: It focuses on relieving pelvic pain and dysfunction through exercises, manual therapy, and education tailored to the individual's specific needs.

 

Holistic Treatments

Healthy Diet:

  • Anti-Inflammatory Diet: Focusing on whole foods rich in antioxidants and omega-3 fatty acids while minimizing processed foods and added sugars, an anti-inflammatory diet can help reduce inflammation associated with endometriosis.
  • Gut Healing Protocol: Eliminating trigger foods and incorporating gut-friendly foods and supplements, may help alleviate digestive issues commonly associated with endometriosis.

Regular Exercise: This can help reduce pain, improve mood, and enhance overall well-being. Yoga, Pilates, Walking, Strength Training and Low Impact cardio are all great options.

Stress Management: Chronic stress can exacerbate symptoms of endometriosis. Incorporating deep breathing techniques, journaling, mindfulness and meditation can reduce stress levels. 

Adequate Sleep: Prioritizing good sleep can support hormone regulation and overall health.

Acupuncture: This may alleviate pelvic pain, reduce inflammation, and regulate hormone levels. Acupuncture may also help with fertility by promoting relaxation, reducing stress, and improving blood flow to reproductive organs.

Natural Pain Remedies: Such as heat therapy, herbal supplements, or essential oils may provide relief from pain and discomfort

 

8 Ways to Do Your Research

A popular thing to tell someone once you've been diagnosed is "do your research!" Yes, but what does that even entail? I understand how someone could get lost in doing that. I'm in the healthcare field and I can't expect someone to be able to decipher a medical journal article. That's not realistic. So, I want to leave you with some practical tools to help you become more informed about endo, so you can make empowered choices. 

1. Watch These Endo Films

2. Join Nancy's Nook Facebook Group

3. Read Beating Endo

4. Attend Endometriosis Events

5. Follow on Instagram

6. Check Out These Websites

7. Join Reddit boards

8.  Subscribe to The EmpowerHER Wellness Blog

  • Shout out to YOU. You are already here doing more than most, taking proactive steps, diving into your health journey and learning more about this condition through this blog.
  • Scroll to the bottom of this post and subscribe, to stay up to date on future blog posts and ways to stay Empowered with Endo!

 

Let's Spread Awareness!

The month of March may be coming to an end, but my voice will continue to spread awareness about Endo and empower you on your journey! I hope this blog post has been a valuable resource for you. If you're on your journey and need an ear to listen, please reach out. Remember, you're not alone in this. If there's a subject you want to learn more about, let me know! Take this information and use it to your advantage, share it with others, and spread the word about endometriosis! 

 

It's official, The EmpowerHER Wellness Blog has now been live for 1 month, and there's so much more to come. Your support means the world to me! 

Medical Disclaimer: The information provided on this website/blog is for educational and informational purposes only and should not be construed as medical advice. It is not intended to replace consultation, diagnosis, or treatment by a qualified healthcare professional. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking medical treatment because of information provided on this website/blog. Reliance on any information provided by this website/blog is solely at your own risk

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