I tell you there are when you well up … there are moments where people sit in front of you and just say ‘you’ve changed my life, because for so many years I have had this type of treatment and it just never really worked and now … the pain has completely gone. We have that story frequently, because during surgery we literally go everywhere and take all the endometriosis out and if they recover well, then the women with very severe cases feel their life is transformed and so you get these fantastic stories. Then there are the fertility patients who have given up on getting pregnant, and we remove the disease and then the patient conceives, without any assistance whatsoever, those are real achievements, but they are sort of personal achievements, you are the only people in the room to see that, it is wonderful. That is the driver for continuing to fight to do these things well, when everybody or the system might be dragging you down, you have to have some motivator. That is the motivator.’ – Dominic Byrne, consultant gynaecologist, President of the British Society of Gynaecological Endoscopy (BSGE)
Care pathways for women with endometriosis can be complex on several levels. Firstly, the disease itself sometimes cuts across different hospital departments as endometriosis can go beyond the gynaecological organs. Secondly, as we saw in Chapter 2, the surgery for it can be very challenging – it is not easy to treat and sometimes further treatment is needed. Finally, it takes many years of training and a passionate interest in the field to develop the services and skills required to treat endometriosis.
This chapter sets out the level of care that women with endometriosis should expect; how to navigate the system to receive that care, and some of the experiences of women and clinicians as recipients and deliverers of the ‘right care’ for endometriosis.
It is true that the priorities and thoughts of women receiving care aren’t necessarily always aligned to those of clinicians. Both groups, however, passionately want and strive for either delivering or receiving the best care: patient-centred, high-quality care in the right place, and at the most appropriate time. You could be forgiven for thinking, well, surely this is easy? But it is not. That doesn’t mean we all can’t strive for this, but we need to take a long hard look at the options and the pitfalls.
We can set out the challenges of delivering a suitable and sustainable care system to women, as well as the experiences of women receiving that care. In doing so, we will pinpoint the essential elements of care for women with endometriosis, identifying best practice as well as areas that are currently less well resourced.
Not all women will have access to some of the health professionals we interviewed, such as gynaecologists who specialise in endometriosis surgery, clinical nurse specialists, colorectal surgeons with experience of endometriosis and pain medicine specialists. And, not all women will need all of these elements in their care. However, it is important to know what can be available. Sometimes women won’t have all of these health services close to them – it’s not unusual for women to need to travel out of their local area to receive some of the more specialised services required to treat more complex endometriosis.
Remember back in Chapter 1, we discussed the problems women face in getting diagnosed? Well, the challenges of delivering the right care start at this point, because for some women, trying to obtain a diagnosis for their symptoms can be really difficult. It’s not meant to be like this and is very much unintended, however, we cannot ignore the sometimes circuitous routes that women navigate, sometimes over many years, to be diagnosed, so let’s have a look at a couple of those routes:
A number of women that we interviewed had ended up in their hospital A&E department when their symptoms first led them to seek medical help.
I actually passed out at a golfing range and hit my head on a boulder and that’s why they took me to the hospital, because I lost my vision so, had that not have happened, I probably wouldn’t have even ended up in A&E so they wouldn’t have even scanned me. – Madison
Madison went on to have emergency surgery and endometriosis was diagnosed – however, some women are unlucky enough to end up in the emergency room repeatedly, where their pain may not be taken seriously. Amanda told us: ‘I ended up in A&E a couple of times and they didn’t take it seriously, saying, “just take some painkillers, you’ve got heavy periods” and sent me home.’
Occasionally, an emergency admission can result in a different diagnosis before emergency surgery reveals otherwise. This happened to Saskia, who was initially told her pain was due to suspected appendicitis. ‘I’d been having pain on and off for a little while and I ended up in A&E a few times and it sort of just went away each time. Anyway after a couple of days I had emergency surgery for what they thought was my appendix. Afterwards when I woke up, I still had my appendix but also I had a name for this thing that had been causing me all this pain for such a long time and that was, you know, a really powerful thing, so it was a rubbish way to be diagnosed but I’m glad that it happened.’
Other women we spoke to had been referred to a specialty other than gynaecology, such as gastroenterology, urology or colorectal. In some cases, this led to a number of different tests – lots of them – and a delay in the diagnosis of endometriosis.
