Endometriosis - The Mystery Disease of Women | Cécile Real | TEDxBinnenhof
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- Опубликовано: 28 июн 2024
- Endodiag - A non-invasive diagnosis tool for endometriosis: A disease that can cause pelvic pains and infertility.
Cécile is an experienced entrepreneur in the medical industry and management of start-ups. She co-founded her first start-up at the age of 25: Bioprofile; developing innovative solutions for arthritis. She also set up an international distribution network and integrated Bioprofile within a US SME, before being acquired by a larger company.
In 2011, Cecile co-founded Endodiag; specialized in endometriosis diagnosis. In 2012, she won the Cartier Women’s Initiative Award.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx
“There is nothing wrong and it’s probably in your head.”
I’ve heard this so many times.
Marnaynay me too
Me too. Sadly mainly from men like my teachers, my family and especially my father. I'm not diagnosed and going to makean appointment with my gynacologist as soon as possible.
I'm having my period at the moment and laying in bed almost vomiting constantly and feeling like dieing. The pain is almost not endurable (? Dont know if thats a word).
My three pregnancies were all miscarried. Life sucks
@@salem2725 sounds like Endometriosis to me, but always best to get symptoms like that checked. I've one recently been diagnosed, after suffering with pain and fatigue so severe I had to stop working and then I was only diagnosed after ending up in hospital with what was initially thought to be appendicitis. I'm 36 now and suffered all these years like so many, many women throughout the world. I have struggled with extreme period pain since I was about 15 and got fed up of being told that I have to put up with it, periods are painful, or that the pain in my legs, feet and hips and the constant exhaustion was chronic fatigue syndrome and nothing else. I may well have chronic fatigue syndrome too, but the gynae symptoms were ignored for the last 2 decades. I know I'm just one of many, but it makes me angry for all those other women who will have more years of being fobbed off to deal with before they get the treatment they need.
Same and I did private medical insurance and they removed it after so many years of suffering under the NHS
Good talk, I wonder how many in that room actually listened though and cared. I think the only ones who care are the ones who have it.
Sadly this is the same with most of illnesses and problems. People don't pay attention to things they personally don't have experience with. World wide apathy.
There is cure for it. I can help please reach out me.. reply your email/Facebook/mobile/telegram or any means of contact
@@raecetuber there is no cure. stop putting misinformation in these comments to scam people
@@slm613 There is. You call it scam when I charge any money. When I am giving free advice how come it become a scam? And I am doing this anonymously.. I would gain nothing from doing this
@@raecetuber your anonymity is all the more reason not to trust you lol. ENDO FAM - THE ONLY TREATMENT IS EXCISION SURGERY. THAT'S IT. you can take hormone supplementation and birth control to help alleviate some symptoms as well, but they do nothing to "clear up" your endo or anything similar. excision is the only treatment. you hear "ablation" and you run far away to a nancy's nook approved surgeon
I'm 22 and have had 3 endometriosis excision surgeries already. Unfortunately the disease is very under researched. Nice to see a Ted talk about it
Larilee
Larilee so sorry you go thru this I've been dealing with the pains for about 7 years and finally next week will have my first surgery.
Hi Larilee, I'm curious to ask - is this surgery the same as a Laparoscopy? And how long until you had to do the second and third surgeries?
Hi Guys I m from India,in short take ashokarisht aaurvedic medicine for all uterus and mensuration problem trust me it works like a magic ,I used Baidyanath brand,i m posting the same thing in many videos, because I know the pain but this medicine works,in allopathic medicine no permanent treatment
@@p.psahni2079 hy.... Actuly i m suffering from endometriosis last 5 yr.... M ek br surgery kra chuki hu.. But again i hav endometriosis.... Plz suggest me... If u hav any experience about it
Is this woman for real? A blood test to diagnose endometriosis? It took me 18 years to get a diagnosis. I still have my uterus but my career and human relations are ruined so here I am contemplating what to live for in my early thirties. Even if I could have a child there is no husband. Pain has taken over every day of my life so how could I possibly even go on a date? The various doctors I visited before didn't seem to care when all tests were always clear. Endo rarely shows up in tests or imaging. Causes an inflammation, internal bleeding, adhesions and scars but it doesn't show in your CRP. Eventually you're told you have mental issues which by that time, you do. This illness is hell.
veryangrypigeon I completely identify with you. I too have felt "ruined". I've lived in pain and isolation and my relationships suck! I have my uterus and 9 surgeries later I'm miserable. This is hell! The pain controls...so my good days I just want to be happy! Endo Sister I understand!!
Nine surgeries! Even just having one surgery takes such a toll on your body. I didn't get any pain relief from suergery either. The pain does control everything... Sometimes I feel like the only thing left to do is to raise awareness so that hopefully young girls who have just got their periods didn't have to end up going through all this. I wish so badly that they could get help earlier. If one day endo could really be diagnosed with a blood test then I'll eat my hat because that would change everything. I wish you all the best endo sister!!
Did yoh try Contraseptive tablets???
Yes! For ten years I was told it was all in my head. Now I have an actual diagnosis but the anxiety and emotional strain is still there, from bring told for 10 years that I was imagining it!
My heart is breaking reading your comment. Sending you all the love, wherever you are.
Having my first surgery this week. For years ive dealt with "phantom pains". Its gotten so bad that it hurts to eat to much, run, or any bouncing motion. There is a real need to research this more. Every Dr I talked to said I was fine and would send me home in so much pain that I could hardly move. Praying that other women going through this, find the help they need.
Shannon Critchlow how did your surgery go? I have the same problems as you plus ibs
Love to hear this actually brings tears to my eyes as this disease has affected my whole life for way too many years x
Jane Newbrook how did you recover??
