November 6th 2018
10 things you need to know about endometriosis
October 20th 2020 / 0 comment
Endometriosis affects 1 in 10 women and takes an average of eight years to diagnose, with MPs calling for urgent improvement – here’s everything you need to know about symptoms, causes and treatment
Periods are uncomfortable at the best of times, but for people suffering with endometriosis that’s an understatement; one in ten women suffer from the condition in the UK and a recent survey found that 58 per cent of people visited the GP more than ten times before diagnosis and 53 per cent went to A&E with symptoms before being diagnosed, according to an inquiry by the All-Party Political Group.
Nadine Dorries, minister for women's health said awareness is increasing but there is still a long way to go. The topic has been trending on Twitter, with many high profile women sharing their experiences. BBC5 Live presenter and journalist Emma Barnett said it took her 21 years to be diagnosed, while influencer and DJ Zoe London wrote: "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 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) - only 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 this is still up for debate. “Although the exact cause has not been officially determined, it is agreed that a combination of factors below are probably involved:
Theory one: Retrograde Menstruation
"Unlike endometrial cells in the womb that shed and exit through the vagina, stray endometrial tissue have no direct way out of the body so migrate backwards 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 (explained above) happens in all female humans but the immune system of some women (6-10%) are 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 8-10 weeks after conception and remain there throughout adult life."
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 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 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 amount 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, it can 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 which 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 dietary changes 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
As mentioned earlier, endometriosis affects one in ten women so you are most definitely not suffering alone. Many celebrities have spoken out about the condition, from Jillian Michaels and Julianne Hough to 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