Understanding Endometriosis, the signs to look out for, and when & how to seek help.
Endometriosis (pronounced en-doh-me-tree-o-sis) is a common yet widely under-recognised condition affecting more than 1 in 10 women, girls, and those assigned female at birth, usually of reproductive age (from their first period to the menopause). However, it can also affect people before or after menstrual life.
You may be more likely to develop Endometriosis if a close relative, such as a mother or sister has it.
Endometriosis symptoms can sometimes improve by themselves, but they can also progress over time.
For some people, the condition can carry a lot of uncertainty and symptoms which can have a significant impact on a person's quality of life, affecting school attendance and the ability to pursue a career.
The symptoms can impact fertility and relationships and can often result in feelings of isolation and depression.
In severe cases, the condition can result in the loss of normal hormone activity and loss of reproductive function, leading to early onset menopause and infertility.
In the more extreme cases, Endometriosis can impact on kidney, bladder, bowel and lung function, and there is currently no cure. But that's not to say there aren't ways that can help.
Click here to find out more.
It currently takes on average between 7-9 years to be diagnosed with Endometriosis in the UK. This is unacceptable!
In 7 years a student completes an entire cycle of school.
We believe everyone should have access to accurate, transparent, and trustworthy information, especially when it comes to making decisions about their bodies. Which is why we have tailored information to help guide you through your Endometriosis journey.
The signs to look out for
The most common symptom of Endometriosis is pelvic pain. This pain is usually felt in the lower abdomen and lower back. It may extend to the rectum, hips, and legs (sciatic pain).
Other symptoms include
Changes in menstrual flow
Pain when opening the bowel or passing urine
Fatigue (extreme tiredness)
Pain during or after sexual intercourse
Difficulties getting pregnant
We have tailored information on Endometriosis and the signs to look out for which you can read here.
The causes of Endometriosis remain unclear and there is currently no cure. Although there are several theories circulating (some dating back centuries), none fully explain the exact cause of Endometriosis or why it happens.
There has however been links to several factors which may contribute to its development, such as genetics, problems with the immune system, toxins in the environment, and surgery complications to name a few.
Ultimately Endometriosis is poorly understood. There is still more to be done to raise awareness and much research needed into developing new and effective treatments, a cure, and more importantly, finding out why and how the condition occurs and what causes it.
How is it diagnosed?
Diagnosing Endometriosis often requires intimate examinations, assessments, and referrals. The diagnosis itself can be challenging because there isn't a simple test to check for Endometriosis.
The symptoms can also be similar to those of several other health conditions, such as Irritable Bowel Syndrome, Appendicitis or Crohn’s disease, which can often make it difficult for doctors to diagnose Endometriosis. To make matters more challenging, many of these other conditions can also co-exist with Endometriosis.
At present, the only way to definitively diagnose Endometriosis and its stage of progress, is by undergoing laparoscopic (keyhole) surgery. This is an invasive procedure.
Diagnosis and treatment for Endometriosis is best carried out by a gynaecologist with a specialist interest in Endometriosis. This is because not all gynaecologists are familiar with Endometriosis. Furthermore, not all surgeons are trained specifically in diagnosing and treating the condition.
A history of symptoms, a pelvic exam, ultrasound scan and MRI may help highlight the likelihood of Endometriosis, however laparoscopic surgery is currently the only way to conclusively diagnose the condition.
We have tailored information on Endometriosis and the tests you may find helpful to determine a diagnosis which you can read here.
Am I too young to have Endometriosis?
Lots of people will experience period pain and other symptoms which may not necessary be caused by Endometriosis, but that’s not to say young people cannot develop Endometriosis.
Because of the many myths and misinformation surrounding Endometriosis, some doctors believe young people cannot develop the condition, however this is simply not true.
We have tailored information for young people with suspected or confirmed Endometriosis which you can read here.
When should I seek help?
If you have noticed changes around your menstrual cycle, or if your periods are unusually painful and you are experiencing symptoms that are stopping you from attending school or work or taking part in day-to-day activities, this is NOT normal.
There is a chance you might have Endometriosis, or it could be the cause of something else. It’s a good idea to make an appointment and discuss this with your General Practitioner (GP) as early as possible.
We have tailored information to provide guidance and tips on how to get the most from your GP which you can read here.
What treatments are available?
