ראיון עם ניצן ברנשטיין : על מחלות שקופות, אנדומטריוזיס, קהילות ואקטיביזם

בפרק זה מתארחת ניצן ברנשטיין, אקטיביסטית, מרצה, עובדת סוציאלית קלינית, יזמת ויוצרת תוכן. עוסקת בשוויון מגדרי במערכת הבריאות, חווית המטופלת השקופה, עשייה נשית ובינוי קהילות אקטיביסטיות מזה 8 שנים, בין השאר כמייסדת שותפה ומנכ"לית שותפה לשעבר של עמותת אנדומטריוזיס ישראל. בפרק היא מספרת איך התגלגלה לאקטיביזם, כיצד ניתן למנף את כוחן של קהילות, ומהן מחלות שקופות. היא מספרת ומפרטת גם על אנדומטריוזיס, הפוגעת ב-1 מכל 10 נשים וכיצד משתנה והשתנה הטיפול בה בעקבות המאבק של המטופלות.

הצטרפו אלינו לשיחה מרתקת ומעשירה. ואם נושא המגדר, האקטיביזם והבריאות מדבר אליכן הקשיבו גם לפרק על נשים לגופן אליו אנחנו מתייחסים בפרק:

https://open.spotify.com/episode/7wxtxOJNwoC82hZMiOf3Un?si=HxV3LdSIQsWdDdeyd2RhXQ

Episode Transcript

(00:03):
Participation, all that's important
to know about patients' cooperation in changing the health system.

(00:30):
Yes, but they say it's a freedom movement, so we're part of a freedom movement,
and we're trying to return and record, because the topic is still important.
Maybe even more important.
Yes, yes, definitely. There are many relevant things in the subject of civil
activity that also connects to the activity of patients.

(00:51):
So tonight we have Nitzan Bernstein and she will introduce herself a little
bit more and we hope it will be interesting and that she will clear the way
for us and we will return to the regular clip. So welcome Nitzan. Thank you.
So let's introduce the guests who don't know you and a little bit about your activity.

(01:13):
Okay, so Nitzan Bernstein, I work as a professional clinical social worker and
I have been diagnosed with endometriosis since I was 12.
And basically, in recent years, I've been an activist for equality of gender
and health, and I'm the founder of the Endometriosis Israel Foundation.
Endometriosis Israel. Can you tell us a little bit about what endometriosis is?
Endometriosis is a chronic gynecological disease that affects 1 in 10 women

(01:36):
in puberty, which means that 1 in 10 women and young women, from even 9,
10, to 50 plus, Shabbat Shalom

(02:15):
Shabbat shalom.
In my opinion, the actual hard core of the treatment of patients,
as it should be, and the actual change that is made following it.
So, sorry for the interruption in the middle of your presentation.
I think I'm done, basically.

(02:37):
So, we talked a little bit before the podcast, and you talked about a clean disease.
Yes. And you said it's a concept. So, can you teach us a little bit what this
definition of a clean disease is?
And why does endometriosis suit her, or is it still suitable for her?
It's still suitable for her.
It's a pretty sociological concept, It's less of a medical world,
which basically describes a group of diseases that affect only women or mostly women.

(03:02):
What defines them is, beyond the fact that they don't look like external eyes,
like many other diseases, many of the chronic diseases, you can't see them from
an external perspective.
But in addition to that, it's a disease that's closed to the system,
it's closed to the public. Wow.

(03:48):
There are women who have also been waiting for 20-30 years.
And this is not only in Israel, but all over the world, even in countries where
endometriosis patients have already started a little while ago.
The change is still so slow, even 7-8 years, say, in England.
So even today, which I just enjoyed, here, it's no longer a disease.

(04:11):
So even today, if someone is suffering, they can spend 7 years in a short time
until they are diagnosed.
So we did it in the endometriosis unit, which I was the director of a partnership with,
and now there's a Verteimer that runs it, we did a large endo cycle there,
by the way, we were the first in Israel to put a lid on it and collect data on endometriosis.

(04:34):
Only the endometriosis unit did it, and in a roundabout way,
and we collected over 2,000 answers.
And we really found out that the limit is 11 years, but we also found out that
since the start of the activity, the limit is decreasing slowly.
That is, today it takes fewer years to identify, and there are many women who
are already considered young or soldiers.
Identification, which almost never happened before. By the way,

(04:56):
Alona Sar identified on Instagram, if I'm not mistaken. There are many identified.
Each one of us has a kind of... Historic identification.
No, it's really like that. She told, for those who don't know the story,
she told a story and a story and
a story a few times about how much she suffers when she's in her prime,
and just got a sea of information about whether she checked endometriosis,

(05:18):
and she went to check, and she was diagnosed as a patient.
Even Karen Shacham, who is another influencer on Instagram this week,
wrote that she was diagnosed with endometriosis, and for years we've been looking
at her story and writing to her, because really today there's a lot,
there's a lot of awareness.

