The Truth about Endometriosis

by Brandi Lytle
Photo of a person standing amidst fire on "The Truth about Endometriosis," on Not So Mommy..., a childless blog

Although an estimated 176 million women worldwide suffer from endometriosis, a chronic illness which was discovered in 1860, only about 20% of the general population has heard about this disease.  Even those who have heard of it often misunderstand what this illness truly involves.

Endometriosis: A Misunderstood Disease…

Even some doctors are misinformed about endometriosis.  In fact, I recently read a tweet touting a “curative treatment” for endo.  When used as an adjective, “curative” means “able to cure disease.”  Thus, the statement tweeted was, at best, misleading and, at worst, a flat-out lie.  Why do I say this?  Because there is no cure for endometriosis.  (Don’t take my word for it.  Check out this article from WebMD.)

The false information, misinformation, and lack of knowledge about this chronic illness make living with it quite frustrating.  When I was diagnosed during our infertility treatments, I simply thought endometriosis was a problem because it was hurting our chances of becoming pregnant.  My doctor did not explain the other issues this disease can cause nor did I ask about them.  I was solely focused on getting pregnant.  An illness that was not life-threatening truly didn’t seem like that big of a deal to me at the time.

Endometriosis:  What is it…

You may still be wondering, “What exactly is endometriosis anyway?”  Well, endometriosis is a chronic illness in which endometrial tissue (or tissue which makes up the uterine lining) grows outside the uterus and is found on other organs within a woman’s body.  (For more information, check out this video and article from UCLA Health.)

Endometriosis: Some Symptoms…

In the past year, I have become much more informed about endometriosis, a disease which affects at least one in ten women.  I have learned that not only does it affect fertility, but it is also associated with an increased risk of heart attack and various cancers.  Endometriosis can cause back pain, fatigue, depression, bloating, painful periods, pain during ovulation, hormonal imbalances, migraines, and more.  And nothing—not pregnancy, not a hysterectomy, not menopause—cures endometriosis.

Because pain caused by endometriosis may improve after hysterectomy and/or menopause, some believe these are “cures.”  This is simply not true, however.  In fact, the severity of endometriosis does not correlate with the amount of pain a woman has.  In other words, a woman with stage 1 endometriosis might have more pain than a woman with stage 4 endo.  (Another reason this disease is so darn confusing!)

Endometriosis Symptom:  Endo Belly…

Another symptom of endometriosis that I haven’t seen discussed on medical sites, and yet is widely talked about within the endo community, is “endo belly.”  This is a bloated belly that can be painful and embarrassing.

As I think back, I believe I’ve suffered from endo belly since I began menstruating.  From the time I was in middle school, I never had the flat stomach that other young girls seemed to have.  Although slender and tall, my lower abdomen always had a slight pooch.

For many years, I did everything I could to hide it.  Finally, in the midst of our infertility battle, I decided to embrace my belly (although at the time, I did not realize it was a symptom of my endometriosis).  I bought a brand-new outfit—a pair of chocolate brown capris that I paired with a light blue, fitted sweater.

After work one day, a friend of mine told me that another lady at work had asked if I was pregnant.  She told the lady, “No,” and asked me why the woman would think that?  (I was open about our infertility struggles, so my fellow teachers knew that we were going through treatments.  I hadn’t made any big announcements, so…)  Matter-of-factly, I said, “Because of my stomach.  I usually hide it.  But today, I wore a fitted sweater.”

My ability to embrace my endo belly comes and goes.  When it is simply bloated, I dislike the way it looks.  When it is painful, I truly hate this symptom.  And when my hubby and I go to the beach, I try to focus on the fact that he thinks I’m beautiful and likes my “curves.”

Endometriosis:  Not So One-Size-Fits-All…

Why am I sharing all this?  Because I want you to understand that endometriosis is a complicated disease with a multitude of symptoms, which manifest differently for different women.  And the treatments that work for one woman might not work for another.

For example, I manage my endometriosis through herbal supplements, vitamins, essential oils, and eating a lower-carb diet.  I’ve also learned that stress exacerbates my endo, causing my fatigue and pain to worsen.  Managing my stress through exercise (including aerials, walking, and yoga) helps alleviate some pain.  Over the past five months, however, I’ve been unable to fully manage my stress due to grieving my best friend.  Because of this, my back hurts often.  (Actually, I’m in pain as I type this blog post.)  Plus, my sciatic nerve has been giving me fits.  (Another symptom of endo.)

Honestly, I’m not sure how to end this post.  There is more I could say about this awful disease.  I could talk about how I’ve tried to figure out whether I should have a hysterectomy.  Would that help alleviate my back pain?  I could discuss even more how misunderstood this illness is.  Many women who suffer with it, including myself, have been called “lazy” when, in reality, we are suffering from fatigue caused by our illness.  I could give more stats and refer to more articles…

But I think I’ll simply end by stating…

Endometriosis is a chronic illness.  It causes a multitude of symptoms.  It can be managed.  But it cannot be cured.

The pain is real.

The fatigue is real.

Endometriosis is real.

Photo of the Yellow Ribbon which shows support of Endometriosis Awareness Month on Not So Mommy..., a childless blog

To learn more about endometriosis, click here

I’m just a gal who suffers from endo.  I don’t hold a medical degree nor am I a specialist.  To read my disclaimer, click here

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Featured Photo:  Robson Hatsukami Morgan on StockSnap.io

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9 comments

MAWilson August 23, 2020 - 2:27 pm

After total hysterectomy and menopause, I still have endo belly and painful adhesions. It is so Not Fair, and I want to scream this on all our behalf. The only thing that has ever helped me manage the symptoms has been Natural Progesterone, in cream form. Not pills as their digestive absorption means the hormone can’t reach the target area.
Good luck every one.

Reply
Brandi Lytle August 24, 2020 - 3:50 pm

I am so sorry that you still suffer from endo belly. Even after menopause, I, too, suffer from this awful symptom. In fact, I feel like it’s gotten worse since menopause. Thank you for sharing what helps you manage your symptoms. Though endo is complicated and what works for one will not necessarily work for another, it’s still beneficial to hear how others are coping. Hugs, my fellow endo sister…

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Laura Provence April 8, 2019 - 12:35 am

I had no idea endo caused fatigue. Thank you for helping me realize that! Do you have a good source for different ways to help manage your symptoms?

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Brandi Lytle April 8, 2019 - 10:41 am

I had endo for over 10 years before I truly understood all of the symptoms. It’s one reason I’m so passionate about educating and raising awareness about this disease!

I know you already found the blog I posted about “Coping with Endometriosis, Menopause, and Grief” (as I saw your other comment), but I’m going to leave this link here for others who may be interested – https://notsomommy.com/coping-with-endometriosis-menopause-grief/

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Laura Provence April 8, 2019 - 10:36 pm

Thank you so much!

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Sherry Stout March 11, 2019 - 4:54 pm

Glad to really fully understand, and so grateful you are able to educate those who are dealing with endo.

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Brandi Lytle March 12, 2019 - 9:44 am

I am glad that I am finally learning more about this illness. And very glad that I have this blog where I can share what I learn with others! (I suppose I’ll always be a teacher at heart…)

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Lisa Hansen March 11, 2019 - 3:46 pm

Thank you for this Brandi!! Endometriosis can be such a hard disease to write about. And to describe. And when it affects you it’s something that is often hard to write about.. So thank you for this!

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Brandi Lytle March 12, 2019 - 9:43 am

I am grateful to have a platform where I can advocate and educate. Thank you for reading and supporting!

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