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International MRKH Day - The Women in History who have shaped care, beyond the four male physicians who discovered MRKH.

It’s International MRKH Day which is Carl Rokitanksy’s birthday! And every year that’s usually what seems to be spoken about. So we’re delving deeper!


International MRKH Day is dominated by the male physicians who discovered it.


Let’s delve into the history beyond the clinical discovery… including the female scientists who have made an impact.


MRKH is named after the authors of the four original descriptions published over a 130 year period by German anatomist August Franz Josef Karl Mayer (1829), Austrian anatomist Carl von Rokitansky (19th Feb 1838), German gynecologist Hermann Küster (1910) and Swiss gynecologist Georges Andre Hauser (1961).


Let’s be thankful it wasn’t called Franz Carl Hermann Georges Syndrome!




While the modern name dates to the 1960s, similar conditions were documented long before


  • Hippocrates (460–377 B.C.) mentions a "membranous obstruction" of the vagina in his writings.

  • Soranus of Ephesus (98–138 A.D.) was the first to identify vaginal atresia as being congenital in origin.

  • Albucasis (1013–1100 A.D.) described "fleshy growths" or congenital obstructions in the vagina that prevented menstruation and pregnancy.

  • Matteo Realdo Colombo (1559) was credited with the first detailed medical documentation of the simultaneous absence of both the uterus and vagina, which he called "vulva rara".


Hippocrates Soranus Albucasis Colombo syndrome perhaps?


Happy Birthday Carl Rokitansky, but ...we want to challenge male dominated narratives of

discovery.


Let's reclaim MRKH knowledge as community informed, not just clinically defined.


WE ARE MORE THAN A CLINICAL DEFINITION...


We all may know the stories that Hitler’s Mistress may have had MRKH. But did you know about Queen Amelia of Greece?


Some historians suggest that the infertility of Queen Amelia of Greece, was rumoured to be caused by MRKH (then described as "hypersensitivity and anatomical defects"), contributed Dethroning of

King Otto (1862).


Historical, 2011, and later analyses of correspondence between Greek and German physicians suggested that the Queen suffered from anatomical defects, specifically vaginal agenesis (a key feature of MRKH

syndrome).


The Royal Court physicians attempted various treatments of the time, including vaginal dilation/manipulation, advice to stop horseback riding and visits to European spas, all of which were

unsuccessful.


While some 2011 reviews suggested it is not absolutely possible to definitively confirm the diagnosis trom the historical evidence alone, the case is widely used to illustrate the historical, social and political impact of the condition.



Her story teaches us the historical societal view that not being able to reproduce, or to have a body that is different to the binary ideals of what a female "should" be, was something to be ashamed of...


Unfortunately this shame has not disappeared fully and we still carry deep feelings of it amidst our community, especially across continents, where culture and identity for Women is wrapped up immensely in sexual and reproductive ability.


Language we're dumping from the past


FAIL


“…condition is still unclear. MRKH syndrome is usually undiagnosed in young females until they fail to achieve a proper onset of their menstrual cycle (menarche) at puberty.”


You may feel like your body failed you but you are not broken. You are not a failure.


NORMAL


“…mullerian (paramesonephric) ducts in otherwise chromosomally, phenotypically, and

endocrinologically normal female.


We prefer “typical development” of those assigned female at birth , what's normal when everyone is different?



So…


Let's explore

THE WOMEN IN SCIENCE WHO MADE AN MRKH IMPACT

Beyond the definition...


There is no single female equivalent to the male eponym founders of MRKH but there are women whose work quietly shifted care, understanding and ethics around congenital reproductive conditions.


  1. Rebecca Lee Crumpler



PRIMARY AMENORRHEA AND CONGENITAL

REPRODUCTIVE DIFFERENCES WERE PART OF THE CLINICAL LANDSCAPE SHE LEGITIMISED AS MEDICAL, NOT SHAMEFUL.