(05:57):
I don't know.
Endometriosis. שכאבים

(06:34):
של נשים ובפרט כאבים שקשורים לבסת ולתהליכים האלו נוטים להתעכל בזלזול מול המערכת הרפואית.
אם זה לכולן יש בסת, תתמודדים. לכולנו כואב. לכולנו כואב. תתמודדים.
Lekulano kohev, ken, im ze harbe pe'ami magav, harbe yoter mi rof'ot,

(06:55):
she gam la'en yashveset ma'asher rofim, aval be'ofen klali,
v'ni m'daberet al ze harbe, she ha'olam ha'refui, v'ha'marechet ha'refuit,
be'meshech alfei shanim, kvar mi yamei hippokrates ve'ad ayom,
mafla nashim b'chol minei drachim,
v'machzika ba'arbei me'ot deyot kdumot klap'e nashim, she kmo rov ha'deot ha'kdumot,
hem lo be'muda'ut, and doctors and nurses don't understand that they're acting in this thing.

(07:19):
But if it takes 11 years to identify a disease that is one of the most common,
in the world of gynecology and one of the most common among women,
it's impossible to assess it only by their ability to identify it.
It's possible to assess it for most of these women who don't listen.
Most of these women don't take them seriously.
And most of these women identify with such mental disorders and such.

(07:39):
And these things were proven in the secret. A woman comes and says,
very, very painful. I can't move during days of... And what?
They send her to a psychiatrist? So, over 50% of the patients have their symptoms
caused by psychological factors. Like fever?
From fever to... Hysteria? Yes, it's hysteria.

(08:04):
There's a really interesting article that really covers the history of endometriosis
and shows how in many cases what they thought They thought it was hysteria. It was endometriosis.
Many times it was those women who were very angry with them.
The system didn't take it that deep.
And they just tested them with some kind of mental test or something else.

(08:24):
So once they were hospitalized in a crazy hospital. And they were studying them
in front of a lot of doctors.
And today they just tell them to go and get a T-Rex. Or in general,
a lot of things related to your life.
We have women who of course are told to vomit. But there are also women who
were told to do more and less, and to change their partner, and to drink more

(08:45):
water, and to change their job.
Everything except listening to the symptoms, which really, as you said,
Alon Assar, every woman with endometriosis, is different from a kilometer away
from another woman with endometriosis. The symptoms are not so complex.
Really, it's pretty easy to understand at some point.
And yet, I even heard women doctors who don't know the disease.

(09:05):
In addition to a clinical diagnosis, that is, based on the symptoms,
there are specific tests that confirm it.
That is, is there a biological or diagnostic way to say for sure or is it a clinical diagnosis?
So, endometriosis is divided into several types. In the ground type,
it's a clinical diagnosis until surgery is performed, and in surgery,

(09:26):
an histological diagnosis is performed.
And in endo, which is chronic and deep, it can be identified mostly by MRI or ultrasound.
And today, there's a new test in the market, which is a microRNA test,
a ROC test, which really came to Israel last year, and it's the biggest development
in treatment and endometriosis in the last 50 years, but it's still very, very expensive.

(09:48):
So it's not an invitation in the market, but the moment it enters the world
to a more expensive price, it will be a serious game changer.
Because today, until you do a surgery, a lot of people say, it's not for you,
but unfortunately, and I really know from personal source, There are a lot of
friends who are endometriosis experts, and I talk to them.
We hear about doctors who, even if they see in their eyes that there is endometriosis

(10:12):
in the body, they still think that it's a mysterious disease that causes symptoms.
That is, you can hold on to this position, it doesn't matter what you see.
That is, biology doesn't matter to them. Like, histology doesn't matter to them. Right.
And many times, even when you've already undergone surgery, and many women are
waiting for surgery, usually the only disease is when you leave surgery And you said something.

(10:33):
Tell me you said something. Because so many years ago,
they tell you you're a You know you're a.

(11:05):
No, I'm sorry. I wanted to ask, like...
How did you get to this point where I ask you, why you?
Not from the place where I'm shaking in it, but from the place to understand.
Like, why did you decide to get up and say, okay, something here needs to change.
And I'm the one who's going to change.

(11:25):
I even want to add to that. No, I mean, why you?
That's how it came out. In my eyes, the Endometriosis Foundation in Israel and
the community of people who are still in front of it, It can really become a
study case for how to control patients in this case.
There are a few more organizations that do this, but not many.

(11:48):
It's impossible to say that all the organizations in Israel...
It reminds me of what happened, in a different way, because we did believe,
what happened to the cancer of the breast cancer 50 years ago.
That is, at the end of the 70s, it actually became something that we understand is real and happening.

(12:28):
It's like a walk in the park comparing to endometriosis.
But he wasn't there. That's what I want to say. Right, but he was still...
I don't know exactly what that is, but I can say that in the end,
in the world of oncology, the way he broke was a little bit easier.