Jane Newbrook same with me :(, endometriosis 4rth stage :(
Gyne Muro you never really do
It’s Christmas Day today and I’m stuck in bed, because of my intense pain. Everyone is out enjoying and I’m hidden away under a blanket and covered in heat pads. This video made me cry because even though she talked about a way to detect it, i never heard the word “cure” and that’s the scariest part of it all. I want nothing to do with this illness, I need help.
Endo its a symptom of an underactive thyroid (which is often never
confirmed by a TSH test - which is pretty much useless). Endo is caused
by estrogen dominance (ie insufficient progesterone) because without
adequate thyroid hormone you CAN NOT produce progesterone - full stop.
One requires the other. - the result is estrogen dominance. But nearly
all the time doctors are looking in the wrong place. Its in your neck,
not between your legs. Wife suffered for years (less when taking the
pill (because the pill is basically progesterone, so it basically
supplements your natural inability to produce it yourself)... Sorted out
her thyroid issues and basically doesn't any more. Had 7cm endometrioma
which experts said would never shrink... last measured at < 4cms.
No more clutching a pillow for 2-3 days a month and all the other
unpleasentaries. Too often, videos dont seem to address the actual
cause (or claim there is no cure... which is wrong they just havent
figured it out yet) . You need to support your thyroid. Your thyroid
could be underperforming for a number of different reasons from a
genuine TSH problem (but often not and therefore not detected by a TSH
test to familial disfunction (if your mother had hypo you most likely
will too (its to do with all the mitochondria being in the egg before
fertilisation - which is why these problems follow the female line) to
insufficient Iodine and ATP cofactors, To an inability to convert T4 to
T3, to too much reverse T3, to poor stomach acid (resulting in
autoimmune antibodies attacking your thyroid as collateral damage when
trying to deal with foreign proteins in the blood), to too great an
exposure to Chlorine, Fluorine and Bromine (all, iodine-like halogens
that block your cells iodine receptors), sometimes its too low
cholesterol (thats right ! - cholesterol is the foundation of hormone
production - you cant make hormones without cholesterol) - maybe its a
mixture of all of those..... Google, Dr David Brownstein, Dr Jorge
Flechas, the iodine project , Mark Starr (type 2 hypothyroidism).
Follow the clues. What do they prescribe to alleviate symptoms ? They
put you on the pill (progesterone) - They recommend a mirena coil
(synthetic progesterone) , they recommend Natural Progesterone cream
(again.. progesterone (obviously)) . The problem is a lack of
progesterone - VERY
often caused by the knock on effect of an (often solvable) thyroid
issue. Endometriosis is pretty much curable. I've seen it with my own
eyes.
I hope you have found some relief since you posted this comment. I have tried a lot of things with different degrees of success, but the things that have helped the most are acupuncture, herbs (both chinese herbs from my acupuncturist and western herbs from my ND), and pelvic floor physical therapy. I am finally at a point where I have the mental and physical energy to things on my own like diet and exercise that help somewhat as well. There are also things like visceral mobilization, myofascial release, and special massage for adhesions that I am beginning to look into. When I finally got a doctor who would listen to me, she didn't even know to suggest these things, but was willing to do referrals. They only way I got where I am is from supportive women in my life and online who were willing to educate and advocate.
Gug1970 i have been taking progsterone and made the symptoms worse tyroid came fine. What s the cure cannot take the pain I also have a 7 cm cyst that touches my intestines
It’s been 4 years, would love an update on this
Yes, I was wondering if any progress has been make. The in office blood test really peaked my interest.
@@raecetuber Please tell your mail all Needy can contact
@@raecetuber there is no cure. stop putting misinformation in these comments to scam people
My doctor told me last month that diagnosing endometriosis has to be done with surgery. If this is working, it hasn’t spread to the US.
@@jessicagates7652 same with the UK. A report came out recently showing that it still takes 7-9 years here for diagnosis.
22 years to diagnose, stage 4 endometriosis and just imagine what damage it did inside through those years. I wish a blood test could help with diagnosis in the future.
I'm 34 and after nearly a decade I was finally diagnosed. Ofcourse the diagnosis came after my surgery, not a moment before. Like other commentors I was thought of as dramartic or a complainer until the photos of my stage 4 endometriosis came back. I hope this blood scan can help with early diagnosis. However, I also hope that scientist can find help and relief for us women living this nightmare.
I don't understand though...what happens after a diagnosis because it interferes with work but no doctor would give disability or FMLA for example to protect you from being fired. I dont understand how we can function in society with this if we dont have a spouse. I also cant work long enough to get decent insurance or time off to take care of this with surgery. I lost my job and havent been able to keep a steady job because of too many sick/missed days of work. Its a viscious cycle and I don't know where to start. I been trying to get help since I was 16 kind of sucked it up and dealt with it because I got no help or accused of seeking attention & being dramatic. Having birth control thrown at me & no one listening that it doesnt help.....pain got unbearable at 26 seen 5 different gynos...JUST now heard a doctor throw up the word endo in 2019 when they couldn't enter my pelvis through my cervix after I cried my eyes out of frustration for someone to SEE whats going on inside me and being told to "just take bc" then he wanted to run a camera in me under anesthesia smh but by then I didnt feel comfortable with him cuz I had to BEG...then the pandemic happened and trying to get help with 6th doctor and appointment not until November! Ugh! But even then, if you get a diagnosis what does that do? Disability doesnt recognize endo, and jobs still penalize you for too many sick days.
