Polish Endometriosis Foundation

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What is endometriosis?

Endometriosis is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus. It causes a chronic inflammatory reaction that may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body. 

(Source)

Women can have endometriosis regardless of skin color, ethnicity or age.

Endometriosis affects roughly 200 million women globally and even 2 million in Poland.

Scientists say that the disease is observed in 6-15% of women.

Symptoms

The most common symptoms are dysmenorrhea (60–80% of cases), chronic pelvic pain (30–50% of cases), infertility (30–40% of cases), dyspareunia (25–40% of cases), irregular periods (10–20% of cases).

Source: https://www.researchgate.net/publication/319310683_Wplyw_endometriozy_i_metod_jej_leczenia_na_jakosc_zycia_i_funkcjonowanie_seksualne_kobiet_-_przeglad_najnowszych_badan_The_impact_of_endometriosis_and_modes_of_its_treatment_on_quality_of_life_and_sex/link/59a2e698a6fdcc1a315f55eb/download

DIAGNOSTICS

  • detailed medical history interview,
  • expert pelvic exam,
  • transvaginal and transrectal ultrasound (eg. sonovaginography),
  • medical imaging methods (MRI and CT),
  • in justified cases – laparoscopy, laparotomy, histopathology.

Treatment

  • pharmacological treatment,
  • surgical treatment (laparoscopy, sometimes laparotomy),
  • pain management,
  • physiotherapy,
  • psychotherapy,
  • anti-inflammatory, vegan, vegetarian diet,
  • alternative therapy.

the problem of long diagnosis

Endometriosis Association report revealed that among women suffering from endometriosis, 40% reported first symptoms during adolescence or late childhood.

M.L. Ballweg, Big picture of endometriosis helps provide guidance on approach to teens: comparative hisyorical data show endostarting, younger, is more severe. „J Pel Adoles Gynecol” 2003, 16, 2 suppl, s. 521- 526

It takes around 10 years to get diagnosed – why?

  • ack of knowledge about endometriosis among medical professionals,
  • lack of classes dedicated to endometriosis in medical university education,
  • stereotypes „period must be painful” czy „this is who you are”,
  • very wide range of symptoms, which can point to other disorders,
  • lack of endometriosis awareness in society,
  • no known cause of the formation and development of the disease,
  • lack of effective non-invasive methods of diagnostics,
  • few specialists,
  • lack of pricing of advanced endometriosis surgeries, including DIE surgeries,
  • no specialized state-operated endometriosis clinics in Poland.

ENDOMETRIOSIS IN POLAND

lack of awareness

among doctors and patients

period myths

period must be painful
painful menstruation will always pass after pregnancy
womanhood is pain
this is just who you are

lack of state-funded endometriosis treatment program

no pricing

of multi-organ endometriosis surgeries

CONSEQUENCES

  • decline in the quality of life;
  • infertility and sterility;
  • depression;
  • low self-esteem;
  • problems with sustaining a pregnancy;
  • painful intercourse and decline in the quality of sex life;
  • chronic pain;
  • expensive treatment, poor financial situation, taking a loan to pay for surgery;
  • disability;
  • incapacity for work;
  • job loss;
  • anxiety, deprivation of basic needs;
  • limiting of physical activity;
  • relationship problems, relationship breakup;
  • …

Endometriosis vs Productivity

21,7%

respondents had to take sick leave last month because of endometriosis

75,5%

respondents went to work despite severe pain

What can i do?

  • don’t be afrait of consulting with another doctor!
  • look for support groups
  • support NGOs
  • spread awareness
  • react if you see endometriosis symptoms
  • don’t be afraid to communicate if you’re not feeling well
  • you are not alone!

Polish endometriosis foundation

  • established in: 2018
  • president: Lucyna Jaworska-Wojtas
  • goals:
    • helping women suffering from endometriosis and their families
    • cooperation with private and state-funded centers providing modern methods of endometriosis treatment
    • spreading awareness of the disease

You never know how strong you are until being strong is the only choice you have.

– Lucyna Jaworska-Wojtas, the President

Who can I contact?

Lucyna Jaworska-Wojtas

President

COUNCIL

Aleksandra Bielak (EN)

Marlena Kaźmierska

Kasia Ploch

AMBASSADORS

Kasia

Olecko

(EN)

Ania

Szczecin

(EN)

ENDOMETRIOSIS EXPLAINED

We’ve recently partnered with @endoexplained, the team that is crowdfunding an explainer film that will bring together the world’s leading medical experts on Endometriosis.
“We are creating this film for any person that is affected by Endometriosis and related conditions” says Nina Jørmeland, a fellow endo warrior from Norway who is the founder
of the company that is producing the film.
The 90-minute film “Endometriosis Explained” will feature world-leading Endometriosis experts from all major medical disciplines, including Gynecology, Pain Management,
Surgery, Nutrition, Physiotherapy, and Fertility. Together, they will give a complete overview of what is known about Endometriosis today, and provide insights into the
latest breakthroughs in diagnostics and treatments.
We’re super excited to be supporting this initiative to make knowledge from the world’s top Endometriosis experts easily accessible to anyone.
Head to the link in our bio to find out more about the film and sign up to be the first to know when the crowdfunding campaign goes live.

