e-petition debate on endometriosis and polycystic ovary syndrome

Endometriosis

Endometriosis is a condition where tissue that is similar to the lining of the womb grows elsewhere in the body. Most commonly this is in the fallopian tubes and on the ovaries, but it can affect an individual’s bowels, bladder and other parts of the body.

Symptoms of endometriosis are varied and may be worse during menstruation. The NHS website provides the following information about symptoms:

The main symptoms of endometriosis are:

• pain in your lower tummy or back(pelvic pain) – usually worse during your period
• period painthat stops you doing your normal activities
• pain during or after sex
• pain when peeing or pooing during your period
• feeling sick, constipation, diarrhoea, or blood in your pee during your period
• difficulty getting pregnant

You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through your clothes.

For some women, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.[1]

According to Endometriosis UK, endometriosis affects 10% of women and those assigned female at birth in the UK.[2]

There is currently no cure for endometriosis but treatments that may be offered include painkillers, hormone treatments such as the contraceptive pill, and surgery.

More general information on endometriosis is provided in the following sources:

• NHS, Endometriosis
• Endometriosis UK, Understanding Endometriosis
• Royal College of Obstetricians and Gynaecologists, Endometriosis, 2018

Polycystic ovary syndrome

The NHS website provides the following information about polycystic ovary syndrome:

Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman's ovaries work.

The 3 main features of PCOS are:

• irregular periods– which means your ovaries do not regularly release eggs (ovulation)
• excess androgen – high levels of "male" hormones in your body, which may cause physical signs such as excess facial or body hair
• polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs (but despite the name, you do not actually have cysts if you have PCOS)

If you have at least 2 of these features, you may be diagnosed with PCOS.[3]

Verity, the PCOS charity states that the condition is “very common, affecting 1 in 10 (10%) women and AFAB [assigned female at birth] individuals, although this can vary from country to country.”[4]

Symptoms of PCOS can include irregular periods, difficulties conceiving, excessive hair growth and weight gain. The cause of PCOS is unknown but it is associated with abnormal levels of hormones in the body.

There is no cure for PCOS but treatments include lifestyle changes, medicines and in some cases, surgery:

If you have PCOS and you're overweight, losing weight and eating a healthy, balanced diet can make some symptoms better.

Medicines are also available to treat symptoms such as excessive hair growth, irregular periods and fertility problems.

If fertility medicines are not effective, a simple surgical procedure called laparoscopic ovarian drilling (LOD) may be recommended.

This involves using heat or a laser to destroy the tissue in the ovaries that's producing androgens, such as testosterone.

With treatment, most women with PCOS are able to get pregnant.[5]

More information on PCOS is provided in the following sources:

• NHS, Polycystic ovary syndrome
• Royal College of Obstetricians and Gynaecologists, Polycystic ovary syndrome (PCOS): what it means for your long-term health, 2015
• Verity, What is PCOS

The petition

The petition states that both Endometriosis and PCOS affect around 10% of women worldwide, but these conditions are under prioritised in terms of research and funding. It calls for more funding to research the causes and potential treatments for the conditions:

Endometriosis and PCOS are two gynaecological conditions which both affect 10% of women worldwide, but both are, in terms of research and funding, incredibly under prioritised. This petition is calling for more funding, to enable for new, extensive and thorough research into female health issues.

Many women seldom get the medical attention they require, or frequently have their symptoms miscalculated.

Due to personal experience, we are aware that the average time taken for a full diagnosis for endometriosis is 7 1/2 years in the UK.

A cure for these conditions has not yet been found.
It is important to us to start a conversation, to hopefully achieve funding to eventually find a cure for these conditions, or find more legitimate ways of treating symptoms.[6]

The petition is now closed, it received 101,900 signatures. The charities Endometriosis UK and Verity have both expressed support for the aims of the petition and have encouraged people to ask their MP to attend the debate.[7]

The Department of Health and Social Care published a response to the petition in August:

The Government recognises the importance of research into endometriosis and polycystic ovary syndrome. The Government is funding a broad range of research through its funding organisations.

