Growing Up With Endo

Growing up I had always heard stories of my grandmother, my aunt, and my mother experiencing pain and discomfort that they would say was because of their “endometriosis” but I never really knew what that was. As I grew a little older I also experienced watching these women have major surgeries because of this illness I did not understand.

12 Years Old

When I was around 12 years old, I wasn’t getting my period just yet. But I was experiencing cramping that would bring me to tears, leaving me clenching my stomach as my mother would hold me. When I finally did get my period, less than a year later I was so relieved because it felt like “all the other girls had already gotten theirs”. Little did I know that my period would end up causing me to be in extreme pain, that would bring to my knees or leave me curled up in bed unable to move.

15 Years Old

About two years after having my period, I had to go to a gynecologist for the first time. I was pretty nervous. My mother had noticed that I was showing symptoms very reflective of her experiences with Endo; only about 10 years earlier.

The doctor asked me a series of questions, discussing how violent my periods were and how much they hurt. As it turned out, my periods were bad enough where they were leaving scars within my uterine line…which one day, could lead to issues when I wanted to have a baby. A concept that I was not ready to think about when I was only 15 years old. I remember feeling confused and angry; I thought this is how everyone’s periods were, didn’t everyone cramp until they cried? Didn’t everyone bleed for over a week? Maybe I was just weak and not as strong as the other girls my age…

The doctor determined that I did in fact have Endometriosis and that I needed to go on birth control right away to help minimize the severe symptoms I was displaying. But I would have to be monitored as I grew up because my condition could worsen.

Enter: “The Pill”

I was on the the pill for a little over a year and to be honest, I hated it. I really struggled with remembering to take my pill every single day. So I looked into other options that would still meet my birth control needs. At the time, my needs being that we needed to target a specific hormone in my body called estrogen to help even everything out.

17 Years Old

Enter: Nuva Ring

I was on the Nuva Ring for a little over 4 years and I loved it. It didn’t cause me any pain and was super easy to manage. At this point in my life, along the way, I had started being sexually active and the ring didn’t affect it at all. Until one day, just after my 21st birthday – I was experiencing serious pain within my abdomen.

21 Years Old

Enter: Flare Ups

Something that not everyone understands about Endo is the fact that it is not always necessarily really bad and painful. Granted, it is always more painful than the average woman who does not have it, but it is not always bringing you to your knees. After a while you do get use to the pain because that is your normal.

My now husband and I had only been dating for about 3 months and it was time to be to let him in on this huge secret I was carrying. I had Endo, I may not be able to have children, and I need to go to the doctor because something is wrong.

It turned out I had a bunch of medium sized cysts that were bursting as well as a super pissed off uterus, who had grown sick and tired of the Nuva Ring. During this time, sex was very painful and I always felt off – I had to figure out which new form of birth control would be right for me and it took about a year of trying the pill again to settle on my next form.

22 Years Old

Enter: IUD

I was nervous to get the IUD but I was also very ready to be on something more consistent that could last me up to 5 years. My now husband and I decided that if we were to have children we felt that 27 would be a great time to start so the IUD seemed like a great fit. In addition, my new gynecologist wanted me to get onto a birth control that offered me progesterone because the increase of estrogen wasn’t helping much over the years.

Life was overall pretty good with the IUD, I did experience bleeding for about a six month period after having it inserted. But I thought, if this means no periods for 5 years and relief for my Endo, then six months is nothing.

23 Years Old

My husband and I had just gotten engaged on Tuesday, it was now Friday and I woke up with serious cramping. I truly thought I was dying. As it turned out, I had a 15 cm cyst twist my Fallopian tube, causing me to pass out and causing it to rupture.

This led to a surgery that would allow my new doctor to go into my abdomen and see what was really going on. As it turns out, I have “Severe Endometriosis” which means that I have lesions all over my abdomen, fusing my internal organs, making life pretty painful. I talked more about this in detail in my post here.

24 Years Old

A little after my 24th birthday I began to experience an old pain that was familiar to me. It was very similar to the pain that led me to have the Nuva Ring removed. I went to the doctor for almost a month, trying to figure out what could possibly be wrong. Was my IUD out of place? Was it another massive cyst? An infection? No, Nope, No. Everything was coming back negative. I was told that I have “chronic pelvic pain” and there is no way to treat said pain because we don’t know what is causing it.

However, my doctor did point out that my cervix seemed pissed and given my history with the Nuva ring, perhaps my body had enough of this foreign object floating around.

Last Week

Last week I made the difficult decision of having my IUD removed, as well as to not continue going on birth control. I have been on birth control for 10 years and honestly, I am really looking forward to getting to know myself while not being on it. When my IUD was removed I almost instantly felt relief of this horribly uncomfortable pain stabbing and throbbing at my pelvis. I’m still a little sore, but nowhere near where I was a week ago.

This 10 year journey is honestly what has led me to being here now, blogging about my experiences regularly. Going through this journey has been difficult, and painful; emotionally, mentally, and physically. It is so important for me to let other women know that you are not alone. Women of all ages experience this illness and it is so important to use our sisterhood to bond together and get through what is our lives; together.


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.

Feature Image: ArtOfThePage who can be found with all of their beautiful work on Etsy here.

2 Replies to “Growing Up With Endo”

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