Endometriosis: my misunderstood truth | Nathalie de la Calleja Orozco | TEDxYouth@EEB3
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- čas přidán 16. 04. 2023
- This year, EEB3's annual TEDx event will host fifteen inspiring speakers. These will include members of the school community and experts in various fields. They will discuss the theme: "And Against All Odds..." and, through their talks, shed light on some of the most pressing issues of our time. Through the diversity represented by the speakers, everyone will find something that interests them in the TEDxYouth@EEB3 programme. For better or for worse, humans have the potential to beat the odds. The main message of the event is that we should, therefore, seek out the unknown and defeat the odds to construct a better future. In this talk, I will be sharing my personal story about living with an illness that has deeply affected my life : endometriosis. I will show you what my reality is and share my diagnosis journey through the lens of the ongoing misunderstanding and unprofessionalism I went through when dealing with medical professionals. Furthermore, I will share how I managed to push through my journey and persevere “against all odds”. My aim is to inform about this illness and make this invisible illness a little more visible. The audience will learn about the impact that endometriosis can have on one’s body and lifestyle by hearing my own experience. I want to help people see what most endometriosis patients endure and spread awareness on these issues. Ultimately, I hope to perhaps help someone as lost and confused as I was when my health started declining when they hear this talk. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
Thanks for coming out and sharing that painful story. As a stage 4 endometriosis sufferer myself I can empathize
My girlfriend was recently diagnosed with this condition.. We’ve been together for around 3 years.
It’s so hard to see her struggle with the pain.
She is waiting on further consultation with her doctor.
I told her I’d be here with her every step of the way.
I will not break that promise.
Can anyone here tell me what to expect going forward?
I want to be there and comfort her in any way I can.
I hope your journey is going well so far. It is very difficult to say what to expect, because it will vary greatly depending on her stage of endometriosis, the organs affected, the treatment choices that are available to her and personal choices like: Is she aiming to keep her reproductive system if possible or if she'd rather be free of it and reduce her risks in terms of endo, cause e.g. she's like me and never wanted to bear children.
The outcomes can go from "fine with medication". "fine after first surgery" to "bad medication side effects but better than endo" and "repeated surgeries" to "many medical emergencies cause she's got stage 4 and it's affecting organs like her lings, her bowes, her brain etc."
I absolutely wish you both that you get the best outcomes possible! And the most support you can possibly get. And I hope you and her can be kind with yourselves, when you feeel the weight of the struggle. Please be kind and let go of your own expectations to be functional and "OK" then. Sometimes it's OK to just feel bad and mad and upset about it and be worn out! As patient AND as a close one!
Be kind and build a life and manage expectations to an actually realistic degree. Be kind enough to cut yourself however much slack it takes, to make the actually most of your lives, not "the most of what is expected". Quality over Quantity!
YES!! An intelligent young woman speaking up not only for endometriosis, but lack of sufficient medical care.. period. KEEP SPEAKING OUT, bringing awareness and education to ALL.. especially the doctors.
I feel your pain and frustration, and my heart aches knowing your age. I’m almost 34, and I’m still trying to find a Gyno ( among other medical professionals )who doesn’t dismiss me. I deal with all of what you’ve described, it started within the first year of my cycle at 12. All the women in my family history had a hysterectomy by 40. I have a multitude of issues to address, but it feels worthless to keep trying.
Don’t give up. 😭 I’m in so much pain people say go to the ER. That doesn’t work. It takes a skilled surgeon. God help us 🙏🏼❤🕊️
Может попытаться найти медицинского юриста, чтобы он помог вам добиться операции по эндометриозу?
Fellow woman diagnosed with endometriosis here:
Modifying your diet can help tremendously. I adopted a plant-based diet and reduced my consumption of inflammatory foods and it made a big difference. Diet, regular exercise and stress management techniques are all very helpful.
(Most) Western medical doctors should be ashamed of themselves.
Not western doctors need to be ashamed. This is an incredibly judgemental thing to say and puts you on the level of disregard you accuse them of. The are ppl and their behaviours areoften the results of their circumstances. And they are TRYING to help but are not always well equipped to do so. And I can guaranteee you, that you have more in common with them than you may be comfortable admitting to. X'D
What I'm saying is: patients, doctors and often also researchers are frequently on the same side. And we're struggling with crazy systemic chalenges and very real everyday life limtations. Aka: medicine is way too complex to be good even at a fraction of it. Let alone topics that suffer systemic misogynistic bias.
The way to fix this, is not to do the same as doctors and disregard where their behaviours come from. But instead, fighting for every bit of common ground we can. And that can include the really hard work of coming back to them and providing them with the insights of what we found out and how their behaviours affected us.
