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What is endometriosis: Q&A with Endometriosis UK

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To mark Endometriosis Awareness Month, we sat down with the charity Endometriosis UK to discuss the invisible illness that affects 1.5 million women in the UK.   

  • What is endometriosis?

Endometriosis is a menstrual health condition affecting one in ten women and those assigned female at birth. The disease occurs when cells similar to those lining the womb are found elsewhere in the body. These cells behave like those in the womb building up, breaking down and bleeding, but unlike a period, the blood has nowhere to go. This can cause inflammation, pain and the development of scar tissue.

  • What are the symptoms of endometriosis? 

Common signs and symptoms of endometriosis include painful periods, chronic pelvic pain, pain on urination and bowel movements, fatigue and difficulties getting pregnant.

  • Why are these symptoms often ignored?

Symptoms are normalised as being “part of being a woman” or “just a bad period” and pain is dismissed as “you may have a low pain threshold”.

  • In the UK it takes approximately eight years to get a diagnosis of endometriosis. Why does it take so long?

There are a number of barriers that arise that contribute to this. Firstly, awareness of endometriosis is still too low, although improving, so someone with symptoms may not realise they have a medical problem and they don’t seek help.

Secondly, when symptoms are discussed with friends and family, they too might lack awareness and normalise the symptoms as “just a bad period”.

Thirdly, when someone with symptoms of endometriosis goes to their GP, they may have their pain and symptoms dismissed “you must have a low pain threshold” or not taken seriously.

In addition, some of the symptoms for endometriosis also occur with other conditions, so for example we know of women who were initially wrongly diagnosed with IBS (Irritable Bowel Syndrome) and later had endometriosis diagnosed.

Endometriosis UK has information on its website about getting diagnosed and advice on how to prepare for going to see your GP when you think you may have endometriosis.

  • How does the lack of research contribute to the hidden suffering of millions of women?

The historical lack of research into endometriosis means the cause has not yet been identified and there is no cure. There are treatments to manage the symptoms of endometriosis including hormonal treatment, surgery and painkillers, but unfortunately, they don’t work for everyone with the condition. Greater investment in research could help identify the cause and develop better treatments and hopefully one day a cure.

With the help of our volunteers, we raise awareness of endometriosis, and the issues that affect those living with it, among healthcare professionals, those with endometriosis and their families and colleagues, the public and the media. By developing clear policies, Endometriosis UK aims to influence national governments and healthcare providers to achieve the standards of care and treatment that those with endometriosis deserve.

  • How can the government help?

In the UK, there is national guidance on the diagnosis and management of endometriosis from the National Institute of Health and Care Excellence (NICE). All UK governments should ensure that NICE guidance is fully implemented in their respective healthcare systems and that steps are taken to measure and meet the demand for endometriosis care.

In Scotland, a women’s health plan was published last year which commits to doing this and work is underway on implementing the commitments made. In England, a women’s health strategy is currently in development and Endometriosis UK has asked the Department of Health and Social Care to commit to doing this.

The Welsh Government has just begun to develop a women’s health plan for  Wales and Endometriosis UK has been involved in a coalition of charities which is preparing a proposal women’s health which addresses endometriosis and will be presented to the Welsh Government later this year.

During the recent Endometriosis Action Month, Endometriosis UK launched a campaign to improve endometriosis care in the UK by asking for the NICE guideline on endometriosis diagnosis and management to be reviewed and updated. This is because, while the guideline was a step forward in endometriosis care, there are some important gaps including access to pain management, endometriosis outside the pelvic cavity and mental health support.

A new European (ESHRE) guideline on endometriosis also came out in February 2022 which includes new recommendations not covered by the NICE guideline, which was published in 2017.

For more information and support visit Endometriosis UK.

Sorina Mihaila is the editor of Femtech World. Sorina covers technology, research and innovation in women's health.

Q&A

Femasys founder Kathy Lee-Sepsick on entrepreneurship and the need for innovation in women’s health

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Kathy Lee-Sepsick, founder and CEO Femasys

Kathy Lee-Sepsick, founder and CEO of the biomedical company Femasys, opens up about her entrepreneurial journey and what nearly three decades of experience as a top medtech executive have taught her.

Could you tell us about your background and how you got into women’s health?

I spent 10 years in various leadership roles at medtech companies focused in the cardiovascular and orthopaedics specialties. During this time, I realised how underserved the women’s health area was in comparison and the available solutions for reproductive health needs, specifically in permanent birth control were unsuitable.

With inventions that I felt were revolutionary to address the unmet needs in critical areas of reproductive health, I made the decision to start Femasys in 2004.

What inspired you to create Femasys? 

I was inspired by my daughters and desire to create solutions that would offer women suitable reproductive health options in areas that have seen little-to-no innovation.

In addition to realising a widespread global need, I personally faced the same challenges as others when I encountered inadequate options for my own reproductive care. I believe Femasys has the potential to create lasting change.

How would you describe Femasys in a few words?

Femasys is a female-founded and led biomedical company focused on empowering women worldwide as they seek solutions throughout their reproductive journeys by providing revolutionary products that are affordable and accessible.

How would you describe the impact and importance of your work?

Technological advancements in female reproductive health are long overdue, which has driven our focus to develop in-office, accessible, and innovative options. The work we are doing in infertility and permanent birth control are game-changers and have the potential to transform the landscape for women, couples, and their families.

Our work is so important because no one else is focused in advancing these much-needed technologies, which has the opportunity to impact women for generations to come.

People may be thinking ‘How is Femasys transforming women’s healthcare worldwide?’. What’s your response to that?