(12:51):
In the end, you see a needle and you have to pull it out. The way he broke, in the sense of...
I'm looking at it in the sense of consciousness. Right, completely. This thing.
It reminds me of it, not in a place of... Of importance. Not as this or that, but as a process.
And then, Michelle, you woke up in the morning and said, what?
So it was a very, very gradual process, which really...

(13:14):
I'm a very intuitive person. There was no moment when I woke up and said,
I'm going to make a change. I will do... Really not.
I got confused. Actually, I was diagnosed at the age of 26, and I suffered the
first two years of pain. And if every day, I mean, my life really turned upside
down if I couldn't do anything after a year of this situation,
including surgery, I quit my job.

(13:36):
And I decided to go out to some kind of healing process, to try to go to the
north, to find a little quiet.
Everyone says it's stress, it's stress. Maybe if I do something, it will help.
And I really understood, believed, excuse me, in the alternative world and my
health, so I tried. And I actually created some vacuum in my life that I didn't

(13:57):
work in. I'm a social worker. I didn't work.
And exactly, really, in some cosmic way, I became the manager of the sick community.
Exactly when I moved to the north.
It's a community that I had been in for a year, maybe a year or more,
as a nurse, like everyone else.
And she saved my life, really. I mean, I really always tell her that it was

(14:19):
the place that kept my sanity.
The place from which I received all the information I needed.
The place where I felt not alone, not alone, not confused, I felt understood,
I felt eaten, and just by chance I became the manager,
and I took it with all my strength, because I didn't have anything else to do,
and because I also had a lot of fun, and I've been loving this world for years.

(14:41):
I don't even know who founded the group, I don't know, it was in 2010,
I became a manager in 2015.
And how many of these friends were there? When I joined, we were 300.
When I became the manager, I think we were 800-900. Today we are 14,000.
So I managed the community for seven years.
It started alone, and then it grew, and we already had a team,

(15:04):
and then we established the organization, and it was a part.
But the first thing that actually led me to what I did was to manage the community.
It gave me, first, the opportunity to find meaning in my suffering.
And it was very, very important to me. And since then, I've always loved to
write, to express my feelings, to express knowledge.
And during this period that I lived in the north, I noticed that I became some

(15:28):
kind of a source of information about the disease, because I was quite obsessed
to find something that could help me.
I was in great pain, I read a lot, I have English, so I also read a lot of things
in English that weren't so much known in Israel.
And I read a lot of stories about diseases. and everything started to get to
me to some understanding that there's some space here that needs to be filled.

(15:50):
That had died in the past, it's no longer active, and they won't access all
the information that I think is important.
But it was some kind of combination of a lot of information,
and I think the most important thing is to overcome some kind of anger within
me, anger not only of what I went through, because I, in my case,
didn't go through the cracks of the gaslighting and lack of faith,

(16:12):
I just didn't go to doctors.
But I read a lot of stories of women who went through it.
From your job as a nurse. Yes, I read thousands of stories, and I saw,
my eyes closed, every new day, people who just roll them from all the steps, who shake them,
who are violent towards them within the organization, even if it's verbal,

(16:33):
and if it's physical, and if it's sexual.
I saw stories that just scared me.
And then it really went round and round. I built a website, which was the largest
website on endo in Israel.
It started from a personal project of mine, to find something to do with myself
during the process of graduation and research.
So you didn't go out of your way, out of your mind? Not at all.
I, Nitzan, the social worker, will change the situation of endo diseases in Israel.

(16:58):
But I hear in your story something that I hear from a lot of people who become
activists in terms of their disease.
It's a mess on the system. Yes. And at some point, to start reading,
to start learning, for example, what's going on.
At the first stage, it's through a community, but then it expanded,

(17:18):
and actually became a focus of knowledge.
So you're a kind of patient expert, already quite quickly.
So it was the first thing that I was, I think.
It's the first thing of the mental health system, because the moment you read
and got a lot of power from the knowledge you've gained, Yes.

(17:42):
Let's look at it as a half-eye of a researcher, because I don't know the experience
personally, and I also don't enter groups like these, where gender reality is not relevant.
Most of the chances are that you weren't inspired. We wouldn't have inspired
you if you were an attempt.
If you know, there are communities that I established for patients,
and I'm not a patient. I'm left in front as a passive viewer, but I'm in front.
I'm not a patient in a specific disease. Yes.

(18:04):
So it's very interesting to hear what you're telling, and I'm kind of thinking
of stories of people who have done similar things.
Right. If only for myself, and if later as activists in the name of a whole community.
I think that for me, the shift was, I didn't perceive myself as an activist,
and in general I was a social worker, but I was a private person.

(18:26):
And I always knew that I was a justice fighter, but I never had any demands
to be something, to lead a movement, to make a big change.
And at some point in that half year that I lived in the north and I had a medical
condition on my face and I left the community, I got involved in some kind of
situation at the Women's Health Center.
A friend tried to hold a debate on it there and she wasn't in Israel and they

(18:49):
announced it to her at the last minute and I got there.
And I remember that I really got excited and wrote a lot, I also collected information
from the community and I also wrote about my story. And that was,
for me, the moment of change, when I understood what kind of power this has.
I mean, I saw how... What is this for the community? To name everything.
To name everything, but everything that is based.