@@HoneeyBee3did you find help
@@aobakwerapharing503 nope, still searching for help. In 2022 my gyno and I came to the conclusion I should seek help elsewhere after being forced to get 2 hormone alternatives and an IUD and those failing to help. He said "my best bet would be to visit a doctor with research facilities" like places that have schools attached who specialize in identifying anomalies and handeling tougher cases. Saw a doctor in March and she wanted me to try Orlisaa, which I am not too crazy about because it causes a lot of joint problems and bone loss. Waiting to reconnect with her again. But she did say it could be endometriosis or adenomyosis. If the orlissa doesnt help, then she thinks it's more than likely adenmyosis without having to cut into the body for a diagnosis. But still not talks of a plan or solutions there after so my life can just be normal and I can work again & have steady income. At this point I'm trying to find online work or a work around because I can't even keep a job with all the sick call ins. 😭
I am crying watching this 😔 I really want to get rid of this 😔
Doctor never want to fix it. If doctors can fix n all the women can get pregnant easy n they LL have no money. The more women have the problems , the more they can have money.
I suggest u to visit gyno and have ultrasound done. If there is problem get treated. Don't bear so much pain.
At age 15 I'm in so much pain due to my undiagnosed endometriosis that I'm finding it difficult to cope. it has taken me over a year to convince my parents that there is something seriously wrong and now I'm on the way to a diagnosis. I was told the same thing as so many other women "here's some pain medication, go home" and its so frustrating.
Please go to an endometriosis specialist, do not give up
I hope you have found some relief and a supportive doctor. Do some research on your own and talk to your doctor about pelvic floor therapy, acupuncture, myofascial release, and visceral mobilization as these therapies can do a lot to manage symptoms, may be covered by insurance, and some doctors are willing to do referrals but don't think to unless you ask.
I'm in the same spot currently laying in bed letting the endo win this round I'm not sure if you will see this since it was so long ago you commented but I get it I get feeling so completely alone I get the constant and overwhelming nonstop pain that makes brushing your teeth as difficult as running a 5k please know there are ppl out there like you ppl like me that get it and you aren't crazy anyway I hope you're doing better and have a support system you deserve it!
Hoping you’re doing well!
Good to know that some are working for Endometriosis.
Endo its a symptom of an underactive thyroid (which is often never confirmed by a TSH test - which is pretty much useless). Endo is caused by estrogen dominance because without adequate thyroid hormone you CAN NOT produce progesterone - the result is estrogen dominance. But nearly all the time doctors are looking in the wrong place. Its in your neck, not between your legs. Wife suffered for years (less when taking the pill (because the pill is basically progesterone, so it basically supplements your natural inability to produce it yourself)... Sorted out her thyroid issues and basically doesn't any more. Had 7cm endometrioma which experts said would never shrink... last measured at < 4cms. No more clutching a pillow for 2-3 days a month and all the other unpleasentaries. Too many videos talk about endo but dont actually address the real cause. (or claim there is no cure... which is BS, they just havent figured it out yet) .... Mirena coil mentioned in video releases.... you guessed it, synthetic progesterone. Google, Dr David Brownstein, Dr Jorge Flechas, the iodine project etc. Vit C works due to its clearing of sodium Iodine Symporters. Tumeric (actually curcumin) is fine, but why try and suppress the inflammation when you can stop it in the first place. Zinc and intestinal permiability are mentioned. This is because to generate stomach acid you require adequate zine , iodine and salt. If you have inadequate stomach acid you can not break down proteins into amino acids. If you eat bread, Gluten is not broken down and gets through the gut lining. Your immune system then (rightly) attacks the foreign proteins. The downside is that this often mistakenly attacks the thyroid too ... resulting in ... you guessed it. etc etc etc. Chlorine, Fluorine and Bromine also displace Iodine (they're all halogens) in the cells iodine receptor sites.... resulting in... you guessed it. Natural Progesterone is fine and it helps, but theres nothing like curing the problem itself.
1) Check that you are Hypothyroid by putting a mercury or alcohol thermometer in your armpit for about 10 minutes before you get out of bed on days 2 and 3 of your period. If you are below 36.6 degrees you are likely to be hypothyroid.
If you are hypothyroid then its likely this is the cause of your endometriosis. Everything we do from this point is an attempt to balance your hormones - Due to your hypothyroidism, you are very likely to be estrogen dominant ( meaning you do not have enough progesterone to balance the amount of estrogen in your body - I list the reasons in my other posts).
2) Start supplementing with selenium to protect your thyroid.
3) Start supplementing with iodine to ensure you have adequate amounts to generate thyroid hormone. Without adeqaute thyroid hormone you can not produce progesterone (which is what we need to balance the estrogen).
Start off slow with a single 6mg drop of lugols iodine in your cup of tea each day.
Slowly work up to 50mg per day (over the couse of the day) and then keep that up for about 2 months - but go easy and listen do your body. If you feel bad/jumpy/anxious then lower the dose back to 6mg).
I cant stress enough that you should read the thyroid books by Dr David Brownstein and Dr Mark Starr etc first. Dont just blindly take the advice of some person on the internet !
4) Remove/Lower your exposure to chemicals that affect the thyroid. The main ones are fluorine, chlorine, bromine. These are all halogens which displace iodine from your cells receptor sites. So, fluoride free toothdaste, Get a vitamin c shower filter if your water supply is chlorinated (chlorinated steam is much worse than just drinking chlorinated water)... additionally get a water filter that removes chlorine from your drinking water. Bromine is hard to avoid (its in fire retardants and some flour conditioners depending on where you live in the world. You might want to avoid eating bread/gluten. This is terrible for you and most people actually have an intolerance for it (albeit asymptomatic in most cases) - however the body can release antibodies to attack the foreign proteins if they get in your bloodstream - these will also accidentally damage your thyroid in an autoimmune response.
Try and use only natural products that do not contain "fragrance" , SLS and other estrogen mimics. Under no circumstances microwave your food in plastic containers and try and avoid canned foods (they are often lined with BPA (another estrogen mimic).