And it is entirely understandable how a woman might get here. It would be great if endometriosis could kindly just restrict itself to the ‘gynae parts’ – but sadly this does not always happen. This is a disease that involves itself with other organs very easily –sometimes the bowel, and also occasionally the bladder, the kidneys, the ureters (see illustration on page xxi) and even the diaphragm. This is clearly not a disease that is sympathetic to the way hospitals are structured.
The non-gynaecology route means that a woman can quickly get to understand lots of different specialties within a hospital, and often undergo many tests – but this is generally not at all helpful if you have endometriosis. A woman may end up with a colorectal consultant who understands endometriosis, or they may just end up with the rather intimidating ‘bowel prep’ and a colonoscopy (camera looking up your bottom) and no diagnosis.
This is probably the single most frustrating route to enter down, as Amy describes:
‘I was seeing gastroenterology for about two years and then they diagnosed me with IBS, which I knew was wrong, which was a bit weird actually because I really wanted a diagnosis and then I got one and then I just thought, that isn’t it. It was really strange.’
Amy ended up in and out of hospital and saw lots of different doctors. ‘I went to every hospital department going – neurology, gastroenterology, the breast clinic, the dietician, the eye clinic, infectious diseases, but never gynaecology.’
The cost of this route is immense on every level – physically, emotionally, financially and socially.
A GP, or general practitioner, has a very difficult job – to make an assessment, diagnosis and agree a treatment plan for a huge range of different problems in just 10 minutes. That might be okay for a straightforward problem, but for something like endometriosis, this is a very hard ask indeed. Basically, this is extremely unlikely to happen in one appointment.
Why is this? For a start, pelvic pain is a very common symptom that could be caused by many things and often it can be a case of ruling different things out. This can take time and repeated appointments. Secondly, there is no specific test for endometriosis. There is no ‘endometriosis’ blood test and scans are only really useful in the diagnosis of some deep disease. Endometriosis can only be definitively diagnosed by laparoscopic surgery, biopsy and ‘histology’ (the examination of the tissue with a microscope in the laboratory) of the endometriosis, which is an invasive surgical procedure that occurs somewhere further down the line – it is rarely the first step for women with endometriosis. Women may end up having their symptoms treated – sometimes with painkillers and/or hormonal contraceptives – without ever being told that it may be endometriosis, even when the GP may well have noted endometriosis as a possibility.
Some women were told by their GP quite quickly that their pain and symptoms may be endometriosis. Nicole said, ‘She was lovely and said, “I don’t think it’s anything to worry about, we’ll do the usual tests just to rule out anything, but just looking at your history, I think you’ve got endometriosis.” And I was like, oh wow, what’s that? And so she told me what it was, but she wasn’t 100 per cent sure, so she’d like to refer me.’
The crucial point here is that Nicole’s GP told her she may have endometriosis – not certainly, but it was a possibility – and she explained what it is. This type of early communication meant Nicole quickly had a possible cause for her symptoms. With the necessary information, you are able to discuss with your GP what the potential treatment options may be, and decide together how your symptoms will be managed during diagnosis – based on you as an individual and your personal requirements.
Unfortunately, some women can get stuck in this early stage for a long time, even years, whereas others pass through the system fairly quickly – it is the cause of an enormous amount of frustration for women and doctors alike. As Amanda told us, her GP continued to tell her that painful periods were normal. ‘When I did go there, say with painful periods, heavy periods, they’d just say “oh you’ve got painful periods, it’ll settle down” and I was never offered any investigation work.’
Some women end up seeing lots of different GPs in an attempt to find out what is wrong – and sometimes this may involve lots of different treatments, different diagnoses and a lot of frustration – but you remember when you finally see someone who listens, as Beth explains. ‘I had the IBS treatment, the UTI treatment, all of that, but I finally got to a good GP who was actually the psychology doctor at the University Health Centre. She talked to me, realised I was struggling but it wasn’t psychological, it was physical. She said, “I am really sorry you haven’t been referred to Urogynaecology or Gynaecology yet, I’ll do that for you now.”’
There is a lot that can be done to help this process. A useful start could be using pain diaries or using a mobile app like Clue and taking these findings back to the GP after a couple of months, or writing down your symptoms and how they affect your day-to-day life and taking this to show your GP. There is an example of a pain and symptoms diary here.
