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‘I cried tears of relief’ – survey reveals the reality of diagnosis delays for women with endometriosis

More than 60 per cent of respondents saw three or more healthcare providers to get a diagnosis, research has found

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More than 70 per cent of women feel their symptoms are dismissed by healthcare providers, the menstrual and reproductive health app Clue has revealed following a survey of its members affected by endometriosis.

Ahead of Endometriosis Awareness Month (March), the survey polled over 1,200 Clue members with endometriosis.

The research found that 74 per cent of respondents felt their symptoms were dismissed by healthcare providers, indicating a gap in diagnosis and support.

It showed that 92 per cent of women reported experiencing symptoms by the age of 30, but for 46 per cent, it took over five years to get diagnosed after first seeking help from their healthcare provider. Respondents over the age of 40 had longer wait times and more confirmed diagnoses via laparoscopy.

More than 60 per cent of respondents saw three or more healthcare providers to get a diagnosis, the research suggested, while 10 per cent of respondents had to see more than 10 healthcare providers about their symptoms before being diagnosed

Around 75 per cent of respondents found tracking their symptoms with Clue to be helpful for managing their condition, while 50 per cent indicated they found Clue helpful for collecting data to share with their healthcare provider.

The survey also revealed notable trends and differences between countries. For instance, UK respondents exhibited earlier help-seeking behaviour and a higher rate of laparoscopic diagnosis, while US respondents were more likely to share self-tracked symptom and cycle data with their HCP and saw fewer HCPs on average before securing a diagnosis.

Respondents, based mainly in the UK, USA, Canada and Germany, were asked to share their experiences from their path to diagnosis, with many feeling they had been let down by healthcare professionals who often mistook endometriosis for what was “probably just a really bad period” – or even suggested to some patients “that it was psychosomatic”.

Among the shocking and heartfelt stories revealed by the survey’s respondents were:

  • “I was told all the negative stereotypes you can hear from misdiagnosed women: I’m imagining it, I should seek psychological help, the pain is not that bad.”
  • “I was often told to ‘come back when you want to get pregnant’ or that surgery was ‘too invasive’.”
  • “Prior to my diagnosis I thought it was in my head. Afterwards, the surgeon told me, it was everywhere and if I waited much longer I would have had to remove reproductive organs. I was fifteen.”
  • “After waiting nearly 15 years, I was diagnosed with endometriosis – something I already knew deep down, but to hear the diagnosis after waking up in the recovery room… I cried tears of relief from the validation.”
  • “[Tracking] helps me to validate my experience to my doctors. I can tell them that I have data points showing I experience daily pain.”
  • “We need more research so badly. I don’t want any more women to suffer in silence like I did.”

Audrey Tsang, CEO of Clue, said: “We constantly hear from our Clue community about how the healthcare system fails us when it comes to taking our menstrual and reproductive health experiences seriously – how it marginalises our pain, brushes off our symptoms, disregards our intelligence, and denies our agency.

“Our endometriosis survey results are another heartbreaking reminder of this reality.”

Endometriosis, which is estimated to affect 10 per cent of women and people with cycles globally, is one of the 21 different health conditions Clue users can enter a confirmed diagnosis for within the My Health Record feature of the app as part of Clue’s recently announced initiative to build the world’s largest data set linking menstrual cycle and symptom data to health conditions.

Clue’s dataset will be used in research projects scoped by researchers from top institutions. Some of the focus areas include improving early diagnostics for conditions like endometriosis and PMDD, which have an average diagnosis delay of seven to 12 years and 20 years respectively.

Many of the Clue survey respondents are participating in this research by contributing their de-identified data.

Tsang said: “Centuries of bias and blindspots in medical research have contributed to conditions like endometriosis being so under-served. From our survey, the need and potential for non-invasive, accessible options to help support diagnosis is clear.

“While we wish the healthcare system didn’t require so much self-solving on the part of women and people with cycles, we know that self-tracking and being able to present that data to a healthcare provider helps make what can otherwise feel like an invisible and lonely experience, visible and actionable.

“Because tracking provides data, that data provides insight, and insight enables agency when it comes to our health.”

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Cleveland Clinic launches new women’s health and research center

The programme aims to address women’s unique health needs during midlife and beyond

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From left: Cleveland Clinic CEO and president Dr Tom Mihaljevic, Maria Shriver and Dr Beri Ridgeway / Source: clevelandclinic.org

Cleveland Clinic has launched its new Women’s Comprehensive Health and Research Center, an initiative dedicated to helping women during midlife.

The center, which will focus on access, connectivity, education and research and innovation, aims to empower women to navigate their health journey with confidence and clarity.

Maria Shriver, founder of The Women’s Alzheimer’s Movement Prevention and Research Center at Cleveland Clinic, will serve as chief visionary and strategic advisor.

“I’ve always believed our nation needed a first-class comprehensive women’s health center, and now we have one,” said Shriver.

“Over the past several years, I’ve been honoured to work alongside so many talented and passionate doctors at Cleveland Clinic to bring this vision to life. This is a place for women at every stage of life where they will feel seen, will get the research they need, and the care they deserve, from their brains to their bones.

“I am thrilled that today the WAM Prevention and Research Center expands, as it deserves to.”

Dr Tom Mihaljevic, Cleveland Clinic CEO and president, said: “Maria’s unwavering commitment to raising awareness and driving meaningful change aligns perfectly with the mission of our new center.

