Endometriosis affects 1 in 10 women and takes an average of eight years to diagnose. Here’s everything you need to know about symptoms, causes and treatment
Periods are uncomfortable at the best of times, but for those suffering from endometriosis, that’s an understatement. One in ten UK women suffers from the condition in the UK, It can happen at any age and causes symptoms such as heavy and painful periods and can affect fertility. Endometriosis can be treated, but as yet there is no cure and it can be hard to receive a diagnosis.
A 2020 survey found that 58 per cent of women visited the GP more than ten times before they were diagnosed and 53 per cent went to A&E with symptoms before being diagnosed, according to an inquiry by the All-Party Parliamentary Group on Endometriosis .
Youtuber and former Love Island contestant Molly-Mae Hague, 22, told a similar story this week when she shared that she'd been diagnosed with the condition. She had suspected that her years of "excruciating periods" periods were a sign and indeed many of her 1.5million followers had urged her to seek help. "So many of you were commenting on my videos telling me to check for endometriosis."
She said that her doctors had told her "you definitely don’t have endometriosis. But I went to a specialist in endometriosis and straight away they said ‘you absolutely do have endometriosis.” She says that is set to have keyhole surgery to clear it adding that there was "a 40 per cent chance of it coming back."
Molly-Mae isn't the first high profile woman to share her experience. Woman's Hour presenter Emma Barnett said, during Endometriosis Awareness Month 2020, that it took her 21 years to be diagnosed. Actress Lena Dunham's endometriosis symptoms led to her having a hysterectomy at 31.
DJ Zoe London wrote on Twitter that her symptoms were at times so bad that she had to go to A&E, where she was dismissed. "I've been laughed at in A&E before by male doctors when explaining what was happening to me and sent back home with nothing. [I was] made to feel like I was exaggerating or making it up. For years after I just kept quiet, I was so humiliated."
Here’s what you need to know about endometriosis from the symptoms, causes and treatment to how it affects fertility…
1. What is endometriosis?
Endometriosis, according to the NHS , is a condition where cells like the ones found in the lining of the womb are found elsewhere in the body. Every month, they react just as the womb lining does (building up, breaking down and then bleeding). However, because of their location, the blood is not able to leave the body as a period, which then causes pain and inflammation.
2. What causes endometriosis?
Fertility expert Zita West says the causes are still not fully known. “Although the exact cause has not been officially determined, it is agreed that a combination of factors below is probably involved:
Theory one: retrograde or 'backwards' menstruation
"Unlike endometrial cells in the womb that shed and exit through the vagina, stray endometrial tissue has no direct way out of the body so migrates backward through the fallopian tubes and into the pelvis. This causes locally accumulated blood that initiates the immune system to release high levels of inflammatory mediators, which explains the inflammation, pain and scar tissue.
Theory two: a link between the immune system and wayward endometrial cells
"It has been suggested that retrograde endometriosis happens in all women, but the immune system of some women (six to ten per cent) is incapable of killing these straying cells causing damage.
Theory three: the disease has embryonic origins
"Some foetal studies have suggested that cells can become dislodged from the developing uterus a mere eight to ten weeks after conception and remain there throughout adult life, " says Zeta.
3. Is endometriosis dangerous?
"It’s not dangerous but can be incredibly debilitating,” explains Zita. “If it is severe the pain can be excruciating and means taking time off work, plus all of the emotional factors such as wondering whether or not it will affect your ability to conceive."
4. What are the symptoms of endometriosis?
Symptoms will vary from woman to woman, which is why it can be tricky to diagnose. Some women are even symptom-free but may find they have trouble conceiving. However, the most common symptoms include:
- painful or heavy periods
- pain in the lower abdomen, pelvis or lower back
- pain during, or after sex
- painful bowel movements
- bleeding in between periods
Of course, the difficulty is knowing what’s 'normal’ for period pain - because all you know is your own experience. If it interferes with your everyday life, it’s worth getting checked out. "The symptoms can be very misleading, as they include pelvic cramps and swelling which creates pressure on the bowel and makes one feel constipated and bloated. This means that a lot of women are suffering in silence, accepting that their symptoms as normal and that it’s just ‘that time of the month’,” explains Zita.
"Pressure on the ovaries also prevents them from functioning properly so irregular bleeding, bleeding in between periods and a heavy flow are other unfortunate symptoms. In severe circumstances, regions of scar tissue form called lesions. These lesions accumulate into adhesions and act as an internal superglue, binding organs together, resulting in physical obstruction of pelvic organs and debilitating pain.”
Interestingly, the severity of the pain is less about the number of cells, and in fact dependent on where in the body the abnormal tissue is. Usually, they grow in the ovaries, bowel or in tissues around the pelvis, but (though rare), can spread beyond the pelvic region. Head to Endometriosis UK for more advice on symptoms.
