March is Endometriosis Action Month. You might have noticed the subtle word change from ‘Awareness’ to ‘Action’ here. This is because, whilst it’s super important that we raise awareness of endometriosis, what it is and the signs and symptoms, we also need to take action. By ‘taking action’ I mean that we take the opportunity to discuss endometriosis with our friends, family and loved ones so that just maybe someone might think - ‘Is this me?’ You can find out more about Endometriosis Action Month at Endometriosis UK. Ending endometriosis starts by saying it.
What is endometriosis?
Endometriosis is a common health condition that affects millions of women around the world. The condition occurs when the tissue that lines the uterus (the endometrium) grows outside of the uterus. Endometriosis most commonly affects the ovaries, fallopian tubes, and the tissue lining the pelvis. Endometriosis may also be found on the bowel and bladder. In rare cases, endometriosis can also affect other organs in the body, such as the lungs, brain, and skin.
Endometriosis is also a hormone condition and associated with menstruation, causing chronic inflammation and scar tissue formation. It is important to be aware however, that Endometriosis is far more than just causing pain during a period. It is an extremely debilitating condition that can impact on an individual’s physical and emotional wellbeing, fertility, relationships, work life and so much more.
How common is endometriosis?
It’s estimated that endometriosis affects around 1 in 10 women during their reproductive years1. This means that in the UK it is estimated that 1:5 women, and those assigned female at birth, are living with the condition2.
What causes endometriosis?
The exact cause of endometriosis is unknown3. However, there are several possible theories:
Retrograde menstruation: This is when the menstrual flow goes backwards into the fallopian tubes and pelvis instead of out of the body. Some tissue from the uterus is left behind and implants itself onto other organs in the pelvis.
Heredity: Endometriosis can run in families, so there may be a genetic predisposition for the condition.
Immune system disorder: This theory suggests that the immune system doesn’t recognise and destroy endometrial tissue growing outside the uterus, allowing it to thrive.
Environmental factors: This theory suggests that certain environmental toxins can affect the body and the immune and reproductive systems causing endometriosis.
Hormonal: Certain hormones, such as oestrogen, can promote the growth of endometrial tissue.
What are the symptoms of endometriosis?
The most common symptom of endometriosis is chronic pelvic pain, which may or may not be related to your menstrual cycle. The pain can range from mild to severe and may get worse over time. Other symptoms include:
- Pain during or after sex
- Pain with urination or blood in the urine
- Pain when with bowel movements
- Fatigue
- Excessive bleeding during your period
- Infertility
- Depression
If you’re experiencing any of these symptoms, contact your doctor.
What are the risk factors for endometriosis?
There are several factors that can increase your risk of developing endometriosis, including, having a family history of endometriosis, women who have not had children, starting your periods at an early age or having a late menopause, having an autoimmune disease, smoking or having a low body mass index.
If you think you may be at risk of endometriosis, it’s important to talk to your doctor. They can discuss your symptoms and recommend further testing to help you get a diagnosis.
How do you diagnose endometriosis?
Unfortunately, endometriosis can be difficult to diagnose. In part this can be due to lack of medical awareness of the condition. Sadly, many women’s experiences of getting a diagnosis are that they feel gaslighted and that their symptoms not taken seriously, often being blamed on having heavy and painful periods. These barriers to obtaining a diagnosis mean that it can take on average up to eight years in which to get a clinical diagnosis4. For many women this means frequent trips to see their doctor, feelings of helplessness and despair, and not knowing who to turn to. Becoming knowledgeable about endometriosis and how it impacts you, can help you to advocate to get the help you need. At the end of this article are some resources that will help you learn more about endometriosis and what it means for you. You might also find it useful to keep an endometriosis
symptom diary so you can clearly explain the symptoms you experience throughout your cycle.
When you see your doctor, they may suggest doing an examination and then refer you for further investigations and, if necessary, surgery. The 2017 National Institute for Health and Care Excellence Endometriosis guidelines5 state that laparoscopy may be necessary to determine a diagnosis of endometriosis. However, more recently, in 2022, the new guidelines published by The European Society of Human and Reproduction and Embryology6, agreed that a laparoscopy is no longer required for a definitive diagnosis. A diagnosis should be made on the assessment of your symptoms and by ultrasound scan or an MRI. If no endometriosis is seen on scan or MRI, treatment can still be prescribed to reduce your symptoms. You may still be recommended to have surgery, but the good news is, you may no longer have to wait to access much-needed treatment.
