190 million women around the world suffer from endometriosis, a chronic disease of the abdomen. For a long time, medicine didn’t take these women’s complaints seriously. But now, the taboo issue is finding a wider audience. Women are breaking their silence.
At the age of 14, Theresia Crone had to go to hospital for the first time with extreme abdominal pain. The pain kept on coming back, because she has endometriosis. Now, she’s battling for greater awareness and recognition of the disease. Priscilla Herbil also didn’t feel listened to. For 20 years, she took medication to endure menstruation.
It takes an average of seven years to get a diagnosis – a long time for women to be left suffering. Their periods are extremely painful, but the pain can also come at any time during the menstrual cycle, sometimes affecting the entire body. This is often accompanied by heavy menstrual bleeding, bowel problems, exhaustion, pain during sex and sometimes problems conceiving. The pain is caused by uterus-like cells that colonize areas outside the uterus, for example the ovaries, intestine or peritoneum.
Priscilla is keen to live a full life despite her endometriosis. This reportage accompanies her as she tackles her symptoms, using nutrition, physiotherapy and massage. She wants to avoid an operation at all costs. Theresia is bringing the subject to the political arena with her initiative “EndEndoSilence”. Following the example set by France, she is demanding a national endometriosis strategy for Germany – and more research funding. After all, it’s still not known what causes the disease.
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35 Comments
In India probably for next 50 yrs nobody is gonna bother to care about this issue……
I’m suffering with endometriosis many years . I still pain and worst now .. I did two times surgery and hormones pill it doesn’t work to me 😢it make me worst ! Doctor mentions that to give birth is the best solution 😅. Recently I just turn to 40 th !!!
As a medical doctor I really appreciate this documentary.. in Egypt it's known as the Migrating or Confused Uterus.. Uterine cells growing and shedding periodically, but not in their normal locations of the uterus. Extremely painful and can seriously affect fertility and even organ function.
The response to menopause is very similar: it’s not taken seriously quite often, not all the time but a lot of the time. My GP practice helps me but you REALLY have to push for it to CONVINCE them that you NEED the medication that’s on offer. Women are often still not listened to or taken seriously.
In this video mentioned:
1. Special diet with a lot of fruits and vegetables
2. Massage belly area
3. Drink hot water with small sips few times a day. Do it till the end of your life. Tryst me it will cure a lot of your health issues ! ( this is my advice)
I remember that a girl in my first middle school year had DEBILITATING periods. She was visibly in so much pain, and would faint and black out. She looked sick from it, it was that bad. I was mostly baffled at the time, because my experience with my period was so different, but looking back I'm mostly baffled that nobody really talked to us about it. It was clear that she suffered beyond the other people with periods, but it was just …. a thing that happened that nobody really talked about.
It really stuck with me – especially because that was her life. Every month. So much pain…
I've had a hysterectomy and continue to suffer from endometriosis. I suffered for years undiagnosed by doctors.
My wife is Japanese and she has endometriosis. After a rupture of a cyst, she had one of her ovaries removed. She's taking Dienogest every day for half a year now and she's fine…she hardly has any pain anymore, hardly any side-effects and no more new cysts so far.
Does anyone that has the disease suffer from stomach bloating? I have endometriosis and have pretty bad bloating no matter what I eat. I also get severe pain, and my pain meds are being taken away because of the opioid epidemic.
I was diagnosed with Endometriosis by a great female Gynecologist in New Zealand 🙏After a 1 year and a half of health issues that prevented me to work full time 😢The Gynecologist fixed this Endometriosis issue with a potent IUD that I freely accepted (free for NZ residents and citizens) ❤ And a new chapter (better) in my life started 🤙 Nowadays, I can truly say that those Endometriosis pains WERE NOT NORMAL!!! as the the Patriarchal doctors used to say 🧐 Even, nowadays Endometriosis is diagnosed in the same fashion way as it was back in the 70s when my mom was diagnosed 😫Nothing has changed 😤 It's time that we begin as women and specially women in the health system to look into this matter to make our lives better….. 💅
In 3rd world countries ,how many women suffer from these symptoms silently ?… Without talking about or searching for adequate treatments..theirs marriages live destroying through angerness 😠 ,miserable moody, and husband's arguing sharply without provoke … and mindset.
Breaking the silence!
I have been enduring menstrual pain (including mittelschmerz) since I had menstruation. I am not able to work for others except as a freelancer due to the pain. Women illness deserve workplace justice.
Thank you so much for taking about this…
I'm lying in my bad as writing it. Im on dienogest and it helped a little, I have less episodes of pain at 9/10 that could lat days. Hell.
But I'm still unable to function normally. I'm still in pain everyday and i have an extreme fatigue.
My life is that of a disabled person, except it's not seen as such as there are women with endo that can function normally 😢
I'm in France, it's not as nice here as said in your documentary. I suffered for years and I got diagnosed in Poland because french doctors were so dismissive…
I still get very little help here, and as I didn't get multiple surgeries, I ONLY suffer every day, I'm not recognized as disabled.
So Macron speech was nice but did nothing.
Oh and BTW its a nice publicity for IFEEN center, but for me they were absolutely awful and dismissive!
There are crazy expensive, my ultrasound lasted 5 minutes (the one in Poland that gave me my diagnosis lasted 20), they told me I have nothing, that for my back pain I should exercise, that my intestinal pain can't be endo because it's super rare (huge fat lie! ) and I should try diet (I told them I already tried everything), that fatigue has nothing to do with endo anyway (good joke).
For me this center is a joke, they will take care of you if you already have a diagnosis but they have knowledge from YEARS ago. That are there to make money, not to help.
