Endometriosis Awareness Month

My symptoms presented in my teens, and I have spoken in the past about being quite embarrassed by them, not addressing them for some time. Were there any occasions when you thought ‘something doesn’t seem right here’?

Eimear suffered very severe period symptoms in her teens. Eimear was quiet, shy, and suffered a lot in silence. The extreme cramping and pain appeared to worsen in her late teens, and I felt it was not normal. We were guided by our primary healthcare provider who was sympathetic but felt the condition would improve as Eimear got older and gynaecological issues were largely dismissed at that time. Eimear was investigated for gallstones and had her gallbladder removed while in university. I was hopeful that perhaps this had been a contributor to Eimear’s pain and discomfort, however, the severe period symptoms persisted but still weren't investigated further by the consultants she attended.

On the 2nd of November 2016, I got diagnosed with endometriosis. I remember feeling so relieved to have a name for my illness. Can you remember how you felt when I told you the outcome of my surgery?

Eimear finally received a diagnosis of endometriosis in 2016 - I felt very annoyed that it took so many years of suffering to reach this point and very let down by our health system. I was relieved that at last a name had been put on the condition and I was proud of Eimear for having persisted in searching for a solution after being dismissed for so long. It helped that we visited Sydney in 2016 and were with Eimear after her surgery.

Prior to my first appointment at the Royal Hospital for Women, I had heard very little about endometriosis and chronic pelvic pain. How important do you think it is for loved ones to become familiar with endometriosis and its symptoms?

I had to admit to never having heard of endometriosis. Education is vitally important, and the condition should be included as part of the SPHE (Social, Personal, Health Education) curriculum in our upper primary and secondary schools. Sadly, it is only through Eimear suffering with the condition that I have become familiar with its symptoms and treatments. I have yet to see a leaflet or any information on the subject in a primary care setting or outpatient clinic.

Despite the geographical distance, my family continue to be my strongest support. What strategies do you use to achieve this?

Despite living so far away from Eimear we try to support her with regular daily contact-FaceTime has proved very helpful. We try and visit every second year for a number of weeks and Eimear has managed to get home in the in-between years though long-haul travel is tough when you're unwell. We have witnessed the toll that travel takes on Eimear’s symptoms and we support her as best we can on those initial few days after enduring the journey to Ireland. Luckily, several extended family members have visited Sydney as have Eimear’s partner’s family.

Many of our readers will relate to our situation; loved ones overseas yet feeling the burden of the disease through our lived experience. What do you find most challenging about this? What has helped cope with such challenges?

It can be very challenging and worrying at times that Eimear is so far away from us. We try and remember the excellent support she has in Sydney. She has a wonderful supportive partner who is so patient, understanding, and helpful. She has access to a team of excellent professionals - Pain specialist, Gynaecologist, Physio, GP. She also has a network of very good friends who are there when she suffers a flare up, needs to change or cancel plans or needs support with Jack, Eimear’s 2year old son.

What improvements would you like to see in society to assist not only the individual, but families and loved ones in dealing with a diagnosis of endometriosis and its long-term impacts?

As mentioned earlier I think education is vital to spread awareness of this very debilitating condition. Things are improving albeit very slowly. The focus on endometriosis during March is helpful. Spreading awareness needs to start in school with support for students and follow on support through college and in the workplace. There needs to be much quicker access to gynaecology care, tests and/or scans, leading to speedier diagnosis. I think those with a diagnosis should be granted *Medical cards to cover the ongoing cost of medication & healthcare.

Finally, Angela, what advice would you give to a parent whose child has just been diagnosed with endometriosis or is displaying symptoms?

If your child has symptoms that you feel are not normal don't be fobbed off with paracetamol and a hot water bottle solution!! Be a nuisance and a demanding mother unlike me until you get answers. Attend appointments even with your adult child as I think they are more likely to be listened to with a parent in attendance.

*Medical card- The medical card scheme in Ireland allows you to access public health services free of charge. Eligibility for this scheme is means tested based on income, savings, and investments.

Josephine, you suffered many symptoms relating to endometriosis from such a young age. Can you tell the readers how your journey began and the impact it has had on your day-to-day life?

