These are the signs of endometriosis you should really know about - Plus, how to treat it
Imagine if every time you had your period, you had to put up with not just cramps but bent-double, can’t-get-out-of-bed, off-the-scale-severe pain? For the 1.5 million people in the UK dealing with endometriosis –affecting roughly 10% of women – there’s no need to imagine.
Despite the fact that endometriosis impacts the lives of millions of women– and is recorded as the second most common gynaecological condition in the UK – it can still take up to 8 years to get a diagnosis, according to Endometriosis UK. Yes, really.
Worse yet, 62% of 16-24-year-old women still don’t know what it is, per data by Fertility Plus. This, among many reasons, makes understanding the signs of endometriosis all the more important.
What is endometriosis?
'Endometriosis is a condition where cells, like the ones in the lining of the womb, are found elsewhere in the body,' explains Emma Cox, CEO of charity Endometriosis UK. 'Each month, like the cells in your womb, these endometriosis cells build up, then break down and bleed.
'But, unlike the cells in the womb that leave the body as a period, this blood has no way of escaping.' The result is inflammation and the formation of scar tissue [which can cause agony]. 'It can be a debilitating condition.'
The most common symptom is chronic, often debilitating, pelvic pain, adds gynaecologist Dr. Amit Shah, co-founder of Harley Street clinic Fertility Plus, and you can also experience intense menstrual cramps, a heavy flow and pain during intercourse.
How long does an endometriosis diagnosis take?
As mentioned, it can take up to eight years to get a diagnosis for endometriosis. To add, an investigation involving over 10,000 of those dealing with the condition found that 58% had visited their GP 10 or more times before receiving a diagnosis, while 53% had to go to A&E with symptoms before they got it. Overwhelmingly, they reported their entire lives had been affected by the disorder. Nearly 90% said they would have liked access to support for the psychological impact, but none were offered it.
That's partly because of a persistent refusal to acknowledge the condition's severity. ‘Myths in our society about endometriosis are rife,' says Faye Farthing, Campaigns and Communications Manager for Endometriosis UK.
'Women are often on the receiving ends of comments like “It’s just a bad period,” “get on with it,” or are accused of attention-seeking or having a weak pain threshold when, in reality, it is a condition that can have a huge impact on all aspects of a person’s life, including their education, career, relationships, and their physical and mental health.’
What are the signs of endometriosis?
As endometriosis is a condition which causes cells — like the ones in the lining of the womb — to grow elsewhere in the body, symptoms vary from woman to woman.
Most commonly, the signs of endometriosis include:
Pelvic and lower back pain
Painful bowel movements
Urinary urgency issues
This is where things get even more complicated. Endometriosis symptoms have a great deal of overlap with many other conditions, which is perhaps part of the reason why it takes so long to get diagnosed.
'Delayed diagnosis is a significant problem for many women with endometriosis leading them to years of unnecessary distress and suffering,' says Professor Mark Baker, Director of the Centre for Guidelines at NICE. 'The condition is difficult to diagnose as symptoms vary and are often unspecific.'
Heavy periods, clotting, spotting between periods, irregular periods, fatigue, depression, disrupted sleep and infertility are just some of the endometriosis symptoms to look out for. Plus, according to Mr Chris Mann, consultant gynaecological oncologist and laparoscopic surgeon for The Endometriosis Clinic, the four Ds of pain:
Dismenorea (painful periods)
Dysparauna (painful intercourse)
Dyschezia (painful bowel movements)
Dysuria (painful urination)
Endometriosis pain can often be so severe it stops you in your tracks.
'Many women will also experience pelvic pain throughout the month, that typically builds around 7-10 days before the period starts, and around the time of ovulation,' he adds. And he’s not referring to your standard cramping.
'It’s like being hit in the pelvis with a sledgehammer,' says yoga instructor Vickie Williams, who has suffered from endometriosis symptoms since she started her periods, 16 years ago. 'It’s deep and sharp, and takes your breath away. It can leave you unable to move – even to get painkillers.'
What causes endometriosis?
When it comes to the causes of endometriosis, rather unsatisfactorily, no-one really knows. It's hard therefore to identify who’s at risk as the answer is potentially every woman.
It can present at any age too and, to make matters worse, endometriosis symptoms can range from the mild to the severe to the non-existent, meaning you could be living with endometriosis without realising it.
Here are several theories of what causes endometriosis:
Though there is not total scientific consensus about what causes it, this is the dominant working theory. This means the 'backward passage of menstrual blood through the fallopian tubes and into the pelvis,' explains Adam Balen, Professor of Reproductive Medicine and Surgery at Leeds Fertility.
Not a cause, as such, but if a first-degree female relative has endometriosis, you’re more likely than the general population to have it.
Endometriosis tissue particles could travel in the bloodstream, carrying the condition to other areas of the body such as the eyes, brain, diaphragm and lungs.
A process where one cell type changes into another – usually in response to inflammation. According to Endometriosis UK, it would explain how endometriosis cells appear in the body, as well as the presence of such cells in women with no womb.
Issues with immunity
Some experts think that women with endometriosis are unable to fight off the cells. Many women with the condition seem to have reduced immunity in the face of other issues – although this could be a result of endometriosis.
One theory goes that certain environmental toxins, such as dioxin, can affect the immune and reproductive systems and cause endometriosis. Some research shows that animals who were exposed to high levels of this toxin developed endometriosis – but this has not been shown to be true via human studies and so should be taken with a large grain of Maldon.
How serious is endometriosis?