I am very ashamed as a medical professional that noone had empathy or at least check your real symptoms.Patient has to always be believed .
I do apologize in the name of my co workers.Must be horrible to feel that way!
Medical doctors need more training on empathy...this pandemic has made us robots..:-(
Hope u re okay now ..And if any other doctor misshears you, please remind them that they have a duty of care to listen and investigate!!
❤much love!
Keep strong.
Nurse John
My endo journey started in 2007 and the medical professionals if you can call them that were behaving abominably with respect to treating women with this illness long before the pandemic trust me. The number of times that I've been called a liar and told I was a drug seeker is despicable.
You are so courageous , I couldn’t barely stay up like that more than 3 minutes . I am a endogirl to ✊🏾
i don't really comment on videos, but you know I couldn't miss this ! congrats nat, I'm so proud of you !!! such an important topic in such a moving manner. truly one of a kind !
Incredible talk done by an incredible person! Congrats Nathalie, you deserve it
I wanted to thank you for sharing your story. Your bravery in discussing such a personal topic is truly inspiring. Your video will undoubtedly help others who are also dealing with endometriosis or any other chronic illness, and it serves as a reminder that we are all stronger than we think. You're truly exceptional!!!
Excellent TED talk! Thanks for sharing your story!
You are incredibly brave. I hope you don't mind me saying that I am so very proud of you! My endo Journey didn't begin until I was 38 years old and I feel so very heartbroken for girls who become sick at such an early age. Best of luck moving forward ⏩😃❤
This story is so familiar to me. It's so rare to find a Dr willing to listen!
Thank you for your research. Struggled my entire life and a predominantly plant based whole foods diet helped significantly with pain and shrank my cysts. Still struggle though and couldn’t be more grateful for your research .❤
Eres una niña valiente...una excelente charla cuántas personas pueden estar sintiendo algo parecido sin saber que les está sucediendo y visitando de médico en medico. Dios ilumine y guarde tu vida....
Thank you for sharing!
Wow❤ this is so encouraging 🙏🙏...
You're a good speaker it doesn't look like you've been skipped class
Triste realidade, ouço diariamente histórias parecidas e mesmo assim ainda me surpreendo com relatos de uma assistência tão ineficaz. Sou muito grato por ser instrumento de transformação na vida de milhares de mulheres que possuem endometriose, e ajudá-las a viver bem, apesar do diagnóstico, virou um dos meus propósitos de vida.
Thank you very very much for speaking up and at such a young age. I'm an endo paitient myself. It startd at 11, it lasted till I got my diagnosis + confirmation and surgery at the age of 34. And inbetween that, no support and a lot of judgement over my lack of "functionality". All aggravated due to being neurodivergent on the inattentive ADHD spectrum (another diagnosis I got at age 34 after advocating for myself, though I had a childhood diagnosis that was never followed up). Not helpful for sure. Cause when your brain directs attention towards the strongest impulse and guess what happens when you're in pain. I gets worse!).
Strggling to get myself to appointments by myself regardless of rejection sensitivity and ADHD executive dysfunction. Stomaching disregarding comentary and superficial, partially misogynistic commentary. Finally finding doctory who could not just help but actually were excellent at listening, just to lose access to them, because some doctors cannot be accessed outside of "emergency" and "need for surgery" and it's not that they lack the will, they're bound by rules. And rules are bound to make sense and yet, fail individuals.
I'm happy and mostly pain free at the moment (if not for some complication of a complication of a complication and gosh could we have done better with all of this, if doctors were systemically given more time to care! Their lack of care can be bad character, but often, it's utter overwhelm and frustration).
My heart goes out to all my sisters, brothers and non-binary sweets with endometriosis! And all people with struggles that are disregarded and go unheard! I shall do my best to see and hear you, whenever I come accross you in life. And I shall keep advocating for all of us, whenever my strength allows.
Right now, I'm trying to somach the trauma of processing on a deeper level, what I've gone through with way too little support and way too much judgemental commentary. It sure is true that the hardest part of trauma processing comes crashing in, when things start to go the way they are supposed to!
Tank you so much. I have endometriosis and I got diagnosed after 12 years of so much pain and so many people who thought I wast 'just' depressed....😢
If this disease was affecting men there would’ve been a cure 20 years ago. I wish I could scream at all the doctors that treated you horribly. They don’t deserve to have a license and are clearly rotten human beings.
There is an endo diet and it seems a lot of women use vitamins and minerals Omega 3, magnesium, zink, NAC which seems to help them, just starting them myself
Do NOT use NAC as it is a mercury chelation therapy protocol and if not used properly will spread mercury poisoning throughout your body.