How is endometriosis managed?
Unfortunately, there is no cure for endometriosis, but there are ways of managing the symptoms that can be effective for many women.
Once a diagnosis has been made, your doctor will work with you to develop a care plan that is best for you. Your doctor may be able to refer you to one of the 74 endometriosis centres in the UK, where specialist doctors and nurses can help support you in managing your endometriosis (see resources).
The most common treatment for endometriosis is pain medications. This can include over-the-counter painkillers, which might be effective for some women with endometriosis, but others may require prescribed pain medication.
Hormone therapy is often used to treat endometriosis. It works by reducing the levels of hormones that are involved in the development of endometriosis. This can help to shrink the endometriosis lesions and reduce pain.
Surgery is sometimes used to treat endometriosis. This is usually only recommended if other treatments have not worked. Endometriosis surgery can involve the removal of the endometriosis lesions with lasers or heat.
Can I get pregnant if I have endometriosis?
If you have endometriosis, you may be wondering if it’s still possible to get pregnant. The short answer is yes – but endometriosis can make it more difficult to conceive and some women may require fertility treatment to help them conceive. Endometriosis causes fertility problems by affecting the ovaries, fallopian tubes and surrounding tissue.
If you’re trying to get pregnant, there are a few things you can do to increase your chances of success. First, it’s important to talk to your doctor about your endometriosis and what treatments are available to you. Making lifestyle changes can also help improve your chances of conceiving with endometriosis. These changes include reducing stress, maintaining a healthy diet and weight, and stop smoking.
What role does nutrition play in managing endometriosis?
A literature review published in February 2024 found that good nutrition may be helpful in managing endometriosis symptoms and pain. Particularly by reducing fat and increasing fibre. Meat consumption appeared to be associated with a higher risk of developing endometriosis and the anti-inflammatory properties of plant-based diets may benefit women with endometriosis. Vitamin D reduced pain and vitamins C and E appeared to significantly reduce symptoms7. However, more research is required until we can fully understand the association of nutrition and endometriosis, and any potential health benefits.
Does endometriosis disappear after menopause?
Some women with endometriosis find that their symptoms improve after menopause when their menstrual cycles stop. However, in other women, the condition may persist after menopause. Hormone replacement therapy may be effective in treating endometriosis after menopause, however, there is a possibility that oestrogen can reactivate endometriosis in a small number of women8.
In summary
Living with endometriosis can have a significant impact on your quality of life. As we have read, not only do women carry the burden of the condition itself, but they suffer from delay in diagnosis and difficulties in accessing timely diagnosis and management. As well as the physical symptoms Endometriosis can be a difficult condition to cope with emotionally, but you don’t have to go through it alone. Talk to your doctor about what options are available to you, and don’t hesitate to reach out for support. With knowledge and empowerment, the correct care and support, many women with endometriosis can manage their symptoms and live healthy and happy lives.
Resources:
Managing Endometriosis at work
An Employer’s Guide to managing endometriosis
References:
1. NICE (2023) Endometriosis. https://cks.nice.org.uk/topics/endometriosis/ last accessed 9/2/24
2. Endometriosis UK (2024) Endometriosis Facts and Figures. https://www.endometriosis-uk.org/endometriosis-facts-and-figures Last accessed 9/2/24
3. Hickley M et al (2014) Endometriosis. BMJ 348
4. Vishalli et al (2020) Diagnostic delay for superficial and deep endometriosis in the United Kingdom, Journal of Obstetrics and Gynaecology, 40:1, 83-89, DOI: 10.1080/01443615.2019.1603217
5. NICE (2017) Endometriosis: diagnosis and management https://www.nice.org.uk/guidance/ng73/evidence/full-guideline-pdf-4550371315. Last accessed 9/2/24
6. ESHRE (2022) Endometriosis Guideline. https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline Last accessed 9/2/24
7. Barnard ND, Holtz DN, Schmidt N, et al. Nutrition in the prevention and treatment of endometriosis: A review. Front Nutr. 2023;10:1089891. Published 2023 Feb 17. doi:10.3389/fnut.2023.1089891
8. Balance by Newson Health. Endometriosis and HRT. https://www.balance-menopause.com/menopause-library/endometriosis-and-hrt-factsheet Last accessed 9/2/24
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