All the information you need to live well with endometriosis
Endometriosis experts Professor Andrew Horne and Carol Pearson present the latest research and advice to help you manage your symptoms and take back control of your body and your health. They also share first-hand experiences of women who have overcome the pain, frustration and isolation associated with endometriosis to live a full and happy life. Find out:
Professor Andrew Horne (PhD FRCOG) is an internationally renowned endometriosis expert and Professor of Gynaecology and Reproductive Sciences at the University of Edinburgh’s MRC Centre for Reproductive Health.
Carol Pearson has been involved with Endometriosis UK for many years and delivered a TEDx talk on endometriosis, ‘Rewriting Red Riding Hood’, after her career was cut short due to the disease.
Endometriosis UK is the UK’s leading endometriosis charity and provides vital support services, reliable information and a community for those affected by endometriosis.
www.endometriosis-uk.org
To all women with endometriosis, may your voices be heard so that future generations will have real hope of answers, an easier diagnosis, better treatments and even a cure, and to the healthcare professionals who dedicate their careers to helping women with endometriosis – despite the many challenges – thank you for not giving up
Endometriosis is not straightforward. It is a disease where cells similar to those lining the womb grow elsewhere in the body. Where they grow, how much they grow, how deep they grow, and what they interfere with will vary from person to person – and so each individual with the disease experiences a different range of symptoms, and to a different severity. Despite affecting 10 per cent of women of reproductive age – 1.5 million in the UK, 176 million worldwide – there is no cure, and treatments are not always helpful and can come with risks or side effects.
The average length of time to get a diagnosis is, shockingly, 7.5 years. Being an average this masks a significant range – from women who receive great support and are diagnosed in just a few months because their GP suspects endometriosis early on and navigates the route to diagnosis efficiently, through to women for whom diagnosis takes 15 years or more. Before a diagnosis, effective treatment options cannot easily be offered. Before a diagnosis, a woman may be told her symptoms are ‘normal’, may be misdiagnosed with another condition, or may even be told her symptoms are ‘in her head’. They may miss work or education, unable to put a name to their ‘problems’, hampering their careers – endometriosis costs the UK economy an estimated £8.2bn a year in treatment, loss of work and healthcare costs. This is no way for women to be treated in the 21st century.
There is no doubt that endometriosis can sometimes be a challenge to diagnose and to treat. Symptoms are shared by a range of other conditions – chronic pelvic pain can be associated with pelvic inflammatory disease, fibroids, irritable bowel syndrome and painful bladder syndrome, to name just a few, as well as due to endometriosis. Endometriosis doesn’t always show up on scans and the only definitive diagnosis at present is through surgery, so it makes sense to rule out other conditions first if that can be done less invasively. But endometriosis should be considered when a woman has one or more symptoms, and sadly that doesn’t always happen.
There are steps that we can take to significantly reduce diagnosis times and improve the treatments women are offered. Raising awareness of menstrual health and what’s normal as part of education in schools, so no-one puts up with years of pain and other problems thinking it’s ‘normal’. Raising public awareness – after all, this affects 10 per cent of women irrespective of race or socioeconomic background, so shouldn’t everyone know about it? We need tools and guidance to help GPs, as well as wider availability of resources to treat women effectively, so women don’t have to wait months – sometimes years – for surgery they very much need. Investment in research is vital to find answers about what causes endometriosis and effective treatments.
Vitally important, we need to support women with endometriosis, or who suspect they might have it, to ensure they have the information and support they need to help manage their condition. And this is where this book comes in; we hope it will provide help to women, and all those that support them, to navigate through their journey with endometriosis.
Many thanks to Carol Pearson and Professor Andrew Horne, our authors. Together they have produced this expert guide through their knowledge and many years of experience working with and championing the needs of women with endometriosis, bringing together the voices of patients and clinicians.
Emma Cox,
CEO, Endometriosis UK,
2017
Imagine that you spend months – no, let’s make that years, maybe many years – in pain, excruciating pain, but you think, or are told, that what you’re going through is normal. You wrack your brain for answers. It doesn’t add up. Something is not right! You know it, but others can’t see it, even people that you’re really close to.
