Endometriosis

What is endometriosis?

• Endometriosis (also called ‘Endo’) is a disease which is affects women, girls and those registered female at birth
• It is thought to affect 1 in 10 women and girls, which makes it as common as diabetes or asthma
• It can affect people of all ages

Endometriosis is when tissue that is similar to the lining of the womb  is found elsewhere in the pelvis, on the internal organs, and sometimes other areas in the body.

Endometriosis spots or ‘lesions’ cause localised irritation, bleeding, and inflammation. Over time, scarring and adhesions can develop from the chronic inflammation caused by these lesions. Adhesions (bands of scar tissue) can make organs inside the abdomen stick together and sometimes stop them working properly. They can also cause pain.

Other symptoms of endometriosis can include bloating, fatigue, bowel and bladder problems, rectal bleeding, aching back, legs, pain during sex and internal exams, and infertility. Hormone fluctuations often affect the symptoms. It can take a long time to get a diagnosis.

Endometriosis is a chronic (long-term) health condition but there are treatments available which can help to manage symptoms, such as hormone therapies and different types of pain-relief.

Surgery might also be offered, where ablation (burning the damaged tissue away) or excision (cutting out the damaged tissue) may be used. Outcomes from all of these different treatments can vary from patient to patient.

More information about endometriosis symptoms and treatments can be found on the Endometriosis Cymru website and the NHS Wales website here.

What are we calling for?

Our overall aim is to improve the quality of life for people living with endometriosis

Endometriosis is thought to affect 1 in 10 women and girls, which makes it as common as diabetes or asthma.

Even though it is common, there is a lack of awareness of endometriosis and some of the symptoms may be disregarded as normal and ‘part of being a woman’.

It can take longer for women to seek help and when they do, it can take also take a very long time to get a diagnosis, and start effective treatment, due to a lack of training and knowledge of healthcare professionals. 

Because symptoms associated with endometriosis are so often normalised or dismissed, it can be difficult to seek and find support. This is just one of the reasons why there is such a long delay between symptoms starting and getting a diagnosis and treatment. Another reason is inadequate training about endometriosis amongst healthcare providers.

In Wales, the issues with endometriosis care and research are extensive

• Patients with severe endometriosis should be referred to a specialist centre for the condition. Currently, there is only one endometriosis specialist centre available on the NHS in Wales (based in Cardiff) for well over 150,000 women. Referrals from other Welsh health boards to this centre are largely rejected, which goes against NICE guidance, and forces women to pay privately (which for many, is not possible). This results in much needed healthcare becoming a ‘postcode lottery’.
• Globally, there is a general lack of awareness amongst public and healthcare professionals alike, along with very limited research.
• The lack of both research and understanding about the condition contributes to problems reported by many of our members, like ‘medical gaslighting’. This is where patients describe being made to feel like they’re imagining their symptoms. Another problem FTWW members have encountered is myths like ‘severe period pain is normal’, which can add to diagnostic delays. Research undertaken in 2018 by Cardiff University showed that it takes around 8 years and 26 GP appointments to get a diagnosis of endometriosis in Wales, which is more than anywhere else in the UK.
• Currently laparoscopic excision surgery is considered the gold-standard treatment for endometriosis. However, there are long waiting lists for the specialist centres, often extending into years.
• Endometriosis can be difficult to identify and adequately treat, which can lead to repeated surgeries and disease progression, so there needs to be much more research and training for gynaecologists across Wales to avoid this.
• A recent report by Endometriosis UK showed that 94% of those with endometriosis in Wales would have liked psychological support alongside surgical treatment and medical care but were not offered it, compared to the UK average of 90%.
• For some patients, having endometriosis isn’t a problem, and they don’t have many symptoms. For others, it can cause debilitating physical symptoms, including chronic pain and organ dysfunction. Some patients find themselves no longer able to socialise, work, or retain relationships, and some also experience infertility as a result of the disease. Sometimes, patients report experiencing psychological distress, anxiety, and depression as a result.

What have we achieved?

Our campaign activity to improve the lives of those with endometriosis is extensive. Some of our achievements are outlined below:

Endometriosis stories

Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.

We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.

Useful links and documents