I’m a One-woman Army Fighting Endometriosis

I’m a One-woman Army Fighting Endometriosis
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Yesterday was tough. If you’ve read my columns lately or follow me on social media, you’ll know I’m in the process of having all sorts of things tested, including my kidneys.

The appointment to shed light on whether any of my essential organs are shutting down was supposed to be yesterday. Except it was canceled, and no one told me. So, I applied makeup, wore tights under a dress, straightened my hair, and took a train for nothing. Nada. Zilch.

A stern receptionist at the doctor’s office explained how my tests were “not a priority.” With shortness of breath, I insisted on their importance, explaining the pain I was in. Eventually, she acknowledged the urgency of the tests, but maintained that nothing could be done. She questioned my choices and wondered why I was there. I showed her the message on my phone confirming the date, time, and location of my tests. Halfheartedly, she apologized for the administrative mess that had wasted so much of my energy while I simply tried to see a doctor.

Because we use a public healthcare system in the U.K., I can’t choose which doctors I see, and I must follow a long process, initially seeing a general practitioner until I am referred to a specialist.

I left in tears, shaking.

On my way out the door, I kicked a grit bin. It hurt my foot, and my insides tugged me sharply.

Army of me … just little me, in leopard print. (Photo by Jessie Madrigal)

Then, I remembered the invasive, painful examination I struggled through two weeks ago. I recalled lying on the examination bed, with toes curled and my voice breaking, as I begged the universe to make my ex appear so that he could hold my hand, because “I can’t do this anymore.” It was another traumatic episode, and I had nothing to show for it.

Thirty minutes later, a flurry of messages flooded my WhatsApp: “You must complain about this Jess,” and “Call the other [doctor’s office] and urge them to locate your records.” All true, brilliantly expressed advice. Except it was a to-do list, and I was in pain, exhausted.

Since Jarvis can’t type anything other than ‘sausages,’ I only got me.

During the flare-ups, it’s just me. Unless you happen to live with me and occasionally find me on my knees, every horrific symptom of this disease is suffered by me, and no one else.

Just little me, unable to work like most people. Endometriosis isn’t widely recognized as a disability, even though sometimes it prevents me from walking or even sitting on a chair. To make ends meet, I have only my brain and my fingers to type, form coherent sentences, and correctly interpret medical journals. There is only one money-generating machine in my room, and it’s not the wiener dog with no tail.

A happy, safe place — my room and my tailless boy. (Photo by Jessie Madrigal)

Most of the time, I am drained by physical pain and chronic fatigue. I have no family to fall back on, not even for an afternoon visit or a cup of tea. I have an incredibly supportive and amazing bunch of girlfriends. Yet, they are not my personal assistants.

I probably won’t write the letter of complaint that I should. I won’t call the other office straight away and insist on being referred. Today, I will be mostly horizontal, crying because everything I did in the past three weeks — the emails, the research, the fighting for myself — bore no fruit.

Because of an administrative mess, all of my efforts have been for nothing.

In a few hours, once I am done crying, I will get up. I’ll head to the bathroom and wash my face. I will walk Jarvis, while hiding under shades and a huge coat so that no one will notice my swollen eyes or the fatigue. Tomorrow, I will open my eyes slightly wider, flex my muscles, and convince myself that I can do it all over again.

Sometimes we have a world of people, and sometimes all we have is ourselves.

There is a certain feeling that comes when no one can truly see what you’re going through inside. Except, I know that if you’re reading this, you probably understand what I’m talking about.

Which means that as well as being an army of me, there’s also an army of you.

Thank you for your comments. Your messages give me purpose. I can only hope the words I write give way to your voice, too.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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3 comments

  1. Charlotte Traylor says:

    Recently, you wrote about mental health and how we need to prioritize it. I told myself, “there’s no time.” I ended up in the hospital for 5 days and out of work for about a month. I was working every single day for weeks at a time. I was in so much pain every day. Putting myself first, leaving my part time job, and coming out of school has dramatically improved my quality of life. I re-read your (is article the right word?) about mental health and instead of the dread I felt the first time, I resonated with every single letter you wrote. I don’t feel the guilt I used to. Thank you for writing about your life. I’m so sorry you have to wait for help right now, but I am sending you true hugs, because I care for you. Army of you, army of us. Even though you are faceless to me, you write the words that help me get through every day. Thank you, thank you, thank you.

    • I have no words Charlotte. You humble me… you have reached into my heart and shaken it a tad… thank YOU for reading me. Thank YOU for echoing my words, my thoughts. Yes, please prioritize YOU, your mental health, your comfort, it matters. Army of us indeed. x

  2. Annie MacLean says:

    Hi Jessie. I am so, SO sorry that you and other’s are still going through this and I am sending you a huge hug. Now, I might shock you but I am 67 and was diagnosed with Endo when I was 28 and back then it had not long been diagnosed so, most of the time I was told that it was all in my head, I was a neurotic woman etc. At 29 I had the first tube and ovary taken out, a year later my womb and then the final tube and ovary. We had desperately wanted to have children but I couldn’t and we ended up with our adorable Golden Retriever’s but broke our heart’s every time one died.
    I started a Group in the Highland’s of Scotland because there was barely any support for Endo sufferer’s and not much understanding or sympathy! I organised a meeting with my lovely Glasgow Consultant and Endo sufferer’s and was horrified to learn how many partner’s and husband’s had walked away because they couldn’t have children. Bad enough having Endo and suffering the incredible pain + not being able to have children and then the person you love turns their back on you is so harsh.
    My story is a long one and this is not the place to tell it because this is your story Jessie and you need all the love and support we can give you. If anybody is contemplating a total hysterectomy and going on HRT please look into that carefully. I went on to HRT 6 day’s after the last Oophorectomy and the Endo kept going for a long time plus I have bad adhesion’s from all the operation’s. Nothing to do with Endo but I also had lung cancer 2 year’s ago. Please consider all option’s and find a really good Gynaecologist who specialises in Endo but you are right Jessie, we feel so alone in this ‘ war ‘ but please remember that there are people out here who know exactly what you are going through. I am here for you if you need to cry or scream. I am incredibly angry that attitudes of Dr.s and Consultant’s haven’t changed. I am glad though that you are venting online. If you need a letter of support with your Dr.s then let me know. Peppermint tea and a hot water bottle help a little, doggie cuddles help even more!
    By the way, I’m a young 67 and even through operation’s etc. I tutored my adult Art Group, put on Exhibition’s, looked after my parent’s, husband and dog’s and friend’s! A lot of the time life was a painful struggle and is awful just now because I’m waiting for a stomach scan to see whether I have cancer! We DO NOT GIVE UP! As long as you know that people care about you…I do and I send you a HUGE hug. Somehow, from somewhere we find strength and Endo women are AMAZING and Jessie, YOU ARE AMAZING. Please give your doglet a cuddle from me! Be safe and be good to yourself. You WILL get through this.

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