You seek help, seeing one doctor, then another, you try this drug and then that one, but you’re not getting better … you get referred to a hospital and the same routine starts over again. You have one invasive test or scan followed by another, and still no answers. Finally, someone operates … And, one day you are told that you have a disease called ‘endometriosis’.
But you haven’t heard of it – nor has your partner, your mother or your friend. Later, you’re back at work or college and though you tell them it still hurts, no one understands. You have more surgery – aren’t you better yet, everyone says? No, you’re not. You start more treatment, have more surgery, you feel a bit better but then it comes back again … and so it goes on.
If you were told that this was a disease that affected one in 10 women, and yet this story still goes on all over the world today, you would be deeply shocked. How can this happen? Women’s bodies – women’s problems – have been so taboo and this silence has cost society.
In the many years that we have both been involved supporting or looking after women with endometriosis, we have heard this story literally hundreds of times. The stories invariably involve women who have experienced a delay in diagnosis; they often involve women seeing a whole range of healthcare professionals and having an array of tests and several – maybe even many – surgeries. They involve many years of suffering, sometimes with a positive ending, but not always.
Our book provides up-to-date information on endometriosis and the latest treatments available, linked to real stories of many women with endometriosis. We want you to hear about the stories of these women – women who have often hidden their suffering and tried desperately to live ‘normal’ lives. How the women coped, what were the highs and lows, what impact did this disease have on them – their relationships, their fertility, their careers and their hopes and dreams? We want to show you not just the women behind this disease but also their partners, their family members – and the GPs, gynaecologists, nurses, and allied healthcare practitioners who work so hard to treat women with endometriosis, because their stories are part of that fabric too. These women – they could be you, or your partner, sister, daughter or mother, or they could be your patient, sitting patiently telling you again that they are in pain – whoever they are, they must be listened to.
While researching for this book, we conducted in-depth interviews with women with endometriosis and a wide range of clinicians. We are deeply grateful to all of them. Through these interviews, we listened to over 50 hours of experiences from a range of different perspectives, amounting to some 300,000 words solely on endometriosis and the care of women with this disease. Despite being involved in the field of endometriosis for many years, analysing these interviews revealed many surprises.
In choosing to talk, the women in this book made themselves vulnerable. It was very hard for them to relive elements of their stories that they had long filed away in their memories, and we will be for ever indebted to them that they had the courage to do this to help other women and to help people generally understand how endometriosis affects us and our society today. We also want to pay tribute to the clinicians whom we spoke to who treat women with endometriosis – their path is also not an easy one at all. This is no straightforward disease, either to diagnose or treat. Without their tenacity and knowledge, women with endometriosis would be far worse off.
Professor Andrew Horne and Carol Pearson,
2017
When we talk about women in this book, we refer to our many years of experience working with women with endometriosis plus the series of in-depth interviews we conducted prior to starting writing. We could not hope to replicate even a fraction of all we’ve been told but hope that the main themes are captured. When we refer to ‘clinicians’, we similarly refer to the many clinicians in diverse clinical roles with whom we have worked and those with whom we conducted similar interviews.
Endometriosis is a gynaecological disease – which means it’s related to the female reproductive system – when cells similar (but not the same) as those that line the uterus (womb), grow in other places. These usually grow in the pelvis but on occasion grow elsewhere in the body. These areas of abnormal tissue respond to hormones and are thought to ‘bleed’ on a monthly basis, causing symptoms such as pain and resulting in scarring and inflammation. Endometriosis is not cancer, nor is it an infection. The cause of endometriosis remains unknown.
These growths are commonly referred to as lesions and nodules, and occasionally implants. You may also hear the term endometrioma, which specifically refers to endometriosis in the ovary.
Symptoms of endometriosis vary, however, if you experience any of these it could be endometriosis:
This enigmatic, rather mysterious disease has been subject to various classification systems over the years, none of which are wholly satisfactory.
When we refer to superficial disease, we refer to disease that does not penetrate deeply into the surface of organs. Some classifications refer to this as ‘minimal’ or ‘mild’ disease, or disease stages 1 to 2. It may be in isolated areas or widespread.
When we refer to deep disease, we refer to deeper lesions. Some classifications refer to this as ‘moderate’ or ‘severe’ disease, or disease stage 3 or 4. Again, it may be in isolated areas or widespread. It may involve the ovaries, forming ‘cysts’ or ‘endometriomas’, sometimes referred to as ‘chocolate cysts’ and/or have penetrated organs, such as the bowel or bladder.