I think that those are the lowest hanging fruit when it comes to first steps in treating your endometriosis.
I think it might be easier if i get my wife to write a blog post on everything she did so that i can just post a link to that :)
Good Luck !
Gug 1970.....plz tell me how can i follow you... Do u have a youtube channel??????
There is no word for how to thank you.
And please request your wife to write a blog post. It will be immense help for us sufferers.
Thank you so much!! I have been searching for YEARS how to relieve my endo. It's gotten so bad I lost my job and now cant seem to keep a steady one for the past 3 years due to unbearable pain, vomitting, passing out etc..i miss too many days. Been begging since I was 29 for a hysterectomy and doctors refused (despite my issues) in case "I wanted to have kids." I am 33 years now, about to be 34 and still suffering every month with no help and no gyno appointment until November with my SIXTH doctor...and I had already saw her one time before smh.
I have searched for answers and always came back to anti-inflammatory diet and iodine. I mean, probably close to hundreds of hours of research and never knew why I needed that stuff other than iodine regulates estrogen due to estrogen dominance and anti-inflammatory diet will control the pain & inflammation. But this was the most comprehensive explanation I have ran across thus far! I didnt know why estrogen dominance was a thing other than nay hypo thyroid and needing iodione but iodione didnt seem to help in the form of fish, so I got some seamoss and Lugols 2% drops
Also, I learned that estrogen dominance works on the liver....estrogen buildup slowly damages the liver and overloads the thyroid so some may need to help the liver also (I can't remember why,not sure if estrogen is also processed in the liver?)...but things like Milk Thistle raise estrogen though its great for detoxing and healing the liver. I learned this the hard way. Had one of my worst periods last cycle after taking milk thistle for 2 weeks (about a week during and aftee ovulation)...my lining grew in thick and passed a lot of clots & tissue! I was taking sea moss though during ny cycle which has lots of iodione and it didnt help. My 2nd to last period wasnt so bad and probably one of my best...only 2 bad cramping spells for 2ish hours and I couldn't figure out why it was so easy compared to others!!! Well your post helped me make the connection I think! Last cycle I took just seamoss...the 2nd to last cycle I took seamoss with 2 drops of selenium!! It was about 120mcg & in the form of selenomethionine I believe. That was the only thing I did differently.
I read about the iodine protocol and how you needed selenium to synthesize iodine & protect the thyroid so I was initially taking that. But I stopped the selenium cuz I read that selenium toxicity can cause issues and I kept having achy joints for some reason (maybe coincidence and unrelated since Im still having it on and off since then)......but I figured it would be okay just doing the iodione in a natural food form and I wouldn't need selenium. But it seems the selenium was the key factor that helped with most of my pain. I guess it helped me use the iodione in my seamoss better.
Thank you SO MUCH for taking the time to write all this and sharing the kniwledge you learned! I will look into the topics you suggested to research further! Many blessings to you!!
@@HoneeyBee3 HI, really pleased you found it useful. IIRC, i think selenium is required for the conversion of T4 to T3 as well. Additionally you should add in vitamins B2 (Riboflavin) and B3 (niacin)) which are required for ATP production ( or buy "ATP Cofactors" which have it all in). My wife has always used Milk Thistle and you're absolutely correct about the livers role in estrogen clearing and how it can get overwhelmed. My wife used to suffer from carotanemia (which at one time was actually a diagnostic indicator for thyroid issues (before the not very helpful TSH test)) where the liver was so overwhelmed it could not convert/store beta carotine into vitamin A - she literally looked yellow. Its a self-fullfilling prophecy of estrogen overwhelming the liver and as a result the liver can't clear excess estrogen...... As far as iodine goes, I'd tend to stick to using Lugols iodine, then at least you can be sure of the regularity of the "dose".
Edit to add: Like anything , taking too much of it can cause toxicity, but you'd have to be pretty extreme to do it with selenium. I'd say just be sensible and supplement with it as "normal".
this is actually vary great that she is doing this. I actually found this video after my first surgery for my endometriosis, which I had a week ago. I have went to countless gynecologists and even more doctors. There has been times that I've went to the hospital over the excruciating pain and it wasn't only during my period. I'm only 21 and I've already started getting cysts from it as well. The first cyst that I'm aware of showed up when I was 16 and the Dr told me there was nothing he could do same with the next ten. The most recent automatically knew what it was and almost immediately had me scheduled for surgery and when in and burned off all of the endometriosis he could find via laparoscopy. He told me it can come back at any point and with a vengeance and there is only "treatments" all of the options of which he gave me are birth controls. Which if the endometriosis hasn't already affected my fertility I can't get pregnant for as long as I'm "treated" for it. The whole situation it messed up; there is nothing we can do about it until it is more popularly known and research is done. It would help a lot of women one day.
Like so many others in the comments I had tears watching this. This has been by far the most challenging journey I have been on. Physically, mentally, emotionally and financially!
It really bothered me that so many of the men in the room were too preoccupied with their phones and couldn't spare 7 minutes to understand the suffering of so many women. Stay strong beautiful women!
Glad tgey're talking about it. Sad to see they don't talk about how truly bad it can be outside fertility related issues. It can grow in any part of the body (lungs, eyes, anywhere, even if these areas are less common). It disrupts your digestive issues, causes inflammation everywhere which can cause other random issues such as perioditis. It fucks uo your inmune system. It causes chronic fatigue. The list goes on.
Thanks to Cecile Real for the job she does for all those women !
Very interesting and informative. I certainly see the potential here for improving the quality of life for the many women who have truly been suffering for years and even decades before receiving a proper diagnosis.
