Our Fertility Matters 2023 | The Endo Foundation

Our Fertility Matters.

Our 2023 Campaign

Together, we can forge a path towards a future where individuals with Endometriosis no longer face inequality, misunderstanding, or isolation, but instead receive the rights, understanding, and care they rightfully deserve.

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I want to freeze my eggs due to both endometriosis and PCOS. This will give me the option of having a hysterectomy if my suffering ever becomes too much for me to handle. I could then put my eggs into a surrogate and still have viable offspring. I've given this a lot of thought, and it is only money that holds me back.

Anonymous

Join our 2023 Campaign as we advocate for reproductive empowerment, ensuring that all those affected by Endometriosis can make informed choices when it comes to their fertility.

In our recent research, we delved into the personal experiences of individuals living with Endometriosis and its profound impact on fertility. The study encompassed a substantial sample size of 1,100 respondents, providing valuable insights. Astonishingly, an overwhelming majority of 70% expressed deep-seated apprehension concerning their ability to conceive in the future.

Among the respondents, a significant 40% were unable to fulfil their desired family plans due to the challenges posed by Endometriosis. Distressingly, over 40% had attempted to conceive for a continuous period of 12 months or more, but without success. It is disheartening to note that 60% of these individuals had received advice from their healthcare providers to pursue pregnancy as a means to alleviate their symptoms.

Equally concerning is the fact that merely 25% of the participants were informed about the potential risks to their fertility before undergoing surgical treatment for Endometriosis. This highlights the crucial gap in knowledge and communication between healthcare providers and patients, depriving individuals of essential information necessary to make informed decisions.

These findings shed light on the profound emotional toll and significant reproductive challenges faced by those affected by Endometriosis. Addressing these issues requires comprehensive support, improved patient education, and enhanced communication between clinicians and their patients.

What change do we want to see?

Endometriosis is one of the leading causes of female infertility, as it can result in pelvic adhesions, tubal blockages, and ovarian dysfunction, rendering natural conception challenging. Furthermore, it currently takes on average between 7-9 years to reach a diagnosis. This delay results in a limited time to explore options for preserving fertility.

We kindly request the Integrated Care Board (ICB), the government, and those in influential positions to consider the following measures as part of our advocacy efforts:

Acknowledge the unique challenges faced by individuals with Endometriosis, particularly those at risk of fertility loss, those with severe disease, and those with a low ovarian reserve.

Allocate resources and funding to support fertility preservation treatments, such as oocyte cryopreservation and embryo cryopreservation, for those at risk of fertility loss, those with severe disease, and those with a low ovarian reserve due to Endometriosis.

Collaborate with reproductive health specialists and The Endometriosis Foundation to develop guidelines and protocols for assessing eligibility, counselling, and providing necessary medical interventions to individuals seeking fertility treatments. To especially provide support to those who have/are experiencing infertility and those that are involuntarily childless due to Endometriosis.

To promote and support the integration of various medical disciplines to provide holistic and comprehensive care for individuals with endometriosis.

Enhance education and awareness surrounding Endometriosis among healthcare professionals, as well as the general public about the importance of early detection and timely diagnosis to facilitate prompt access to fertility preservation options.

Invest in educational programs, training initiatives, and awareness campaigns to help reduce misconceptions, promote early diagnosis, and facilitate timely interventions for individuals with Endometriosis.

To allocate resources and funding towards research initiatives focused on Endometriosis, fostering innovation and progress in the field to advance our understanding of the condition, develop improved treatment options, and ultimately enhance the quality of life for those affected.

What have we done so far?

In our ongoing campaign, we have made significant strides to raise awareness and advocate for individuals living with Endometriosis. Here are some of our notable achievements thus far:

Research: We have conducted comprehensive research that delves into the personal experiences of individuals affected by Endometriosis, specifically exploring its profound impact on fertility. This research provides valuable insights and supports our advocacy efforts.

Storytelling Filming Sessions: To amplify the voices and experiences of those affected by Endometriosis, we organised storytelling filming sessions. These sessions captured personal stories, shedding light on the challenges and realities faced by individuals with Endometriosis, particularly concerning fertility issues.

CEO Letter to Integrated Care Boards: To advocate for improved access to fertility preservation treatments, our CEO has personally written to all Integrated Care Boards across England, urging them to consider the importance of providing access to these treatments for individuals with Endometriosis, recognising the significant impact it can have on their reproductive options and overall well-being.

Endometriosis All Party Parliamentary Group: We have secured a date in September, 2023 to present our data to The Endometriosis All Party Parliamentary Group. This opportunity allows us to present our data and findings to key decision-makers and policymakers, raising awareness about the challenges faced by individuals with Endometriosis, and advocating for necessary changes in policy and support.

Partnerships: We are proud to announce our partnership with The Fertility Show. This collaboration provides us with a valuable platform to exhibit and offer information and guidance to individuals with Endometriosis on their journey to parenthood. By participating in The Fertility Show, we aim to reach a wide audience and engage with individuals who may be seeking support and information regarding fertility and Endometriosis. Through our exhibit, we provide accessible resources, educational materials, and guidance to empower individuals with knowledge and help them make informed decisions.

These achievements demonstrate our commitment to making a tangible difference in the lives of individuals affected by Endometriosis. By conducting research, amplifying personal stories, engaging with policymakers, establishing partnerships, and advocating for improved access to fertility preservation treatments, we are working towards creating a society that recognises and addresses the unique needs and challenges faced by those living with Endometriosis.

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