8 Things No One Understands About Living With Endometriosis
Just because the majority doesn't know about it, does not mean you are alone.
Endometriosis? Never heard of it? You're not alone, most people, even those who live with Endometriosis suffer at least 10 years before knowing they have it, or even knowing what it is.
1. What it is.
I don't even bother to tell people what I have anymore. Only when they really push is when I finally give in, because it is useless in saying anything at all. One in every 15 people I tell, has heard of it. For those of you reading that don't know what it is either, I'll sum it up for you.
The actual definition of the condition basically states how the "the tissue that normally lines the uterus, grows outside of the uterus instead." That doesn't sound so bad! Right? Wrong.
Endometriosis is extremely painful and in so many different ways. However it is also different for everyone; for some people, it just means irregular periods and pain, whereas for others it means surgeries every month. I lie somewhere in between the two.
The one thing that is true with all of the people suffering from Endo, is the pain. Then for me specifically, things like muscle weakness, exhaustion, depression, headaches, nausea, and the worst of them all, the stomach pain.
2. The pain, and the extent of it.
Sometimes the pain is so debilitating I can't get out of bed. Unfortunately for some people, it is much worse, constant surgeries are conducted to alleviate the pain and remove ulcers. There are days when I was in high school, I stayed home from school because I could not even stand, the pain being so bad. I have never been stabbed before, but I could imagine how it would feel, and it is exactly how my endo pain is, right at the bottom of my stomach. At times it would get so bad that I would get physically sick and I once passed out from the pain. But also, as I had said before, this isn't even the worst of it unfortunately for some.
The first time I really experienced great pain was my junior year of high school. It was the night of our dance show, as you could imagine I was already very stressed, and then as we were in rehearsal I started to get a stabbing pain in my stomach. Nothing relieved the pain, I had taken 3 Advils, drank water, soda, everything. I continually pushed myself throughout the rehearsal convincing myself I just couldn't handle the cramps. When it got bad enough I couldn't walk on stage without bending over, I asked to go to the nurse.
3. It is NOT your fault. In fact there is no clear cause.
I can't think of how many times my dad had gotten mad at me for the expenses and doctors visits surrounding my condition. Although I do forgive him now, as he did not understand back then, it really hurts when you're already suffering and the people you love don't believe you. Never let someone blame you for something you cannot physically control, and especially something you completely despise about yourself.
Endometriosis does not have a clear cause, although it is said to be hereditary.
4. How common it actually is.
According to MayoClinic, there are more than 200,000 cases of Endometriosis in the US alone every year. This is considered common according to their statistics. Yet, so many people are unaware of the illness it is shocking. I find it both exciting and relieving when I find someone I know who shares the same condition as me, or at least knows what I am talking about.
5. It is not "just a bad period."
"Suck it up," "You're going to have to deal with it," "Stop being a baby," "You're not the only one who gets bad periods," "Don't be a wimp," "Can't you just take an Advil?" These are all comments I have received from people about my condition when I had (mistakenly) confided in them. Someone who does not understand or is not going through the same thing cannot judge you about your illness. Even someone with Endometriosis can't argue that they have it worse, or yours "isn't that bad" because it is different for everyone and people handle pain differently.
"Oh I get it, I get really bad periods too", another thing I have heard from someone when I discuss my condition. Not only is this offensive but it is a completely incorrect representation of endometriosis. It is not just a "bad period" in fact, the pain and the symptoms of endometriosis can happen at any time. It doesn't have to be on your period, for me, it happens whenever it wants and can last for up to 2 weeks. Especially during times of stress, the pain will become more prominent.
6. Treatment is a long (a difficult) process.
I can't count on two hands how many birth controls I have been through. Birth control is the usual treatment for endo because it regulates the hormones and as my gyno put it "calms everything down a bit," which is true, when it works. When I first started my trial of testing birth controls and seeing what works, what gives me crazy side effects, and what doesn't, I started to lose hope. Three separate brands in I had finally found one that worked for me. Did the pain go away? Of course not but it was more manageable.
Then the prices went up. Five months in I was happy with my current treatment and I went to the pharmacy to pick up the usual prescription for $25 a month and I find out it had increased to $50. A month. Being a college student, and working part time to pay for my car and classes, it seemed unreasonable to be paying $50 a month, $600 a year.
Today I am still in this process of finding a new medicine that will finally work for me. Unfortunately, I thought I had found "the one" (Ha) this time but it started to give me negative side effects such as weight gain, depression, etc.
For some, the treatments are even worse and more expensive. As I had mentioned before, laparoscopic surgeries to remove cysts are done almost monthly for some women and is apart of their daily lives. I consider myself one of the lucky ones in terms of this condition.
7. It is NOT all in your head and it IS real.
Some women I know had to go to 5 different specialists to be properly diagnosed, for some doctors just didn't believe in the condition at all. Luckily I only had to go to one doctor who knew right away what was going on with me. Before I was diagnosed I thought that I was going crazy. I would tell myself that I was just a wimp who could not handle a little pain. I would beat myself up and force myself to go places when I was in no condition to do so.
It is real. That is something I must remind myself every time I experience the excruciating pain that is this illness. Whenever I would talk to people who had no knowledge of this illness, who convinced me that it was all in my head, I began to believe them. For when I was younger I would convince myself that I would get bad headaches and then as a result, I would.
However, when it would happen I would think, "how can this be all in my head?" it was too severe and too frequent to be something of my imagination. That was something that took me a long time to realize.
8. It does not define you.
I will not let it win. I will not let it have all the power over me. I will not let it control my life and prevent me from doing the things that I want to do.
Although it is okay to take that day once in a while to sleep away the pain, I will not let endo consume my life. I'm calling the shots and I say I will deal with the pain when there is something that I truly care about. No longer will endo keep me from attending classes, no longer will it prevent me from dancing, from going to the beach, from making memories with my friends.
Just because I have it, does not mean that is all I am. It does not mean that I am less capable of something because of it. It is a challenge that I must and will overcome every day, and a challenge that I am ready to win. Challenges are hard and they will test your limits till there is nothing left. However, it is not impossible, just hard.
Your endometriosis should be acknowledged because it is real, and it is something people should consider before they are going to dismiss it as a "bad period" or you "not being able to handle it." At the same time, you should not forfeit your rights, your happiness, your mobility, and your life to this illness. You call the shots, it's your life, and this is just a speed bump on the daily commute of life.
