Lifestyle: Endometriosis Awareness Month

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March sees another yellow Endometriosis Awareness Month - an entire month dedicated to spreading the awareness of a disease that effects women worldwide and causes infertility, miscarriages and daily abdominal pain. Here's my endo story...

Today I thought I'd share a very personal post with you. This post features a lesser known, more hidden fact about myself and something I've been less inclined to discuss in the past. Whilst it's hard for me to be open about this kind of subject and allow myself to be vulnerable, I think is something I need to share...

Worldwide EndoMarch and March into Yellow in association with Endometrosis Awareness Week , call for doctors and health services across the globe to recognise endometriosis and get a faster diagnosis for it's 1 in 10 sufferers. The symptoms for endometriosis may seem like your average women problems but ignoring them may result in infertility in later life. 

If you've experienced the following symptoms, it may be worth getting yourself checked out: 
  • Heavy, long periods
  • Bleeding between periods
  • Extreme abdominal pain (even when not on your period)
  • Severe cramping
  • Fatigue
  • Pain during/after sex
  • Problems conceiving/infertility or miscarriages
  • Some patients have experienced problems with their bladder or colon as a result of the condition
If you yourself have endo, you'll understand how hard it is to get taken seriously by doctors. As a teenager, I was convinced the extreme pain I was experiencing was normal pain but I later found out that no one's body should take you out like mine did. Nor should it be all year round, day in, day out.

As a seventeen year old girl, I was not provided the support or information that was required and had I not pushed to get it sorted, my pain would be even worse and my chances of having a baby - who knows? I still feel when I go to the hospital that my disease is not taken seriously and up until now I've never really shared this information with anyone, supporting the charity in my own quiet way. But I really think it is important to share this so that the odd 17/18 year old girl or maybe even older girls/women might read this and think - maybe it's not normal that I'm experiencing this agony all the time or maybe that doctor could of done more to help me.

After nearly two years of invasive, repetitive and unsympathetic hospital appointments and being shrugged off due to my age, I finally underwent my first laparoscopy confirming the endometriosis on my left ovary (something the doctor swore it could not be). Luckily, being younger, the cysts caused by this were removed, healed and I went a few years with relatively toned down pain. Now almost in my mid-twenties, I have undergone two operations for the condition but it took a hell of a lot of pushing on my part and another year of appointments and invasive tests to confirm the obvious. I am, however, one of the lucky ones who will hopefully get the help I need quicker, should the time come and I struggle to get pregnant. Though it took a long time and a lot of emotional distress, I got my diagnosis although they're still very quick to shrug me off. However, many out there will never know the damage to their body until they try to conceive as some symptoms can go completely unnoticed.

For me, the hardest part is the mental effects the condition has on you. As a 17 year old, being poked and prodded about by countless doctors and being told the chances of having a family may be limited certainly takes a toll on you. Especially when family members are telling you "not to worry about it". It's easier said than done. For me, it's the wait that's hardest part. My thought process for years was "what if no one will marry me?", "what the point if I have no future?". Thankfully, the online support system has been reassuring and a huge help.

You can help support endometriosis charities here and find further information about what causes it here. From Facebook and various social media platforms, I've found there are some amazing support systems for those who just have fears for the future or even those who have miscarried their babies or had hysterectomies as a result of their disease. Luckily for me, there are also some amazing stories of people who have gone on to have happy, healthy babies also. Endometriosis, though not curable as of yet, can certainly be managed if given the correct support and information. Mine is certainly not an extreme case, I am fully aware that I am very lucky to get off as lightly as I do but I feel it is important to get the message out there in an unlikely post to my usual.

As for my future, it may or may not feature children and a family and at this point in my life I'm not even sure I ever want children anyway. I'm certainly not ready right now but there will come a time when I'm pressured by doctors to start thinking about it. I'm not sure if I even want that anymore but I hope I get the choice either way, when the time comes.

If you have any questions/know anyone or think you might have it yourself, please feel free to leave me any comments - I'm happy to answer anything I can (though I'm certainly not a doctor!) . Please remember that they might try to convince you that you're over reacting or it's all in your head but please push - if you know something's not right, please don't take no for an answer. Help to raise awareness. And if you see anyone one wearing a yellow ribbon or clothing this month - you know why!

Thanks for reading!




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23 comments:

  1. I know someone who also suffers from this and I agree that its not spoken about often enough, which I actually find a little bit strange. Well done for talking about it and for raising awareness of the charities. xx

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    1. Thanks hun. Like I say, definitely not something I'm usually ok with sharing but think it's good to make people aware! It's strange isn't it? Thanks for reading it :) xxx

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  2. Well done for sharing your story! You may not think it is much but it is helping lots of people and your struggle is just as valid. Best of luck x

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    1. Thanks very much, that's very kind of you. Thanks for reading it, your site does good work!