It is important to acknowledge upfront that none of these classifications describes in any way either the extent to which a woman experiences symptoms from this condition, or the level of disability. There is absolutely no discrimination. Deep disease can, on occasions, be silent and symptomless; superficial disease can be disabling, and vice versa.
WE LIVE IN an age transformed by the power of social media and technology: there have never been more ways to communicate, so quickly and efficiently. Thankfully, we also benefit from unprecedented openness – we can freely share our innermost thoughts, feelings and challenges if we want to – not just with our friends and family but also with complete strangers. We have seen this with many issues that have been previously stigmatised, including mental health and sexuality. We’re seeing the start of a similar revolution on menstruation but there’s still a way to go. So, why do we still shy away from ‘female things’? Is there still an unspoken ‘otherness’ about being a woman, despite 49.5 per cent of the world’s population being female? Unfortunately, for one in 10 women, who have this very misunderstood, poorly explained disease, endometriosis, the social movement has only just begun – and it couldn’t have come a moment too soon. But what exactly is endometriosis?
It was like opening a door into another world that I had no clue how to navigate, who to talk to, how to get support, or get myself better. – Zoe
Endometriosis – or ‘endo’, as women with the condition often come to call it – is commonly considered to be a gynaecological disease, or a disease of the female pelvic organs. But on another level, it is also a system-wide hormonal disease that strikes right at the cellular level, because endometriosis occurs when cells that act like those that line the womb (uterus) are found elsewhere, usually in the pelvis, in places where they are extremely unwelcome: on the lining of the peritoneal wall (the inside lining of the abdomen and pelvis), in the ovaries, in the vagina, on or even in the bowel or bladder, and sometimes, rarely, in far-flung corners of the body, such as the diaphragm, the covering of the heart (pericardium), the lungs (causing a cyclical cough, or cyclical coughing up of blood), in abdominal scars, including the navel, or belly button. In exceptionally rare cases, it has even been known to present in men.
So what happens then? Well, we know that endometriosis is a disease that grows in response to hormones – principally oestrogen – coming from the ovaries. Oestrogen is the hormone that causes your womb lining to thicken each month. The endometriosis tissue responds to the body’s oestrogen and likely bleeds ‘internally’ with no place to go. Over time, this monthly internal bleeding can lead to inflammation and scarring – referred to as ‘adhesions’ – that can cause surfaces within the pelvis to stick together. The misplaced endometriosis tissue may develop its own blood supply to help it grow, and a nerve supply to communicate with the brain, which is one possible reason why some women with endometriosis may suffer from such debilitating pain. But women with endometriosis can also suffer from a wide range of other symptoms and issues, such as a range of digestive symptoms (constipation, diarrhoea, nausea and IBS type symptoms), painful sex, subfertility, pelvic pain either persistently throughout the month or at certain times, and fatigue. Strangely, not every woman with endometriosis gets pain but many of them do – and we could write a book alone on the pain associated with endometriosis. When thinking about the symptoms of endometriosis, it can be helpful to look at where all the organs are located in a woman’s pelvis. There’s a useful illustration of this at the start of this book (see page xxi).
Theories abound as to why women get endometriosis and what causes it – the truth is we do not know conclusively, as yet, why some women get it. But we can describe some of the characteristics of it that will help us to understand it a little better.
Above all, we know that you are more likely to have endometriosis if you have a relative with it. But, in truth, the genetics of endometriosis is complex and remains unexplained. Most researchers feel that endometriosis is inherited by what is termed as ‘a polygenic/multifactorial mode’, which means that it is caused by a combination of genes and the environment. Yet there are a number of factors that specifically make it difficult to determine the exact ‘mode’ of inheritance of endometriosis.
First and foremost is the fact that endometriosis can only be diagnosed invasively by surgery. This can result in under-reporting of patients with the disease since the diagnosis relies on an invasive test.
Another issue is that endometriosis may not actually be one disease but a number of similar diseases that are currently grouped together under the definition of ‘endometriosis’, as evidenced by the different sites in the body where it can be found. So there is, as yet, no ‘genetic’ test for endometriosis. Many of the women we spoke to talked of their own mum’s sufferings, or that of other family members who perhaps never realised they had endometriosis.