Finally, someone understands how painful it is and someone cares. I hope doctors will make a further research about this. Many women are suffering including me.
I love it that finally be able to get this information out I Suffered years of this I still have it worst health experience of my Life
I'm a sufferer of chronic back pain, but this sounds like absolute hell. I researched it, and it involves organs fusing together.
Jonathan QuantumJG my aunt had a hysterectomy for her endometriosis, but she’s always suffering from back pain. I only have back pain a week before and during my period.
They are called adhesions. A lapro surgery can help to remove it but it returns again.
t organs fusing thats right thats what one doctor told me thats why she doesnt want to do any surgery its a big mess.
Thank you so much for doing this work and raising awareness. Existing this way is a living nightmare.
Women working for women. It’s up to us to share our knowledge and be heard. I know I want women to not be in pain like myself, to go years with thinking we have a low pain tolerance or that we have just bad periods. This women makes me feel ok and strengthens my hope for the future.
I’m so angry with all the doctors who dismissed my pain or laughed at me. Why there are so many doctors have no sympathy in the US?
Hartelijk bedankt. I was surprised to see the Dutch involved in this effort. being Dutch myself, I am glad to see the whole world and my own country trying to help us with this excruciatingly painful disease.
Yes, exact same story. "Here take some pain meds and go home~ (understated 'you're crazy') We will no longer let a male or female Dr. excise or tell us there is nothing wrong.
I diagnosed myself of endo at the age of 14. It has been 11 years for me now. Nothing has gotten better, my disease has only gotten worse.
A couple years ago muy gynecologist told me my symptoms were due to anxiety, that I should visit a psychiatrist. Tere is a lot of ignorance of endometriosys even among doctors. 🥺
My doctor thought it was just my chronic pain condition and was surprised by my test results showing stage 4 Endo. I’m 38 and have been expressing concern for years. It took an emerg visit due to complications caused by endo to get doctors to start looking into it. And it still took a year and a half after that for an official diagnosis.
how did you get a diagnosis? i’m 16 but in so so much pain every month
@@jezabelgonzalez6781 try asking for a recommendation for a endometriosis doctor from your regular doctor
Excellent talk
Thank you for this video. I really hope these tests & meds work out. I have endo and am miserable. It has affected almost every aspect of my life.. not just a bad period week but a bad month every month that I have tried to have a child and cannot use birth control. I worry that if I ever manage to get pregnant I could pass this on. I hope a better future for us currently struggling with this disease & better response to it in the future generations.
Hy did you get pregnant do you have any tretment for managing the pain?
I’m 28 and I have stage 2 endometriosis. I can handle the painful and heavy periods but the thing that is soul crushing is the inability to conceive. Been trying for a long time and I finally had a laparoscopy in December to diagnose and treat endo. I’m hoping so much it will help us finally conceive.
I really hope you managed to conceive and you're hugging your child right now
I have severe pain and fatigue, nausea, headaches during my periods. Never knew about this disease. At 24 I’ve been diagnosed with endometriosis. My gynaecologist has prescribed dienogest because I’m my case we caught it early. The whole experience has led me to believe that we need to create more awareness about such diseases which we might attribute as a “bad period”.
Hey amroz I have been on this for a while, but facing some issues how has your experience been
Can we connect somehow
I remember going to my doctor for constipation and all he prescribed me was miralax... but one thing he did was prescribe my birth control which took the pain away.... 10 years later I have a different gynecologist who prescribed me birth control and antidepressants for my depression.. I have a good feeling about her.... she gave me a diagnosis and actually went into detail about it.
Thank you Cecile for being a voice for us!
Thanka tedx, nice to see you trying to spread the word.
My doctor and I are suspicious of endometriosis as I have a few symptoms. Extreme pain during periods, bowel movement pain, 2 month long period & dont know If I am fertile or not yet.. and I am terrified of surgery..
Ive only learned about adenomyosis when Im diagnosed with it. So sad
Today I just got to see this video but still wonder that it’s been 4 years this video got posted but still no blood test in the market to diagnose endometriosis. There is no early diagnosis of endometriosis. People are still unaware of this disease. I know very less has been done for this disease and a lot needs to be done.
The disease which truly affects your whole life and kills you everyday. 😢😢
And Still many people don’t know about this disease. Very sad ☹️
I have to take 9 pills in one days for me to go to work.The managers don't understand when you in pain.
Thank you for this video and the efforts behind the project. It's 2020 and I just checked the website. Unfortunately, this doesn't seem to have been developed yet. Until there's a cure, we may as well accept that it's a disease that needs to be managed. In the meantime, I can recommend fellow-sufferers a mindfulness yoga and meditation lifestyle for its management. I was diagnosed and operated on for a stage 4, over 10 years ago. I adopted this lifestyle and it has helped me live my life to the fullest. If it weren't for this 'dis'ease, I would not have learned how to live a life of 'ease'.
I had 1 surgery, I was told it comes back even worse each time so I stopped. I have been told I had this since age 12. Officially diagnosed at 16. Im almost 30 now. 😢
Excision?
I really hate people saying "it's just in your mind". Of course one cannot feel pain without a brain.
So true. Everything is in your mind if you really get down to it. Also I think it belies some sexism, I think they’d be more on it if it was male pain.
well said
Very good speech, thank you for raising awareness about this dreadful disease! I have heard that scientists are still working on this project-blood test which will determine if we had it or not as it is hereditary. Right now I suggest doing a Ca 125 blood test and seeing if you have growing tumors in your body and explorative laparoscopy with biopsy.
Hello, great talk! Are there any updates to this day please?
