Everything You Need to Know About Endometriosis
Endometriosis is a long-term and life-disrupting condition that affects millions of women around the world.
In fact, the World Health Organisation states that 10% of women worldwide have endometriosis – that’s over 190 million people.
However, endometriosis isn’t a very well-known or well-understood condition, and often endometriosis flare ups are mistaken for another condition entirely.
In this article, we will delve deep into this common condition, covering what endometriosis feels like, as well as how to diagnose and treat endometriosis.
Continue reading, below, to find out more about endometriosis flare ups and how to spot the signs.
What is endometriosis?
Endometriosis is the name given to the condition where tissue, which is similar to the tissue in the lining of the womb, starts to grow in other parts of the body. For example, this endometrial tissue can appear on the ovaries, fallopian tubes, inside your tummy, in or around the bladder or bowel, or on a Caesarean scar, and make it harder to get pregnant.
However, while the tissue in your womb can leave your body as a period each month, endometrial tissue has nowhere to escape to. This can cause endometriosis flare ups, which includes inflammation, pain and the growth of scar tissue.
Who’s at risk of endometriosis?
Endometriosis can affect anyone born with ovaries, from the time they start their period. In fact, Endometriosis UK reports that this condition affects 1.5 million women in the UK – which is a similar number as those affected by diabetes in the UK.
And while endometriosis flare ups are especially common among women in their 30s and 40s, this condition can affect women of any age – though it is much rarer after the menopause.
What causes endometriosis?
Currently the exact cause of endometriosis is not known, though there are several theories worth noting, including:
Retrograde menstruation: This is when menstrual blood flows back into the pelvic cavity, rather than being expelled. The blood contains endometrial cells from your uterus lining, which may stick to your pelvic walls and organ surfaces, potentially causing endometriosis flare ups.
Genetics: According to the NHS, the condition tends to run in families and can affect people of certain ethnic groups more than others. Researchers at the University of Oxford also shared strong evidence that the shared genetic basis for endometriosis does run in families.
Immune system problems: The different endometriosis stages may also be caused by a separate immune system condition. The body is unable to recognise and destroy the endometrial tissue, even when it’s causing endometriosis flare ups.
Surgical scar complications: Medical professionals have also theorised that endometrial cells may attach to scar tissue during stomach surgery, such as with a C-section. In theory, these cells would then continue to grow through the different endometriosis stages.
Hormonal imbalance: Some research has made the link between high oestrogen levels and endometriosis, especially with a condition called ‘oestrogen dominance’. This is when the level of oestrogen outweighs the level of progesterone in your body, leading to a hormonal imbalance.
What are the main signs of endometriosis?
While every person’s experience is different, there are some common endometriosis symptoms to look out for.
To break down what endometriosis feels like, Mr Rowan Connell, consultant gynaecologist at Benenden Hospital, has outlined the most common symptoms:
Pelvic pain: Pain often starts as a dull ache in the lead-up to a period and worsens when bleeding begins. You may also experience endometriosis ovulation pain, if there’s tissue on an ovary – this causes mid-cycle pain on one side, or perhaps down your leg, when an egg is released.
Pain during sex: You may be suffering an endometriosis flare up if you experience pain during and/or after intercourse. This is due to potentially pulling, stretching, or irritating internal adhesions, caused by endometriosis scar tissue.
Heavy periods: With thicker endometrial tissue growing in more places, you will likely experience long and heavy periods. Sometimes, there may be bleeding between periods. If you notice any of these symptoms, it’s important to see your primary care clinician or your GP about your period.
Bowel and urinary problems: As endometrial tissue is sometimes found on the bowel, rectum and bladder, this can cause painful bowel movements or urination, and occasionally bleeding. The inflammation can also lead to endometriosis bloating, spasms in the digestive tract, and diarrhoea, which may be mistaken for IBS or IBD.
Tiredness and depression: Endometriosis can cause tiredness, lethargy and low mood, such as depression. This is partly due to the unpleasant symptoms but also because endometriosis flare ups prompt your immune system to work overtime.
Problems conceiving: Although it doesn’t usually block the fallopian tubes, endometrial tissue around the reproductive organs can make it harder for sperm to reach the egg. This means endometriosis and fertility issues can be linked, so it’s important to speak to your GP as soon as possible, if you suspect you have endometriosis.
How is endometriosis diagnosed?
Whether you think you’re experiencing endometriosis ovulation pain or you’re worried about endometriosis and fertility, it’s a good idea to share your symptoms with your primary care clinician, as soon as possible.
However, it’s important to note that a diagnosis can take time, as the symptoms of an endometriosis flare up can be quite similar to other conditions. For example, painful endometriosis belly or bloating can often be confused with other gut health issues, such as Irritable Bowel Syndrome.
That said, even though it can be a long and sometimes stressful experience, you should start the process to get endometriosis diagnosed as soon as possible.
In your few first appointments, your primary care clinician may ask you about your experience with endometriosis flare ups and what endometriosis feels like, in your own words. If possible keep a pain and symptom diary of when your symptoms occur alongside mapping your current menstrual cycle, this will help your primary care clinician to identify any correlation. From there, they can start discussing appropriate treatment plans to help endometriosis symptoms and the pain they can cause.
Your primary care clinician may also refer you to a specialist for a laparoscopy, which is the only way to test for endometriosis accurately. This is an operation where a camera is passed through a small cut in your tummy, so the surgeon can have a look for endometrial tissue and find out the severity of your condition.
How to treat endometriosis
While there is no outright cure for endometriosis, there are ways to treat endometriosis symptoms and improve your quality of life. Some of the most common ways to help endometriosis include:
Painkillers: Anti-inflammatory medication, such as ibuprofen, can be tried to see if they offer any endometriosis pain relief, which are available in pharmacies. However, it’s important to tell your primary care clinician if you’ve been taking painkillers for months and it’s still not helping your endometriosis symptoms.
Hormone treatment: You can also try hormone treatment for endometriosis pain relief. By limiting or stopping your production of oestrogen, you can potentially shrink endometrial tissue and help with endometriosis pain. However, this treatment has no effect on adhesion and will not solve endometriosis fertility issues.
Surgery: In a much more direct method for treating endometriosis, surgery can be used to remove or destroy endometrial tissue. This can help with endometriosis symptoms and provide much-needed pain relief. However, there is risk with any surgical procedure, so it's important to discuss this treatment option with your primary care clinician in detail first.
There are several factors that determine the best way to treat endometriosis for you. This includes your age, main symptoms, whether you want to get pregnant, and your thoughts on surgery. In terms of age, for example, symptoms may improve the closer you get to the menopause, reducing the need to get invasive surgery.
Explore more about endometriosis pain relief via Endometriosis UK.
How can Benenden Health help with endometriosis?
If you’re concerned about managing your endometriosis symptoms, endometriosis flare ups or endometriosis fertility complications, you can make an appointment to see your primary care clinician. Alternatively, if you're a Benenden Health member, you can call our helpline for medical advice from a qualified UK-based GP, 24 hours a day, 7 days a week. Learn more about our 24/7 GP Helpline service.
Endometriosis UK also offers support, information and a community for those affected, through their website. You can read about endometriosis on the NHS website too.
To find out more about women’s health, including women’s hair loss, ovarian cancer, and what happens to your breasts as you age, visit our women’s health hub.
Medically reviewed by Cheryl Lythgoe in July 2024.