I think my mum definitely had endo but she wasn’t diagnosed. Her sister did have endo and was luckily diagnosed. – Lucy
Putting genetic factors aside, another widely accepted and supported explanation for why women develop endometriosis is ‘Sampson’s theory’, first put forward in the 1920s by gynaecologist Dr John Sampson, that suggests it occurs due to ‘retrograde menstruation’. This is where some of the blood and cells that are shed from the womb lining during a period pass backwards up through the Fallopian tubes into the pelvis and stick to the pelvic cavity wall instead of leaving the womb through the vagina as part of the monthly period. Yet we know that nearly 90 per cent of women experience retrograde menstruation and most women with retrograde menstruation do not end up with endometriosis. Because of this, studies to date have focused on differences in the womb lining of women with endometriosis and researchers are now investigating whether the pelvic wall lining (peritoneum) plays a role in the establishment of the condition, or whether it is altered in women with endometriosis.
We also know from research that endometriosis cells have been found in the foetus, which supports the theory that the disease process is laid down in some women from the start of their lives. The lining of the womb in a newborn baby can show signs of activity immediately after birth and, in some cases, show changes similar to those seen at menstruation in women. So, the womb in a newborn baby is capable of shedding its lining, yes, ‘menstruating’. Indeed, visible vaginal bleeding occurs in one in 20 newborn female babies. And what’s fascinating is that endometriosis has been seen in a newborn baby – possibly due to plugging of the womb at the level of the cervix, the womb outlet – leading to a backward, or retrograde, flux of the blood and cells contained in menstrual debris. These findings are causing researchers to speculate that endometriosis, especially in children and young adolescents, could originate from retrograde bleeding soon after birth.
Some researchers think that endometriosis could be an immune system problem or that a local hormonal imbalance enables the endometrial-like tissue to take root and grow after it is pushed out of the uterus. Others believe that in some women, certain pelvic wall or abdominal cells mistakenly turn into endometrial cells (metaplasia). These same cells are the ones responsible for the growth of a woman’s reproductive organs in the embryonic stage. It’s believed that something in the woman’s genetic makeup, or something she’s exposed to in the environment later in life, changes those cells so that they turn into endometrial tissue outside the uterus. There’s also some thinking that damage to cells that line the pelvis from a previous infection can lead to endometriosis.
Despite these theories we still have unanswered questions, questions that research still needs to answer. Most experts agree that there are many factors that may all have a role in the development of endometriosis, including genetic factors, retrograde menstruation, metaplasia, immunological and hormonal reasons.
We’ve looked at what endometriosis is and some of the theories about why women get it, let’s now take a look at one of the challenges of this disease: getting a diagnosis.
Most young women have some pain and discomfort, leading up to, during and after their period. This is normal, and most girls get told that their periods will calm down in a couple of years as hormone levels become more settled; for most girls they will. But ‘period pain’ should not be so bad that you cannot get up, go to school, college or work, or carry on with your normal life. If your pain is interfering with everyday activities, at any age, it is not normal.
The taboo that requires a woman’s common bodily functions to remain largely unspoken of, is a stumbling block when it comes to diagnosing and treating endometriosis. But let’s start at the very first challenge facing women – and probably the most fundamental issue for endometriosis – the notion that period pain is ‘normal’. How can people know and distinguish between ‘normal pain’ and pain that is a problem, pain that might indicate disease may be present? How do we know what is ‘normal?’
Let’s call this first stage ‘the unknown unknown’: quite simply, we just don’t know what we don’t know. For many with endometriosis, the first stumbling block is this: that the perception of women’s pain is quite clearly embedded in our society and that starts with education at home, often by other women, so, unfortunately for some teenagers, their ‘norm’ was also their mother’s or their grandmother’s pain. Amy explains: ‘I was in one of those families where my mum and my nan said, “It was really bad for us as well, we’re just unlucky as a family.”’
How deeply ironic for a disease that has a hereditary component that the pain and disease of some mothers and grandmothers – who very sadly may have had the disease and not even have known it – should be one of the reasons why women may delay seeking help for pain.
