Endometriosis is a chronic condition that causes severe pain and can significantly alter daily life. While there is currently no cure, there are treatment options that can help with symptom management and slow disease progression. March is Endometriosis Awareness Month in the UK, and this year’s theme is Endometriosis Doesn’t Wait, making now the perfect time to develop an understanding of this common condition.
What is endometriosis?
Endometriosis is a chronic inflammatory condition that involves tissue similar to the uterine lining growing in other parts of the body, causing severe symptoms and raising the risk of infertility. It most notably affects the female reproductive system, but can also spread to other organs and parts of the body, particularly the bladder and bowel. Less often, it can also reach outside the pelvic cavity. These lesions of tissue then bleed with each period, but the blood is unable to leave the body.
Additionally, the inflammation caused by this condition can lead to fibrous bands of scar tissue, known as adhesions, which bind organs together. It can also cause a specific form of ovarian cyst known as endometriomas, or chocolate cysts, which typically do not resolve on their own and can pose a rupture risk if large. It is a life-altering condition that can be debilitating both physically and mentally, making awareness, research, and support crucial.
Why does diagnosis usually take years?
According to Endometriosis UK, endometriosis impacts one in 10 women across the country. A recent report by the organisation revealed that the wait to get diagnosed is now nine years and four months on average, up from eight years in 2020. For women from ethnically diverse backgrounds, the wait time increases to an average of 11 years. This issue sparked the Endometriosis Awareness Month theme Endometriosis Doesn’t Wait, which aims to highlight the long wait times for diagnosis and treatment and demand change:
“Endometriosis doesn’t wait whilst you’re trying to get a diagnosis or access care. It doesn’t wait for your career. Your education. Your social life or your relationships.” - Endometriosis UK
Official diagnosis of endometriosis typically requires exploratory laparoscopic surgery as most scans and lab tests cannot detect it, making it more invasive and complicated to diagnose than other conditions. However, scans can detect certain characteristics like ‘kissing ovaries’ (ovaries adhered together), and endometriomas, which are distinguishable on an MRI from other types of ovarian cysts. Unfortunately, many women and people assigned female at birth struggle to access these essential diagnostic surgeries and scans because symptoms are frequently dismissed as “normal” menstrual pain. They also overlap with other common conditions like pelvic inflammatory disease and irritable bowel syndrome, making misdiagnosis a frequent issue.
Endometriosis causes, symptoms, and treatments
The root causes, symptoms, and most suitable treatments of endometriosis can vary from person to person, but there are common themes that occur in most cases.
Causes
The cause of endometriosis is currently unknown. However, genetics are thought to play a role, as a woman whose mother or sister has the condition is more likely to develop it herself. Additionally, hormones, oestrogen in particular, play a significant role in the development and progression of endometriosis. Retrograde menstruation (when menstrual blood flows back into the pelvic cavity) is also thought to be a potential factor. However, the root cause remains unknown.
Symptoms
Symptoms of endometriosis can occur during and outside of the monthly menstrual period. The symptoms that can occur specifically during menstruation include:
- Very heavy bleeding that breaks through clothes and/or requires a new sanitary product every one to two hours
- Severe period pain that inhibits daily activities
Symptoms that can occur both during and outside of menstruation include:
- Pelvic pain
- Pain during urination
- Pain during defecation
- Pain during or after sex
- Fatigue
- Anxiety and/or low mood
- Infertility or issues getting pregnant
- Joint pain
- Bloating
- Nausea
- Gastrointestinal issues similar to IBS
These symptoms often have a significant impact on daily life. From work and education to relationships to mental wellbeing, endometriosis can take a serious toll. Symptoms can also be unpredictable, making planning around them difficult.
