Endometriosis is a common health condition, which affects 1 in 10 women of child bearing age. That’s 1.5 million people in the UK and 190 million worldwide.

In endometriosis, cells similar to those usually found in the lining of the womb, grow in other parts of the body. These are called “endometrial deposits” and they can be found on the ovaries, bladder, bowels, pelvic and abdominal walls and in rare cases, even places like the lining of the lung.

As your body moves through its natural menstrual cycle, the womb lining thickens to create a nice home for a potential fertilised egg, before shedding and bleeding if no pregnancy occurs.

The symptoms of endometriosis are caused by these endometrial cell deposits outside the womb responding to your menstrual cycle in the same way – thickening and then bleeding.

As this occurs in places where there is less space for the cells to thicken, and nowhere for blood to escape, this causes pain, chronic inflammation and scar tissue (also known as adhesions). This contributes to the wide range of symptoms people with endometriosis may suffer from.

There is no easy answer for what causes endometriosis. It is very frustrating for every endometriosis sufferer and those of us who treat it….that we don’t exactly know how, or why the condition happens. There are theories, but nothing has been scientifically proven. 

One theory called “Retrograde Menstruation” suggests that during a period some of the womb lining travels the wrong way up the fallopian tubes and ends up depositing in the pelvis or abdomen. 

Another called “Metaplasia” suggests that some cells in the body are able to change to cells found in the womb lining in response to inflammation or certain toxins. 

We have seen some research that shows endometriosis can run in families and there could be a genetic factor. However, none of these have been proven and the real cause could perhaps be a combination of many different ideas. At The Lowdown, we’re hoping science can help us out and finally come up with an answer!

Endometriosis affects 1 in 10, which is a staggering 190 million women and those assigned female at birth worldwide. However, it’s really difficult to understand more about when people present with symptoms or “get” endometriosis. This is firstly, because symptoms can vary so much. Some people get very severe symptoms with minimal endometrial deposits and others get almost no symptoms with widespread endometriosis….and we don’t know why. Secondly, because it takes an average of 7.5 years of symptoms before a diagnosis, we often can’t pinpoint when the endometrial deposits first started to appear. What we do know is that endometriosis can present at all ages from when you start your periods and in some, can continue until the menopause.

There are up to 20 symptoms of endometriosis. The symptoms are really variable for each person, and not necessarily related to how severe or how many endometrial deposits there are. Symptoms can also be very vague and overlap with other common problems such as IBS (irritable bowel syndrome) or pelvic infections.

The signs that to look out for include the following:

• Painful periods which start from 1 to 2 days before bleeding and continue throughout the bleed. The pain can often be debilitating, meaning women miss school, university or work regularly during their period
• Heavy periods, long periods, spotting in between periods or losing old, dark blood before your period starts
• Pain deep within your pelvis or abdomen during sex or internal medical examinations
• Pain or bleeding when going to the toilet (bladder or bowels) while on your period
• Difficulty getting pregnant. Although it is important to remember that 70% of women with endometriosis fall pregnant naturally
• Fatigue, lethargy and mood changes which are understandable when you read through the symptoms above!

The average time it takes for a woman to receive a definitive diagnosis of endometriosis is 7.5 years from when symptoms begin. We completely understand this leaves women feeling fed up, exhausted and perhaps even losing trust with the healthcare system.

The length of time it takes to diagnose endometriosis could be partly due to the symptoms, which can be vague and similar to other common conditions, but also because there is no simple test. 

Imaging techniques such as an MRI scan or ultrasound of the pelvis can sometimes show endometriosis, but they are currently not perfect. A gynaecologist called Mathew Leonardi has our full respect for developing an advanced ultrasound technique which can accurately diagnose and stage endometriosis alongside helping to plan surgical treatment, however, very few people are trained in this technique at the moment, but we’re hoping it is more accessible soon.

The “gold standard” for diagnosing endometriosis is via a laparoscopy. This is a small key hole operation in which a camera is inserted into the abdomen and pelvis to look for endometrial deposits. If these are found, they may be treated at the same time.