#EndoExplained #NotJustAPainfulPeriod

Chosen activities

November 2018

  • Program TVN 36,6 – episode about endometriosis – the announcement of creating the Foundation

March 2019

  • participation in World Endometriosis Awareness Day
  • participation in the meeting „Endometriosis – Facts and Myths” organized by Medicover Hospital in Warsaw and Polish Endometriosis website
  • participation in Open Day in Medicus Clinic in Wrocław
  • participation in the meeting organized by Miracolo Clinic in Warsaw
  • organizing a meeting about endometriosis during Women’s Day celebration
  • the letter to the Ministry of Health with a plea to create national endometriosis treatment program

2020

  • #EndoMarszOnline #EndoMarsz2020 #PokonajEndometriozeOnline action
  • Endopłuca – meeting with P. Siekierski PhD and J. Bubak-Dawidziuk MD about thoracic endometriosis
  • Creating the petition of patients suffering from thoracic endometriosis to the Ministry of Health
  • Participation in the conference „Strefa projektów społecznych i edukacyjnych” 28.05.2020 with a presentation about educational practices used for spreading awareness in society
  • „Letters to Prime Minister”
  • Supporting (sharing) of fundraises for commercial endometriosis surgeries
  • The letter to the President of Poland, Andrzej Duda
  • Co-authoring of „EndoTeens” – series of articles about students with endometriosis
  • Translating and sharing English articles
  • Patronage over a book about endometriosis
  • Organizing 6 webinars („Niesiemy wiedzę/Carrying the knowledge” series)
  • Guest webinar for Zamość city
  • Guest appearance for „Studio Med”
  • Guest appearance for „Operacja Zdrowie”
  • Organizing a contest: „Fundacyjne EndoWojowniczki”
  • Creating new website
  • Creating YouTube channel
  • Spreading specialist knowledge by publishing short films about endometriosis with Mikołaj Karmowski PhD and Piotr Rubisz PhD

2021

  • Continuation of „Niesiemy wiedzę/Carrying the knowledge” webinar series
  • Continuation of EndoMarchOnline
  • Patronage of the conference „Świadomy UAM- w chorobie i niepełnosprawności”
  • Participation in newly founded Parliamentary Group for Endometriosis
  • Distinction in the „Grant na zdrowie” contest for the „Endometriosis awareness 2021” project
  • Co-creation of „Okresowa Koalicja”
  • Guest appearance in „Pytanie na śniadanie”
  • Guest appearance in the broadcast of University Radio „Luz” and in „Na Synapsach” podcast
  • Interview for „Gazeta Wyborcza” about endometriosis and period poverty
  • Interview for the „Chcemy być rodzicami” website
  • Interview for Radio Doxa
  • Interview for „Szajn ma głos”
  • „Yellowomb” project and cooperation with IFMSA-Poland
  • Supporting and sharing fundraisers for commercial surgeries
  • „Dietetic (endo)rphines” contest
  • Sharing surveys for research on endometriosis and supporting scientists
  • Conducting surveys about the level of knowledge among students of medical programmes and the efectiveness of the „Yellowomb” project
  • Submitting a request to MEP Leszek Miller to support the supplementation of state practices regarding endometriosis treatment and improve availability of medical procedures in European Parliament, which resulted in submitting question in the Parliament for the case
  • Interview for Halo Radio
  • Presentation during 5th conference Strefa Projektów Edukacyjnych i Społecznych about „Carrying the knowledge” webinar series as an example of spreading awareness
  • Patronage and consulting for Polish translation of Beating Endo book
  • „Share your menstruation” contest
  • Supporting #OtwórzOczy and #PodpaskiZaOpaski actions organized by Okresowa Koalicja
  • Organizing „Share your menstruation” action – a series of stories of experiencing menstruation by endometriosis patients and publishing short films with medical professionals and people engeged in the topic of menstruation
  • Preparing a stand for an event promoting health organized by Greater Poland Brand of National Health Fund – providing free consultations with gynecologist and dietician
  • Preparing a stand during the Day of Health Prevention in Gdynia – free consultations with gynecologist and dietician
  • Support for TV document „Taka twoja uroda”
  • Starting a petition „6 postulates for 3 million”
  • Submitting a petition signed by over 5 thousand people in the Ministry of Health office
  • Organizing „Yellow line” event – free online consultations with certified psychotherapist
  • Participating in the Health Committee and Social Policy and Family Committee meetings in Polish Sejm

2022

  • Participation in the first in history Health Committee meeting devoted entirely to endometriosis
  • Guest appearance in Fakty TVN with a commentary regarding Health Committee
  • Presentation in YES Gallery in Poznań
  • Award in the „Grant na Zdrowie” contest for „Let’s beat endo – conference and EndoAssistant – mobile app” project
  • „YELLOWOMB 2.0” with cooperation with IFMSA-Poland
  • Submitting the letter to the Ministry of Health – continued correspondence after sumbitting a petition
  • „EndoWarriors” project in cooperation with Angelius Clinic
  • Guest apperances in TVP3, Ofeminin, Radio LUZ, Onet Kobieta and Zwierciadło Magazine
  • Participation in „Take care of yourself!” meeting with Amazonki Poznań
  • Starting ambassador programme
  • Guest appearance in podcast of Marta Niedźwiedzka
  • Organizing Holistic Treatment of Endometriosis conference in Wrocław
  • Creation of the new map of medical professionals

Support us!

We need Your help to work effectively!

Every amount donated to our account helps us realize our goals.

Account number: PL11 1020 4027 0000 1602 1515 1726
SWIFT: BPKOPLPW

Click here to easily donate!

Contact us

Fundacja Pokonać Endometriozę

ul. Bieniewicka 26, 01-632 Warszawa