Treatments
There is currently no cure for endometriosis, but treatment options exist for symptom management and to reduce the progression of the disease. These include:
- Medicine: Hormonal medications, including combined birth control, are a common treatment for endometriosis symptoms. There is also a type of hormone pill called dienogest, a synthetic form of progesterone, which was designed specifically for the management of endometriosis. It is prescribed to help improve quality of life in sufferers while reducing further progression of the disease.
- Surgery: In addition to diagnosis, laparoscopic surgery is a common treatment option for endometriosis. The goal is typically to remove lesions and adhesions to reduce the spread of the disease and resolve severe pain and other related symptoms. However, even if all lesions are removed, the disease is not cured and further lesion growth is not prevented. Endometriosis surgery can be especially beneficial for people with deep infiltrating lesions, large endometriomas, or severe symptoms.
Misconceptions and stigma around endometriosis
There are various misconceptions around endometriosis that lead to stigma, further impacting sufferers. One of the most common misconceptions is that endometriosis is just a “bad period” and the symptoms are a “normal” part of being a woman. This is completely false, as endometriosis is defined by specific physiological abnormal ities not caused by normal monthly menstruation. Additionally, it is estimated that around 10% of women suffer from endometriosis worldwide, which means the symptoms would not be considered normal by 90% of women.
Another myth that many people are led to believe about endometriosis is that pregnancy can cure it. In fact, a survey of endometriosis patients revealed that of 1000 respondents, 79% had been told to get pregnant to cure their disease or ease its symptoms. The theory is that because pregnant women do not menstruate, symptoms caused by the lesions bleeding with each cycle would resolve. However, this completely ignores the fact that symptoms are present all month, and the cycle will return after pregnancy. Plus, women with endometriosis typically have issues with fertility. This suggestion therefore places impractical and unfair pressure on patients. Endometriosis advocates also argue that pregnancy should only be a decision related to wanting a baby, not temporary pain relief.
Raising awareness of endometriosis
Raising awareness of endometriosis is important for various reasons including long diagnosis times, misconceptions, and helping sufferers get the help they need. Women with endometriosis symptoms can be subject to dismissive attitudes in medical settings, so having an understanding of the condition can help them advocate for themselves effectively.
There are various ways to show support and raise awareness of this condition. For example, participating in national awareness campaigns, such as Endometriosis Awareness Month (March) can be a great way to get involved. Additionally, donating funds or helping facilitate fundraising events are useful ways to show support. It’s also helpful to share information within peer groups and online, in addition to writing to representatives about the cause. Smaller but still impactful ways to show support in daily life include wearing yellow clothing and/or a yellow awareness ribbon, as this is the colour associated with endometriosis awareness in the UK.
Endometriosis support groups
Endometriosis can be debilitating to live with, and it’s often hard for people who don’t suffer from it to fully understand the impact it has. Support groups for endometriosis patients provide a network of people who can truly understand each other’s experience and provide a unique type of support and solidarity. There are local, regional, national, and international groups for endometriosis, with both online and in-person options available. The most beneficial type of support group depends on the preference, needs, and social comfort levels of each individual.
Endometriosis UK offers support groups in various parts of England, Scotland, Wales, and Northern Ireland, with a directory available on their website where people can find their local group. For those who would rather not meet in person, the organisation also offers an online forum called Health Unlocked where people can provide useful information, give or request advice, and share their stories. Alternatively, The Endometriosis Foundation provides an online service called EndoCircle, which involves online support groups, guest speakers, special focus groups, and events like workshops and webinars.
There are also many social media groups run by and for people with endometriosis, such as Endometriosis Support & Education For Women with 95.6K members, and Endometriosis Support with 10.9K members. Smaller scale groups also exist, such as Endometriosis Support Group with 1.5K members, and Endometriosis Support Group UK with 2.6K members.
These groups can help people with endometriosis find new ways to cope with symptoms, better understand the condition and its treatment options, develop new connections with people who understand their experience, and find a network of support. It can also be useful for friends and family members of people living with endometriosis to seek out these groups, as they often provide useful information and advice on the best ways to show support.
