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Endometriosis UK
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Creating awareness - advice please!

Hi everyone, I’m currently suffering with endo and my operation is on the 24th, I’ve suffered with endo pains since 2013 but was always told it’s just my period. I feel that there isn’t enough awareness when it comes to endo, and when I was diagnosed hardly any friends/family had even heard of it - which concerned me. I want to make a change and create awareness for this awful disease, I’m a fashion student and next year (in my 3rd year) I will have the opportunity to go to London Graduate Fashion Week (if my collection is amazing). I want to create a collection based around endo and the journey which not only I but 1000’s of you have been on. LGFW will be an amazing platform to showcase and create awareness for this disease. I would really appreciate you’re thoughts on this/advice or stories! I will also be reaching out to any charities in the hope of sponsorship towards my collection.

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I think this sounds like an amazing idea, you’re right we need much more awareness x

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Hi I think this sounds awesome! Well done to you and thank you for being so thoughtful to everyone this impacts.

I agree massively with you, this disease has so little press, media attention or knowledge surrounding the subject. I'm currently in my final year of studying therapeutic psychology and what shocked me the most about going through all of this was the lack of mental health help offered to me, not one doctor so far has asked me how I feel or my mental health concerning the diagnosis or my surgery, the pain etc!

I've also studied art, so if you want to colab/bounce off each other for ideas go ahead! I'd love to be involved or help out any way I can, and/or if you want to hear my story feel free to Pm me if you want (:

So impressed by this!

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That would be amazing!! Thank you for your reply, id love to collab or gather ideas. I want this to represent everyone going through this as a whole so the more advice/stories I get the bigger the impact I can make! I especially think mental health is a huge deal, I know that from myself I’ve been really struggling these past few days with my op coming up and you’re right no one ever asks if you are okay or how you are feeling. Being only 20 and being told my fertility might be affected it’s hard to just let that sink in, I want to put all my efforts/sadness/anger into this collection.

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Hey, that sounds like an amazing idea! I’m 17 and have recently been diagnosed with Endometriosis. I’m having my first laparoscopy on the 23rd April. I’m currently bedridden most days and struggling a lot. I’ve missed nearly half a year of college but once I’m better I really want to raise awareness too, within my college and by running a marathon!

I am currently studying A level art so this really caught my eye and I’d love to help you in anyway possible.

It’s so disgraceful how many people don’t even know or haven’t even heard of Endometriosis. It’s astonishing that it’s so common and no one knows about it. I always feel like if men had a condition that effected 1 in 10 of them oh boy we’d all know about it! Endometriosis does just cause pain and heavy periods, it effects our day to day lives, our mental health, our physical health, our relationships with friends and family. There is so much to be aware of. We need to get our voices out there!!! Xx

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Thank you for your reply! I’d love it if you could get involved too, I feel it would be really strong if this could actually be a collaboration from people struggling with endometriosis. I’m really hoping to get to graduate fashion week so obviously anyone that produces any form of work towards this would be credited! I will private message you in regards to art work xxx also good luck with your operation, mine is on the 24th April xx

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Mae20 I think what you are planning on doing to raise awareness is incredible!

Endo has been scaring me mentally and physically for 19 years...I have scars only mother should have and no babies to show for it. No diagnosis till I got a grapefruit size cyst that could be seen through my clothing. Always on a waiting list for surgery and always receiving emergency surgery before I get to the top of the list!

If you could make someone aware that this is what they might have might not just be heavy painful periods, so they can be warned earlier and not have reduced options, I'm all for it!

Half of the issues lay with G.P's lack of awareness, their reluctance to make gynecology referrals and the lack of decent endo specialist.

Best of luck in your fashion project! 🍀😊

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Thanks for doing this it sounds brilliant. I know standard life are currently supporting the endo campaign with endo UK they may be a source of funding ?

I have sent questions to my MP about endo care and provision and he is them it to the health sec. I asked about endo specialist nurses and endo specialist consultants. More joined up care re pschological, financial and impact on relationships etc. Thanks for making endo less invisible. Will the pics be online ? Would love to see them.