My journey with endometriosis began at eight years old. I remember being in primary school and told to tie a jumper around my waist to put pressure on the pain that so often sent me to sick bay. The pain was already so bad that it would make me kick my legs against walls and miss drama performances. The pain grew more severe and regular when I got my period at ten years old. My periods were so heavy that I would have to wear two overnight pads and change them every three hours. Even then, they would still bleed through my school skirts. 

It quickly became chronic and a constant, unwanted companion. I did not understand that this level of debilitating pain was not normal. I even received feedback on a Year 7 PDHPE assignment that told me it was ‘melodramatic’ to describe periods the way I did. My pain was viewed with cynicism by almost every doctor I encountered. “It is conversion disorder”. “You want to get out of school”. “You can’t get period pain when you aren’t bleeding”. “It is because your parents are divorced”. My mother suspected it was endometriosis but was dismissed when she addressed those concerns in emergency room visits.

At thirteen years old I was told I was faking it by two doctors in the same hospital admission. The misdiagnosis even resulted in my undergoing an emergency surgery for appendicitis. I was discharged twelve hours post-op and received no investigation as to why a thirteen-year-old had a ruptured ovarian cyst. 

My mother and my GP never stopped advocating for me. They were the reason I ended up meeting Dr. Rebecca Deans, my gynaecologist. She changed everything when I met her. On September 27, 2016, just over a year after surgery for the cyst, Dr Deans performed a laparoscopy for suspected endometriosis. I woke up from the anaesthesia to Dr. Deans telling my mum I had Stage IV endometriosis. The surgery was four hours, three hours longer than expected and I was told they had found endometriosis everywhere. The recovery was hellish, but I had proof that I was not lying. 

My endometriosis journey did not stop at diagnosis. I am in daily pain. It is in a constant state of fluctuation and presents itself in forms varying from day-to-day pain to acute flare-ups. The biggest change since diagnosis has been the interdisciplinary support I receive for pain management. This support is led by Dr Jason Chow I was introduced to after my diagnosis surgery. My interdisciplinary team includes a pain specialist, gynaecologist, general practitioner, pelvic floor physiotherapist, neurologist, dietitian, osteopath, psychologist, psychiatrist, and gastroenterologist, among others. This support takes place in both planned and emergency settings. These admissions have all been in pursuit of managing my pain, whether that be through planned infusion, emergency surgery, emergent pain management, or a different method. Endometriosis bleeds (pun, intended) into every aspect of my life. This support manages the extent to which endometriosis limits or restricts my capacity to engage in friendships, university, work, and my life outside hospitals and doctors’ rooms.   

In your experience, what do people find difficult or challenging in terms of providing support effectively to a loved one with endometriosis?

My mum has been my fiercest supporter. She has always believed me, always advocated for me, and always held my hand as I cried from the pain. When I was diagnosed with endometriosis at fourteen, I was no longer able to be treated in the paediatric system as I was ‘too complex’. As a fourteen-year-old, you cannot stay in an adult hospital without a parent. This meant that my mum slept on hospital room floors to ensure that I received the right medical care. From my perspective, I would say that the most challenging part of supporting me has been going to work after sleeping on a hospital floor or the time and energy involved with advocating for your child. However, if you were to ask her, she would say that the hardest part is seeing me in pain and not being able to take it away. I know she; my stepdad and my sister find it hard that you cannot just solve a chronic illness – no matter how much you love someone. I believe it is also challenging to have no one in her life besides my stepfather who understood the experience of being a mother to a child who was chronically ill. 

My friends are another foundational part of my support system. I know they feel helpless when I am in pain. They also find it challenging to understand the amount of pain I experience when it does not resemble any sort of pain they have experienced. That is not helped by the fact that many of my friends were introduced to endometriosis through me. In this way, the misinformation and lack of awareness surrounding endometriosis present barriers not only for people with endometriosis but the people who love them and want to support them. One of my best friends has said that the long-term and chronic nature of my pain is the most challenging to navigate as it differs significantly from her experience of other loved ones being in pain. Those have all been very short-term. It is easier to show love and care to those with short-term pain experiences. You buy flowers and bring food. I am in pain all the time and that unfamiliarity is the hardest for her to navigate because she is scared that it means I do not feel as loved. 