5. Can endometriosis make you infertile?
“Yes, if it is severe, one of the most devastating consequences of endometriosis is problems with fertility,” explains Zita. "Not only does endometriosis make sex very painful and trying to conceive unenjoyable, but it can also create high levels of inflammatory chemicals (prostaglandins) in the peritoneal fluid which can affect both tubal contractility and the sperm’s ability to fertilise an egg. Scar tissue can also cause ovarian damage, affecting ovulation and fertilisation."
If you’re trying to conceive or perhaps know you will want to in the future, do seek advice from your GP or a fertility expert to see what the options are. IVF can work for those with endometriosis, and other treatments may be available to improve your chances of conceiving.
6. How is endometriosis diagnosed?
Endometriosis is notoriously hard to diagnose, with an invasive procedure required to get a definitive answer. "The gynaecologist might carry out an ultrasound scan, alongside asking about your symptoms and sexual activity. However, the only way to diagnose endometriosis is through a procedure called a laparoscopy,” says fertility specialist and international director of IVI Fertility group Dr Santamaria.
"This procedure is done under a general anaesthetic, in which a small telescope with a light on the end (the laparoscope) is inserted into the pelvis through the belly button. The laparoscope has a camera that transmits the images to a video monitor, where the surgeon can look for endometriosis. Often biopsies are taken for analysis. Following a diagnosis, you may be referred to an endometrial specialist who will be able to help advise you on the best way to manage the symptoms.”
Trying to get pregnant? Though invasive, the procedure could actually help. "Your gynaecologist will cut away pieces of endometrial tissue via a laser, which increases your chances of conception for 4-6 months after the procedure,” explains Zita. "So make sure you have lots of sex as soon as you feel well enough!"
7. Can diet help with endometriosis?
Lifestyle tweaks can help to ease the symptoms. "A diet low in animal products and high in anti-inflammatory nutrients can tackle the underlying causes of the condition, reduce the severity of the symptoms and minimise the chances of reoccurrence,” reveals Zita. "At the clinic, we advise supplements including probiotics to help modulate the immune system, omega-3 to reduce inflammation and pain, magnesium to help relax the smooth muscle of the uterus and antioxidants to combat the free radical damage that accompanies inflammation. These are all available to buy on www.zitawest.com.” Check out Rosemary Ferguson’s guide to eating an anti-inflammatory diet here .
Don’t underestimate the power of nutrition, as Zita explains. "I have seen women who have suffered endometriosis for years cut out wheat, dairy products and caffeine and experienced much lighter periods the next cycle and a positive pregnancy test the next."
8. How is endometriosis treated?
There’s no cure for endometriosis, in part due to the confusion over its cause. Instead, treatment is focused on reducing the severity of the symptoms; the main options are surgery, hormone treatments and pain relief.
"Hormone relief can include the contraceptive pill, as an attempt to mimic pregnancy and reduce symptoms, and surgery can excise endometriotic nodules and release adhesions,” explains Dr Santamaria. Occasionally, anti-depressants are also prescribed in order to help with pain relief; they block the neurotransmitters which carry the message of pain to the brain.
Surgery can be used, but caution is necessary, Dr Santamaria notes. "It is known that surgery to destroy endometriosis can have a positive effect on fertility in certain cases. However, repeated surgery can actually be detrimental and have a negative impact on your ovarian reserves so it’s important for your doctor to monitor this."
9. Can you exercise with endometriosis?
"Exercise is a very important factor in symptom management. Taking regular exercise, especially first thing in the morning has great effects on easing symptoms,” explains Zita. "Although, make sure you avoid strenuous exercise, sex and large quantities of caffeine and alcohol during menstruation as this can aggravate symptoms further."
Some people may find alternative therapies help, too. "In traditional Chinese medicine, endometriosis is perceived as the result of a blockage or a ‘stagnation’ of the flow of energy around the body. Try acupuncture to restore the balance between the body’s systems, improve the vital energy flow and relieve pain."
10. You are not alone
Endometriosis affects one in ten women so you are most definitely not suffering alone. Not just Lena Dunham but other Hollywood celebrities have spoken out about the condition, from trainer Jillian Michaels and actresses Julianne Hough, Whoopi Goldberg and Susan Sarandon. Some have turned to surgery and others simply manage their condition as best they can - but what’s important is to get the help you, specifically, need. "Remember every individual is different and you need to do what works best for you,” urges Zita.
For help and support, visit Endometriosis UK . Zita West is the founder of the Zita West Fertility Clinic, which specialises in a holistic approach to natural fertility and IVF. To find out more visit www.zitawest.com