I think that women's pain is triviallised (including labour pain) and women's bodies are taboo as are periods. Endo is all part of what feels like a dirty secret so getting it out there is amazing. I feel a lot of loss relating to endo but also we are all endo warriors and we are strong (although I can feel weak and lonely at times). We all deserve better, more research and better treament options. Theres a lot been said by Prof Horne (endo specialist and researcher) about endo and gender bias and women's suffering. He has a twitter account

Good luck with the project and thank you so much for doing it xx

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It is an amazing effords ,When I have diagnoded endo ,dont know what it is ,I really appreciate if girls have this horrible disease should aware of it .Keep it up girl

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This sounds amazing! I think you should absolutely go for it!!! 💪 I’m not quite sure what to suggest from the design point of view, maybe clothes with writing on or x

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Thank you! I have actually researched some campaigns and charities that raise awareness for endo. One of the campaigns is known as ‘#toolong’ which I find is really catchy and represents all our stories so well! I am interested in using this slogan within my collection somewhere so I’m going to contact the charity who run the campaign to see if this is something they would allow me to do and support it!

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I think that’s a great idea 👍 x

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What an amazing idea! And so needed. I’m a choreographer and dancer specialising in hip hop/popping. Drop me a message if you are interested in collaborating on any movement aspects of a show etc! 😊

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Wow, sounds amazing. I agree that women's pain is really trivialised, as a previous poster said. I'm sure if men had to have periods/give birth there would be much more support in place.

I currently have to wear maternity jeans and an unwired bra because the pressure on my abdomen is just too painful, which makes me feel very frumpy and old before my time (I am 38 though, it must be worse for younger women) and there is a real lack of clothes for people who need that flexibility. So I'd love to see wide waistbands, soft fabric and comfort presented in a fashionable way :)

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Thank you for your reply! And great advice on the fashion side of things, this is what I need! I want to know what you all want, what you feel is missing. I’m already considering my fabric choices and colours - soft silks, satins, chiffon’s ect. It’s going to be very feminine, soft and pretty.

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Gorgeous! Yes and feeling feminine and sexy is also very hard when you're wearing granny pants so that sounds great! ;) I tend to go for knickers that have a deep lace waist so even though they're massive they have a BIT of something going for them, haha!

I don't have much of a period anymore but I know a while back I would also have been grateful for darker colours on the bottom (eek!)

Sounds like a fantastic project, good on you! :)

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I sincerely hope a TRAINED EXCISION SURGEON with extensive experience will perform the surgery, otherwise it might end up being pointless. Don't want to scare you, just trying to do the right thing by warning you! Kudos for the initiative!

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What do you mean?

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To my understanding, and do tell me if I'm wrong, but all surgeries in the UK have to be done by qualified and certified surgeons/doctors, including specialist surgeries. Some have more experience than others, but everyone's got to start somewhere 🤷‍♀️. On your appointment letter youll find the doctor treating you and you can do some research about who your doctor is by googling them and the hospital you're going to to find out their back ground. However, from what I've read and have experienced you always get an experienced gyne surgeon unless you have to have emergency surgery for some reason and get a general surgeon. But yours is pre booked so it should be fine!

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I don’t understand what Stefani is saying as this post was about creating awareness not my surgery itself. But my surgery is with an endo specialist who I met at a private Nuffield hospital for the internal scan. I then went onto his nhs list to make sure I’d get the right treatment.

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That's awesome!! Best of luck to you! The reason I used this post to ask you about your surgeon is because I read about countless women on this forum getting surgery and then starting suffering again a few months later because they got surgery with a regular gynae or a non-experienced endo surgeon

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Fab idea!! Another thing which sticks out to me is the phrase ‘you don’t look ill’ I get this a lot, yet on the inside (with stage 4) everything is attached to everything causing agony all of the time. Maybe something with a reveal that appears normal to start with.

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Thank you! I’ve got just under a year to create this collection so all ideas will help, the more the better xx

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