Get Loud: Let’s Talk About Endometriosis | Alekszandra Rokvity | TEDxMedUniGrazWomen
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- Опубліковано 28 лис 2022
- Did you know that it is estimated that one in ten women suffer from endometriosis? That it takes about eight years for an endometriosis patient to receive a proper diagnosis? That it is one of the 20 most painful diseases in the world? No?
Then you should listen carefully to what Alekszandra Rokvity has to say, who suffers from the disease herself. Also, she studies endometriosis and is a productive activist.
Alekszandra is a Serbian-born writer and endometriosis activist, who decided to turn her pain into passion! Upon her endometriosis diagnosis, which he received after 15 years of medical gaslighting, Alekszandra committed herself to raising awareness about endometriosis: through activism and NGO work, as well as through academic work. She is currently pursuing a Ph.D. at the Karl Franzens University of Graz. Her doctoral dissertation is an interdisciplinary project focusing on the experiences of people with endometriosis within the healthcare system. She specializes in cultural studies and health humanities. Her work explores the connections between gender, age, the stigmatization of menstruation, and how this results in discrimination within the healthcare system. She has previously studied and taught in Serbia, Canada and Vietnam. 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
I just got my endometriosis diagnosis 1 month ago, the gynecologist I went to told me I shouldn't have painful periods, this is the first time a doctor has taken me seriously about them. I'm 27 and had my first period at when I was 11, since then they've always been very painful, even to the point to throw up. Another gynecologist I went to when I was about 15 told me it was normal, and he didn't even checked me... Now FINALLY I'm having treatment for it. It's so important to shed light into this issue, it's been so normalized and a lot of people live with so much pain because of this.
Me too.
This is so important! I literally had no idea that the amount of pain I was in was not normal, or vomiting on your period was not normal. I mentioned it to a gynecologist multiple times, after years I had a suspicion of endometriosis but she said directly it wasn’t likely, until I went to a different gynecologist. It‘s so crazy how other diseases with similar frequency rates get SO MUCH more attention and money in the research! We all should start talking about it
It's so sad. The medical system doesn't care about women. It's even worse for minorities or poor women.
Thank youuu! ppl literally dont understand what we go through
I am in Turkey and have been living with endometriosis for 27 years. There are many similarities in our story. The most important thing is to end the silence and talk about the impact endometriosis has on our quality of life and demand more!
I love her straight forward attitude❤️😂😂 Very informative thank you!
My daughter has suffered from painful periods since she started having them. Doctors keep telling her it's just normal, that it'll pass. I'm praying one doctor would actually see that her symptoms are not normal and help her take the next steps to pain free periods 😥🙏🏼
Has she been to a gynecologist? They are usually more likely to take menstrual problems seriously, but even then, many of them don't, and it's so sad 😢 I hope she finds the help she needs! Severe menstrual pain is serious business!
And they're wrong it's definitely not normal!
I've had many of the symptoms for years and my doctor refuses to look into it as he says "the only way to diagnose endometriosis is to open up your body in a surgery and look at your organs." He also said "endometriosis is very rare."
My aunt has quite severe endometriosis that was discovered when surgeons tried to remove a tumor. The surgeons as her bowels and bladder etc were all wrapped with endometrial tissue so they couldn't operate.
It's insane. I complained to many doctors only to be told that I must be producing too much Progesterone or that I should try taking Iboprufen or birth control. No answer based on actual tests. For a while, it made me feel like maybe I was complaining too much or I'm just a crybaby because, after all, if there was something wrong, these doctors would have told me so, right? wrong. I also had a gynecologist who based on a single ultrasound that did not found an abnormality also suggested I either have birth control or have a hysterectomy (hysterectomy! in my 30's, no children!). I asked him about endometriosis after doing my own research and he dismissed it immediately saying if I didn't have the symptoms when I first began menstruating, I didn't have that. Well, years later and many doctors later after a Laparoscopy, there it was - Endometriosis
Yeah "very rare" - it's insane such a common condition in women is so ignored by medical professionals
Omg thats criminal bruh, how comes no one treated your aunt for endometriosis so many years, its sickening
I had mine diagnosed through a surgery indeed but I recently found out there are mri s for this which is amazing. And if your health depends on that, it's best to do the biopsy honestly
@@a.k.salazr same, been dismissed so manyctimes until I thought I was the problem. so sad and angering...
Yes, I am the one in nine ( newest statistics). When a doctor does anything else but explain this condition or try to help, post your experience on Google, to prevent other women from going through the same experience - this will also document the type of doctor this is - and I strongly feel that this should be done for every bad and good experience with a health care practitioner) and find another doctor rather than allowing the same one to treat you or your loved one.
Another thing we must look into is an alarming fact I just learned. The products we use during menstruation is considered to be medical equipment but there isn't a governing body that makes sure that these products are safe - look up Think undergarment which was found to contain PFAS and other harmful chemicals. Our pads and tampons are also made in astonishing ways...this MUST STOP.