Vicki used this pain and symptoms diary from Endometriosis UK when she visited her GP for the second time. ‘When I had seen a bit more of the pattern, I then did the symptom questionnaire available on the Endometriosis UK website. I went back and I said, “I think it might be endometriosis, although it isn’t a kind of textbook description of it, it does fit with some of the bits that I’ve seen recounted on the website,” and so she said, “Yes, it seems reasonable, what would you like to do about it?”’
‘The most helpful thing I’ve found,’ Sophie tells us, ‘is to summarise my own medical history and take it to them so that you’re not having to say the words yourself, so you don’t waste time, and get your point across.’
The relationship between GP and patient is an absolutely crucial one – some women noted that they did not have the confidence to question their GP when they were younger but wish they had been able to.
Lucy makes a useful point when she explains the importance of having the right approach when speaking to your GP. ‘You have to realise that they (the doctors) are people as well. They don’t intentionally want to mess up or miss things. If you go in there all headstrong and abrupt, demanding stuff, you’re probably not going to get it, whereas if you have a conversation with them and respect the fact that they’ve been through medical school and university and have X number of years of experience, and persuade them to go down a different track, you’re more likely to get on with them. I’ve never really had a GP say no because I’ve just talked to them. And respected that they have qualifications.’
We are not experts, we are generalists and I think sometimes people lose track of that. – Dr Angie Gurner
It’s worth bearing this in mind – we shouldn’t expect all GPs to know a great deal about endometriosis as it is just one of many illnesses that they encounter and they may not come across it regularly. Since some GPs will have little exposure to gynaecology issues, it can be very useful to ask the receptionist who the gynaecology lead is in your practice – most GP practices will have one. Even when you see the gynaecology lead, this is not necessarily straightforward because women present with a range of symptoms, as Dr Sue Chorley explains: ‘Well, if it’s cyclical pain, I would typically ask: have they got pain before their periods? Does it go off a little bit when their period eases off? Have they got pain on intercourse … or bleeding after intercourse and pain? But there’s lots of women that I’ve seen that don’t fit into that typical textbook description and have pelvic pain the whole time.’
The other aspect to consider with regards to your GP is that their role has changed dramatically in recent years. In the past, GPs spent a lot more time on emergency care, whereas today they spend much more time on long-term conditions and diseases that arise from changes in the way we live our lives. Dr Angie Gurner explains what it is like being a GP today:
‘In some parts, standards have improved and the whole idea of communicating with the patients and the patients sharing decision-making, all that has improved. But I think the experience of being a GP has become undoubtedly more stressful, more managed by outside external pressures; national, local and driven by patients as well. So we feel quite boxed in sometimes and that is also balanced by a lot of pressure around costs. A lot of anxiety around complaints, which in 30 years has changed massively. So it’s a very, very different job. And a lot of it was very acute, we saw completely different medicine, we saw a lot of people out–of–hours, we did our own out–of–hours, we saw people we know having heart attacks, strokes, acute asthma. We deal with very little acute medicine now. We are dealing with very tightly managed chronic disease, but we are also dealing with a lot of lifestyle-related disease and mental health issues. Not mental health in terms of acute psychosis, but people with stress-related symptoms, anxiety and depression, relationship problems, family disputes, pressures at work and that takes up a huge amount of time. And so the job has changed, the medicine has changed, the pressures have changed.’
Essentially, Dr Angie tells us that being a GP is about ‘problem-solving and trying to work things out and piece together the history and examination findings. One of the skills of general practice is taking a little bit of time and seeing how things evolve.’ This is certainly very important for endometriosis – it would create a lot of anxiety and many unnecessary investigations if all women with one or more symptoms of endometriosis were investigated. It’s important to recognise this.
Dr Angie Gurner says, ‘A lot of our diagnoses are made largely on a history that we take, rather than our physical examination. Diagnostically, clinical examinations probably contribute about 5 per cent to the information that you glean about a patient and the rest is listening very carefully to the story that the patient tells you. Now that depends on skills, and I think today’s GPs are taught communication skills much more effectively, but it depends on time pressures and a level of interest.’
