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#endometriosis

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Scozmos

zeroes.ca/@broadwaybabyto/1149
What IS the problem with #endometriosis and #adenomyosis? Women all over this country, all over the world, in screaming agony being ignored, told it's all in their heads!!! 🤬 Our daughter has spent over THREE YEARS battling with GPs and hospital bureaucracy in S. Wales, meanwhile in agony, bleeding heavily way too often when one operation could change her and all their lives drastically!!!! #NHS #redtape #BritishBureaucracy

zeroes.caBroadwaybabyto (@broadwaybabyto@zeroes.ca)At 19 I was told my health came second to my future husband. At 22 I was told I would feel differently once I was “in love” At 24 my boyfriend was asked if he would still love me if I couldn’t bear children. My autonomy was violated for 5 years for a hypothetical baby I had severe endometriosis and adenomyosis. My periods hell. They were irregular, heavy and painful. I would lay on the bathroom floor in unrelenting pain, throwing up and too weak to move. As the years dragged on I became more disabled from the pain and anemia. Surgeries to control the blood loss failed. Medications to put me into chemical menopause failed. Birth control pills failed. I needed a hysterectomy. I had never wanted children. I wasn’t even sure I wanted marriage. I was also far too disabled to get pregnant or raise a child. So I asked for the surgery. I asked my doctors to remove the diseased organ destroying my quality of life. I was firmly told “No” because I might meet a man who wants kids. That even though I was too sick to survive pregnancy and likely infertile, I couldn’t make the choice to remove my womb in case I changed my mind when I met my dream man. I told the doctors I didn’t want kids, it didn’t matter. I pointed out I was too sick to care for myself, let alone a child, and it didn’t matter. I said that my “dream man” would love me even if I couldn’t have kids, and the doctors laughed. I had no bodily autonomy. Medical misogyny was ruining my life. I spent the next few years getting second and third opinions. Fighting like hell to get the surgery I knew I needed to have any shot at a “normal” life. When I began dating someone, I brought him to my appointments hoping he could convince them to operate. They asked him if he would love me if I couldn’t give him biological children. He didn’t want kids either, but they said the same thing to him they kept saying to me: “You might change your mind” Why is the medical system so obsessed with us having babies? Misogyny and patriarchy. We could have changed our minds. We could have also broken up. What “could” happen in the distant future should never be given more weight than what was happening in the present. I was slowly dying. Bleeding to death and confined to bed. Relying on blood and iron transfusions to survive. I tell this story every few months because I think it’s incredibly important we talk about our lack of autonomy. The post Roe landscape is putting our lives in danger, and my story can hopefully help people understand why. If I wasn’t able to make the choice I needed for my body when there was no fetus involved, imagine how hard it must be for pregnant people who need to access abortion? Forced birth advocates love to trumpet the “exemption for the life of the mother” rule to justify abortion bans But if doctors weren’t willing to remove my uterus when it was literally killing me, why are we trusting they will terminate a pregnancy when the mother’s life is at risk? A hypothetical baby came before my life… imagine what would happen if there was a real fetus involved? We know what happens. Women die. They bleed out in parking lots. They become septic, lose their fertility or spend months fighting for their lives in the ICU. Their care is delayed because the fetus comes first. And delayed care comes at a cost. I finally got my hysterectomy, but only because I was bleeding out in the ER and transfusions couldn’t keep up. By the time they finally gave me the surgery I spent years asking for, my survival odds were only 50/50. Had they done it when I asked, it would have been 99% It’s the same thing for those experiencing miscarriage or abortion complications. If they could get timely healthcare, their odds of survival would be excellent. When we tell doctors they can’t intervene until the life of the mother is “clearly” in jeopardy? That’s when we start dying. We deserve better. We need full autonomy over our reproductive systems, and that includes access to sterilization and abortion. It’s time. More on what my hysterectomy taught me about medical misogyny: https://www.disabledginger.com/p/what-my-hysterectomy-taught-me-about #uspol #fascism #hysterectomy #abortion #AbortionRights #reproductiverights #misogyny #patriarchy
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Maggie Maybe

FINALLY! Right to sterilizing treatment is LAW in NH

Last Wednesday, the governor of NH signed into law HB 606, prime sponsored by Rep Ellen Read (dubbed by Republicans as "the AOC of NH"), which guarantees that a doctor cannot withhold advisable sterilizing treatment from a patient simply because they don't agree with their right to be childfree (or because they are “too young" or will "change their mind" etc).

This makes NH the first government in the WORLD to guarantee the protection to childfree people!

Countless people have shared their frustration with being denied needed hysterectomies or other sterilizing treatments, being needlessly subjected to miserable conditions like prolapsed uteruses, cyclical vomiting, or debilitating pain... And the risk of dying from high risk unintended pregnancies while having conditions like autoimmune disorders, genetic disorders, or cancer.

Now, people who are suffering while getting denied treatment can go to NH (the law has been signed and takes effect Sept 13) and have THE RIGHT to have medically advisable sterilization treatments, regardless of age (if over 18), number of children, marital status, or any fertility goals contrary to your statement.