“Her passion for advancing the quality of care for women is remarkable and will help us transform how we deliver care for women today and into the future.”

The population of women in midlife and in need of healthcare continues to grow. According to US Census Bureau 2020 data, more than 63 million women in the US are 50 years of age or older, and approximately 6,000 women enter menopause each day.

In addition, the Centers for Disease Control and Prevention reports 80 per cent of women aged 55 and older have at least one chronic condition, such as arthritis, asthma, cancer, cardiovascular disease, chronic obstructive pulmonary disease and diabetes, which strengthens the need for more comprehensive medical care for women in this stage of life.

The new Women’s Comprehensive Health and Research Center will bring together specialty care in various areas, including behavioural health, breast health, cardiovascular care, center for infant and maternal health, endocrinology, menopause, osteoporosis and metabolic bone density, wellness and disease prevention.

Through initiatives focused on streamlining appointment processes, enhancing outreach programmes and prioritising health equity, the center will seek to ensure that all women can readily access the care they need.

“Midlife is an important milestone and a time to empower women to address health issues and focus on future health,” said Dr Beri Ridgeway, chief of staff at Cleveland Clinic.

“Taking a holistic approach, including menopausal and hormonal health, reproductive health, mental health, chronic conditions and preventive care, is critical to optimise health outcomes.

“Our priority is to help women in this stage of life make educated decisions about their health and have access to the services they need to thrive, while also feeling seen, heard and supported.”

The center, Ridgeway said, will offer support groups and resources to help address health disparities, reach diverse communities and bridge gaps in health literacy.

The institution’s ultimate mission, she explained, is to advance research and innovation specific to women during midlife.

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Firm secures US$1.9m grant to support women entrepreneurs in Africa

eha Impact Ventures aims to support women-owned small- and medium-sized enterprises

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Evelyn Castle, chief executive officer at eHA Impact Ventures / Source: evelyncastle.com

The impact investing enterprise eHA Impact Ventures (EIV) has been awarded a US$1.9m grant from the non-profit organisation eHealth Africa (eHA) to support women entrepreneurs in Africa.

eHA’s board of directors approved the donation as part of its effort to “strengthen” healthcare delivery systems and support vulnerable populations.

The grant, the organisation said, will be deployed to “upscale” women-funded companies to improve the health and wealth of African women, their families and their communities.

The donation is hoped to address the US$42bn funding gap for women entrepreneurs in Africa and help female founders have better access to funding opportunities.

In addition, the funds are expected to support health interventions like the pre-screening of cervical cancer and improve delivery of blood and blood products to healthcare facilities.

“The grant will be instrumental in boosting the economic capacity of women across Africa by supporting high-impact women-owned businesses,” said Evelyn Castle, chief executive officer at EIV, who founded the firm in 2021.

“Furthermore, it will [help us] upscale funding, mentorship and training programmes to help women create thriving businesses that drive economic growth in their communities.”

My Le, board executive at eHealth Africa, said: “These donations could not have come at a better time as  women continue to struggle to meet up with both health and economic demands. Thus we are optimistic that the funds will go a mile in bridging fiscal gaps for women and other vulnerable groups to lead healthier lives.

“Supporting women will go a long way in not just improving their societal impact but also contribute immensely to sustainable development especially in the African region.”

Recognising women’s “vital” role in building strong health systems, Atef Fawaz, CEO of eHealth Africa, added: “We acknowledge the profound impact women have in strengthening healthcare systems, aligning with our vision at eHealth Africa.”

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Menstrual product wins innovation award in Switzerland

Egal’s innovation consists of a roll of pads that operates in a similar fashion to a toilet paper roll and comes in its own dispenser

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Penelope Finnie, chief executive officer at Egal

Pads on a Roll, a menstrual product that can be dispensed in public stalls similar to a toilet paper roll, has won a prestigious award at the Women’s Health Innovation Summit Europe in Basel. 

Each year the Women’s Health Innovation Summit (WHIS) helps promising start-ups raise their brand awareness and pitch their solutions in front of investors and industry leaders.

Egal, the company behind Pads on a Roll, has been honoured with this year’s Women’s Health Innovation award after the WHIS selection committee recognised the start-up as an innovative company poised to disrupt the European women’s health landscape.

“Egal Pads is so honoured to have been chosen for the Women’s Health Innovation award,” Penelope Finnie, Egal chief executive officer, told Femtech World.

“The other nine finalists were amazing companies run by wonderful people. The whole conference was a testament to the importance of the femtech movement.

“For us, it was particularly exciting as the EU is the next market we are focusing on. We hope that having period products available in stalls just like toilet paper is, will become the norm as it is necessary for equality.

“We also hope that by winning, it brings attention to this easily solved but long ignored issue,” Finnie added.

Egal’s innovation consists of a roll of pads that operates in a similar fashion to a toilet paper roll and comes in its own dispenser.

Egal aims to sell Pads on a Roll to universities and public schools

Each roll contains 40 pads and can be placed directly in stalls, unlike the typical tampon dispensers that often require money to access the products and are located outside the stall.

The pads are less expensive to maintain than products in vending machines because they are easier to refill, and require less space and packaging.

Research shows that 20 percent of girls in the US and UK have missed school due to lack of access to period products, with more than 90 per cent of menstruators having experienced jammed, broken or empty dispensers in public toilets.

Egal aims to solve this issue by selling Pads on a Roll to universities and public schools.

The Boston-based company has done pilots at various universities across the US and is hoping to develop a flushable version of the product in the future.

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