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  3. I was told I had mild endometosis but recently I keep getting sharp pains that comes and goes but it really hurts. is this what you had your operation for? what was the operation for? Thanks for sharing ox

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    1. My operation was to remove cysts on my ovaries caused by the endometriosis and this helped to stop the pain also. I would get it checked out if you can - they can scan you and see if there's anything up and do tests which aren't fun but if you're in pain then they might help to stop it. Good luck! X

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  4. my friend has this and she was recently blessed with being able to have a baby <3 I am so happy for her!

    xx Sera | STARDUSTBOHEMIAN.COM
    (IG: @TheStardustBohemian)

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    1. Aw that's great news! Always nice to hear success stories - gives others lots of hope :) thanks hun x

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  5. Really informative post. Thanks for sharing this as I had never heard about this condition! I really hope all goes well for you, good luck x

    Becca xx

    xbeccabe.blogspot.co.uk

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    1. Thanks for reading it hun! Yeah it's really not known at all despite 1 in 10 women having it! Thanks very much :) xx

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  6. I have never heard of this before! I hope your doing okay and keeping well! You poor thing! Periods are bad enough! Good luck and I hope it gets better!

    fixmeinfortyfivex.blogspot.co.uk

    xx

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    1. Aw thanks so much hun, I'm fine - definitely got it a lot better than some! Thanks for reading, I appreciate everyone taking the time! And also it's so nice to know that people are becoming more aware of it! :) xxx

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  7. Well done for sharing this! You've really opened my eyes up to this. I wasn't aware of it at all. I remember having kidney infections every other week for years and my doctors just kept giving me tablets and pushing me away. One day I got a great doctor that refered me to the hospital for scans and we found what the problem was. I think it's a shame when doctors won't acknowledge that there could be something else going on just because you're young. Thanks for sharing this post I'm sure this will help a lot of people

    www.sophieslittlesecrets.blogspot.com

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    1. It's very frustrating isn't it? No matter what your condition, it's so annoying when someone won't recognise that something's wrong and you need it sorted. So glad you got it fixed (even if it did take ages!) hope you're all better now! Thanks so much for reading it, I appreciate the support hun xxx

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  8. I'm sorry to hear that you're currently in pain, Sophie. Best Wishes to you regarding your surgery this month. xoxo

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    1. Thanks Gil, I have good and bad days but dreading the operation! Thanks for the kind words xx

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    2. I reblogged a post about endometriosis on my tumblr and put some links back to you. Once again, I wish you the very best outcome for your operation!

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  9. I remember being young and getting told if you were experiencing bad cramping, you should just take a pill and suck it up. I heard horrible stories from online friends about this and how painful it was for them. :( I wish this was taught in school!

    Best of luck ♥

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    1. Yeah that sounds familiar! Or put on the contraceptive pill aged 11 like me! I was given every medication under the sun but took years to find the right ones and even then they just dull it a little. I hope that more people recognise it! Thanks for reading it :) x

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  10. Thank you for sharing x I had to threaten to sue my doctor just to get a referral! I was told it was IBS and the pain was normal...It took almost a decade! I've had a few rounds of surgery now and it's the most under control it's ever been. I've made changes to my diet and exercise, which seemed to have helped too. I'm now 34 and the surgeons keep reminding me I should be having children now if I want them. Joy. I'm not ready yet but I know that if I don't have them soon, I may never have them. Hard to beat an extra bit of pressure!

    Honestly Aine

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    1. Oh my gosh, I'm so sorry you had to go through all that. That's awful - I did find the surgery really helped me though so I'm glad you managed to get that eventually. Unfortunately for me, I just had to go through a million tests and then say "I told you so" at the end of it all - both times. That's a really tough situation hun :( Try not to let them put any pressure on you - I know it's hard. I've seen lots of blogs on having babies with endo when receiving 40, maybe they'll help? Thanks so much for sharing your story with me :) Best of luck xx

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  11. Thank you so much for this post. I suffer from severe endometriosis; it took me six years of constant hospital visits and tests in order to finally have a diagnosis. Like you, I was convinced that the pain I felt was normal. In fact, I was made to feel like I'm weak by my teachers and peers, who thought I was exaggerating as I doubled over and fell to the floor crying and throwing up.

    I am due for surgery soon, as my ovaries have now adhered together - wish me luck! It's a frustrating disease to deal with, and one that is so misunderstood, I feel like I barely have any support. Though I may look young and healthy on the outside, I feel weak and exhausted, always needing to find somewhere to sit, or missing out a lot of uni, even afraid of applying to jobs. I have been labelled as lazy by people who assume that I just like to lay around - believe me, I would much rather be on my feet, at the gym, earning and such...it has really taken a toll on my life.

    Maira @ http://lovefrommaira.co.uk

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