I had sever pain one day and the pain wouldn't go away and it kept getting worst and worst. I went to the emergency room in hope a dr could help me, they didn't believe me said i was having period pain. I was no where close having my period. I went a week later to the Gynecologist which then suggested i had endometriosis after the surgery it was confirmed. The thing that made me sad was when i was asking for the Dr in the emergency room for help they were laughing at me and saying that it was all in my head. They gave me a drip and i thought it was the answer but the next day the same pain returned after being humiliated at the DR i also thought it was just in my head.
It's always in our heads
Its not
I am 18 and I had a laparoscopy this past summer hopefully, no more. But always could be
I wonder if this test ever made it to market. We definitely don’t have that in the US.
Is this available? It's 2019
So is that blood test available now? It’s 2018.
no, and some of the other information was not exactly correct as we understand it
If you need to find out ,ask for a magnetic resonance, it's better then ecography. This is the tool for hidden endo, like mine👍👍
I have Endometriosis and started a support group on FB called "Endometriosis Online Support Group." Feel free to check it out!
Bethanie K I will check it out. I have it and it's bad
I was diagnosed with Stage 4, just the other day. I had no symptoms. I never used birth control through my 30s, and never became pregnant (but I didn't particularly care, because my husband and I didn't want children). Now I am 41, and completely sterile (it destroyed my fallopian tubes).
I need that blood test.where is it available?
What website did she mention please?
hello maam ..you have included really very nice information in your video .. my wife is having this endometriosis condition.. and she was really upset when she came to know about that .. she was so sad.. then finally she came in contact with planet ayurveda and now her condition is improving..
Can you please recommend me where is planet ayurveda bcz I am also suffering from it.
Will someone finally hear us! It’s so hard to deal with!😞
Im praying ya will find a cure soon.. my poor daughter needs help.
Since endometrial tissue is shed during a period, consisting of epithelial cells and collagen, it seems especially the loss of collagen would also put a strain on sulfur availability (sulfur is part of collagen even though I can't find where exactly but I think its the final crosslinking giving it structure)
I had painful periods in the evd it was a cyst and fibroid. Worth checking, it's only an ultrasound
I wanna learn more about this issue subject I myself been diagnosed and had an operation 2018, unfortunately it regrows again still pained during menstruations heavy clots bleeding...
Hi! How can we support your efforts? I would like to help.
THANK YOU SO MUCH :')Endometriosis means so much pain for most women - physically and espescially mentally, when women with endometriosis can not get pregnant. I am 24 and got my diagnosis a few months ago. During the operation (which is needed to detect endometriosis) sadly the operator had to remove most of my left ovary :''(( All the doctors i had seen before have waited too long until pursuing surgery. Finally the endometrial tissue in my pelvic area ( and on the ovary) was too large, to save the ovary (& part of the bladder & instenines). I still dont know if i will ever be able to have biological children. So thankful for that TEDtalk :D
Franzi Ko wat was the size?
Franzi Ko did you have had a pain before surgery??
And how many years it took
Aysha, do you mean the size of the cyst? I had multiple cysts they were around 5 - 6 cm some were smaller.
I had two cyst of 8cm and 4 cm on left and ryt ovary.. i waiting for approval from insurance company for surgery to proceed .. i wAnt to have children
Aysha, im so sorry. The insurance wont pay the removal? Thats awful. Where are u from? Here in germany they pay for everything except for the surgery with the ink where they see if your tubes are blocked or not. Hope mine are fine :( .. Cysts from the ovary can be removed by experienced surgeons. My surgeon was a butcher, and he inistited on doing a laparoskopy. I would never do laparoscpy again with a cyst on my ovary, but ask the surgeon to cut my belly open... Old school style . This helps the surgeon to have better view on your organs / the situs. I know recovery is longer. But i know pain... I would rather have a longer recovery and still have my ovary instead of loosing the ovary for a 'pretty scar' , faster recovery.
Have to add: another complication i had was, that my cysts and ovary were attached to my intestines. This is very often the case with endo. I think an open belly surgery would still have helped to save more tissue, especially with the unexperienced butcher-surgeon i had :/
I wonder what the latest is on the blood test.
How can anyone go for an early diagnosis??
I don't see my period because my uterus is removed, but I have diagnosed with endometriosis. I have a pain 24/7 like stomach cramps almost for 3 years every single day
*am filled with joy and happiness with my family today, because of fibroids my tubes was blocked for 5years after using Dr Omo herbal medicine I was able to shrinking my fibroid naturally, I just give birth to a boy🤱🏿last month here*❤️ Dr Omo herbal medicine work perfectly well he can also help you get rid of Endometriosis, Infections, Unblocked Tubes, Ovarian Cyst, Pcos, Lupus& Herpes Etc*
I want to participate in this awareness initiative...
Let's start a chain of our own and do it here on YT AND TIK TOK
If only. Not only destroys fertility but also the mind with its effects on hormones.
What is the website?
what is your website please. ive suffered so bad with this endometriosis, that was 2005, when a very intelligent gyne listens well to me after meeting two gyne doctors who dont believe in my symptoms. i also had several cysts on both ovaries. It was lasered but then the doctor told me not to menstruATE. i took birthcontrol pills to halt my period. Now my FSH was so high then my gyne confirmed that im menopause at age of 40yrs old.
I'm 27 and was suffering from endometriosis 2 yr ego .I had have contraceptive pills .and also changed my life styles,remove fast foods include fruits and vegetables and daily exercises. now I get vry relief from that pain. but I don't know whether I have endo or not.
Were you diagnosed?
How are you now?? I was asked to take contraceptive pills too but I'm scared of the side effects. Can you share your journey with me ??
Can anyone tell does this condition causes pain other than periods pain?? I suffer from abdominal pain 24*7 but couldnt be diagnosed with anything uptil .
But even with the diagnosis, there is no treatment! The pain will remain invalidating!