The Government is aware of and sympathises with the hardships faced by women who experience severe symptoms from conditions such as endometriosis and polycystic ovary syndrome. While treatment is available, NHS England highlight that symptoms for both conditions vary widely, including in terms of severity. It is therefore important to seek clinical advice if women notice symptoms about which they have concern.[8]

The response provides an overview on how medical research is funded in the UK, and provides examples of ongoing studies looking at these conditions:

The Government funds medical research through the National Institute for Health Research (NIHR) and UK Research Innovation (UKRI). In the last five financial years to 2019-20, the NIHR and UKRI have awarded £8.52m for research into endometriosis and £6.60m for research into polycystic ovary syndrome. This includes a wide range of projects from basic science through to applied health research into diagnosis, treatment and service delivery.

Examples of research includes: a project, hosted by the NIHR School for Primary Care Research, examining what happens in primary care when women consult with endometriosis-like symptoms in order to start addressing delays in diagnosis and treatment and lead to improvement in care for women; and a randomised controlled trial exploring the use of two different treatment options for women with polycystic ovary syndrome whose eggs do not release from their ovaries to determine the most effect effective drug, or combination of drugs, needed to ensure women are offered the best available care with minimum side effects and spared the need for more invasive and costly fertility treatments. Other Government-funded research includes studies to investigate new therapeutics, the genetic basis for polycystic ovary syndrome, clinical prediction models of whether surgery will be successful for endometriosis, pain management trials and research to improve reproductive outcomes for women with these conditions.

The NIHR engages and involves patients, carers and the public in all the processes by which research is identified, prioritised, designed, conducted, evaluated and disseminated to improve the reach, quality and impact of the funded research. Women with endometriosis and polycystic ovary syndrome play a vital role in the research identified above.

The NIHR welcomes funding applications for research into any aspect of human health, including endometriosis and polycystic ovary syndrome; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.[9]

The response also sets out information on training and clinical guidance on these conditions:

To support women with endometriosis, all obstetricians and gynaecologists have been trained in the diagnosis, investigation and management of the condition, which is specifically listed as a topic in the core curriculum for obstetrics and gynaecology.

NHS England expects providers to adhere to NICE guidance regarding the diagnosis, management and treatment of endometriosis available at https://www.nice.org.uk/guidance/NG73. NHS England also recommends the European Society of Human Reproduction and Embryology (ESHRE) guidelines on the management of women with endometriosis https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx. The guidance offers best practice advice on the diagnosis and treatment of women with suspected endometriosis as well as the effectiveness of medically assisted reproduction for endometriosis-associated infertility. It also provides information on the management of patients in whom endometriosis is found incidentally (without pain or infertility).

Polycystic ovary syndrome is a multifaceted, polygenic condition that often starts in adolescence and may have lifelong effects - through reproductive years to post-menopause. While there is currently no “cure”, there are several options for treatment and ways that individuals can alter lifestyle to ameliorate symptoms. Those who are overweight tend to have worse symptoms and long-term consequences and are less likely to respond to treatment.

There are many effective treatments and a large body of research looking at evidence-based therapy - whether for symptoms of hyperandrogenism, menstrual cycle disturbance or infertility. There are a number of consensus papers outlining the best approach for investigation and management.

NHS England advise that the UK patient support organisation Verity provides resources for patients as does the Women’s Network pages of the Royal College of Obstetricians and Gynaecologists’ website.[10]

The Government highlighted the development of a new Women’s Health Strategy in its response to the petition.

The Government launched a consultation on a future Women’s Health Strategy in March 2021. The consultation ended in June and received over 100,000 submissions. The Government is analysing the responses and has said it will publish a response to the consultation in the autumn and the strategy later this year.10F[11]

[1] NHS, Endometriosis, overview, January 2019

[2] DHSC, More women urged to come forward to shape women's health strategy, May 2021. Those “assigned female at birth” may include trans men and non-binary individuals.

[3] NHS, Polycystic ovary syndrome, February 2019

[4] Verity, What is PCOS? [accessed 15 October 2021] Those “assigned female at birth” may include trans men and non-binary individuals.

[5] NHS, Polycystic ovary syndrome, February 2019

[6] UK Government and Parliament Petitions, Increase funding for research into Endometriosis and PCOS

[7] Endometriosis UK, Endometriosis UK and Verityjoin force to increase research funding into endometriosis and PCOS, 4 October 2021

[8] UK Government and Parliament Petitions, Increase funding for research into Endometriosis and PCOS

[9] UK Government and Parliament Petitions, Increase funding for research into Endometriosis and PCOS

[10] UK Government and Parliament Petitions, Increase funding for research into Endometriosis and PCOS

[11] PQ UIN 33936 Health services: females, 22 July 2021