While the law states that the treatment must be for a qualifying medical condition, the definition of a medical definition is quite broad. Not only anything that affects the reproductive organs, but also anything that would make having children not advisable. This may include family medical history of inheritable diseases, genetic conditions, conditions that make pregnancy dangerous like autoimmune disorders or cancer, or mental health conditions that would make someone not a good parent.

And while gender dysphoria itself neither counts as something that affects the reproductive organs nor would make having children not advisable, the doctor cannot discriminate against people with gender dysphoria in providing the treatment.
So if you've been suffering with denials from doctors who care more about your fertility than your well being, take a trip in the fall to NH, the fall colors are beautiful!

#NH#HB606#Endometriosis
earthling

Georgie Wileman: Self, 2014–2022, from the series This Is Endometriosis, 2023

This self-portrait by UK-based photographer Wileman documents the dates of her scars from #endometriosis surgeries. The condition affects one in 10 women and those assigned female at birth and, says Wileman, ‘is dangerously underfunded, under-researched and misunderstood, leaving so many isolated in their agony and fighting to be heard’

@photography
#photography
#women
#SelfPortrait
#surgery

dallo

«L’endométriose est un sujet massif pour la santé des femmes» : un premier débat organisé au Parlement européen – Libération

liberation.fr/societe/sante/le

> Une discussion est prévue pour la première fois jeudi 10 juillet au sein de l’hémicycle de Strasbourg. La députée écologiste Majdouline Sbaï, à l’initiative de cet échange, revient pour «Libé» sur ses enjeux.

Libération · «L’endométriose est un sujet massif pour la santé des femmes» : un premier débat organisé au Parlement européenBy Apolline Le Romanser
#endometriosis#feminisme#europe
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Maggie Maybe

This almost made me cry this is so exciting!!
It’s too late for me, but it’s WONDERFUL to know that younger women might not have to drop out of high school, take 10 years to get through college, and miss promotions at work because nobody’s boss is cool with them missing a day or two of work every month if their period starts during the week.

THIS IS FANTASTIC NEWS!!

open.substack.com/pub/vajenda/

#WomensHealth#Endometriosis
卡拉今天看了什麼

Endometriosis is an incredibly interesting disease

Link
子宮內膜異位症是一種極具研究價值且病理複雜的疾病，其主要病因尚未完全解明，且症狀與許多癌症相似，卻無有效根治方法，且在全球醫療資源中嚴重缺乏投資。本文探討子宮內膜異位症的定義、目前流行的理論不足之處、多元病理機制及其與癌症的類似性，並分析目前治療現狀及其不足，最後提出該疾病在全球醫療資源分配上的不合理現象及急需關注的原因。

📌 Summary: 子宮內膜異位症是指類似子宮內膜的組織在子宮腔外生長，依女性體內激素週期變化而反覆增生、脫落及出血，導致嚴重疼痛、發炎、纖維化與器官黏連，進而引發不孕等問題。最早的逆行月經理論雖被廣泛接受，但無法解釋該疾病發生於非月經女性甚至男性的案例，且發病位置極為多樣，遠超出骨盆腔範圍。多種理論如胚胎殘癥理論、腹膜上皮化生理論及免疫異常假說被提出，現今多認為病因為多元異質性組合。病變細胞常帶有類似癌症的驅動基因突變，展現類癌的侵襲與擴散特性，卻非典型腫瘤，且病變可自我逃避免疫監控。現有治療方式包括激素療法與手術，多為症狀緩解及病竈移除，無法根治，且復發率高。內膜異位症在疾病負擔（以 DALYs 衡量）與研究經費比例極低，約為 0.2，遠低於阿茲海默症或糖尿病等疾病，且因診斷需侵入性手術，造成平均延遲7至10年，進一步低估其流行率與受害範圍。本文呼籲對此疾病投入更多資源與研究，以改善患者生存品質及增進病理學理解。

🎯 Key Points:
→ 什麼是子宮內膜異位症
★ 內膜樣組織在子宮外異位生長，對激素皴動反應，導致血液與組織滯留與慢性發炎
★ 造成嚴重骨盆疼痛、不孕及器官粘連，對生活品質有重大影響

→ 主要假說與其限制
★ 逆行月經理論：部分內膜經輸卵管逆流至骨盆腔形成病竈，但無法解釋非月經女性、男性病例及遠端器官發病
★ 胚胎殘留及腹膜上皮化生理論提供細胞來源多樣解釋，但位置集中與發病時機仍無法充分解釋
★ 免疫異常、體細胞突變及微生物污染等理論補充病因多樣性，學界普遍認為多因子共同作用

→ 與癌症的相似性
★ 發病細胞攜帶 ARID1A、PIK3CA、KRAS 等常見癌症驅動基因突變
★ 病竈具侵襲性與局部組織改造能力，能逃避免疫系統，是良性腫瘤與惡性腫瘤之間的「模糊地帶」
★ KRAS 突變與疾病嚴重程度、手術難易度高度相關