The product solutions we are advancing address issues women are facing worldwide. We are dedicated to not only helping women here in the US but around the globe as we work to amass country approvals for our product initiatives.

As a small emerging company, the allocation of resources and funds for this effort demonstrates our commitment.

What is the best part about being an entrepreneur in this space? 

It is hard pressed to find a space in healthcare that is this neglected, so the best part is knowing every day that the work we are doing has the potential to make such a significant impact worldwide. Executing on our mission is a constant responsibility that bears immeasurable satisfaction as we achieve our goals.

What is your greatest achievement since establishing Femasys?

My greatest achievement since establishing Femasys is making our products available to women in the US and other countries outside the US as we gain regulatory approvals of our important technologies.

This includes FemaSeed for the next generation of artificial insemination, FemVue for diagnosis a woman’s fallopian tubes with ultrasound, and FemCerv for obtaining a comprehensive tissue sample for diagnosis of cervical cancer.

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‘Tamagotchi with a twist’- the device you didn’t know you needed

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Tired of apps? Enter IMMI, the period tracking device you didn’t know you needed. 

The IMMI tracker is a device that can learn to track and monitor your menstrual cycle without an app or smartphone.

The gadget, which doesn’t require internet connectivity, is suitable for any geographies, communities and ages and promises to positively impact women’s sense of agency, body literacy and overall self-esteem and mental health. Founder and CEO, Sarah Cottee, tells us all about it below.

How would you describe IMMI in a few words?

IMMI is building simple, private, fashionable menstrual tracking consumer products that don’t require internet connectivity to work; think tamagotchi that also warns you when your period is due!

What inspired you to create IMMI? 

I was working in private philanthropy, funding social enterprises throughout South East Asia and living in Manila, where I saw firsthand the lack of access to education that women and girls had.

Around the same time I had come off hormonal birth control and was on my own journey of getting to know my body and cycle.

I was very concerned with the privacy limitations of the period tracking apps, so I set out to create a solution that mitigated my worries, and was accessible to women and girls everywhere. 

Sarah Cottee, founder and CEO of IMMI

My passion for women’s health, however, runs in the family. My grandmother, an Irish midwife living in Liverpool, taught women in the local community about cycles and fertility, and worked closely with the University of Birmingham on early, pioneering research they were doing in this space. 

As you were building IMMI, what was the need you identified?

It was two fold; the average age that girls download period tracking apps is 21, and considering they start their periods around age 12, this is a huge gap where they’re not learning about their body, their emotions and their mental health in relation to their cycle.

Secondly, I kept hearing that people who were using apps were either fed up with how much data they were being asked to enter and experiencing “app fatigue”, or concerned with their data being stored on the cloud.

Consumers wanted something low-lift, smart, but that enabled them to keep their data private.

What makes IMMI different?

It doesn’t require an app and all the data is locally stored on the tracker itself, however it’s still “smart”.

We’ve increased the memory so it stores each cycle data, and our algorithm continuously calculates a rolling average. This means that your tracker learns your unique average cycle length making the period predictions more accurate over time.

You also have the ability to “reset” the tracker and clear its memory if needed. With our new design, you can attach it to your keys, purse or bag so that it’s always with you.

People may be thinking ‘How is IMMI helping women better understand their bodies’. What’s your response to that?  

IMMI is designed to empower women by simplifying how they track and understand their menstrual cycles. We started by asking, “Why is it easier to know the date on the calendar than the day of your menstrual cycle?”

Our goal is to make tracking your menstrual cycle as straightforward as checking the time and date. By providing a tool that integrates this aspect of health into daily life, IMMI empowers women to recognise their body’s own unique signals, and gain a deeper understanding of themselves throughout their reproductive years.  

How would you describe the impact and importance of your work?

In a time where women’s health data is being weaponised, providing an option that puts privacy first is vital. IMMI allows women to track and learn about their cycle without any concerns that their data might be shared with a third party. 

Furthermore, we worked with one of the UN Agencies to conduct a pilot and see the impact of IMMI on girls in emerging markets who don’t have access to accurate, trustworthy information, leaving them vulnerable to, social exclusion, dropping out of school or unplanned pregnancy.

Over the six months of the trial, the proportion of women and girls who said they knew the expected start date of their period leaped from 58 per cent to 81 per cent in the Republic of Moldova, and from 47 per cent to 82 per cent in Burkina Faso.

Girls reported a significant decrease in anxiety from having this information accessible, and others said they were finally able to talk to their mum about this topic. 

What is the best part about building IMMI and being an entrepreneur in this space? 

Meeting incredible innovators! I get to meet the most inspiring men and women all over the world who are pushing forward the female health agenda and providing solutions that are truly novel and useful, allowing women to lead a more integrated and empowered life.

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Q&A

#FromBerlinWithSolidarity: period tracking app Clue on reproductive rights and data privacy

Femtech World sat down with Clue chief product officer, Rhiannon White, to find out more about the company’s latest campaign

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To mark the one-year anniversary of the overturning of Roe v Wade, the German period tracking app Clue has launched a powerful campaign.

From Berlin With Solidarity, a passion project by American Clue users and advertising creatives Amy Char, Heather Patterson, and Ashley Milhollin, aimed to bring attention to the very real fear of reproductive surveillance faced by women in US states where the loss of reproductive rights means people are afraid their health data could be used to prosecute them for seeking abortion.

The campaign, which featured bold billboards in the US and humorous posters in Berlin, was, in co-CEO Audrey Tsang’s words, directed at sparking a conversation about the importance of privacy rights for equal healthcare.

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