Congratulations and thank you on a very direct, informative presentation that highlights a horrible, silent, incurable disease that is grossly underfunded & needs more awareness.
Thank you for your talk. This is issue is way underrated... what upsets me the most os other women who do understand... and judge
Thank you so much for your presentation.
I’ve been suffering from endometriosis for a long time. When I lived in Brazil, treatment was much better, as Brazilian health system really works and doctors don’t hesitate to prescribe exams such as MRI for a proper diagnosis.
I’m currently living in Ireland, and I don’t know why it is so difficult having an appointment for a MRI exam. I’ve been trying for months, unsuccessfully. I’ve been taking Cerazette for more than 5 years in order to stop periods, but I still struggle with pain during the night. I can’t sleep, sometimes I can’t even walk to grab a painkiller and a cup of tea.
We should speak about it. Painful periods are not normal. Missing classes, job day or any other appointment because we are in our period is not normal.
We shouldn’t normalise pain.
Thank you so much for this content.
Dear Alex, thank you for this 💛
Just to reiterate, Endometriosis is NOT the Endometrium. The tissue is similar.
Thank you for talking about it!
Thank you so much. I’ve suffered for many years with no answers. It wasn’t until this year I found out I was unstoppable get pregnant….we’ve been trying since 2018🤦🏾♀️😢
She did a really good job. Well done.
Thank you so much.
Thank you for this !!! 💛💛
Amazing speach!
Thank you for this video. These are simple things that we should all know already, but you put everything I try talking about into coherent words. I am still undiagnosed, and have been told "getting preganant" would fix it by three different gynaecologists. Doctors, family members etc are all heavily concerned about how "fertile" I may be, but have always been unable to discuss that maybe its not my weight but an actual illness that is causing me debilatating pain and could cause further problems. Not only that, since there is no diagnosis or medical prescription given to my condition, anytime I am unable to attend classes, my reason is not valid enough to get an excused absence.
I have a diagnosis, and it's still not seen as a valid excuse 😢
Loved your attitude, girl! Hope you are better now.
This made me feel so much better about my own Endo🥺
Thank you so much. I'm waiting on my pathology report and just had a laparoscopic surgery done to see what's going on in there but I have the most severe symptoms I was hospitalized for 3 days because of a giant cyst and severe labor like pain (I have no chance of getting pregnant) and they refused to take it out. That was a year ago, if they had taken it out they would have seen it then and been able to do something but no, instead I suffered for a whole nother year without answers.
It has to be more women than that. Myself and my 2 daughters have it.
I agree. I think the 10% is a low estimate due to so many women being gaslit.
@@lauren23160 ain't that right.
I think about 10% is probably fairly accurate. My mom and I have it, but that makes sense because there is a genetic component. You’re likely to see endo cluster in families like that, because it’s at least partially hereditary
Even 10% is too much, its like diabetes
I just got diagnosed after years of pain and symptoms. I was told it is when the blood and tissue backs up and enters the abdominal cavity. I need to do some reading on this.
i was diagnosed last jan 3, 2024. but i was experiencing the symptoms 10 yrs prior. i am 46 y/o now and taking vissane as prescribed by my ob-gyn..and told me that i am nearing menopause and just wait for it 🤣
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We can see it in a new blood test, we can see it in the MRI, we can sometimes see it in the Ultrasound. And Endometriosis is more likely an immunological disorder. ;).
Which blood test @natalieweber93 ?
My doctor said that evidence of endometriosis can only sometimes show up in tests. All my tests came back normal, but laparoscopy revealed that I have endometriosis
@@viktorijaignataviciute5407 high levels of ca125 can be a marker for endometriosis, but also for ovarian cancer or cysts
Gold standard is surgery for diagnosis, ultrasound mri only captures if it is severe and even then not always. Pushing for ultrasound and MRI delays treatment and enhances suffering. Whilst they do the surgery to diagnose they can also start to treat which is better. I've had it for years, been through numerous surgeries, ivf and zolodex injections. I was ignored for years initially, then my bleeding became more painful and daily, and then when they did surgery the Endometriosis was stage 3 and a lot of my abdominal organs were stuck together, I also have adenomiosis.
25 years it took for my diagnosis.
Endometriosis destroyed my life ! Pain, pain, pain. Not able to carry a child. The shame about it. Doctors cant not beleive the pain and symptom on paper. Ex; I pass more test about crohn disease because having crohn disease vs endo was making more sense…. Endo cant not be that painful ….
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Also here to say ENDOMETRIOSIS ALSO EXISTS IN MEN. It's not exclusively a uterus owners disease!
Very very rare , easily removable with surgery , doesn't reoccur after so surgery is a definite final solution, only appears in patients with cirrhosis
For women it's different it's a life changer and a lifetime torture cause some women go through 15 to 20 surgeries to remove the lesions just for those to come back
Men do not have an endometrium. Ergo no endometriosis.
Wow, I looked it up and you’re right. I had no idea, this was news to me!
How.
A uterus owners disease? Excuse me but I am a woman. I will not be reduced down to my body parts.