Endometriosis

Endometriosis is a condition where tissue similar to the inner lining of the womb (endometrium) is found elsewhere, usually in the pelvis around the womb ovaries and fallopian tubes. It is a chronic and often debilitating condition that affects millions of people worldwide, including approximately 1 in 10 women in the UK – which means that around 1.5 million women in the UK have endometriosis¹.

The length of time it takes to diagnose endometriosis in the UK can vary depending on a number of factors, including the severity of symptoms, the availability of medical resources, and the experience of healthcare providers. In general, it can take an average of 8 years to get a definitive diagnosis of endometriosis².

One reason for this delay is that the symptoms of endometriosis can be similar to those of other conditions, such as pelvic inflammatory disease, irritable bowel syndrome, and ovarian cysts. Endometriosis can only be definitively diagnosed through laparoscopic surgery, which is a minimally invasive procedure that allows doctors to examine the pelvic organs and look for the presence of endometrial tissue. This procedure can only be performed by a specialist, and there may be a waiting list for this type of surgery.

Additionally, there may be a lack of awareness of endometriosis among healthcare providers, which can lead to misdiagnosis or delayed diagnosis. In recent years there have been efforts to increase awareness of endometriosis and improve access to specialised care for women with this condition. In the UK, in 2017, the government launched a Women’s Health Taskforce, which included a focus on endometriosis. The Taskforce developed an action plan to improve the care and support for women with endometriosis, which included:

1. Improving awareness and education about endometriosis among healthcare professionals, women, and the public.
2. Improving access to diagnosis and treatment for endometriosis.
3. Developing guidelines for the management of endometriosis.
4. Supporting research into the causes, diagnosis, and treatment of endometriosis.

There are also several patient-led organisations in the UK, such as Endometriosis UK and SpeakEndo and Pain UK, that provide support and advocacy for people with endometriosis. These organisations work to raise awareness of the condition, provide information and resources to patients and healthcare professionals, and advocate for better access to care and research.

Overall, it’s important for women who are experiencing symptoms of endometriosis to seek medical attention and discuss their concerns with a healthcare provider. If endometriosis is suspected, a referral to a specialist may be necessary to get an accurate diagnosis and develop an appropriate treatment plan.

What treatment is available for endometriosis in the UK

While there is currently no known cure for endometriosis, there are a number of treatments available to help manage the symptoms and improve the quality of life for those living with the condition.

In the UK, the National Health Service (NHS) provides a range of services for people with endometriosis, including diagnosis, treatment, and support. The NHS has established specialist endometriosis centres to provide multidisciplinary care to patients with complex cases of the condition.

The treatment plan in the UK depends on the severity of the symptoms, the location and extent of the endometriosis, the age and health of the patient, and the patient’s preference.

1. Pain relief: Over-the-counter pain relievers such as paracetamol, ibuprofen, or aspirin can be used to help manage the pain associated with endometriosis.
2. Combined oral contraceptives (COCs): COCs are a form of hormonal contraception that contain both oestrogen and progestogen. They can be used to manage the symptoms of endometriosis, including pain and heavy menstrual bleeding.
3. Progestogens: Progestogens are synthetic versions of the hormone progesterone. They can be used to manage the symptoms of endometriosis by suppressing ovulation, reducing the growth of endometrial tissue, and thinning the lining of the uterus. May be administered as tablet, injection, implant or as an intrauterine system (IUS).
4. Gonadotrophin-releasing hormone (GnRH) analogues: GnRH analogues are synthetic versions of the hormone that regulates the menstrual cycle. They work by suppressing the production of oestrogen, which can help reduce the growth of endometrial tissue and relieve symptoms of endometriosis.
5. Testosterone derivatives: Danazol and Gestrinone (dimetriose) work by suppressing the production of oestrogen and progesterone, which can help reduce the growth of endometrial tissue. They are rarely used these days.
6. Surgery: Laparoscopic surgery can be performed to remove the endometrial tissue, cysts, and adhesions that have formed as a result of endometriosis. In some cases, a hysterectomy may be recommended.
7. Alternative therapies: Complementary therapies such as acupuncture, herbal remedies, and dietary changes can be used to help manage the symptoms of endometriosis. However, it is important to discuss these therapies with a healthcare provider before trying them.

It’s important to note that there is no one-size-fits-all approach to treating endometriosis, and that the best course of treatment will depend on individual circumstances. It’s important to work closely with a healthcare provider to develop a personalised treatment plan that takes into account the patient’s needs and preferences.

What clinical studies are currently being performed in endometriosis?

Endometriosis UK lists the following ongoing Clinical Trials:

• ESPRIT2: Effectiveness of Laparoscopic Removal of Superficial Peritoneal Endometriosis for the Management of Chronic Pelvic Pain
• REGAL: Recurrence of Endometriosis: Clinical and Cost-effectiveness of Gonatropin Releasing Hormone Analogues with Add-back HRT Versus Repeat Laparoscopic Surgery
• DIAMOND: Deep Infiltrating Endometriosis: Management by Medical Treatment Versus Early Surgery

References and further reading:

1. Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ 2022;379:e070750. doi: 10.1136/bmj-2022-070750
2. All Party Parliamentary Group. Endometriosis in the UK: time for change, 2020.

National Institute for Health and Care Excellence (NICE) – Endometriosis: Diagnosis and Management

NHS Choices: www.nhs.uk/conditions/Endometriosis/Pages/Introduction.aspx

Endometriosis UK: www.endometriosis-uk.org

SpeakEndo: https://www.speakendo.com/

Pain UK: https://painuk.org/

Fertility Network UK: http://fertilitynetworkuk.org/

British Society for Gynaecological Endoscopy: http://bsge.org.uk/

British Society for Gynaecological Endoscopy Accredited Centres: http://bsge.org.uk/centre/

UK Governement Women’s Health Taskforce: https://www.gov.uk/government/publications/womens-health-strategy-for-england/womens-health-strategy-for-england