However, this procedure does involve risks. You will require a general anaesthetic and abdominal surgery is invasive with risks including pain, infection, bleeding and damage to organs such as the bladder or bowel walls. Most women are so fed up with their symptoms they are happy to take these risks for a diagnosis, other women prefer to try treatment options first. This is a personal decision, and I’d advise you to discuss the advantages and disadvantages of both options with your doctor.

There is ongoing research into potential biomarkers (such as blood tests or urine tests) that can be used to make a diagnosis instead of surgery, but that won’t be seen in reality for several more years.

This is a really frustrating time, and we know that those who suffer with awful periods often have to see their doctor multiple times before starting investigations. Concentrate on how your symptoms are impacting your life. If you are unable to work, or do your normal daily activities during your periods, especially if simple painkillers like paracetamol and ibuprofen don’t help, then this really signifies a problem. We have a blog on how to discuss endometriosis pain and how it feels with your doctor. Use this as a framework to start a discussion with your doctor, and state “I am worried that I have endometriosis” so your doctor knows how they can use their time to help you.

Yes, you can get pregnant with endometriosis! Endometriosis can affect fertility and it also depends on the severity of your condition. Of couples trying to conceive naturally most (60 to 70%) will get pregnant within 1 year of trying, compared to 84% of couples where endometriosis is not an issue. 75% of people with mild endometriosis will conceive within 1 year. 50% of people with moderate endometriosis and 25% with severe endometriosis will conceive within one year of trying.

Use our handy fertility quiz to help you understand more about how to optimise your fertility.

If you have a known condition that could cause fertility problems such as endometriosis, you can often be referred to specialist fertility services sooner than waiting for one year of trying. Speak to your doctor who can advise you further and explain what services are available to you locally.

Adenomyosis is where the tissue from the lining of the womb grows into the muscle around the womb. Endometriosis is where tissue from the lining of the womb is found outside the womb. Both conditions can cause very painful and heavy periods. Both conditions can be found alone, or together in the same person. They are often lumped together as one, but they are distinct conditions with different causes and treatments.

When endometrial tissue in the pelvic cavity bleeds during the monthly cycle, it can’t leave your body through your vagina, like a normal period would. This tissue and blood can develop into cysts on the ovaries called an endometrioma, also known as a chocolate cyst. In other parts of the pelvis, the blood causes inflammation in the surrounding areas as it is reabsorbed which can cause a build up of scar tissue and pelvic pain.

The overwhelming majority of endometrial deposits are found in the pelvis, with most being on the ovaries followed by the fallopian tubes and ligaments which hold up the womb. Superficial endometrial deposits are often found on the lining of the pelvic cavity which is called the peritoneum. It is less common for endometrial deposits to be found on the bowel and vagina, and it is very rare for endometriosis to be found outside the pelvis, for example, in the chest.

Endometrial tissue can have various appearances. They have been described as red, white, clear or black like “powder-burns” or “gunshot” marks. There is no difference between these tissues, it is just how endometriosis shows up in each individual. The skill and experience of your clinician will determine how easily they can identify the different types of tissue by sight. Sometimes, taking a small biopsy may be useful to look at the tissues under a microscope to confirm endometriosis.

Yes! Menstrual disorders are named in the UK Government’s Women’s Health Strategy as a priority area to improve care and the World Health Organisation are “partnering with multiple stakeholders, including academic institutions, non-state actors and other organizations that are actively involved in research to identify effective models of endometriosis prevention, diagnosis, treatment, and care”. This hopefully means continued investment into research and more support for those who suffer from endometriosis. One of the most exciting areas of research is into diagnosis of endometriosis. As we know, a formal diagnosis often requires invasive surgery, which is not ideal. Research into specific bio markers like blood tests and urine tests to diagnose endometriosis is ongoing. The development of advanced ultrasound techniques is really exciting. Professionals who can use the advanced technique are more able to diagnose endometriosis on ultrasound alone and we hope more practitioners can access this high quality training soon so it is available worldwide.