In aid of Endometriosis Awareness Month, we wanted to play our part in raising awareness and understanding of the condition to help reduce the current average diagnosis time of 7.5 years. Recent research by Endometriosis UK shows that 54% of people do not know what endometriosis is, increasing to 74% of men.
Our Fertility Nurse Kate Pleace has answered some common questions and signposted to additional resources for further support.
What is endometriosis?
Endometriosis is a condition affecting around 1 in 10 women of reproductive age in the UK that occurs when tissue normally found inside the uterus grows in other parts of the body. Endometriosis can grow in any part of the body, the most common areas are the ovaries, fallopian tubes, or the bowel. As hormones change during the menstrual cycle the tissue growing in the other areas can break down and bleed which may cause pain and inflammation, particularly around the time of a woman’s period.
What causes endometriosis?
The cause of endometriosis is unknown, although endometriosis UK suggests it could be down to the following:
- Retrograde menstruation – when you have your period, some of the endometrium (the lining of the womb) flows backwards out through the fallopian tubes and into the ovaries and other areas of the abdomen
- Genetic causes - where endometriosis may run in families and could be more likely if other female family members also have the condition
- Lymphatic or circulatory spread – the idea that endometriosis travels around to different locations in the body via the lymphatic system
- Immune dysfunction – for some women, their immune system is not able to fight off the endometriosis
- Some theories suggest that environmental causes may also play a part
Unfortunately, much more research is needed. An Inquiry by the All-Party Political Group APPG on Endometriosis in 2020 has urged the Government to invest in research to find the cause of endometriosis, better treatment, management, and diagnosis options.
What are the symptoms and signs of endometriosis?
The symptoms of endometriosis include:
- Chronic pain, particularly around the time of a period
- Fatigue, tiredness, or depression
- Pain during or after sexual intercourse
- Pain passing urine or when opening bowels
- Constipation, diarrhoea or bloating, particularly around the time of a period
However, as many as 20-25% of women who have endometriosis do not have any symptoms.
When should you suspect you have endometriosis?
If you have any of the above symptoms or have concerns you should see your GP for further help and advice. Endometriosis UK also has a useful information pack you can download to find out more about the condition.
How is it diagnosed?
On average it takes 7.5 years from onset of symptoms to get a diagnosis. A doctor can take your medical history and perform a pelvic examination to help identify any abnormalities. Imaging such as a pelvic ultrasound or MRI can also help, however the only definitive way to diagnose endometriosis is by having a laparoscopy. This is a minor operation where a small camera is inserted in the pelvis allowing the surgeon to see the pelvic organs and look for signs of endometriosis.
A survey of more than 10,000 people in February 2020 by the All-Party Political Group on Endometriosis found that 58% of people had visited the GP more than 10 times before diagnosis. 53% went to A&E with symptoms before diagnosis.
How does endometriosis affect fertility?
It is important to remember that many women with endometriosis can conceive naturally. There is an association with fertility problems, although the cause is not fully established. It is believed that 30–50% of women with endometriosis will also have infertility.
If you are trying to conceive you may be offered surgery to remove the endometriosis. Fertility treatment such as IVF is also an option for women with endometriosis who are struggling to conceive.
How can it be managed?
Although there is no known cure for endometriosis, there are a variety of treatments available to help reduce symptoms and manage the condition, which can be accessed through your GP. Although there is limited evidence, some women have found that alternative therapies such as acupuncture and lifestyle changes such as a healthy diet and exercise can be a beneficial alongside medical treatment. Accessing good support from family, friends or relevant organisations can also be helpful in the long-term.
Where can you go for further support
If you think you might have symptoms of or have been diagnosed with endometriosis and are trying to conceive, you can discuss this with your GP or you can book a video appointment with one of our expert fertility clinicians. Our fertility experts provide medical advice and guidance at a time convenient for you including evenings and weekends. There are no waiting lists and you do not need a GP referral. Endometriosis UK is a charity that supports women with the condition, they have more information and support on their website, they also offer a helpline and community support.
ESHRE (European Society of Human Reproduction and Embryology) have produced a patient guide on endometriosis, which can be a really useful source of information.
More about the author…
Kate Pleace is a senior women's health nurse specialising in fertility and menopause. She has worked in fertility since 2007, spending over 6 years at Bourn Hall fertility clinic before working independently.
Written on 16.03.21 Review by 16.03.24