If we expect women to be in pain, how do we break that down? How do we dispel the myth that pain is inseparable from having a period, and secondly, how do we help people to understand the important – and early – indicators of this common disease, endometriosis? Perhaps a good place to start would be in health education in schools, but even there, as Preena explains, there is no mention of common diseases that affect periods, such as endometriosis. ‘I had no idea about any of these things when I was young, and I think many young girls suffer from it but unfortunately they’re not told about it, either at school or university.’
So, let’s move to stage two, the ‘known unknown’: you’re becoming aware that there is a problem, but have absolutely no idea what’s wrong, you just know things are definitely not ‘normal’ with your periods. Perhaps over-the-counter pain relief isn’t enough to help manage your symptoms and maybe you have even already been to see your GP. At this stage, your symptoms may cause you to take time off work, or to miss school.
Whatever it is, when we asked women to talk us through their journeys with endometriosis, many of them started by talking about the challenges they faced early on as a teenager, even if they weren’t diagnosed with endometriosis until many years later.
Endometriosis symptoms may be experienced at any age, ranging from when a girl reaches puberty to menopause. However, it can be especially difficult for those who suffer significantly when they are still at school, and unfortunately a myth persists that teenagers don’t get endometriosis. Sophie’s friend would take her to the medical room when she had her period as the pain she experienced made her vomit ‘It was very embarrassing, because every time my friend would go back to the classroom, the teacher would ask what was wrong and my friend would say, “oh it’s tummy pains again”, and all the pupils would laugh and think I was really weak and not coping with period pains.’
Beth experienced a lot of fatigue. ‘Everyone thought I was lazy because I missed quite a lot of school every month. They would get my mum in and said I wouldn’t pass my exams, and this is coming from an A-star student. So there was an obvious disconnect with how people saw me and how tired I was feeling, from doctors, teachers, the school nurse, everyone.’
How bizarre is it that we do not routinely talk to young women about knowing what may not be ‘normal’ and the symptoms of endometriosis? In most countries, there is still limited education about menstrual health, what’s normal and what is not, and the subject of endometriosis is barely touched upon, if it is raised at all. And even worse – how awful is it that we potentially leave women to suffer for years and years as a result?
During this stage – which could last a few months or for many years – women are on their way to getting help, even if this is frustratingly slow sometimes. They’re seeing doctors, sometimes quite a few of them. This part of the ‘known unknown’ is very tricky – they’re entering a world of knowledge and possibility but there is often stark inconsistency of diagnoses and advice. Of course, no two women with endometriosis are the same and there is a vast range of symptoms, but there are two very key people in this stage: the GP and the gynaecologist. We’ll take a detailed look at their roles in Chapter 3, The right care in the right place for you.
Let’s get back to the actual disease itself, because the symptoms of it are a whole story in themselves, and one of the reasons why endometriosis can be so hard to identify. The long diagnosis time for endometriosis isn’t just about the lack of information for teenage girls. When it comes to symptoms and subsequent tests, we’re entering an even more challenging arena where women and clinicians need to work together to find answers.
For a start, we know the symptoms may or may not correlate to the severity of disease. Rather confusingly, ‘superficial’, ‘mild’, ‘peritoneal’ or ‘stage 1’ disease, which may involve a few spots of endometriosis in one or two areas, or spread across the inside of the pelvis, may cause persistently disabling symptoms, whilst some women with deep or severe disease may not necessarily experience symptoms that are as debilitating.
We know this conundrum and all we can do is face it and be honest. There is simply no pattern or explanation as to why symptoms are so variable and also why there are so many different symptoms. We should also note that some of these symptoms overlap with many other diseases, some of which women with endometriosis may also have, which rather complicates the situation.
If there is one thing that has frustrated women with this disease, it is probably this alone: that it may have taken an inordinate amount of time for unpleasant, sometimes disabling symptoms to be pinned down to a cause, and perhaps even to be taken seriously. Unfortunately, a large number of women are told a whole bunch of things that turn out, with hindsight, to be not quite right – on top of this, a huge number of tests may be endured and a lot of doctors may be seen along the way. Sadly, this can have a significant emotional impact. But let’s take a closer look at the symptoms first.
