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Endometriosis – When will medicine and society take the disease seriously? | DW Documentary

  • August 18, 2024



Endometriosis – When will medicine and society take the disease seriously? | DW Documentary

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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23 comments

  1. Everything these ladies went through I’m going through and I’m 46 years old just finding out I had endometriosis. I ended up having to take opiates and they didn’t even work most of the time. I feel like dying when I’m in pain.

  4. It’s hormonal. In older women due to taking birth control pills, plan b, abortions etc. in younger girls it’s the environment, the food, the chemicals everywhere. I had it too. Used an herb to cure it. Combined with raw vegan diet I was cured. Doctors don’t want a cure since there are money to be made in managing disease and surgeries.

  7. When will insurance cover infertility treatments for women with Endometriosis and PCOS! They cover sex changes for trans women but for biological women we are completely ignored!

  8. Is not difficult to diagnose, doctors don’t say and women don’t want to hear, the solution is having children. The birth control makes it worse. And all the pain medication will make you addicted.

  9. My mom had this before her Hysterectomy but didn't have to suffer like these poor women did. The diagnosis from her Gynaecologist was pretty straight forward. After a few tests they had her diagnosed and started treating her. (We are in Canada with a socialized healthcare system, just for reference)

  10. It breaks my heart that women are still suffering from endometriosis and the medical field. In 1981, at the age of 16, I had to have a complete hysterectomy because my endometriosis was so bad.

  12. I had adenomyosis which is next to endometriosis. After I had my last child at 35 years I had a c-section. I got pregnant twice after that and there were no babies in the sac so I had miscarriages. As the years went by my uterus started changing. I went to my doctor about the problem and she told me what I had. As the year goes by I started to have anemic problems. I held on to my uterus for years until I couldn't take it anymore. My body started changing in 2018 and started feeling sick. I went to a specialist doctor. I started bleeding heavily until my blood count was low. Every time I receive iron in my blood my blood count goes down and I start feeling sick. My doctor found polyps in my uterus and opted to remove them. I then told her I wanted a hysterectomy and since then I have been feeling better since I had the surgery in 2022. Years later. If I knew about massage therapy I would have never done this.

  13. I couldn't continue watching this. It brought back such awful memories.

    I was lying on the floor, crying with pain but all my mother did was give me herb tea. At long last I let myself drop down on the schoolyard. I'd been going through this for 4 years now with no painkillers and it was only getting worse. My mother would not take me to a doctor (she died of breast cancer because she refused to see a doctor herself so we never understood this). I was brought to the school secretary and I cried and told them about my pain and my mother's refusal to take me to a doctor. I had heard that a simple contra-conception pill would help so the secretary brought me home in her car to tell my mother face-to-face that school demanded that she take me to the GP.
    Now this was an old conservative man who should have immediately sent me to an OB/GYN but instead even refused to give me a pill. However, I fought back and I did not leave that office without the prescription. And lo and behold, it did get somewhat better.

    When I started working at the age of 19 I started seeing different OB/GYNs – and only number 7 found out that I had endometriosis. I had surgery when I was 21 and put on a pill with no periods anymore at all. At the age of 28, having stopped for 3 months to try to get pregnant, I was back on the floor, crying with pain. It was August 2004 but I could only get an appointment in October. I told the secretary: I'm in pain now, not in October. I decided to call the so called "child factory", a hospital with 21 gynecologists. I figured I'd find one way sooner than October, and I did. I had an appointment the very next week. I had surgery again at the beginning of September and by mid-October I was pregnant.

    My daughter is 19 years old now, I'm 48, and I had a set of twins nearly two years later. I've been on that same pill ever since. My eldest daughter complaint after 4 years so I took her straight to the endometriosis specialist. She didn't have it (yet) but because of my history and from what I had picked up, my mother had had it too, the specialist put her on the same pill I had but the teen-version.
    The twins were 14 so I asked whether they could have that same pill too. Especially the youngest, because she could mentally not cope with all the blood. So she got put on the same pill but her twinsister wanted it as natural as possible.
    Until she got more than normal cramps about two years later and I went back to that specialist, this time with her. He examined her but she did not have it, but he cautioned her because of her family history.

    My female friends are envious of me that I don't have any periods anymore. I tell them I've had to suffer for it. But now I realize I was actually lucky to persist the way I did, to be in this country (Belgium) where it is possible to just switch doctors if you want and to keep looking for somebody who would be able to explain the pain and do something about it.

    I had my diagnosis 27 years ago. I'm shocked to see in this video that at this day and age it's still such a mystery that women go un-diagnosed and thus with nothing to really help them.

  14. THERE IS TREATMENT FOR ENDOMETRIOSIS, ACTUAL MEDICATIONS AND conservative SURGERY. You dont have to live like this, you dont need to take time off to suffer alone at home, treatment will allow you to live a normal life and will stop endo from getting worse.

  15. Found out when I was 34 and will be 38 in Nov. 😔😟😢 I have had cystic fibrosis my whole life. Double lung transplant, medications and surgeries all my life. Ovarian cysts. X8 surgeries. I am on constant birth control to keep the symptoms at bay but when the endo flares up its like I am going to war against parts of my body. Survival is all the goal. Every ache and pain knocks me so hard 💔 I just moan in the fetal position. It's something that nothing helps to ease the pain. Heat cold Epsom baths Tylenol. Nothing. I cant take nsaids or ibuprofen. It mixes bad with my transplant meds.
    I PRAY there will be more light and something that can help ease and stop this pain. It affects everyday.
    I have always wanted to know why in some women and not in others. What causes our dna to accompany the awful Endo in our body? 😢❤

  16. Omg finally!!!!! Women's diseases are always underestimated. And it costs soooo much to find the right doctor and cure!!! Many systoms are underestinated by so many doctors one justs gives up at some point.

  17. Try carnivore. Dr Kiltz healed many women from this disease by removing plants. He claims plant toxins and high insulin causes it. For me, my period has always been painful. It no longer is since high fat carnivore.

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