I had my first period at 12 yo. Since I was 28-29, my period was my monthly nightimare. I would plan my whole life around it. I was in some kind of pain for about two weeks every month and my period was pure hell. I couldn't even stand to walk and go to the bathroom from the debilitating pain for at least 4 days per period. I had a few small cysts on my ovaries. My gynecologist (a woman) said it was normal, that the pain would go away when I would have children etc and she was against contraceptive pills, so was my mother. Another doctor implied that I would be infertile. My mother, I'm sure she had endo too, and her mother too, had no problem becoming pregnant. I remember her suffering during her periods and doing nothing about it. I was sick and tired. Painkillers, even heavy ones, did nothing to me. I even had physiotherapy, which helped a bit, but I couldn't continue the sessions because they were expensive. So, I started my own research, I couldn't stand listening to people telling me that this unbearable pain was normal. I was miserable and no other girl I knew was suffering that much. People didn't believe me. What hurt me the most, was not the male doctors, but the other females in my life that didn't believe me, saying I was too weak, or I haven't found the right painkiller… Anyway, I was never diagnosed with endometriosis, but I try to do some things everyday: have magnesium (helps with cramps in general), try to sleep consistently, eat healthy, manage my stress levels, exercise, listening to my body. I am 31 yo now and cyst free and my periods are somewhat manageable, I only have dysmenorrhea (since 28-29 yo) and painkillers have some effect on the pain. At least, I can be more functional overall! We are all endometriosis survivors!
As someone with endometriosis, it's heartbreaking, and "care" is completely geared towards being able to have kids, not focused on the woman experiencing the chronic illness and pain, with life-threatening complications.
I think it's amazing that these women, with a serious chronic illness and chronic pain, put their limited energy towards this.
Please speak about 24/7 neuropathic constant pain in general. Some pain syndromes are even more cruel than endometriosis.
I’m screaming in agony every month, it’s horrendous. No one understands what I’m going through, it’s ruining my life.
I used to ask god to "end" me to end my pain when I was only 14 years old, I was in so much pain sometimes I had to lose a day of school every month and go to the ER. I did not think I would be able to live past 25 because the pain made me so depressed. I tried everything but opioids. Started taking primrose oil a year ago and I'm doing better. I'm 38, doing better… Don't give up!
I wonder what wisdom Indians had that rest is important for those days and exposure to heat or inflammatory substances intake were forbidden.next mant indian women of 60s 50s did not take birth control pills or contraception .men practiced abstinence during those days.when west focused on body alone and more of epicurean pleasure these diseases are identified.poor western ladies.
Gynaecology is severely understudied (except pregnancy part) society and medical environment doesn’t care about women’s health.
PCOS, endometriosis… Those are SO EXTREMELY COMMON – yet we don’t know anything about those conditions. Doctors simply ignore women’s pain, they won’t do tests because even if they diagnose us, it doesn’t matter since there is no treatments or cure… Their advice? “Try losing weight” yup…even with correct BMI this is what most women will hear 😂😂
Google Fusobacterium Endometriosis – a bacteria is involved in this, it's also found in the mouth. They are running treatment trials using antibiotics now!! Hope ❤
My sister in law has a very serious case. She's already had one kidney and part of her colon removed bc of the damage from her endometriosis. She's not even 30. She wanted children but it seems very unlikely at this point. Needless to say she's suffered through a lot.
DW, if you care to help people, don't make the videos political. You are exploiting people's bad situation to project your political views. Shame on you you are not helping this people or society in general. DW, this people are just means to an end for you.
I have endometriosis but thank go I don’t have extreme pain . Just cramping. However it’s interfering with my ability to have children, which sucks.
💔 never belittled anyone’s feelings of pain
I was in agony for every period till I was in my mid 20s.
Now I just feel like I have a mild flu, and bleed so heavy I need depends for 3 days.
Lord I hate periods! It’s a tiny reason why I decided to never have kids since I was so shamed about it.
I hate my ovaries, and when I die I will go Karen on Gods ass myself.
Biblical punishment my foot.
I have endometriosis but I did not have bad painful periods. However, I had other symptoms like bloating, IBS like symptoms etc. I had a lot of bad symptoms including nausea, pain etc after my infection which lead to the diagnosis. I tried an acupuncturist who performed moxibustion, acupuncture and cupping. I can say after a couple of years of frequent treatment, she changed my pain profile significantly. I only see the acupuncturist now once a month. I will se a pelvic floor physio just to prevent anything I can prevent. More research is needed for female related diseases which have been neglected for decades.
My wife has suffered from this… Pregnancy was the only answer to overcome it…
My mother told me that she had menstrual pain so severe as a teenager that she'd be bedridden and vomited. As a young woman she had difficult labor and deliveries, resulting in c-sections. She died of Ovarian cancer after having a hysterectomy. As a teen through menopause, I too had painful periods, but was encouraged to push through the pain. So I suffered in silence, gulping OTC pain killers. In 2017, I was diagnosed with Endometrial Cancer and had a total hysterectomy. At no time was either my mother or I evaluated for the possibility of Endometriosis. Because so little research has been done, there's no telling if our symptoms and illnesses were not related to the inflammation of Endometriosis.
Thank you/pateicos ♥
Im sorry but if my dr touched my stomach like that lady was rubbing i would die in pain
As someone with PCOS, for us it's even harder 😔
I cried watching this, I suffered so much pain and too long heavy periods. I was scared to get periods. I had my first period at 13 and today in my thirties, the pain is no different. My mom was a nurse and said she just doesn’t understand why I should be in so much pain. I just held on to painkillers. I lived in fear of the next period.😢 Iys good to know what this is. It’s half the solution to me now, to know it wasn’t in my head, to know it is a disease. To know I am sick and can probably get help.
I encourage to think about Ayurvedic medicines.