Following on from my post "It's End-O, not 'The End'" last week, I thought I would explain to you why I chose that particular name…

Endometriosis is a chronic condition, which means that it affects the sufferer's life in many different ways, over a prolonged period of time. When a woman first finds out she has Endometriosis it is likely that the condition has already affected her life through either pain or infertility and will have several repercussions for her future. 

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My own personal experience with Endo started when I was 13 and began having periods. Right from the word go they were painful enough to put me in bed and irregular enough that all my friends knew to come to me if they were caught unprepared because I constantly carried a bag full of sanitary towels and painkillers, thanks to such irregularity. At times I would feel sick for one week, have my period the next, feel better for one week, then feel sick again and have another period the following week – an exhausting, and confusing pattern for anyone, let alone a teenager just coming to terms with the fact that her body is changing.

I was 21 before I got my diagnosis and only then because I pushed, and pushed, and pushed for surgery to explain what was going on. I had, in the time since starting my periods, already tried three different contraceptive pills, numerous prescription painkillers and tried to "go it alone" as well.

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After my first laparoscopy and diagnosis I was given a Mirena coil, which prevents the womb lining from growing. For three months I had severely heavy periods and struggled to deal with the onset of IBS at a time when I had to focus on my education (I was in my final year at university). But, thankfully after those three months my periods stopped and I could finally start to live like a normal person – or so I thought…

Two years on, I started having pain and unexplained bleeding and another battle ensued to get the doctors to pay attention. I even paid to go privately to get my doctors to take me seriously. Despite having had a previous diagnosis, they seemed reluctant to believe anything was wrong as I still had no real bleeding… how wrong they were!

My second laparoscopy enabled the doctors to see I had stage III Endometriosis and among the adhesions caused by this was the most painful attachment of my uterus to my rectum. If the doctors weren't convinced anything was wrong with me, how was I to show the world my pain? 

You see, like so many chronic conditions, Endometriosis is an invisible one. From the outside a woman can look perfectly fine, yet inside she may be falling apart. Endometriosis isn't just about pain and infertility, although these two are awful consequences some sufferers have to deal with. It can also cause depression, fatigue, relationship problems and sometimes embarrassment. So, it is easy to become a victim to it…

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And that is why I chose to call my own fight against it "It's End-O, not 'The End'"… I refuse to let my Endo be the cause of the loss of my dreams, ambitions and joy of life. I won't lie to you – there have been times when I just wanted to give up, and times that giving up were my only option (such as giving up full-time work), but that doesn't mean I give in. My dreams are too important to me to let the condition win, and spreading awareness for those who do not feel able and facing those who do not want to discuss such a "taboo" subject as periods is too big a mission to step away from when I know I have the ability to do so in a good way (after all, the written word is a major love of mine!)

This doesn't mean I do not understand how easy it is to become a "victim" and nor does it mean I will not stand by those who are unable to fight, for I cannot even begin to comprehend just how painful it must be to lose pregnancy after pregnancy to the condition or become so affected by the condition that your relationship breaks down… it just means that I choose to fight for all those who cannot, to support them when they are down, and be as honest and truthful about my own experiences to help spread awareness to the world, whilst showing that it doesn't have to be "The End" of your dreams… 

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3 thoughts on “Blessings in disguise”

  1. What a well written and heart-felt post. I know very little about endometriosis but it is clear, however hard it is, that you are more than a match for it. Well done, I can only imagine your words will really help other people who are struggling. Hope the move is going well. Juliex

  2. Amanda,
    I am so touched by the fact that you are using this platform (the blog of your new business) to share your endometriosis experiences. I know that your endometriosis situation affected your former career and helped to inspire you to start Amanda’s Patch.
    It makes perfect sense to explain here one of the driving forces behind your decision to create Amanda’s Patch. (This is not to mention that it’s an inspiration to see you taking your endometriosis experiences and turning them into such a positive, uplifting outlet)!
    Every time a woman with endometriosis ignores the taboos about speaking about endometriosis and some of its symptoms (such as potentially brutal periods), I think it helps break the silence. The more endometriosis patients speak out, the easier it will be for those behind us to feel comfortable doing so.
    The isolation patients feel over not being able to discuss their illness is terrible. This needs to change… and you are helping to make that happen.
    Your heartfelt words describing just a peek at some of the ways in which endometriosis has affected you are powerful… because you are spreading awareness of this illness.
    With 89 million women and girls diagnosed worldwide with endometriosis (and many more not-yet-diagnosed due to the average delay from onset of symptoms to diagnosis of 9.9 years), it’s high time endometriosis awareness is increased.
    Thank you so much for what you are doing to spread awareness of endometriosis!
    Jeanne

  3. I can’t really say anything new that i haven’t said before-simply want to say that i love following you and your well thought out take on things. I have had some similar feelings about certain things-but have never been able to think things through as well!
    Sheila x

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