(19:11):
That has numbers and data and support for a large community.
And it has a personal story. And there was something there that I really remember.
The 20-30 people who were in the room, stopped in silence and listened for a few minutes.
And you see something change in their faces and you see that they begin to understand

(19:34):
and it was a complete presentation on endo of a doctor but they weren't used
to hearing a speaking patient it didn't happen it didn't happen to them the
responsibility of all the patients yes basically,
we just didn't have a place to hear everything and I really remember that I left there Shalom.

(20:07):
I later wrote this poem, I published it in this, I made a presentation,
I published it in the group.
It was like there was a place to start encouraging them to be part of this thing.
It was a kind of a club. Yes. Just encouraging and encouraging the thing.
Yes, and they were part of it in some way, and little by little they also started.
Exactly. The story of the importance in the eyes of the community and the organization

(20:28):
is that in the end it was not Nitzan and today Aya leading it alone, alone,
but there is a really crazy group of women who made a change together with him.
Not just by pushing his back.
We couldn't have done it without this awakening.
I think the awakening was related to the fact that it's a female disease and very, very...

(20:50):
From my point of view, we're part of the feminist movement. That's how I grasped
it and that's how I carried this change.
I always think about our chapter, the chapter of the book It's a book about
women's bodies, which is like a starting point, and because of that I went back to the beginning.
It was our first chapter, wasn't it? No, one of the first.
One of the first chapters is a book that was written by women precisely because

(21:14):
of this feeling in general.
The book in Israel or the book in... The original book, in 1999.
When women actually understood in a deeper way, when they were not deceived
or, more correctly, decided to do something about this and change it,
that is, to make a move about this thing.
Yes. I want to ask two things. One, at what point, because you just talked about

(21:35):
the women's health center, at what point did the medical institution notice
and start listening to you?
Because I know that at some point there were cooperation and the institution
started to cooperate with you.
And two, how much has the change in the sociological structure of the gynecological
profession, which has become more female, changed in your hands?
Or is it because the institution started to get to know you a little more and

(21:59):
to relate more to the thing?
The truth is no. It's not really felt in the field of endometriosis.
All the experts today, all the endometriosis centers are still men.
And they're mostly wonderful men
who just work with us in a full-fledged cooperation from the beginning.
I think what made the difference is really the entry of more and more good people.

(22:23):
Not women, by the way. Shalom.

(23:05):
And I remember Dr. Uri Dior, who is the director of the Endometriosis Center
at ADASA, he was at a fellowship in Australia,
and he sent me an email and he told me, I'm going back to Israel and I'm going
to set up the Endometriosis Center at ADASA, and I'd love to talk to you and
hear from you what you need.
And it was the first time it happened like this. To this day we are good friends, it's so moving.

(23:27):
And we had an hour of meeting and he just listened. He just wanted to know what
we needed. How simple and how, to our regret, not very forgetful. Really not beautiful.
And what came out of it, let's say, what is it in Hadassah that you could put
on your finger, that it's clear to you that it comes from this common word?
I just, first of all, think that it's not that they suggest something else,

(23:48):
there are also budget limitations.
He really asked about the issue of complete medicine, about emotional needs,
but obviously, first of all, there is a good, difficult, empathic team,
and they worked all the time in cooperation, full with us.
For example, there was some stage where Dr. Dior organized a conference,
a medical endometriosis conference
for doctors, and he asked me to give a lecture. That was the first time.

(24:13):
Very incomprehensible. Yes, it was one of the scary things I did in my life.
The whole audience, mostly male doctors, and I talked to the next lecture,
what do the patients need from you, the doctors?
And I talked there, I talked there about painful wounds, on sexual harm,
on trauma-conscious medicine, on the feelings we have in the system,

(24:33):
and it was very difficult and scary.
They were a bit shocked, the doctors, I'm aware of. But a year...
What were the responses?
So many responses were very positive, but they came like... I don't know if
I can... Don't say it in names.
No, because there's some doctor who's known today that he's sexually abused.

(24:55):
It's already out on the media, And I remember him coming and pressing my hand
with heat and saying, All the honor.
So not all of it I took. I mean, it's a complicated thing, but I remember.
Et ha, shuv, et ha tchusha azot, של, הם עכשיו יושבים ומקשיבים.
וגם אם זה מעצבן אותם, וגם אם מישהו אמר מהקהל, והוא אמר, סיפרו לאחר כך חברות,
מזאת הפמיניסטית הזאת, שבה, מה זה קשור?

(25:17):
זה, זה נשאר איתם. ועשיתי את ההרצאה הזאת, שוב, מאז כמה פעמים.
שנה אחרי, אז עשיתי אותה בכנס, שנקרא, רפואת נשים בגובה העיניים, גם בהדסה.
ואז, זה היה הדבר הכי רגיל בעולם. All the presentations there were about trauma-conscious
medicine, about feminism and gender, and only a year later, I think that's when
he said, I want you here, your voice is important.