Beyond awareness, women really appreciated it when GPs listened to them and worked with them in ‘partnership’. It was acknowledged that this can result in a much richer dialogue between doctor and patient, as Amy explains when she talks about her own GP: ‘I think the good thing about her is that she will admit she knows about endometriosis, but she doesn’t know everything about it. But she’s been willing to learn and just sort of go with me. She was willing to refer me to a specialist centre and she’s been willing to look things up and have conversations with me. She trains junior doctors and she phoned me up once and said, “I was thinking of doing some training on women’s health and thinking. Why don’t we do it on endometriosis, and do you want to come in and talk?” And I was like, yes!’
But time is simply not on the GPs side. Not just the time to listen, but also the time to perform routine checks such as a vaginal examination. Consultant gynaecologist Andrew Kent explains: ‘GPs as a rule do not have very long in their consultation to take a history and examine patients. It also makes sense to defer intimate examinations if referral is likely.’
Both from the start and throughout a woman’s journey with endometriosis, the GP relationship is a crucial one. The feedback that we receive from women is that if it is acknowledged that their symptoms could be due to endometriosis, and if they are given the option to either do nothing at all, or to explore all treatment options, or to be referred to secondary care for more investigations, they are likely to be more satisfied with their care. Not just thinking about the diagnosis, but addressing pain management right from the beginning is also essential.
Giving GPs a better understanding and awareness of endometriosis is a priority area for charities like Endometriosis UK, as Chief Executive Emma Cox highlights: ‘I’d like to see increased awareness, online training and an online toolkit for GPs to use, to help them support women and reduce diagnosis time. So if a woman goes to see their GP with pelvic pain, which could be a range of things such as pelvic inflammatory disease, fibroids or endometriosis, GPs have a toolkit they can easily download, a flow chart of possible causes and tests, and a way of recording progress through this on the patient’s record – and with the range of symptoms for each condition, including endometriosis, which often aren’t linked together by the patient or the doctor, such as bowel problems. Explaining to the patient the symptoms they have come in with could be one of several things, and some of those things could be identified through tests, and for the GP to put them on that pathway and they go through the various stages would not only speed up diagnosis, but also engage the patient in understanding what is being done and why, and what future steps might be. And at the same time, ask them to keep a pain and symptoms diary so if there are cyclical issues indicating endometriosis, it starts to be picked up in a matter of months, not years.’
But this awareness raising would extend beyond GPs, as Emma describes: ‘I’d like to see more awareness generally, as well as awareness around GPs and practice nurses. I think there’s an important role for us as a patient body in helping women to recognise and describe their symptoms.’
Hints and tips from a GP about getting the best out of your consultation
Dr Angie Gurner tells us how patients can help themselves by preparing for the GP appointment:
It was almost like a release, you know having someone believe you, having someone say actually, we know you are struggling, come in, let’s talk about how we can help you. – Olivia
If you’re about to see a gynaecologist, most likely having been referred by your GP, what is going to happen? As ever with endometriosis, there is not a clear pathway even at this stage. Your GP may have suspected endometriosis, or maybe they recognised gynaecological symptoms but were not sure what it was. The gynaecologist will ask lots of questions (take your history), and will discuss possible investigations, treatments and management based on your individual case. We know that diagnosis is only through surgery, and it may be that the gynaecologist recommends a laparoscopy for a diagnosis. Or you may decide with the gynaecologist to try a medical treatment prior to surgery for a whole range of reasons, individual to you.
You might think that getting this referral, this final step, will then get you a diagnosis. Well, this may well be the case, but then again, it may not. It all depends.
Let’s take a closer look at this. First, let’s hear from Lucy: ‘I saw a gynaecologist and he told me again that I had a water infection. And I said, “Why do you think I have this?” And he said, “Oh, there was blood in your urine.” I told him I was bleeding, there was obviously going to be blood in my wee, and he told me that I just had to have antibiotics and go home, so I refused to listen to him.’
And let’s hear from Sophie how it went with her first gynaecologist: ‘The gynaecologist I saw told me in no uncertain terms he didn’t believe I had endometriosis. Which really upset me because I had spent a long time with the renal doctor explaining to me why I had this.’
So, if endometriosis is essentially a gynaecological disease, why is it that not all gynaecologists have the same understanding of it, and why do some gynaecologists miss it altogether? To understand this, we first need to look at the referrals process – that is, the way that you are sent on from primary care – your GP – to a hospital.