I've started a process with my doctor looking into endometriosis. For the past two years I have been getting cyclical sciatica, unable to walk and bloating, sore hips etc.
Have you tried herbal medications it worked for me clearing out my Endometriosis with no side effects whatsoever
Yeah, waited 10 years to get the actual diagnosis, all this while I was rolled over around saying its in my head, got through my first surgery just to find out that I already have stage 3 endometriosis affecting my bladder, uterus, bowel, and backbones
Have you tried herbal medications it worked for me clearing out my Endometriosis with no side effects whatsoever
I have endo ...first diagnose was cancer in colon by CT scan...but doct.said iam too young to have colon cancer...after surgery of my colon the histology was endo in colon...doctors said probably one month and my colon would not survive the adhesion made by my endo and i would have urgent operation....it was 4cm long and 1.5 cm thick...now iam on zoladex treatment...the only thing that scares me is that u never know when it will be back again...pls be aware that it can be life dangerous...it depends when it grows as mine endo made semi ileus in my colon....
Not a mystery ! Endo its a symptom of an underactive thyroid (which is often never
confirmed by a TSH test - which is pretty much useless). Endo is caused
by estrogen dominance (ie insufficient progesterone) because without
adequate thyroid hormone you CAN NOT produce progesterone - full stop.
One requires the other. - the result is estrogen dominance. But nearly
all the time doctors are looking in the wrong place. Its in your neck,
not between your legs. Wife suffered for years (less when taking the
pill (because the pill is basically progesterone, so it basically
supplements your natural inability to produce it yourself)... Sorted out
her thyroid issues and basically doesn't any more. Had 7cm endometrioma
which experts said would never shrink... last measured at < 4cms.
No more clutching a pillow for 2-3 days a month and all the other
unpleasentaries. Too often, videos dont seem to address the actual
cause (or claim there is no cure... which is wrong they just havent
figured it out yet) . You need to support your thyroid. Your thyroid
could be underperforming for a number of different reasons from a
genuine TSH problem (but often not and therefore not detected by a TSH
test to familial disfunction (if your mother had hypo you most likely
will too (its to do with all the mitochondria being in the egg before
fertilisation - which is why these problems follow the female line) to
insufficient Iodine and ATP cofactors, To an inability to convert T4 to
T3, to too much reverse T3, to poor stomach acid (resulting in
autoimmune antibodies attacking your thyroid as collateral damage when
trying to deal with foreign proteins in the blood), to too great an
exposure to Chlorine, Fluorine and Bromine (all, iodine-like halogens
that block your cells iodine receptors), sometimes its too low
cholesterol (thats right ! - cholesterol is the foundation of hormone
production - you cant make hormones without cholesterol) - maybe its a
mixture of all of those..... Google, Dr David Brownstein, Dr Jorge
Flechas, the iodine project , Mark Starr (type 2 hypothyroidism).
Follow the clues. What do they prescribe to alleviate symptoms ? They
put you on the pill (progesterone) - They recommend a mirena coil
(synthetic progesterone) , they recommend Natural Progesterone cream
(again.. progesterone (obviously)) . The problem is a lack of
progesterone - VERY
often caused by the knock on effect of an (often solvable) thyroid
issue. Endometriosis is pretty much curable. I've seen it with my own
eyes.
gug1970 when you say curable you mean without surgery?
Possible curable.. please do guide
Thanks for sharing, it gives hope 🙏
Thanks for this . we appreciate it
It gives really so much hope
the worst thing about this disease is unbearable pain
Me also I suffer with that disease what are the tretment
*am filled with joy and happiness with my family today, because of fibroids my tubes was blocked for 5years after using Dr Omo herbal medicine I was able to shrinking my fibroid naturally, I just give birth to a boy🤱🏿last month here*❤️ Dr Omo herbal medicine work perfectly well he can also help you get rid of Endometriosis, Infections, Unblocked Tubes, Ovarian Cyst, Pcos, Lupus& Herpes Etc*
It's been 4 years. Its 2021 now. Is there any info for the website she mentioned? How about the technology she mentioned?
*am filled with joy and happiness with my family today, because of fibroids my tubes was blocked for 5years after using Dr Omo herbal medicine I was able to shrinking my fibroid naturally, I just give birth to a boy🤱🏿last month here*❤️ Dr Omo herbal medicine work perfectly well he can also help you get rid of Endometriosis, Infections, Unblocked Tubes, Ovarian Cyst, Pcos, Lupus& Herpes Etc*
Have you tried herbal medications it worked for me clearing out my Endometriosis with no side effects whatsoever
endometriosis can cause infertility
I was very lucky to get diagnosed at 17- due to very painful periods and a good (female) doctor. I was scared for years (over a decade) that I was infertile, and this caused me great emotional distress. I had a lot of pain and issues from my endo, especially as my uterus was retro tilted and laid upon my bowels, which were covered with endo and so I had pain every time I had a bowel movement, which was about 9X a day due to the IBS that came along with my endo (and later i also got fibromyalgia, another common comorbid condition)- and which was usually diarrhea. I did not have issues getting pregnant, as one ovary was toast, but the other was just fine we found out!! For years after having my grrls I was better.. and then things got bad, pretty quickly.. I had fibroids too, and they weren't sure it was just fibroids, so I had surgery fast and had everything cervix on up lifted straight out of me, which entailed 55 staples all the way across my abdomen on the outside.. almost 3 years later (no cancer thank goodness as my husband had bladder cancer at the time) I am still having odd pains in my abdomen.. but am so tired of doctors I have decided that these are scar tissue pains and am leaving it at that. (am now 46, with 14 and 16 yo daughters).. thank you to the speaker for seeing a need and filling it!!!!!!!!!!!!!!!!!!!!