Endometriosis has been a relatively un-talked about women’s health issue, meaning millions of women across the rest of the world are still struggling daily — often in silence — with the pain and suffering that endometriosis can bring.
But, thanks to an increasing number of people speaking up and sharing their experiences of endometriosis symptoms, that is slowly changing. (Alexa Chung, who has it, described it as an 'invisible hellmare' to her four million Instagram followers.)
Research by the BBC, involving more than women affected by the condition, reported 'most' said it has negatively affected their career, sex life, education and mental health, with many relying on prescribed painkillers on a monthly basis. 50% even said they had experienced suicidal thoughts.
Emma Cox, CEO of Endometriosis UK said of the results: ‘This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.’
‘The potentially devastating impact this condition can have on people’s physical and mental health cannot be overstated. [...] Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time,' she said.
Minister for Women’s Health, Caroline Dinenage, added: ‘Too often across society women's bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough'.
Endometriosis UK is calling on the Government to act, highlighting the fact that the condition costs the UK £8.2bn a year in treatment, loss of work and healthcare costs.
Endometriosis treatment: Can it be cured?
While getting a diagnosis often takes some time, says Professor Mark Baker, Director of the Centre for Guidelines at NICE, once it has been diagnosed, 'there are effective treatments available that can ease women’s symptoms.'
That's not to say that the condition can be alleviated, wholesale. 'There's no cure and it can be difficult to treat,' states the NHS website – except for the extreme and life-altering step of choosing a hysterectomy. But surgeries — both smaller and larger — designed to remove growths from the affected areas are offered on the NHS. GPs might also offer painkillers, the pill and the mirena coil to help with the pain.
Endometriosis doesn’t always show up on an ultrasound or MRI, so the only true way to know for a fact if a woman has it is through keyhole surgery, where a small incision is made in the abdomen or pelvic area and a camera is inserted.
'It is a case of reducing and alleviating the severity of symptoms,' says Cox. And not going through it alone. 'We have local support groups across the country to give those affected by endometriosis the opportunity to meet and share their experiences. We also have a helpline and online community.'
Williams agrees on the importance of staying connected: 'It can be hard to stay positive and motivated when you’re deep in an endometriosis flair-up. The condition can be incredibly isolating.'
Research published in the International Journal of Women’s Health identified an elevated risk of anxiety and depression in women with endometriosis.
'I’ve found a strong community on Instagram. We share ideas of what might help with symptoms. We may all have the same disease, but it affects everyone differently – and should be treated that way,' she adds.
The following treatments might help.
'Go to a specialist endometriosis centre for a laparoscopy (where a camera is inserted into the pelvis via a small cut near the navel) and biopsy,' Mann says.
'This will give a histological confirmation of the condition and the stage it is at. In the hands of an experienced endometriosis specialist, around 60-70% of cases can be operated on at the same time.'
Other options include hormone treatments that place the body into a menopausal state (oestrogen is the hormone that encourages endometriosis to grow)
A systematic review by Cochrane researchers found evidence that Chinese herbal medicine can relieve symptoms of endometriosis.
‘Take time to nurture yourself,’ Williams stresses. ‘Endometriosis can lower the immune system and give you chronic fatigue, plus being under stress aggravates the condition and makes symptoms worse.’
Studies have shown yoga can reduce pain and improve quality of life for those living with endometriosis.
'Moving my body with yoga has made a huge difference,' says Williams. 'I no longer have the side effects of medication or the severe period pain of endometriosis.'
Some of those tips being shared on social media involve making changes to your diet to alleviate symptoms. For nutritionist Angelique Panagos, who experienced heavy and painful periods, bloating, and fatigue for around 18 years as a result of her endometriosis, and had difficulty in conceiving, tweaking the ingredients on her plate made an overwhelming difference.
'Women have periods every day but, for those of us with endometriosis, they can be debilitating,' she says. 'But periods are like a taboo subject in the UK – so we just think what we’re going through is normal. It shouldn’t be such a silent condition. By changing my lifestyle – including my diet – I’ve been able to manage my symptoms. I no longer dread my period.'
So, what does an endometriosis diet look like? Well, it will be different for everyone – listen to your body and what works for you.
Foods to eat to help with endometriosis symptoms:
Such as dark green leafy vegetables, brown rice and low-GI fruits, like apples and pears. 'Most of us only eat 15g per day,' Panagos says. 'Aim for 35-45g.'
That means essential fats, including those found in avocado, olive oil and oily fish, like sardines and mackerel. 'Omega 3s have been shown to alleviate pain,' Panagos says. 'Include some into your diet every day for a compounding effect.'
Vitamin D-rich foods
While largely generated from sun exposure, there are small amounts found in mushrooms and eggs. The Department of Health and Social Care recommends that adults and children over 4 take a daily supplement containing 10 micrograms of vitamin D throughout autumn and winter, and year round, if you have darker skin.
'Magnesium is beneficial for cramping,' Panagos says. 'You can also run magnesium oil on your belly or soak in a bath with magnesium salts.' Cacao is a good source of this mineral: try mixing some with milk and honey for a delicious, soothing drink.
What happens if endometriosis is left untreated?
Like many conditions, endometriosis develops in stages: one being mild and four being advanced. But catching it in its infancy is easier said than done.
'Endometriosis symptoms do not correlate with the stage of the condition,' Mann says. 'You could have stage one endometriosis and severe symptoms; or be at stage four and unaware of it. It’s a really unpleasant condition to have.'
Left untreated, endometriosis can lead to serious complications, such as fertility problems, and it has the potential to spread. If found on the bowel, for example, a bowel resection may be required.
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