Referrals are usually made by your GP to a department, rather than to a specific gynaecologist. This means a woman could end up seeing a gynaecologist who has relatively little experience in treating endometriosis because their expertise is in other conditions.
Secondly, these referrals would usually be to a local hospital, which may or may not have a developed endometriosis service. So how do the patients that need access to an endometriosis centre actually get access to one?
At this stage, it’s helpful to understand the differences between what is sometimes called ‘secondary care’ and ‘tertiary care’. Many local hospitals will provide standard services, mainly covering superficial or less complex disease – these form part of ‘secondary care’. Where services provide more specialised care, such as that provided by the multidisciplinary teams, this is usually within ‘tertiary care’ services. Most patients would normally be seen within ‘secondary care’ but would be referred on to ‘tertiary care’ if their disease was deep or severe.
If this sounds complicated, it’s because it is – identifying the women who need to be seen by a multidisciplinary team doesn’t always happen quickly, but it is really important, not only from a surgical perspective but also in terms of their overall treatment pathway. Let’s now look at what an endometriosis centre is, and some of the clinicians who form part of the multidisciplinary approach.
There are lots of gynaecology departments in hospitals across the UK and some have developed specialist knowledge and experience in endometriosis, along with a multidisciplinary team. In the UK, for example, the British Society for Gynaecological Endoscopy (BSGE) currently accredits endometriosis centres, and you can see where centres are on their website (see resources section here).
As its name suggests, a multidisciplinary team means that the centre has built up a team of people with different skills, and this ensures they can support even the most complicated surgery. For endometriosis, the multidisciplinary team will comprise gynaecology surgeons who specialise in endometriosis, colorectal (bowel) surgeons, urology surgeons, pain-management experts and endometriosis clinical nurse specialists.
But in terms of getting referred, GPs may not know about endometriosis centres which can mean accessing the right care quickly can be hard.
If you are looking at symptoms such as pain or infertility, there may be a balancing act – does your GP try and find the quickest referral route, or the most appropriate service? What are the woman’s priorities?
GPs will often look for quick referral routes, but they are under huge amounts of pressure and face frustration; they are acutely aware that they have limited resources available to them and need to refer appropriately. Consultant gynaecologist, Dominic Byrne describes the issue: ‘At the moment the challenge would be to make it a level opportunity for all patients. Patients who live in Cornwall will find me, but if they live somewhere else, they may find that they haven’t got someone who would undertake this type of surgery. Also their local GP or practice nurse, or whoever they talk to, isn’t aware of what can be done, so there can be a lack of referral, not because of any intransigence, just actually a lack of understanding of what’s available.’
It’s extremely important for a woman to ask questions and take time to consider the options at every step of their treatment, particularly when considering surgery. Although accessing the right care doesn’t always happen quickly and navigating the system can be difficult in some areas, knowing what can be available is empowering. Dominic Byrne tells us he uses the analogy of cancer services to describe what should happen in terms of being referred to the right place: ‘Most gynaecologists now have a fairly well-developed pattern of referral for cancer. If they looked inside someone’s abdomen, saw it was cancer, they wouldn’t have a go and try and remove the bits they could and then send them to the cancer team; they would just stop at that point, say this is cancer, and then send them to the specialist team. We need to try and get gynaecologists to mirror that philosophy in deep endometriosis and then more patients will be signposted to the correct place first time or at least earlier on.’
Thankfully, more of this is happening now than previously. Andrew Kent explains: ‘The concept of centres for the treatment of endometriosis is slowly gaining traction but although surgery and outcomes are difficult to measure, it is possible, and some good research has been done in this area. It is important that if a surgeon is unable to treat the endometriosis at initial surgery that the patient is referred to someone who can, if this is the preferred method of treatment.’
Whether women realise it or not, the power ultimately lies with patients to demand the right services, to be aware of what ‘good’ looks like. But this, in itself, is also a lot to ask.
If you empower the patients with the knowledge, then actually they will drive the change. – Dominic Byrne
Hints and tips on meeting your gynaecologist
One of the most important developments in recent years has been the establishment of a small network of clinical nurse specialists who provide treatment and support to women within endometriosis centres. They have a pivotal role in the multidisciplinary team as they will often be the ones who are the interface between various hospital departments, the surgeons and the patient.