I am 15, my mum has endometriosis and her mum did so it runs the family unfortunately but I have been to so many doctors just wanting some help to know how bad it is and if I really do have it. but they give us a number and say call this number and you might get an appointment and its wrong because no one really cares about us or even remotley understands what we are going through its not acceptable.
It remains highly unknown to many people..but can be managed with proper eating habits!!
I had my 1st surgery on 11 August, 2020. My intestines are stick with all my uterus & left tube was embedded in endometrioma cyst, my small intestine was instructed, right had a simple cyst. I have stabbing pain from 2 years. In Pakistan, there is no research on it as well. Ill opt for homeopathic treatment for it.ive heard it works.
Hi, Maria.
I am curious if back pain is somehow related endometriosis?
Thank you
@@cherishedmoments-zhanxhyn9066 don't know I'm trying homeopathic treatment I suggest it to everyone. If the slow.thyroid n esr levels are treated well endo will go away. After two weeks of surgery I went into the same situation. Endometriotic cyst, instestinal inflammation. Pain n all.
@@cherishedmoments-zhanxhyn9066 my cyst grew super fast so I have backache n leg pain as well. Since I begin with homeopathic treatment a week ago. I'm feeling better.
@@mariamirza8259 what is esr levels????
hi I'm 23 n I have laproscopy but endro comes again it was a painful experience plz help us
Birth control was the only thing that helped my pain.. progesterone has less risk for blood clots than estrogen birth control
No! Birth control only helps with part of the pain,but the disease still remains.
I had my endometriotic cyst surgery last year n I have been given 2 luprodex injections now m waiting my periods to come which were stopped bcz of injection......I don't know what is going to b happen next weather cyst will develop again or not m just 20 yrs old n dr' s are saying that it can b cured only if you will have babies but I don't want to marry so early😔....CAN U PLEASE SUGGEST ME ANYTHING FOR MY BETTERMENT AND FOR CURATION OF ENDOMETRIOSIS
I've had success with the supplement, Endovan.
Endometriosis isn’t the endometrium. It is tissue similar to the endometrium that grows outside of the uterus. This misnomer is a major problem in the treatment and diagnosis of endometriosis.
Such gynec problems have been diagnosed and successfully treated thousands of years back through ayurveda. Ashokarishta and pushyanuga churna are standard and very effective medicines for endometriosis and excessive bleeding
im in us I have server endometriosis its already grown in my bladder its in my uterus I had surgery in 2009 an after that surgery I donit gave any periods an the Doctor Alexzander Klien did my surgery an my husband left me for someone else after the surgery now my dreams being a mother is far an never going to be in reach I even tried ivf u name it I did it so nowbwhat is there to do can anyone help I an now 41 :( :(
6812Angela I'm so sorry you're going through that. Maybe try another round of IVF? It doesn't always work the first time. Also, I'm not promoting surgery if you don't need it, but studies show that doing ivf right after excision surgery increases pregnancy chance.
Prof Jorg Keckstein in Austria , I HAD extensive advanced stage four with adenomyosis, Risk to life and organs. now two months post operation feeling amazing... Originally had multiple operations, felt worse afterwards. Had major surgery with Prof K, reconstruction of pelvis organs, removal of endo, extensive adhesions, cysts, polyp, etc. my energy levels are so high, not taken one pain tablet, I cannot recommended this surgeon enough. I was told I was worst case in Ireland,,. please be very careful who you get to operate, I wish I heard about Prof Kecksten years ago. ,There are only 8/10 advanced exxcison surgeons in the world. Cannot say where they all are, however some are in Austria, France, Hong Kong, Dubai, USA.
I also had a surgery 3 months ago and now I feel like brand new. How long it'll last I don't know, but let's enjoy for now.
@@Keepinitreal55 try yoga it will help you im 100%sure
Poison Ivy hi girl just following up on how you are doing after that surgery? Everything still good ?
We are 3 sisters having endometriosis and all of us undergone surgeries
Hey dear plzz help me
I had a catamenial pneumothorax. ( my endometriosis attaches to my diaphragm and right lung )..... I kept getting a collapsed lung every time I menstruated).....It’s insane . I just had my ovaries and Fallopian tubes removed. 6 chest tubes , 2 VATS procedures two weeks apart .
Vegan, vegan, vegan. Raw raw raw. Organuc organic I saw improvement in all my conditions and I have everything from bronchiectasis to hypothyroidism, to acid reflux, to ibs and others! Dream on if you want to put under control severe diseases like these with eating animals products
Known as the mothers daughters disease
I am from pakistan i have endometriosis both sides i have used many madicne but not effect plz tell me where i go for this blood test
Aray yaar you already have endometriois cysts.... Y test again that test is to diagnose.... Wunki baat chodo tum ealaj karwalo nahi tho problem badegi search for best treatment either homeopathic or ayurveda if you ignore cysts size will increase and you have to go for surgery
Hi @ saima qasir yeh badte hai if we dont take medicine , Mein bhi baar baar ultrasounds karke thak gayi .. gynae ke pass ek medicine recently introduce hui thi depending on person condition doc prescribe karte hai .. I am also endometriosis patient
@Asma Gillani shah Kya apko bhi endometriosis hy?mujhe severe hair loss hy is waja se Kya ye issue apke sath bhi hy?
I am suffering frm 10 year no baby from pakistan
@@aishkhan6240 Me too. I am also suffering from endometriosis and having infertility issues since 3 n half years. Experience pelvic pain up to 9 days of my periods. Beside that I have IBS and digestive issues.
okay
I have endometriosis.
I know your pain. Im so sorry. All they tell you more surgery.
Iodine deficiency,, liver function problem. Fasting and vit C infusions will cure it.