(25:40):
He did amazing modeling for many other doctors, and today, in almost every medical
conference, there are voices, at least in the context of endometriosis.
Yes, I wanted to say that. I'm very proud.
Endometriosis. We don't give, they don't give it, So let's go back to the beginning,
if you don't agree with us, nothing is for us without us, it needs to be basic.

(26:26):
And they open it up in a way that surprises me every time. How far is the word really, really there?
And how far are they willing to fight? I want to understand how that happened.
I mean, what was in this community that caused them to go out?
Was it a great anger? Was it a great pain?
Did you do any conscious actions to help community members stop being embarrassed and start fighting?

(26:52):
Wow, that's a lot of things. I'm trying to think where to start.
I think the first thing the community, from my point of view in those years, was sacred.
I invested great efforts. I also come from the world of social work,
so secret, intimacy, safe space, empathy, without the sacrifice.
First of all, the basic conditions were like that, that you get a blow,

(27:13):
that you know you're in a safe place.
For many of us, it was the first safe place that
you can talk about what's happening to you and that people will simply believe
you and love you and will tell you that it's not your fault that until today
no one told you and it's not your fault that they told you to take a Cipralex
or that the doctor laughed at you or pushed you. I mean, there was some kind of shift.

(27:39):
I call it the political issue, not me, maybe the feminist calls it that,
but I always say this in my lectures,
that I try to remember and remind when I go into the doctor's office that I'm
part of a long social context for many years and therefore when I experience
something that's not related to me in particular,
it's much wider and that gives a feeling of power it gives a feeling of a little control of,

(28:04):
it's not that I'm hysterical it's not that I'm a liar it's not that I'm causing
problems here but there are some old ideas here that are designed for me as
another woman that's lost and I can resume everything because I'm aware this
awareness This identity,
this political identity, gave a lot of women the confidence in themselves once again.

(28:28):
The feeling that I no longer buy these stories that say, I will fight for the
fact that you, or you, I have to say, it's really not just men doctors,
I will fight for the fact that you listen to me, I know that I am not the problem.
I mean, you're saying that from a personal point of view, my strength,
that I'm right, that I know what's right for me, against that particular doctor,

(28:51):
created that same movement?
It's from the understanding that there's something here that's valuable,
complex, and solid, that's not private.
It's not the soul of a specific woman. By the way, it's not the soul of a specific
therapist. Really not, not at all. I don't know.

(29:13):
Yes.

(29:44):
I understand today that it's actually part of a feminist treatment.
Today, when we do a feminist social work, for example, we talk about the connection
between what you experience in your private life to power mechanisms, to oppression.
Which is basically everything I did without paying attention,
me and my friends, and I think that slowly more and more such voices of women

(30:04):
came up, that it wasn't just that I wasn't ready to buy this piece of shit that
I was in, a fake magazine,
but I didn't need to buy it anymore, that I'm supposed to laugh now and suffer
without anyone knowing, I just have a disease that's related to the vest,
because if you go to the office with a tampon wrapped around your hand,
because they don't talk about the vest, So we went through, and maybe it's also

(30:27):
modeling, because I did a lot of it,
but I'm not the only one who just wrote a lot about it on social media.
I think that social media was generally the job, because at the end of the day,
the community started in front of you, which was also a group of patients who
were in front of you and were crying.
I think this element of social media,

(30:48):
not only within the community, but also outside of it, Shabbat Shalom.

(31:09):
That is to say, think that when we did the survey, we found that about 40 or 50%.
Received or heard for the first time about the disease, not from a medical source,
but from social media, or from some Google search, or from some of the group that jumped on them.
So this thing had an amazing effect, that every story like this creates amazing emotions.

(31:34):
And each one of them, someone else is judged by her right, and in the end,
her mother tells her, and a lot of people really said to themselves,
if I get a test, I'm also going to write a post, because this post saved me.
And it created a community that knows how much suffering it has gone through,
and wants others not to go through it as well.
There was a lot of feeling of mutual respect, of such a, we're here for everyone,

(31:57):
to the point where the guard is in pain, we'll tell her why,
because we don't want her to think after 20 years, like we've been waiting,
we also know the instructions.
And in general, for me, my strength is really the social, the writing,
the expression of this thing.
And to me, it's a huge part of our success, because the community is all digital.