‘I was looked after very well,’ Amanda tells us, ‘because I had Wendy looking after me and she was absolutely amazing. If she wasn’t there then it would have been difficult. She was just there if you’d got any questions.’
Wendy-Rae Mitchell was Amanda’s clinical nurse specialist, who was there for her after she had complex surgery for deep endometriosis: ‘I think it’s our job to make sure that women have an understanding, a knowledge and a supporting system so they can make the right choices for them at the right time. And as with everything, things change, they will change, their situations change so again, we need to be with them on that, supporting them and understanding that what they may have thought about a year ago, might be different now. We need to work with women to enable them again to move forward with those stages.’
Nurse specialists like Wendy give women the opportunity to prepare for treatment; they also support women through and after treatment, and give them the opportunity to ask questions, to raise concerns and to look at the broader impact of endometriosis on their lives. ‘The nurse acts as a link,’ Wendy tells us, and that link can be to a wider network of services, such as pain management, urology or colorectal services, pelvic physiotherapy, or to counselling. It’s important to know that not all hospitals will have access to all these services.
‘I find it amazing to hear how women cope.’ Wendy explains. ‘I never cease to wonder how people get through a day or get through a period of having to wait for their surgery and then afterwards the fact that it’s so lovely to see the results. You know, whether they’ve gone on to have children or they’ve gone on to live a life without pain and feel that they’ve got their freedom back and their independence and they’ve got a life; they’ve got a future ahead of them.’
Not all women have access to a nurse with expertise in endometriosis, but women rated it as very important to them. ‘I would like to see centres all around the country, centres that are talking to each other and sharing knowledge, skills, expertise,’ says Wendy. ‘I’d like to see a nurse in every centre and I’d like to see the nurses work into a structured pathway where the counselling side of the work is seen as important as the procedure part of the role.’
Wendy touches on an important point, that joined-up care is about more than surgery – endometriosis can take its toll on so many aspects of a woman’s life, so access to talking therapies, to services that look at women holistically, can be vital to help women achieve a better quality of life.
Zoe went to a specialist centre. ‘The one positive thing that came out of that was the clinical nurse specialist who did provide the emotional support and really understood that side of things, which no one ever has – we need more of that support.’
Zoe goes on to say, ‘The clinical nurse specialist spent an hour with me and took my whole history and symptoms, treatment, surgeries to date and also wanted to know about the emotional impact and how I manage, how I cope, what my strategies are, and made other suggestions that were helpful and was also available at the end of a phone line if necessary, and proactively made contact to check-in how I was. That is what women need, that is absolutely what we need, so that model absolutely needs to be replicated everywhere going forward.’
We’ve already seen that endometriosis can be enigmatic, that symptoms don’t always correlate to the severity of disease, and, conversely, that women with severe endometriosis can actually respond better to treatments like surgery.
So what can be done when surgery or hormonal treatments don’t provide enough relief from enduring symptoms such as pain? Well, actually quite a lot; here we look at pain-management, clinical psychologists and physiotherapists.
First of all, there are pain clinics looking at a wide array of pain conditions. Often these have been established to deal with common musculoskeletal problems such as persistent back pain but through these, it’s possible to access:
We heard from women who had found these services very helpful, but in some parts of the country there are clinicians that have taken this beyond general pain management, to provide a specialist pelvic pain service. It’s important to know that these are not widely available, but in our quest to explain ‘right care’ to you, these are services that for some women have been extremely helpful.
Clinical lead for pain services and consultant in anaesthesia and pain medicine, Dr Natasha Curran tells us more about her work: ‘Most of the work is behavioural management to help people improve their quality of life despite having endometriosis, and particularly in our case we focus on pain. We know that pain is the limiting factor for most women with endometriosis, which limits their social functioning, their family functioning, their work function, their sex function, bowel, bladder, it can have an impact on all of those things and I guess we make sure in assessment that we ask about each of those individual things, so we get a very good sense about how her pain impacts on those things, and we don’t shy away from any of those things at all.’