→ 治療現況與挑戰
★ 激素療法（口服避孕藥、黃體素類似物、GnRH 激動劑）用於抑制病竈激素反應，但多數病竈未明顯縮小，停藥後易復發
★ 手術治療可去除病竈與恢復解剖，但復發率高達 20-45%，且具手術風險
★ 新興療法（例如 dichloroacetate、cabergoline）仍處於研究階段

→ 疾病負擔與研究資源落差
★ 估算疾病負擔（DALYs）顯示子宮內膜異位症對全球女性健康影響嚴重，約影響 10% 女性，全球約 1.9 億人
★ NIH 2023 年對子宮內膜異位症投入約 2,900 萬美元，但其 DALYs 與資金比例僅約 0.2，遠低於阿茲海默症、糖尿病等疾病
★ 診斷多依賴侵入性腹腔鏡，導致診斷延遲長達 7-10 年，大量病例未被正式診斷，進一步低估病情嚴重性

🔖 Keywords:
#子宮內膜異位症　#endometriosis　#逆行月經　#癌症類似性　#激素治療
Owl Posting · Endometriosis is an incredibly interesting diseaseBy Abhishaike Mahajan
N-gated Hacker News

💁‍♂️ Ah, the riveting world of endometriosis—you know, that "fascinating" disease we all spend our weekends pondering. 🌟 Who knew a 5,000-word #essay could be written by someone who thinks SF event plugs are an integral part of medical discourse? 🙄
owlposting.com/p/endometriosis #endometriosis #medicaldiscourse #SFevents #healthdiscussion #weekendreads #HackerNews #ngated

Owl Posting · Endometriosis is an incredibly interesting diseaseBy Abhishaike Mahajan
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Daniel Hoffmann🌻

A new meta-study supports the association of #longCovid with #endometriosis.
bmcwomenshealth.biomedcentral.

BioMed CentralLong COVID and endometriosis: a systematic review and meta-analysis - BMC Women's HealthLong COVID conditions entail the persistence of COVID-19-related symptoms for at least eight weeks following SARS-CoV-2 infection. The prevalence of long COVID is estimated to range from 10 to 30% among individuals infected with SARS-CoV-2. Despite its growing impact on healthcare systems, long COVID remains poorly understood. In parallel, endometriosis, a chronic inflammatory condition affecting around 10% of reproductive-age women, is marked by symptoms such as pelvic pain and infertility. The aim of this study was to assess the association between endometriosis and long COVID. We performed a systematic review of long COVID among endometriosis patients in Pubmed/Medline, Cochran Library and Science Direct databases from inception to August 2023. We independently selected studies, extracted data, assessed risk of bias, and compared endometriosis versus non endometriosis patients for long. Pooled analyses were based on random-effect models, and the I2 statistic was used to quantify heterogeneity across studies. A total of 2 cross-sectional studies (N = 216,095 participants) were included. The pooled analysis comparing endometriosis to non-endometriosis patients significantly showed association for long COVID (pooled RR = 1.41 [1.31–1.52], I2 = 29%, p < 0.001). Women, who are disproportionately affected by long COVID, particularly those with endometriosis, may face compounded health challenges. While our findings suggest a possible association between endometriosis and long COVID, the evidence is currently limited to two observational studies. Further research involving diverse populations and robust study designs is needed to confirm this relationship and clarify underlying mechanisms.
Tom Kindlon

Long COVID and endometriosis: a systematic review and meta-analysis

link.springer.com/article/10.1

"While our findings suggest a possible association between endometriosis and long COVID, the evidence is currently limited to two observational studies”

#LongCovid #PASC @longcovid #endometriosis @endometriosis

SpringerLinkLong COVID and endometriosis: a systematic review and meta-analysis - BMC Women's HealthLong COVID conditions entail the persistence of COVID-19-related symptoms for at least eight weeks following SARS-CoV-2 infection. The prevalence of long COVID is estimated to range from 10 to 30% among individuals infected with SARS-CoV-2. Despite its growing impact on healthcare systems, long COVID remains poorly understood. In parallel, endometriosis, a chronic inflammatory condition affecting around 10% of reproductive-age women, is marked by symptoms such as pelvic pain and infertility. The aim of this study was to assess the association between endometriosis and long COVID. We performed a systematic review of long COVID among endometriosis patients in Pubmed/Medline, Cochran Library and Science Direct databases from inception to August 2023. We independently selected studies, extracted data, assessed risk of bias, and compared endometriosis versus non endometriosis patients for long. Pooled analyses were based on random-effect models, and the I2 statistic was used to quantify heterogeneity across studies. A total of 2 cross-sectional studies (N = 216,095 participants) were included. The pooled analysis comparing endometriosis to non-endometriosis patients significantly showed association for long COVID (pooled RR = 1.41 [1.31–1.52], I2 = 29%, p < 0.001). Women, who are disproportionately affected by long COVID, particularly those with endometriosis, may face compounded health challenges. While our findings suggest a possible association between endometriosis and long COVID, the evidence is currently limited to two observational studies. Further research involving diverse populations and robust study designs is needed to confirm this relationship and clarify underlying mechanisms.
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