(32:20):
It was only on Facebook now, and there are also WhatsApp communities,
Instagram communities, Telegram communities, Google Group communities in Haredi.
But everything is intended, because it's also women who are very difficult for
them to get out of the house.
Very, very, very painful. So there's something...
It was a bubble for us. Now, there was a forum for endometriosis before that, not in my time.
I still remember the forum. So there was a forum for endometriosis that was

(32:44):
really very significant once,
but it remained within these categories of some small forum,
and it also did not become a movement for action, a pro-active movement of what
are we doing with all this pain?
And I think that's what was special in the community of Endometriosis Israel,
that really, everyone who told their story, so either she published it in the

(33:06):
group or I published it in a different agency in such a way, look,
another one went out on the road and did a great service for all of us and it
makes some kind of impact the fog is slowly disappearing and then you can translate it,
beyond the personal meeting and the important tests, let's say there is more

(33:28):
research in Israel I wanted to say that it's a hard question.
Because beyond the whole movement
that was created, it also comes with expression in more treatments.
After all, this is part of the story of what we call, but yes, there is a change.

(33:51):
Look, again, I also want to say, we are part of this movement. It's pretty amazing.
This thing happened all over the world in parallel, this awakening of like patients in endometriosis.
And it will also happen in the change of the budget in the increase of the budget
in the NIH in the United States and there are a few non-hormonal treatments
now in the field, in development, which is.

(34:12):
We still don't have that. Until today, everything was hormonal to us,
and that's why it's very, very exciting, this Rho test.
That is, there are global implications for it. In Israel, I think,
first, it was most reflected in the endometriosis center.
The demand, and the request, and the diagnosis, and as sometimes doctors say, it's a trend.
So no, it's not a trend. One in ten women will eventually get the diagnosis,

(34:35):
but there will be a need. But it's not just the diagnosis.
In the end, when there's a center, it's also treatment that's more holistic.
It's more natural. Right, when it's a health center, and today we also have
a lot of awareness, and again, together with the doctors, we didn't have to
convince them very much. They know that they don't have much to suggest.
So they immediately included in many of the centers Chinese medicine,
blood test, nutrition, endo-yoga, like things that are really a crazy opening

(35:00):
that doesn't always exist.
Exactly, that is not recognized in a medical field. Because they know that they
don't have anything to suggest, and many of them, most of them,
are members of Endo Day in Israel.
They are people who are really in daily contact with us as a group and also
with hospitals, and they hear, and they are open, and they understand that things
are working, and there is no reason to oppose it.
Medical cannabis, like all these things, they are very unusual and very normal

(35:24):
in the community, because they know that there is not much to suggest.
I don't know.

(35:52):
A community effort to tell your story, to publish it, we will later turn it
into graphics, we will update it, you will share it.
Many of our things were such campaigns of awareness.
With the goal of what? That National Security will recognize it?
So the specific goal until then was that we actually received a meeting with
Pigler, the first thing we did when we opened the organization was National

(36:13):
Security, we held a meeting with him.
And we were given all kinds of things that some of them were true and some of them weren't.
And the main thing was that it was training for doctors of the National Security Service.
That is to say, they learned what it was. From the medical teams.
Yes, because they are insidious.
There are no gynecologists in the National Security Service.
There is perhaps one gynecologist in the National Security Service in all of Israel.
So they don't know what endometriosis is. They are insidious,

(36:34):
and gynecologists don't necessarily know. In short, training.
And it was done and done and didn't happen and didn't happen.
And then we said, enough, so we went out on some campaign. And we launched the
campaign. And what happened in the end? There were lessons.
We made lessons. I remember once I went to a meeting of medical organizations.

(36:54):
Where most of them were older people. There's something special about this organization.
It's for young women. We're very connected to social. We're very creative.
We're not limited to a very traditional opinion. And I remember I was a little surprised.
From such a very, very sad opinion.
And I saw that this is our forte as women we established this organization when we were 29,

(37:18):
28 we came from the world of social work, so we had both me and Aya,
we met in the library we had this traditional knowledge but there was a lot
of creativity and openness to try all kinds of things,
and little by little it became a community of 100 volunteers.

(37:39):
From the active volunteers. I'm very much connected to what we talked about
about Chalas, which is a youth organization that also started online.
And this global awareness connects me back to what you said about social media.
In my opinion, the fact that social media have spread all over the world,
allows this liberation or this removal from the darkness of the light,

(38:00):
from some suffering that no one talked about.
Or even if they talked about it, the proof of the talk was much smaller,
because they talked about it with two women, three women.
I add to that, 250, 300, 5,000.
Think that once you were dependent on whether a lawyer wanted to give you the opportunity to speak.
Now you write a post, it becomes viral, and it doesn't matter because it becomes

(38:22):
viral, but you have a lot more power.
I also want to add to this fact that young people eventually grew up in a world
where their sense of justice, as it is called, is much more developed in the medical world as well.
I mean, I don't think, it happened also in older groups,
which we won't say that it didn't, but there's something in the fact that the

(38:43):
young woman who very sees the importance of her rights in other places that
are not the world of health that when you were caught in it,
you and the other women in the,
community, when you were caught in it suddenly in the world of health and you
were caught in doctors who did you a favor, doctors who made you sick,
it stood against you and you didn't agree to give up.
I'm not sure that it's like that. I wasn't such a person I wasn't an activist

(39:07):
before that, as you said.
Yes, but what? You were with a sense of justice. I was with a sense of justice,
but I think that... Or as they say, a rational one. Rational, yes.
Dramatic. Yes, exactly. And I think that one of the things that does the...
Like, maybe to clarify it, in my eyes, it's also my point of view,
my character, but it's also this generation that doesn't deal with tolerance in such a serious way.