Pain can be very hard to describe or even for others to understand, particularly when it relates to the inside of our bodies. For many women, endometriosis involves some level of pain, but this is certainly not the case for all women. However, for many women, pain is what defines endometriosis for them. Some women are in pain for a very long time before they seek help, whereas others seek help much quicker.
Women’s pain may be constant, or cyclical, occurring each month during the same part of the menstrual cycle. This latter can be hard to monitor – unless actively pursuing pregnancy, women don’t go around thinking, oh, I must be ovulating now … so many women just think of it as ‘intermittent’. Keeping a pain and symptoms diary (see here) to record what your symptoms are, when they occur and how they affect you, will help identify if there is any pattern to your pain. In either case, if the pain lasts over six months, it is referred to as chronic pain.
The women that we spoke to had lots of descriptions for their pain. Some only experienced pain during their periods, some at other specific times of the month, whereas others had pain throughout the month.
Zoe paints a picture of her pain: ‘It’s either an aching, dragging, heavy feeling from the waist down, or it’s intensely sharp, stabbing. It feels like everything is going to fall out of you.’ The feeling that everything is going to fall out is a description that quite a few women used.
If you have painful symptoms, how can you help others, and particularly healthcare practitioners, to understand this pain? First of all, it can help to explain how it affects your day-to-day life.
Part of describing the pain is explaining the effect of it – and this is key, because pain that causes girls to miss school or work indicates there may be an issue. Preena explains: ‘I would have to miss days off school. The pain wasn’t normal pain that my mum used to experience, this was fold-over on the bed in agony pain, taking the strongest ibuprofen possible.’
Pain that doesn’t respond to over-the-counter painkillers from your pharmacist is an indication that you need to seek help from your doctor. And pain that affects everyday activities, such as sleeping, eating and sitting, should also be a strong indicator to seek medical attention. Madison describes this sort of pain: ‘I couldn’t concentrate, I didn’t want to eat, I couldn’t sleep for the pain, there was no position, sitting, lying, that was comfortable at all.’
Pain sometimes has a knock-on impact and causes other symptoms, such as fainting, nausea and vomiting. Madison goes on to explain, ‘the pain was so excruciating that it was almost like my body just shut down, I would pass out to deal with it and that was a recurring issue for quite a few years.’
Some women that we talked to had pain right from when their periods started, maybe even before. Generally, teenage girls experiencing pelvic pain see their GP, who may prescribe analgesia or perhaps the oral contraceptive pill. And then it may be years, sometimes more than 10 years, before a woman for whatever reason decides to come off the pill and then, out of the blue, she’s again hit with terrible pain.
Not every woman is in pain for years though. Emily’s pain came on very quickly and severely, as she relates ‘I couldn’t lift a kettle with my right hand, I couldn’t drive, massive, massive pain. Of course, I’d no idea what it was, it was really horrible, so the doctor asked lots of questions, sort of leaned on my stomach – I screamed in pain.’
We don’t know exactly why endometriosis lesions cause pain, but they do ‘bleed’ and result in scarring and inflammation and seem to form their own nerve and blood supply, which may explain this. The women we spoke to told us that they were given a variety of reasons for the pain they were experiencing before they were diagnosed with endometriosis. These include being told ‘it will settle down’, ‘it’s normal’, ‘it’s a kidney infection’, the list goes on.
The huge challenge for GPs is that a lot of teenage girls experience period pain, only some of which will be caused by endometriosis, so it can be very difficult for GPs to distinguish who to refer for tests. It can get even more confusing after that, as scans only show up certain types of endometriosis, so women often get discharged back to their GP with no answers.
There’s one type of pain that we haven’t mentioned so far, but this is very important when it comes to endometriosis: pain with sex. And when it comes to this, it can be very hard to raise it with anyone, let alone your doctor. But you can’t afford to be shy about it.
Okay, if there were problems explaining your pelvic pain, things just got a whole lot more difficult. How do you talk to your doctor about sex, where do you start?
I had lots of problems explaining to doctors that I have painful intercourse. They didn’t really seem to understand and suggested it was due to different sizes of penises, or as I am quite small in height, it was down to me. Nobody really knew what to suggest except lubrication, and I found the conversation often got changed quickly. – Sophie
When it comes to explaining your pain to your doctor, including pain with sex, it’s best to be prepared: