Imagine “this”

Imagine you have a thing, a disease growing inside you. You didn’t do anything to cause this disease, it won’t kill you but it will take over your life. There is no cure, there is no blood test or scan to diagnose this the only way to find out if you have this is to have an operation. Surgery is the only way to get rid of this but most surgeons don’t have the expertise to properly treat this. There are other treatments but these can aggravate your symptoms or give you troublesome/debilitating side effects.

This will leave you in constant pain, sap your energy, confidence, zest for life, disrupt your hormones, make you angry, depressed/anxious/stressed, guilty, disrupt your sleep, make you dependant on prescription drugs, make you feel like a failure, affect your bowel and bladder, cause food intolerances, affect your relationships with friends and family, affect your work and social life.

Remember it won’t kill you but sometimes you wonder if you would be better off dead.

You will undergo countless tests, told your symptoms are normal, it’s just your age, it will get better when you have kids, told it’s irritable bowel syndrome or it’s all in your head. You will eventually think maybe it is all in my head and it will drive you crazy.

After years of complaining that this is having a terrible effect on your life, trying various medications, and realising it’s connected to your periods you will be taken seriously.

Surgery will bring relief as you will have a diagnosis, a reason for feeling the way you have been. You will be told you are cured only to find that whilst you are a little better than you were, you are not cured and you will have to start at the beginning, going crazy, having more tests, more complaining, doctors won’t believe there is anything wrong with you as you had your surgery and you are cured.

It will take many more years to be taken seriously again and given more surgery only to be told the surgeon could only remove some of the disease and you will require more surgery, take these pill in the meantime which may help but will give you terrible side effects. Whilst your pain may be reduced somewhat you still have the awful symptoms, fatigue, anxiety, depression, disturbed sleep, hormone issues, bladder and bowel symptoms.

Whilst you have everything you could ever want or need, a wonderful partner, family & friends, a fabulous house, top of the range cars, a good job, money, security you still have this disease growing inside you, trying to take your life. You try your hardest not to let it but there are constant reminders it’s still there and it’s going to get worse. You remember how you were before this and wish you could get back to that person.

You hear other women being cured and getting their life back and wonder why can’t you.

You wonder is this it? Is this my life?

Replace THIS with ENDOMETRIOSIS. This has been my life since 2009.

13 Replies

  • That was brilliant; I'm welling up here because you have said all the things I have said to myself and others over the years. I am always being told "lighten up" or "think positively and you'll feel positive" which only annoys me!

    It's sad that we feel this's been my life since I was in my teens (1980s) and I'm 42 now!

  • You should put this on Facebook and get it shared there is not enough understanding about "this" you have just hit the nail on the head so many times with this description. So many of us feel this way. Thank you!

  • Well said!

  • That's a great explanation, well said xxx

  • Thankyou, you have hit the nail on the head!!

    May I share this?

  • Fabulous!!! A great explanation of life with endo!!

    Thanks for this X

  • Please share this more widely it is so beautifully written and so on point that it will resound with so many women!! It could almost be my story too.

    I've been suffering since 2000 and only got my diagnosis in May 2015.

    Thank you for sharing. X

  • #THIS

    Why not share on Twitter??? That might get some people talking

  • You've put that perfectly! Definitely need to get 'this' shared xxx

  • Thank you so much for your post. Your road has been so similar to mine (and many others on this site). Even with this forum, I feel very alone sometimes. You should try to get your writing published! More people need to be made aware of what we deal with, and how our our day-to-day existence has been altered with Endometriosis.

  • Brilliantly put. Having a low moment there, now in tears because that's exactly how I'm feeling. And the same time scale. You should share this so people stop thinking were faking it/overreacting/miserable/hypochondriacs!

    X x

  • Hi

    Make me wanna cry!!!

    Even after my very 1st lap. two years ago i still feel the way u discribe it. This thing disease can drive one up da wall, sometimes i wonder how in heavens name i've survive it all.

    I wish for all of us a ( Painless)

    (Pain Free) life!!!

  • You are so brave. I am going through this too and I feel the pain it feels like there's no endpoint and then you start wondering well what's the point of life then?! People just don't understand and so they try not to talk about it which makes everything worse! I'm absolutely with you and I'm sorry we have to go through this xxxxx

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