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‘It made my symptoms worse’- how opioids are putting women with endometriosis at risk

Despite being more likely to become chronic users, women with endometriosis are still frequently prescribed opioids

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Carla Cressy was 14 when she began experiencing the first symptoms of endometriosis. Despite presenting with all the common signs of the disease, her diagnosis only came 11 years later.

“I was diagnosed with stage four endometriosis through a laparotomy, which by this time had led to frozen pelvis disease and infertility,” she explains.

“I had no other choice than to undergo a total hysterectomy forcing me into surgical menopause. This was following eight operations to try fix the irreversible damage caused by endometriosis.”

During this time and even before getting a formal diagnosis, Carla, like many women battling endometriosis, was prescribed opioids for pain relief.

“I was given bottles of morphine and told to take this amount and get on with it. I was suffering with horrible bowel symptoms and I was being given all these pain medications which only made my symptoms worse.”

Opioids, such as morphine, codeine and tramadol, work by activating an area of nerve cells in the brain and body called opioid receptors that block pain signals between the brain and the body. They are commonly prescribed to treat moderate to severe pain, including endometriosis pain.

In the US, nearly two-thirds of women newly diagnosed with endometriosis fill an opioid prescription within the first year.

But although they may be effective at temporarily reducing pain, there is no clear clinical evidence establishing opioids as an effective treatment option for endometriosis.

“Prescribing an opioid might be an easier option, but in the long term, it’s not helpful to the patient,” says Karolina Afors, a consultant gynaecologist at University College London Hospitals NHS Foundation Trust.

“Women with endometriosis have a four times greater risk of developing a chronic opioid use compared to women without the condition.

“Opioids are not what these young girls and women should be on in the long term, because it’s potentially putting them on a different path which they may not even be aware of.”

Carla, who knew little to nothing about opioids when she was given her first prescription, struggled with suicidal thoughts.

“Because I was on such a high dose and I was given all these tablets to get through my operations, I started feeling quite low,” she says.

“I was having suicidal thoughts and I realised that it was a side effect from the morphine. I was lucky I had my mum who supported me, but not everyone has that level of support.

“I think we need to make people aware of the risks and make sure they come for regular follow-ups. No one should be given these medications willy-nilly.”

Afors agrees. She thinks we should also address the lack of research and funding in endometriosis which, she says, is responsible for the disease being so poorly understood.

“We need need to find better treatment options. Yes, opioids have been around for a long time, and we understand how they can be used for pain management, but why don’t we try and find a cure for endometriosis or research new drugs?”

Venkatesh Subramanian, a consultant in obstetrics, gynaecology and reproductive medicine at King’s College Hospital, suggests a more holistic approach.

“Simply prescribing patients opioids and discharging them is not acceptable practice,” he says.

“I think we should focus on evidence-based treatments and have a more holistic view, adopting a multidisciplinary approach, getting pain management teams involved and liaising with dietitians when needed.

“There’s a huge lack of awareness and education around endometriosis so one of the things we should be doing, as clinicians, is counselling patients with regard to the different therapeutic options available.

“The aim should be to empower women to make informed decisions and become their own health advocates.”

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New survey to ‘amplify’ marginalised voices in healthcare decision-making

UK charities enter partnership to address gender gap and advocate for inclusive healthcare policies

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The gynaecological health charity Cysters and Endometriosis UK have announced a partnership to amplify women’s voice in healthcare decision-making.

Despite progress in healthcare data collection, there remains a gap in representing the experiences of marginalised groups, particularly for those impacted by conditions and diseases like endometriosis.

Decision-makers in Parliament and the NHS often rely on data and statistics to inform policy and resource allocation. However, these datasets may not accurately reflect the experiences of marginalised communities.

A recent report from Endometriosis UK that gathered data on the experiences of being diagnosed with endometriosis in the UK found that whilst the ethnicity of respondents who identified as ‘white’ was proportionate to the data collected in the Census 2021, the remaining data was not illustrative of the ethnic diversity of the UK, with 15 per cent of respondents choosing not to respond to the ethnicity question.

To address this gap and advocate for inclusive healthcare policies, Cysters and Endometriosis UK are launching a new survey initiative aimed at amplifying the voices of marginalised groups in healthcare decision-making.

