An Open Letter to Society: The Things We Don’t Talk About (Part 1)

What We Don’t Discuss

On Friday, August 30th, Endometriosis.net posted a survey on Facebook asking women to, “Finish this sentence: ‘I wish people understood that Endo _______________.'” The range of responses was amazing. Some women discussed the level of pain they experience, others chose to answer the severity of the disease, and some even mentioned that they simply wished others knew the disease existed.

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This survey was actually inspiring to me, for I read about how other women have the same severe symptoms that I do. Usually, when I experience such symptoms, I find myself telling my friends and family members that “I’m fine” or “I’ll be okay…” when I truly mean, “I’m in intense pain at the moment, but in a few days I’ll be better.” I guess the overarching truth is, is that I’m never truly “okay.” There may be breaks in the month when I am symptom-free, but that never lasts too long.

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The uneducated world sees endo and adeno as severe periods. Trust me, they are, but they are also so much more…I know I already blogged Assumptions and Misconceptions: An Open Letter to the World, where I discussed the poorly educated world. But for this post, I want to focus on the symptoms that I and other #endowarriors have. These symptoms range in severity, but they go beyond heavy menstruation. In fact, most would not consider them to be connected to menstruation. Nevertheless, we need to add them to our discussions, otherwise, the world will remain uneducated.

One thing I wish others knew about Endo is….

(WARNING: Mature Content Below- This section contains details that can be triggering to others. Feel free to skip to the bottom if you do not want to read medical details.)

1. Fatigue

No one seems to understand that my chronic illness can cause extreme fatigue. Endo/Adeno fatigue can occur at any time of the month, even if I am not ovulating or menstruating. Some days I wake up and I feel like I have the flu. That I have no energy, and even though I’ve slept at night, I could sleep another 12 hours. Endo fatigue is more common than one would think. A majority of women who have severe endo experience a large loss of blood and iron every month. This loss of iron causes our bodies to feel tired all of the time.

2. Lack of Energy

A lack of energy goes hand-in-hand with fatigue. Having no energy means that I am drained. Sometimes my family thinks I am as pale as the ceiling. Although medical professionals recommend diet changes, exercise, and vitamins, none of these seem to truly reduce my fatigue and increase my energy levels.

3. Leg Pain and Weakness

Leg pain is not usually connected to periods. And yet, I experience pain down my outer thighs or along the inside of my leg. Sometimes I also feel as though I must force my legs to work. Leg pain related to adeno is a result of “peripheral nerve numbness.” What this means is that endometriosis lesions may exist on my outer nerves, causing the nerves to contract.

4. Hip Pain

My worst monthly symptom is pain around my hips leading down to the inside of my legs. This pain may last four hours during my cycle, or appear as sharp random pains at any given time. The severity of pain ranges from the feeling of a sharp stabbing pain to a tiring nagging one. Most likely, this pain is also caused by nerve pain. Some #endowarriors may also experience a similar sensation in their lower backs.

5. Insomnia

One would think that because I have fatigue and a lack of energy that I would not have trouble sleeping. However, I find that no matter how tired I am, I cannot sleep. Granted, some days my cramps and symptoms keep me awake. However, there are random nights throughout the month where I find myself staring at the ceiling wishing to fall asleep. I experience insomnia due to a hormonal imbalance. Since the only “correction” to hormonal imbalance is birth control, I have to stick to herbal supplements to help me fall asleep.

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These are just some of the symptoms that I experience beyond heavy bleeding and cramps. I have also decided to make this post a two-part series, for I feel that there is more that needs to be discussed about endo truth.

What symptoms do you experience that others may not know? Do you experience any of these symptoms? Like and Comment Below!

10 thoughts on “An Open Letter to Society: The Things We Don’t Talk About (Part 1)

  1. Thank you for sharing this, I will give them a follow on Facebook and I didn’t know about them. For me I have good and bad days and can have a mix of the following or suffer with all at the same time. I suffer from fatigue, Lack of energy, get out of breath easily, Pain 24/7, stressed, emotional, pelvic and abdomen pain, lower back pain, Endo belly, Insomnia, Nausea, Weak and dizzy or light headed.

    Liked by 2 people

    • Although they are a sponsored page, a lot of women write about their experiences. It helps to read what others are feeling, at least for me. Thank you for sharing your symptoms. It’s amazing how we can suffer so many different symptoms for one stupid illness.

      Liked by 1 person

      • Yes that why its so hard to diagnose, took me years til someone listen to me and I can tell you I started to go mad and think is it all in my head, its been tough and still tough where surgery hasn’t work long for me which also make me feel down.

        Liked by 1 person

      • It took me almost 10 years to figure this out and I still don’t feel like I have all the answers I should have. You would think with 1/10 women suffering with some form of Endo that the world would know more about the chronic illness.

        Liked by 1 person

      • Yeah you would hope but unfortunately that not the case, how many doctors/nurses have looked at me when I meantion Endo as if to say what is that, I got so fed up of telling everyone and repeating myself and now my partner tells them as I simply loose my patience, it’s like your a doctors you should know this. That why I’m happy to talk about it to raise awareness and more need to know about it

        Liked by 1 person

  2. Love this post! The biggest things I wanted people to understand was rectal pain and mood swings I experienced. All of these things I suffer from too but these two always made me feel like I was going crazy. Again thank you for this post!

    Liked by 2 people

    • Yes! I’ve experienced that too. It’s so frustrating that one specific thing can cause so many random symptoms! The world needs to be educated, to go beyond “heavy periods.” Thank you for taking the time to read and comment!

      Liked by 1 person

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