Natasha works with surgeons operating on women with endometriosis, so her knowledge of the disease started in the operating theatre. Natasha works closely with clinical nurse specialist in abdomino-pelvic pain, Julia Cambitzi. Together they run a pelvic pain management programme called Link, named because it’s a ‘link’ to other things, as Natasha explains: ‘The nurse is really key as a link through the whole of the service. I do things on the pain-management programme as a consultant, I also give a talk on the pain-management programme, which I think links that whole thing, that it’s a medical intervention. This is an evidence-based treatment which is shown to improve quality of life and reduce the impact that pain has on people’s lives. I talk about pain mechanisms at the start of the programme and do a question and answer session at the end.’
On a pelvic pain-management programme like this, women learn techniques to improve their quality of life despite having pain. This is about much more than drugs to control pain. ‘It’s about putting people back in control, rather than the pain controlling them, so they can make choices,’ explains Natasha. ‘People can get into an ‘under–and–over’ activity cycle so on good days, they do loads and the next day actually the pain is worse, and so they then do less, and actually over time we know that it goes, that what they can do is less. So we try and reverse that and that means that even on bad days doing a certain amount, but then on good days, not overdoing it and gradually, like a marathon, you slowly, slowly build it up so that over a course of weeks, months, years, people are able to do more. Pacing activities is key to that, so what we are talking about is you can pace anything – if sitting is a problem, standing is a problem, sex is a problem, you know, you can pace all types of activities such that they don’t flare the pain. And having flare-up plans, which is very important. And then actually what to do when there is a flare-up of pain so that people then don’t get into an understandable panic, not knowing what to do or what am I going to do if this happens to me. We know that if you’re anxious about things or if you are worried, it can often exacerbate how one experiences it.’
So this is not about telling women that their pain is going to go away – rather, this is about finding ways of living with the pain, ways of managing it day to day and coping with it. It works alongside any medical or surgical treatment that a woman may be having. It’s worth noting that this is not about quick fixes – it’s a lot about coming to terms with persistent pain, and acceptance. ‘We expect that everyone is going to cry in a consultation,’ Natasha tells us, with great honesty. What is important is that women with persistent pelvic pain come out of the course able to do more than they did previously – whether that is getting out of the house if they’ve been housebound, being able to walk to the gate, or open the curtains, to running marathons or getting back to work – each step forward matters to that person.
When it comes to pacing, ‘I think people kind of get it,’ Shona Brown, clinical psychologist, tells us, ‘but then when they are trying to do that, their mind will go “Well, I should be able to do this” or “I need to do this” or just how unfair it feels to have to plan activity more and thinking about that, so that’s another thing that we talk about in the group, what is it like to try and do things in a different way. And it is some of those emotions and the sense of unfairness.’
Shona runs another pelvic pain-management programme, similar to Link, that women attend for six mornings, covering areas such as the impact of endometriosis on sex. Women find it really helpful to meet other women in the same or a similar position, she tells us. ‘I think there is a focus on adjustment, and we use the word acceptance a lot in the group and in the individual sessions I do’.
‘It was only the other day someone said to me “acceptance, that’s a big word”, and it is. And I think there are sometimes misconceptions that come with that. You might think I am just resigning myself to living with endometriosis, or it means liking living with endometriosis; that’s not really what we are meaning. The Latin derivation of the word acceptance is “take what’s given”, a willingness to take what is given and to try and have the best kind of life you can with that. I think often women feel quite stuck. It’s such a horrible diagnosis and they are not really sure how they can move forward with the things that are important to them. I think there’s a “coping strategies” bit of the group, but there is also a “getting your head around it” bit of the group and sessions.’
Few women currently access this type of course, but they can be extremely helpful in coming to terms with living with pain and symptoms from endometriosis.
A number of women have found pelvic physiotherapy helpful in terms of managing symptoms such as painful sex and pelvic pain by working on the pelvic floor. ‘It has changed my body and my mind,’ says Lucy. ‘Of course I’d have painful sex when my pelvic floor was rock solid from years of pain and tension.’
What does pelvic physio involve? Basically, this is about working on the pelvic floor muscles, which may have been indirectly impacted by both the endometriosis itself and any surgery to treat the disease. Pelvic physio involves working on any ‘trigger points’, which are sensitive or tender areas within a muscle that can cause pain. Whilst this is not widely available on the NHS, some women have found it very helpful in managing their symptoms. You can find more about organisations that can help you find a women’s health physiotherapist in Resources (here).