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Author Topic: Endometriosis-related infertility and fertility preservation  (Read 123 times)
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11 April 2022 - by Zaina Mahmoud
Endometriosis is seen as a 'modern mystery' in gynaecology, with its causes not yet fully understood. Prevalent in up to ten percent of people of reproductive age, it is one of the most common gynaecological pathologies. Studies suggest up to 50 percent of infertile people have endometriosis, and 30-50 percent of those with endometriosis are infertile. Despite this association between endometriosis and infertility, a causal relationship has yet to be established. While March was endometriosis awareness month, medical professionals should always be engaged in increasing awareness and education on the various options available for fertility preservation and planning, rather than concentrating efforts to a single month each year.

Those diagnosed with endometriosis are exceptionally worried about the impact on their fertility, as well as the impact of endometriosis treatment on their fertility. Oocyte cryopreservation (more often known as egg freezing) is the procedure of choice for individuals with endometriosis, promoting reproductive autonomy by increasing fertility options, including when to pursue pregnancy. Recognising the impact of age on egg quality, younger people wanting to preserve their potential future fertility may wish to seek egg freezing. Additionally, egg freezing is a good option for them because it does not impact future ovarian reserves. Therefore, fertility preservation should be integrated as an essential component in ovarian endometriosis management.

While the National Institute for Health and Care Excellence (NICE) guidelines outline surgical management for endometriosis should include pre-operative ovarian reserve testing, they do not recommend egg freezing for endometriosis. Importantly, these guidelines have not been updated since they were first published in 2017. Egg freezing has come a long way over the last decade: technological advances have resulted in excellent survival rates and clinical outcomes are similar to those with fresh eggs. Recognising the need to ensure guidelines are kept updated, Endometriosis UK has launched a campaign to rectify these gaps, and evaluate current best practice and evidence. This is especially timely, given that the European Society of Human Reproduction (ESHRE) released comprehensive guidelines, including over 100 recommendations on diagnosis, treatments for pain and infertility, and other aspects of management.

Increasingly, it has become clear that there is a need for timely diagnosis and management of endometriosis. Recently published research reveals these as key to increasing the likelihood of success during IVF treatment. Dr Katrina Moss and her team found that an endometriosis diagnosis prior to starting IVF resulted in fewer cycles and a shorter time frame needed to report a birth. Conversely, undiagnosed endometriosis prior to starting IVF was more likely to result in the use of intrauterine insemination (IUI), with more IVF cycles and more time needed to report a live birth. These findings conflict with the most recent ESHRE guidance, which recommends IUI, unless there is male factor infertility, as well as with the 2017 NICE guidelines which argue against the use of IUI in mild endometriosis.

Endometriosis is not listed as a research priority by the UK National Institute for Health Research or any other major funder. This may contribute to the fact that, to date, there are no published data on the clinical outcomes of fertility preservation in individuals with endometriosis. Despite this, fertility specialists must change the way we manage endometriosis patients, especially since there are well-documented significant delays in receiving a diagnosis of endometriosis. In addition to diagnosis delays, there are 63 endometriosis centres across the UK, with huge variance in patient capacity. Where people with a suspected or documented diagnosis of endometriosis present, their concerns must be taken into management decisions, with reproductive counselling an integral part of management and care. If fertility preservation is a key concern, then egg freezing should not be delayed, ideally undertaken, prior to surgery to maximise the number of eggs obtained, and later IVF success rates. It is known that endometriosis patients who underwent cystectomies prior to egg freezing had lower success rates.

However, the decision to offer fertility preservation options falls onto Clinical Commissioning Groups (CCGs). There are 63 endometriosis centres across the UK, with huge variance in patient capacity. In essence, similar to the infamous IVF postcode lottery (see BioNews 1120) individuals with endometriosis face significant differences in access to fertility treatment. The All-Party Parliamentary Groups on endometriosis noted that fertility preservation support is severely lacking in many areas, with some CCGs drawing boundaries between ovarian removal due to endometriosis and cancer, funding treatment for the latter but not the former. As a result, most people wanting to undertake fertility preservation must do so privately.

In line with a reproductive justice lens, egg freezing must be practically accessible, rather than merely theoretically. Currently, the adopted approach results in stratified and stratifying reproductive healthcare. This is remedied through recognition of egg freezing for endometriosis as a valid treatment plan, thereby enhancing reproductive autonomy. Medical professionals have a duty to inform themselves on the possibilities of fertility preservation as a therapeutic approach, through enhanced and up-to-date training in the diagnosis, investigation and management of endometriosis that takes into account patients' concerns. Those diagnosed with endometriosis already have to deal with chronic pain and other debilitating symptoms, as well as a medical system that has long neglected their concerns. Hopefully, Endometriosis UK's campaign will ensure that everyone is able to access necessary healthcare, without needing to travel and pay.
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