(1831-1895)

  • She was the first Black female physician in the United States who specialised in the health of women and children.

  • She wrote A Book of Medical Discourses (1883), one of the earliest medical texts by a woman - documenting congenital conditions, menstrual absence, and reproductive development in girls.

  • Her work advanced that variations in female development were medical realities not moral failings.


  1. Clelia Mosher


SHE HELPED MOVE MEDICINE AWAY FROM SHAME BASED INTERPRETATIONS OF ATYPICAL FEMALE ANATOMY.


Not MRKH specific but hugely influential.

  • One of the first female physicians to study female sexual anatomy, function and variation without moral judgement.

  • Her work challenged the idea that women's bodies that differed trom the norm were pathological or "failed."

  • This reframing laid groundwork for later understanding of intersex and congenital reproductive differences like mRKH as biological variation, rather than defect.


HER WORK WAS SUPPRESSED FOR DECADES BECAUSE IT CONTRADICTED DOMINANT

MALE THEORIES.



  1. Mary Calderone

SHE PUSHED AGAINST THE SILENCE THAT HISTORICALLY SURROUNDED MRKH

DIAGNOSES.


Mary Calderone 1904-1998 was key in influencing early patient- centred gynaecology.

Mary retramed reproductive heath as education and

empowerment.

Her work influenced adolescent gynaecology including care for girls presenting with primary amenorrhea which is often how MRKH is discovered.


She advocated for honest communication rather than secrecy.


Your sexuality is yourself, as the total person that you are - Mary Calderone


  1. Marie M. Daly


SHE HELPED BUILD THE BIOCHEMICAL KNOWLEDGE BASE WITHOUT WHICH MRKH EMBRYOLOGY RESEARCH COULD NOT EXIST.


192-2005 was the first Back woman to earn a PhD in chemistry.

While known for cardiovascular work, her research advanced biochemical pathways of hormones and metabolism.

Her work fed into broader endocrinology that later informed reproductive development research including Müllerian anomalies.



  1. Helen Singer Kaplan

SHE DIRECTLY SHAPED HOW MRKH PATIENTS WERE COUNSELLED RATHER THAN JUST SURGICALLY TREATED.


(1929-1995)

Late but still pre nainstream feminist medicine.

  • Integrated psychosexual wellbeing into gynecological care.

  • Influenced how clinicians approached patients with vaginal agenesis including MRKH.

  • Advocated that sexual function and identity were not defined by anatomy alone.


Nathalie Josso

SHE GAVE SCIENCE THE MECHANISM NOT JUST THE DESCRIPTION.


1934-2022

She discovered Anti Müllerian Hormone

AMH) in the 1950s-60s.


AMH explains why Müllerian structures develop or regress.


Her work became foundational to understanding why

MRKH occurs embryologically even if the syndrome itself was m already named.


It’s not all about the four men who discovered it.


It’s about the ongoing care, support and community MRKH has always needed and will continue to need.


To every MRKHer, on MRKH Day

However today finds you


Whether you mark it loudly or let it pass quietly


Whether you celebrate, grieve, reflect, or feel unsure what you feel at all


This day belongs to you.

There is no right way to hold MRKH.


No correct emotion.


No expectation to be strong, hopeful, positive, or proud.

You might be mourning what you did not get to choose.


You might be honouring how far you have come.


You might feel numb, tired, angry, soft, grateful, disconnected, or all of it at once.


Every response is valid.


MRKH Day is not a demand to make meaning from pain.


It is simply a pause.


A moment where you are seen without explanation.


A reminder that you are not alone, even when it feels deeply personal.


Your body is not a failure.


Your life is not on hold.


Your worth was never dependent on organs, milestones, or expectations.


Today, you are allowed to rest from carrying it.


Or to hold it close.


Or to set it down completely.

However you move through today, you are doing it right.


We are fundraising for our awareness and story telling work and we truly appreciate your support.

 
 
 

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Rarely Project CIC: No 16493217

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