(39:32):
Like, excuse me, you're not giving us the incentive We'll change it.
You give us our service, not the other way around. But it's something that comes out of the way.
Because when you look at the world of medicine, the world of health.
It's exactly the opposite.
Confidence in the world of health, all the time they say, it was God, there's no such thing.
And it's also, I think, a change that couldn't have happened 50 years ago, or even 20 years ago.

(39:56):
He needed this generation to get him to act.
I think it's also a generation, and I won't give up on you, And then no one, no one,
It's based on technology. I think that the same thing, you brought up this thing,
the ability to connect, because in fact, even though it's Facebook and it's
like it's still so distant, so there's a little less distance.

(40:20):
It's not the same thing as coming to meet someone in the room and telling him,
coming to meet someone... Even physically coming to meet someone,
it's complicated, for sure.
So I think that this possibility and the ability to absorb power from so many
people that you don't actually know, or you don't know, Yes.

(41:05):
מקבלות התייחסות, כי פתאום אנשים מגלים, א' שהם לא לבד, אז זה מנרמל להם שהם לא משוגעים, הם לא מוזרים.
רואים את זה הרבה מאוד במחלות נדירות. שם הבעיה היא לא הבושה, היא בעצם הנדירות של הדבר הזה.
ובעצם כשאנשים נפגשים ביחד, פתאום מבינים שהם, באמת יש להם משהו אמיתי, הם לא...

(41:25):
וזה אותו דבר גם פה. פה זו הסטיגמה והבושה, שם זה הנדירות וזה. אבל התתי...
This increase and the ability to use force through digital tools is very,
very significant, I hear in the story.
I hear it from you as well. I think, however, that it's more...
That is, it's not just the issue of community.

(41:46):
Because, as I said, forums have been around for over a decade.
Yes. I think you know intuitively how to use this force.
Also, like, thank you, but also, maybe, but also, really, I think it's the place
that allows the external identity. out.
I mean, it's not I'm not just, when you write a forum in Tapuz,

(42:07):
you don't have a way to get to the home page of Tapuz, and that all Tapuz users
will read about your disease, now you're talking about this forum,
but on Facebook, it's very easy in some place, or on Instagram,
to write something, with some picture, and to get to the group,
we had crazy posts, and then I also opened what is now the page of the organization,
I opened it at the beginning of Endometriosis Israel, it wasn't yet a official organization,

(42:31):
and at some point And at some point, I published a post called,
a post called, Sixth Personal.
And since then, for three or four years, every week, we publish a personal story.
Every week. And there's enough.
And these things, at some point, women started to come to us.
I also want to tell my story.
So, we gave a stage, so that not the community would hear, but the people outside,

(42:51):
all those who don't understand.
And then I became a fun status symbol. I got to Sixth Personal,
instead of, what a bitch, what a bitch.
Like, it's really not there anymore. Amazing. And tell me, you talked about
this, that it happened all over the world.
How much was there for you a international connection? How much did things that
were done in the world affect you and the rest?

(43:11):
So there's a group of endometriosis organizations that we're in contact with,
but unfortunately, I think, and I also tried a little in the past to advance
it, I think there's something very confusing in this international connection.
It's not enough, there's not enough mutual learning and mutual commitment,
but I can say, for example, that our report of...

(43:31):
Sorry, I'm based on the big endo cycle. It's entirely due to the British organization,
which has been producing a whole year of paper for many years.
Or our program in the education system started due to the New Zealand organization,
which makes educational programs since the 90s, or something crazy like that.
So, yes, we learned a little. And I also have a lot of friends from the world of clean diseases.

(43:54):
So, we ourselves became a little non-legal coalition, and we learned a lot from each other.

(44:30):
By the way, that a health center was a significant part of the process,
because in the first phase of the BOROT program, which is basically,
you know what it is, it's a kind of accelerator for organizations,
so we launched a program called Endometriosis Care, it was about five or six
years ago, and we allowed women to be activists and lead the opinion in their
communities, and raise awareness,

(44:50):
and some of them are still in the management committee of the organization,
or activities in the organization, that is, we also did some kind of real,
frontal program, We met them, which was with storytelling,
and it was with Sarah Tankman's presentation, and Dr.
Alad Berkovic's presentation. We combined a lot of things. In terms of knowledge
is power, that was by the way one of the most significant things in my opinion

(45:10):
in the change that happened.
Knowledge is power. We always tried to give accurate knowledge,
because in this disease...
כל כך הרבה מיתוסים וכל כך הרבה ידע לא מבוסס שיכול להיות ממש פוגענים ומסוכן עבור החולות.
אז כאילו להוציא החוצה מן סוכנות שינוי כאלה שהם גם הסיפור שלהם יותר יושב,
להם ימדות לספר אותו והם גם מודעות להקשר החברתי הסוציולוגי וגם להקשר הרפוי והם עשו דברים אדירים מאז,