Have had endometriosis for some time now and I didn’t know because the doctors lack education to diagnosed it until I made my own research
I’ve been planning to make a video myself and she spoke exactly the way I wanted to but I will go deeper: risks for other autoimmune diseases, ovarian cancer, MS, risks of losing organs, How those endo tissues also bleed but the blood gets trapped so body attacks it causing inflammation which then causes pain, How it’s so sticky it glues organs together. How some of is go through nearly yearly excision surgeries. Extreme high risk for Interstitial Cystitis (like over 50% of us get it) which also has no cure and the pain is simile to endo pain
Thank you for sharing your story 💛 it really does take a lot. Sharing mine has been so difficult because I go live daily so I’m asked daily if I’m better which I’m not and I’m told daily to be positive which hurts reading that even though they come from loving intentions I do feel like I’m being disregarded or that my disease is minimized. Last time I went live I broke into tears because it was right after going through surgery and getting more bad news so now I am taking a break
@@persianlatina Please have the courage to speak up to people. It shouldn't be something you need to spell out, but unortunately only you can make that change. Do not allow people who "mean well" to become hurtful. Toxic positivity is real AND people dumping their emotional baggage on you in a "Are you well yet, please? I'm so worried. Can you please give me good news so I can stop being worried? Cause managing my worry is your job, not mine!". Not doing it intentionally STILL results in really unhelpful additional emotional burden on you instead of support.
Here's a way to talk about it, or even writing them a note: "I know you are worried and mean well. Unfortunately this is how it feels to me and hurts me and I DON'T think, that that is the effect you intended. I really need your support now. Could you handle it like this instead in future?"
Examples:
- You get to ask me once every 3 months, if you must, but otherwise, please rely on me to tell you when I'm ready.
- I need you to take good care of yourself. You suffering along is not what this is about. Support can look like NOT asking me how I am, but rather, ask me: "Is there anything I can do to help right now?" and I'll try to bebetter at giving you chances to be hepful, like asking for a hug, asking for you to listen to my rant without getting swapt away emotionally, asking you to just sit with me in silence, asking you for a hot water bottle change when I'm in pain etc. ec.
If they truly mean well, they'll strive to accomodate your input. Especially if you can get accross, that "here's this unhelpful thing that you accidentally do, but you could be my hero and purposefully do X instead!"
Been battling endo for 12 years. Anti inflammatory diet keeps symptoms at bay, aling with CoQ10, B vits, zinc, selenium, kelp, magnesium, and best of all - castor oil packs. Nothing beats castor oil packs for cleaning up inflammatory 'soup' after endo flare up or reducing chocolate cysts and generally keeping pelvic pain at bay.
I just had an endometriosis surgery and I wish I knew about this before. I have menstrual pain since I was a teenager, but the worse started about two years ago.
I have stage 4 endometriosis I like you missed diagnosed by doctors in uk . I’m waiting for my second laparoscopy my tissues back after first surgery . I’m on hormonal pills for a year waiting over a year for second surgery . Living with the pain and depression. I understand what you going through! Oh dear what is next for me ???? Scared
I've been struggling with this pain since I was 12, I am 19 now. I am still waiting for a diagnosis.
What an amazing 17 year old way way more wise than your age
I also have endo and I don't want to remain alive anymore
Really optimistic
It's not like you can cure a chronic illness or just shrug it off. That's why it's considered a chronic illness in the first place. The issue is the little recognition and seriousness endometriosis gets when it comes to medical professionals and doctors, which results in many people suffering even further from just being ignored. You missed the whole point. This talk isn't about being optimistic or not, it's about bringing awareness to this problem so that people who are going through similar experiences don't have to pointlessly suffer as much.
This disease has ruined many lives including mine
Have no life at all also:(
😢😢😢
Exactly and then they call it normal period pain why taking painkillers you should bear like other. Well who will tell them what it feel's like every month even painkillers doesnt work on us
I have no pain during periods but during intercors I feel inflammation Drs diagnosed endometriosis .i operated in July now Dr says that it is growing now but I feel just inflammation I want babies what should I do please help me I m 35.
😢
😭😭😭
My endo causes me very scanty periods .I wish I had heavy periods with my Endo
I too had scanty periods...I underwent through surgery recently but I didn't have painful periods
What is your story ?
🎗🎗🎗 the thing is endometriosis can be seen on scans and blood tests, but only at advance stages and only specialists can interpret the exams.
I’m sorry for all the pain you have endured/enduring! I really related to the hunger and food struggles. And masking the pain!
You're right, endo can be seen on certain tests and at advanced stages. I've had many ultrasounds since February of 2020, blood work and 2 MRI's. It wasn't until my recent MRI that mentioned endometriosis for the first time after years of testing done. Couple weeks ago I was diagnosed by a gynecologist who specializes on laparoscopic surgeries just by looking at my MRI images that I have stage 4 endometriosis.