Get Loud: Let’s Talk About Endometriosis | Alekszandra Rokvity | TEDxMedUniGrazWomen

[@HeyItsSix]

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.

[@queennaturelle99]

Me too.

[@aylinileri]

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!

[@badwitch5]

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

[@israeliana]

It's so sad. The medical system doesn't care about women. It's even worse for minorities or poor women.

[@karlareyes4688]

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 😥🙏🏼

[@sundragon13]

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!

[@sundragon13]

And they're wrong it's definitely not normal!

[@gracelight216]

I highly recommend doctor Namaky in Cincinnati. I hope she gets the help she deserves. Her story sounds like mine. Since 13 years old I experienced horrible periods I'm 36 and finally had surgery because he listened to me.

[@CoCoCat1234]

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.

[@a.k.salazr]

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

[@a.k.salazr]

Yeah "very rare" - it's insane such a common condition in women is so ignored by medical professionals

[@whatever2206]

Omg thats criminal bruh, how comes no one treated your aunt for endometriosis so many years, its sickening

[@florinabn4669]

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

[@florinabn4669]

@@a.k.salazr same, been dismissed so manyctimes until I thought I was the problem. so sad and angering...

[@actualee123]

Thank youuu! ppl literally dont understand what we go through

[@st.a.r_]

I love her straight forward attitude❤️😂😂 Very informative thank you!

[@SDWife]

Just to reiterate, Endometriosis is NOT the Endometrium. The tissue is similar.

[@user-jl5lh9mq2b]

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.

[@Elizabeth-qe6lk]

Thank you for your talk. This issue is way underrated... what upsets me the most is how other women who do understand... and judge

[@millenium-media]

She did a really good job. Well done.

[@ChantelTGill]

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🤦🏾‍♀️😢

[@JillDinardo-mb6ii]

God bless you,dear heart. As a long time suffer ,back in the early 70's,I went through this from age 12 to 27,lost a child,took me years to get pregnant and keep my child. lost so many days of my life . A good caring Gynecologist will help you with options. Hope you find the help you need.Stay strong,you are not alone in this!

[@ggsvlogs8278]

Congratulations and thank you on a very direct, informative presentation that highlights a horrible, silent, incurable disease that is grossly underfunded & needs more awareness.

[@englishcoffeetalk5627]

Dear Alex, thank you for this 💛

[@danielladonato]

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.

[@deja19ans]

Loved your attitude, girl! Hope you are better now.

[@kudratsardana]

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.

[@sundragon13]

I have a diagnosis, and it's still not seen as a valid excuse 😢

[@cptmorningstar6437]

This made me feel so much better about my own Endo🥺

[@tijananikolic5064]

Amazing speach!

[@FeralDJ]

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.

[@XXXX-lq8yw]

Thank you for talking about it!

[@Psalms88]

Thank you for this !!! 💛💛

[@AprilMorgan-ev7tf]

Thank you so much.

[@Lemony1980]

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 ….

[@jenica9705]

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.

[@natalieweber39]

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. ;).

[@viktorijaignataviciute5407]

Which blood test @natalieweber93 ?

[@sundragon13]

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

[@CassMorris784]

@@viktorijaignataviciute5407 high levels of ca125 can be a marker for endometriosis, but also for ovarian cancer or cysts

[@flower_bone8122]

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.

[@kingkaleb7894]

I could imagine that MORE than 1 in 10 have endometriosis... and NOWADAYS you may only need 8 yrs to diagnose...

[@melanders556]

25 years it took for my diagnosis.

[@t.h.8475]

It has to be more women than that. Myself and my 2 daughters have it.

[@lauren23160]

I agree. I think the 10% is a low estimate due to so many women being gaslit.

[@t.h.8475]

@@lauren23160 ain't that right.

[@Weenpuncher]

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

[@whatever2206]

Even 10% is too much, its like diabetes

[@abarceno]

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 🤣

[@WarpaintWarrior]

Also here to say ENDOMETRIOSIS ALSO EXISTS IN MEN. It's not exclusively a uterus owners disease!

[@crystalnait455]

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

[@ilmioaccount-ce3gh]

Men do not have an endometrium. Ergo no endometriosis.

[@crisptomato9495]

Wow, I looked it up and you’re right. I had no idea, this was news to me!

[@ArtisteRel]

How.

[@rosariotorres5324]

A uterus owners disease? Excuse me but I am a woman. I will not be reduced down to my body parts.

[@nanablue3748]

💚💚💚

[@nomer440]

depressing much?

[@charlie88841]

❤❤❤