(45:36):
כאילו, ממש. Wow. Yes.
You can turn it into a little practical, let's say tips. You can give... Tips.
What's called a summary to try and find other
people who are suffering now and feel or want to make some kind of change and

(45:57):
are looking for where to start so to go to the north sounds like a great thing
to be privileged with parents who support you financially while you can it's important to say this,
I say this every time people talk to me, it's a privilege to be an activist,
not everyone can I can, at the level of, some have to feed their children,
I don't have time now to sit down and build websites, but there will always be those who can,

(46:20):
for all kinds of reasons, or who can a little bit in some way,
I think that I always, when I advise people who ask me this question,
I say, first of all, build a community.
First of all, focus on Yassad.
There's something when she's a safe community, known, evidence-based,
and there's a lot of resistance and resistance and protection on the borders.

(46:46):
So it's an amazing finding for people who are just getting more and more connected to this goal.
And actually, these are the people who will make the change.
There's no one else who cares enough. Certainly not in the blind areas. It's just us.
First of all, we need to create a community, a safe community,

(47:08):
a supportive community, and then start talking about things,
and really give the social context, or give, I really liked to give inspiration,
to send them something that happened in the United States, and here,
look how amazing, the first step of us, the awareness step, we did it because
I sent a post and said, hey, there was already a step in Kuwait,
in Kenya, why didn't we still make a step? It could be that there isn't one in Israel.

(47:31):
And then I said, who wants to raise a flag? So, unfortunately,
it was me in the end. But two more that they did with me.
Because, like, really, in terms of inspiration and memory, there's a lot that can be done.
I think it's very, very... To do modeling, like, to show, to be...
You know, not everyone is comfortable and easy to write. I really like it.

(47:52):
I like self-expression.
Say, my partner in the organization doesn't like self-expression.
And that's fine, that's legitimate.
Walk the walk.

(48:27):
Women joined slowly into this movement. We gave a lot of opportunities for such
proactivity, even in small things, which then we wanted to open the clinic in Hadassah.
So in the beginning they didn't think there were enough endometrial diseases in Jerusalem.
Until today it's funny to me. You sent them to... So we did a campaign, they took pictures.

(48:49):
We filmed ourselves with a camera. I'm a Nitzan, I live in Jerusalem,
I did live in Jerusalem, and I have endometriosis, I plan to to get to the center.
And I was at this meeting, I passed it on to the doctor there.
Now, it's clear that it's not just that, but when he sees now that there are
30-40 women who are already waiting...
And it's so important to them that they wrote it on a sheet and took a picture.

(49:10):
So it shows that there's something.
It creates the effect. Yes, and I have to say again, Dr. Roridior,
but he's not the only one. It's a lot of cooperation from the doctors.
They come to us. Everything is really done. We almost didn't deal with it.
And maybe it's the first time we've invited Nitzan. No, I think it's very interesting.
Especially when it comes to a female respiratory disease. And the world is mainly

(49:33):
male. It's very interesting to hear how the change was made there.
Because it's definitely done. I mean, we see it. As you say,
we have centers today. It's very obvious.
Not for every disease there is a center. I think it's a power booster.
The moment you have this action, it's just more powerful.
Because when it becomes a war, it becomes a mess. At the end,
all the power goes beyond the war and not beyond the police.

(49:56):
I think, by the way, that the doctors understood at some point that the power went into our hands.
And if there weren't nice doctors and active partners
the chance they would come to them is smaller because the organization
won't necessarily partner with them they won't be on social
media on all our webinars or when I had my own website there were doctors I

(50:16):
wrote to I didn't really recommend them then I realized it's a legal complex
but then it was part of the place of we don't have to go to people who annoy us.

(50:59):
People in their 40s, 50s, they're not doctors in their 80s, they're doctors
that some of them still don't believe it's a real disease, it still exists.
So people who are younger and who...
It's really nice, nice to work with them. A lot of them, it didn't take too much effort.
Other doctors who aren't endometriosis experts took a lot of patience and explanations and data.

(51:24):
And some of them still don't believe it. But it's part of the broad problem.
As I say, it's not because I didn't want to do it well enough.
Even in the 80s, they said that endometriosis is a trend. So I remind myself,
yes, I just found a magazine with such a quote. So a reminder to myself that
it's much bigger than me. The change is with me.
Strong trend. Strong trend, successful trend. For years and more. I assume that...

(51:49):
Since when did they define it as a disease at all? End of the 19th century.
And here we are today. 11 years of liberation in the Israeli revolution.
But no, there is a change. There is a significant change.
And in general, in the field of general-level diseases, there is a lot of hope
and development. And that's all.
Listen to me say, that's all. who runs the world,

(52:38):
I'm happy I'm the podcast.