“We know that the current statistics are not inclusive of all communities, particularly marginalised groups,” said Neelam Heera-Shergill, founder of Cysters.

“By encouraging those from marginalised communities to share their experiences through this survey, they will be helping us to advocate for the changes that are needed, backed by evidence from their communities.

“In addition to delving into the diagnosis journey for people of colour and the unique barriers they encounter. We aim for this research and findings to pave the way for additional funded research on all menstrual-related conditions affecting people of colour.”

The survey seeks to gather insights into the experiences of marginalised communities, particularly concerning conditions and diseases like endometriosis.

Participants are encouraged to share their experiences openly and honestly, knowing that their responses will contribute to shaping more inclusive healthcare policies.

Sarah Harris, a researcher at Cysters, said: “We urge everyone to participate in this survey and share it far and wide. Together, we can ensure that all voices are considered in the conversation surrounding healthcare policy and resource allocation.”

The survey is anonymous and takes approximately 15 minutes to complete. To participate, visit Delayed Diagnosis of Endometriosis Among People of Colour in the UK Survey.

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Menstrual care start-up launches period equity initiative across college campuses

The initiative is hoped to facilitate access to period care and educate students on the use of more sustainable products

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Cherie Hoeger, founder and CEO of Saalt

The US menstrual care start-up Saalt has launched a new initiative aimed at addressing period poverty and environmental sustainability.

The Period Equity Initiative aims to reduce 100 million tampons from the environment while combatting period poverty.

Institutions, including Harvard University, Vanderbilt University, Northwestern University, the University of Utah and the University of Nebraska, are already participating in the programme.

One in five female college students in the US have had to decide between buying period products and paying for other basic essentials like food and other bills according to a nationwide survey.

The initiative, a direct response to the demand for more units for student populations, underscores the issue of period poverty, which affects students across America, challenging the misconception that it is solely an “overseas problem”.

Saalt aims to make period care accessible and affordable through the subsidisation of reusable period products, such as cups, discs, and period underwear, to participating universities and their campus affiliates.

The project is hoped to not only facilitate access to period care, but also educate students on the use of more sustainable products, which are designed to be reused rather than discarded.

“Every day we hear from customers about how life-changing Saalt cups are for them,” said Cherie Hoeger, founder and CEO of Saalt.

“Creating period equity and managing the environmental impact created by disposables are pressing matters that demand urgent attention and innovative solutions.

“Through our Period Equity Initiative, we’re taking a proactive approach to tackle these challenges by leveraging our expertise and aligning with universities across America to make a big impact closer to home.”

The Period Equity Initiative, Hoeger added, furthers Saalt’s commitment to making period care more affordable, accessible and sustainable.

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Medical device start-up enters partnership with Bayer Switzerland

The collaboration is hoped to help “transform” gynaecological examinations

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The medical device start-up Aspivix has announced a partnership with Bayer Switzerland in an effort to “modernise” gynaecological procedures.

Aspivix has developed an innovative, suction-based cervical device designed as an alternative to the tenaculum, a surgical instrument commonly used in gynaecology for over a century.

The device aims to reduce pain and bleeding during transcervical procedures, including IUD placement.

Through the partnership with Bayer, Aspivix is now officially introducing Carevix in an effort to “transform” gynaecological examinations.

The collaboration is hoped to help bring the tool to market and offer women a more comfortable gynaecological experience, reducing the cases of pain associated with IUD procedures.

“We are excited to enter this partnership with Bayer (Schweiz) AG that truly emphasise the goal of empowering women to select the best contraceptive solution without worrying about potential pain and bleeding,” said Mathieu Horras, co-founder and CEO of Aspivix.

“The thorough research and clinical data behind Carevix guarantee a notable decrease in pain and bleeding, enhancing the experience of IUD adoption and placement, as well as various other gynaecological procedures for millions of women.”

The device, Horras added, provides an appealing alternative to the currently available tenaculum, filling an “important” unmet need.

Marco Gierten, Bayer Switzerland women’s healthcare lead, said: “As a globally trusted brand, Bayer remains committed to advancing solutions that provide significant benefits to patients.”

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