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Done Hiding

Hi, my name is Dani.

I was 11 years old when I first got my cycle, and I always remember it being very painful. Like most of us, I too thought that it was normal to experience that kind of pain, but now I know different.

I dreaded it every month

At first, it started off as your above average, gut-wrenching, cry-your-eyes-out cramps with chronic migraines and lower back pain during my cycle, but then I started having those symptoms whether I was on it or not. I dreaded getting it every month. I was scared because I knew what I was in for, and there was no way to stop it from coming. Like now, through middle school and high school I had always been irregular, so every month it was like playing Russian roulette with my uterus. Sometimes two or three months would go by without me having it, and then it would just come back out of nowhere and wreak havoc all over again.

I’ve always had a heavy flow and was an incredible burden during my school years. I felt humiliated and embarrassed every time I would bleed through my clothes during class. I’ve had to ask my friends for their sweaters so that I could wrap them around my waist and hide my shame until the end of the day. I just felt dirty and broken and it didn’t make me feel good at all. I would always lie to my teachers to “use the bathroom” just so that I could stop faking it for 5 minutes and cry like a baby in the stall because the pain was just too much to handle. I didn’t know what to do, so I just dealt with it. Constant pain became the norm.

Cysts and surgeries

Not much changed following high school graduation, but after so many months of complaining about this weird, deep throbbing pain in my pelvis, I was diagnosed with Polycystic Ovarian Syndrome (PCOS) during a laparoscopic procedure in 2012. Who knows how long I really had that issue going on, but hey, I was finally getting an explanation as to why I was having all of this pain. So they cut out a large cyst from my right ovary, and another from the left, but 1/3 of my left ovary had to be removed along with it.

The next year or so was filled with several appointments to my OBGYN that resulted in not much else besides routine ultrasounds, each time finding more and more cysts. Then one day a cyst bursted while I was lying down at home and I screamed bloody murder. I couldn’t stop crying. I couldn’t move or breathe. I was just trapped in my own body with this indescribable pain, curled up for hours. I was too scared to get up or walk and I was hurting so badly that I was sweating and blacking out several times.

So I was scheduled for surgery again in 2014 and off I went to have more cysts removed. I did get some relief for a while, but they eventually returned. Just like last time. And then of course, things got even worse.

Endo diagnosis

When my new OBGYN heard about all of this, he said that he wanted to check me for Endometriosis. This was in April 2018, and it was the first time anyone has even considered investigating this. He scheduled me for surgery on June 25, 2018.

Diagnosis? Endometriosis, Uterine Fibroids, and my already existing PCOS was much worse. Both my ovaries now looked like a sac of marbles. Yay me…

The more I researched Endometriosis the more dumbfounded I was about how long it took for anybody to notice that THIS was my problem. So now I know what I’m dealing with.

See, “normal” girls usually only bleed 5 to 7 days. Last month I bled for 16. It was a nightmare because I also have iron-deficiency anemia, so having my already heavy flow, and having lost so much blood non-stop for over 2 weeks made me astronomically weak and fragile both physically and mentally. It was so difficult forcing myself to stay awake and conscious since I still had to work and do things, but my body couldn’t take it. I passed out several times during those 2 weeks, even while walking from one room to another. It wasn’t pretty, but there was nothing I could do.

Other symptoms

Aside from me wanting to strangle my uterus and rip my aching spine out, I always have this heavy weight of fatigue and soreness throughout my whole body, and over the last few years the exhaustion has grown to a point where I can barely function. I barely sleep at all, I’ve developed an essential tremor in my hands and head, so I suppose that’s there to stay now too.

I don’t remember much of anything anymore either because of this constant brain fog, so much so that I joke around with my family about me developing early Alzheimer’s, but my forgetfulness is so severe that it’s a legit concern of mine. I’m also depressed most days because of the pain, exhaustion and relentless anxiety. All of these things are always affecting me one way or another. I just seem to have mastered the art of hiding it.

I’m done hiding.

*Does this story resonate with you at all? We would love to hear your experiences & thoughts in the comment section below! Or, share your own story here*

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Endo Warrior moderator
    8 months ago

    Hi Dani, thank you so much for sharing your story and I am so sorry that you are suffering so much. It is ridiculous how long it often takes for endometriosis sufferers to get a diagnosis, and I am so glad that you decided to be done hiding. I recognise so much of your story, although I didn’t have it quite as bad.

    I hope that you will find a more effective treatment for your endometriosis so you symptoms improve. Let me know if there is anything we can do to help, you are always welcome to chat (or rant/vent/whatever you need).

    Christina (team member)

  • alesandrabevilacqua moderator
    8 months ago

    Dani, I LOVE the title of your story! So so appreciative that you chose to share your story with our community <3 Thanks for being here with all of us! - Alesandra (Endometriosis.net Team)

  • Juliana Swaren moderator
    8 months ago

    Hi Dani.

    Thank you so much for sharing your experience with us! It’s sounds like you’ve had a really tough journey, but I’m so glad that you have a diagnosis now! How are you doing today?

    Wishing you all the best in continuing to manage your endometriosis! Please let us know how we can help.

    ~Sincerely, Juliana, Endometriosis.net Team

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