Endometriosis symptoms can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, dietary changes, and alternative therapies such as acupuncture. Hormone therapy treatments to limit, help regulate or temporarily stop your periods may also benefit.
For more severe cases, treatment of the Endometriosis may need surgical intervention, if other treatments are not effective.
These treatments cannot necessarily cure Endometriosis, but they may help reduce pain, prevent, help regulate or limit periods, and potentially enable you to live as active as possible.
We have tailored information on the treatments available which you can read here.
We know first-hand it may not always be straightforward in knowing where to turn to for help, which is why we have provided a step-by step guide detailing when and how to seek medical advice to help you along your Endometriosis journey.
If you suspect you might have Endometriosis, it is important to first seek advice from your General Practitioner (GP). Your GP is your first port of call, and they will usually advise you to try pain relief medications, such as paracetamol and NSAID such as ibuprofen or mefenamic acid.
Your GP may also recommend trying hormone therapy treatments, such as the combined contraceptive pill, the Mirena intra-uterine System (IUS), the contraceptive injection, or progesterone pills, to limit, help regulate, or temporarily stop your periods.
If hormone treatments have not worked or if your doctor suspects you might have Endometriosis, it is important you are referred into secondary care.
This may be a gynaecologist situated at your local hospital with a specialist interest in managing mild – moderate Endometriosis, or they might be located further afield.
Your gynaecologist will usually carry out a physical examination and arrange several tests. Where appropriate, these tests may include blood tests, an ultrasound scan, MRI, and various other imaging scans.
For some people, these tests can be a helpful way to look for ovarian cysts and any visible signs of Endometriosis, and to also help rule out other conditions.
Your gynaecologist may also suggest a laparoscopy to look inside your abdomen and assess the severity or remove the Endometriosis.
If your gynaecologist suspects you may be suffering with later stages (severe) Endometriosis, this may be suggested by assessing your symptoms combined with imaging scans or confirmed by undergoing surgery. Your gynaecologist should refer you to an accredited BSGE specialist Endometriosis centre or clinic.
In tertiary care you should have access to the following specialist doctors - all of which have a specialist interest in Endometriosis
An Endometriosis nurse
A Colorectal surgeon
A pain management team
Advanced tests and imaging equipment
Endometriosis specialist doctors and adolescent gynaecology care services are limited, and some services or centres may not always be local.
This should not prevent you from accessing this care.
Finding an Endometriosis specialist
An Endometriosis specialist is someone whose primary focus is of managing Endometriosis, someone who understands the condition and the ways in which to treat it. This may be a doctor based at your local hospital, or they may be further out in a specialised Endometriosis centre.
A specialist is prepared to work with you to understand your needs and decide together on a treatment plan which may work best for you.
A good specialist would not hesitate to refer you to another professional who may be more advanced in treating Endometriosis to ensure you get the greatest level of care.
Finding expert help early on is an important step to ensuring that you get the care and support you need, preventing delayed or misdiagnosis, poor treatment, and inadequate care.
Why it's important to seek specialist help
Endometriosis can be seen from clear lesions to pink, red and sometimes dark brown and black patches. These lesions may not always be seen on the surface where instead they can be buried deep beneath various tissues or organs. Therefore, this type of operation requires a high level of skills and expertise as it can be difficult to diagnose by a non-specialist.
Dedicated nurse specialist's
If you become unwell between appointments, most Endometriosis specialists provide patients with an advice line they can call for help. Advice lines are usually run by Endometriosis nurse specialists who are available to provide support in a time of need.
Get in touch with your specialist and find out the name and contact details of your specialist teams dedicated nurses.
The NICE guidelines
The National Institute for Health and Care Excellence (NICE) provides guidelines covering the diagnosis and management of Endometriosis. These guidelines aim to provide clear advice for medical professionals on what action to take when people with symptoms first present in healthcare settings.
You can access the NICE guidelines on Endometriosis here.
A BSGE accredited centre
Across the UK, there are several accredited Endometriosis centres provided by The British Society for Gynaecological Endoscopy (BSGE). These centres offer complex surgery for those with both suspected or confirmed severe (later stages) Endometriosis; defined as deep infiltrating Endometriosis or recto-vaginal Endometriosis.
You can access the BSGE website and find your nearest centre here.
Facts about Endometriosis
Endometriosis is not an infection
Endometriosis is not contagious
Endometriosis is not cancer