Wait … What is Endometriosis?

Although I primarily write from the standpoint of speaking to all my fellow sisters out there who have Endo. Let me start out by describing what Endometriosis (Endo) is…because to be honest, our Endo also affects those who love us and because of that, I think context can be helpful.

So regardless if you live the Endo life everyday, maybe you have been newly diagnosed looking for support, or maybe you love someone who has Endo looking for more information – you have come to the right place!

A Breakdown of Endometriosis
Endometriosis gets its name from the “Endometrium” tissue that lines the inside of a women’s uterus. Essentially what happens, is this tissue that is meant to only grow within the uterus, grows in various places outside of the uterus. Medical professionals may refer to these growths as Endometriosis Lesions. This is less than ideal, because although the lesions are growing in other places; they still behave like uterine tissue. This means that if a woman is cramping, or bleeding, or doing any of the things a woman’s uterus likes to do, that is also occurring at any other place these lesions exists.

In my case, I have Endo throughout my entire abdomen, so when I get my period or am cramping, from directly under my breasts to lower abdomen will all cramp, and will bleed. Causing me to essentially turn into a  painful little ball of sadness. 

Another factor to take into consideration is that when a woman gets her period “normally” the blood has a place to go; out of her. The issue with Endo is that there isn’t a place for the extra liquid to escape. Having certain amounts of excess liquid within your abdomen can cause more cramping, swelling, or bloating…ultimately making the entire situation to be more painful.

Cysts, Cramps, Exhaustion…OH MY!

In addition to a rough breakdown of what Endo is…there are other special exclusives that come along with it. Kind of like bonus prizes, except not nearly as much fun. These little extras can be things such as: constipation, exhaustion, cramping, cyst growth (non cancerous), bloating, pain during sex, etc. These extra symptoms vary from woman to woman.

In my case, I am prone to cyst growth. What this means is that my ovaries are over producing certain hormones. Because there is too much of said hormone, an excess is built up over time – creating a cyst. Typically, women with or without Endo do have very small cysts around 1 to 2 cm in diameter. Whereas the cysts I tend to have can be up to 15 cm in diameter. 


Cysts are tricky little things because they grow, and grow…and grow. The extra weight can be very harmful to a woman’s body. In addition, they can actually burst which does not feel very good. Cysts ranging upward of more than 8 cm are considered to be potentially harmful because they can affect your body in so many different ways. Cysts also vary in their type. Depending on the type of cyst you have, it will resolve itself, were others may require small procedures to resolve.


The one things my husband always struggles to understand is the cramping I have. He understands that I “am cramping” and knows that it doesn’t feel well, but he doesn’t know much more than that. He always talks about never fully understanding what I am going through, which can honestly be pretty frustrating for us both.

In my experience, I am almost always between a 5 and 7 on a scale from 1 – 10. 10 being the worst pain I have ever been in, 1 being barely anything. The difficult thing with being between a 5 and a 7 is that the pain is not minimal enough to be able to ignore, nor is it serious enough to seek out immediate medical attention. It is right in the middle, it is always there, aching, throbbing, stabbing…just enough so I can always feel discomfort. This is a pain that greets me in the morning, and is there as I drift to sleep. It is a pain that I feel throughout my day at work and in the middle of a date. And ultimately, it leaves me feeling absolutely exhausted. 


Something I wish more people understood is how being in constant pain absolutely wears you out. It takes a toll on you mentally, emotionally, and physically. The mental exhaustion comes from having to constantly force yourself to push on, as well as the lack of deep sleep that could occur for some people. When you are in constant pain it is really difficult for your body to relax, which means that when it is finally to rest (or sleep) your body is unable to do so, causing the cycle to continue. The emotional exhaustion can come from the feelings of “why me?” “is this my life now?” as well as the general frustration of having to live your life in total constant pain. Lastly, the physical exhaustion simply comes from your body being worn down from the inside out. Chronic pain can really take its toll on someone. This is why it is so important to be gentle with yourself or with the person you love.

Being a Gladiator 

These are all the reasons I see those of us who have Endo or any form of Chronic Pain as Gladiators. There are good days, and there are bad days. It is absolutely difficult to make the most out of everyday when you are honestly so tired and all you want to do is sleep…but the other half of you doesn’t want to be tired or in pain in the first place so that you can live the life you want to live.

At the end of the day, you are not alone. Close to 2 million of us have Endo within this world, and millions more have Chronic Pain. I know that living this life can be difficult, but it is also worth it.


Stay connected with Haley via twitter @heyleebird
If you are a woman who is a gladiator to Endometriosis or a similar illness that would like to spread awareness through your story please e-mail Haley at haleylpjohnson@gmail.com

I am not a medical professional by any means – I am merely someone who has lived with Endometriosis for the past decade. Through my experience I am hoping that I can help all of you. For more information on Endometriosis click here.

2 thoughts on “Wait … What is Endometriosis?

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