I want to say to anyone who supports a loved one with endometriosis that they will know when you care. If you feel like you are not doing ‘enough’, you are probably doing more than anyone. 

What do you find most challenging about managing your condition? 

I have had friends and family members who do not believe that I have a chronic illness. I have also experienced people ending friendships with me as soon as I become ‘too sick’ or when the novelty of hospital admissions wears off. Feeling characterised as the ‘sick’ girl has made me feel the urge to be perceived as ‘normal’ and resist the need to pace myself. This is best explained by comparing the treatment of a cold to the treatment of chronic pain. A cold is temporary, and rest is known to speed up recovery time. When my peers who do not have a chronic illness get a cold, they give themselves deserved empathy. They may choose to take a class off or apply for an extension for an assignment. My pain is every day and therefore cannot just rest whenever I feel pain. Even when I flare up, I do not give myself the rest and care that I should. Pacing has therefore been a significant focus of my pain management with Dr Chow. 

I also manage my condition by using it as motivation to promote endometriosis awareness. This advocacy is important to me but can becoming draining in the face of the dearth of misinformation that exists. Since I was diagnosed, I have regularly been asked ‘Why don’t you just have a hysterectomy?’ Some people also feel entitled to ask questions like “Are you worried you might not be able to have kids?”. The frequency of these questions means I am never shocked. However, they do take a significant toll. There is a difference between being invasive and being curious and wanting to learn about endometriosis. I don’t want to be sitting in emergency rooms after pushing myself to go to university, too scared to go on my phone to distract myself from screaming in pain because I don’t want to seem like I don’t need to be there. I don’t want to have to choose between having a shower or cleaning my room. I don’t want to be in the hospital several times a year. I don’t want to have surgery. I don’t want to burn my skin with heat packs because the pain is so bad. I don’t want to fall asleep during classes. I don’t want to be making appointments all the time, let alone going to them. I don’t want to wake up and go to sleep in pain. But I do. Managing my condition takes hard work that most people do not see. I find that hard. It is challenging that much of my experience with endometriosis is invisible or that its impact on me is a ‘choice’. This can make managing the condition an isolating experience as it can feel like no one truly understands. 

You have always been very open about the fact that your management has included hospital admissions since your early teens. I would like to say that it has been inspiring to watch you navigate this challenging journey with such maturity, grace, and strength. The Macquarie team has gained a special rapport with you and your loved ones. If you could trace your memory back to the earlier years, what have been the most important elements of care during a hospital stay? 

This means so much to me. My experience at Macquarie Ward at The Royal Hospital for Women has been transformative and my endometriosis journey would not look the same without them. I first came to that ward a few months after being diagnosed. I had never experienced that kind of care and validation. I was fourteen years old and navigating the world of pain management for the first time. It was the first time I had experienced a hospital admission without the ever-present feeling that my pain was not being believed or approached with cynicism. 

I think it is very easy for hospitals to become a place that is feared. I have had plenty of experiences elsewhere in the medical system which have sparked fear and feelings of distress. These feelings do not only arise in medical emergencies but also in medical environments where the best you can feel is tolerated. All my experiences in Macquarie Ward have made me feel welcomed. Though I may be in my highest levels of pain when I come through those halls - that space feels safe. I was a very young person in an adult ward and in so much pain. I felt isolated from my peers and anyone my own age. Everyone there made me feel cared for as a complete person and not simply as a set of symptoms. They have also shown care by providing support for my family. My parents always know that I am safe and looked after when I am with the Macquarie team.

In the early years, the most important part of care in the hospital was validation. I struggled to believe that my pain was legitimate even post-diagnosis. That can look as small as not questioning pain descriptions or responses to pain. My knowledge of my own pain always felt respected and that was a new experience. As I began to become more familiar with the team through more admissions, I began to rely on rapport-building and relationships. I feel valued as a patient and like they believe I am a capable person whether I am sitting in a hospital bed or not. I feel this when the nurses ask how my social work degree is going when they remember what music I like, and when they ask questions about my life outside the limits of my pain. I will always remember the night nurses who have brought me cups of tea when the pain has kept me awake all night, the nurses who want to hear about the books I am reading and the nurses who allow me to ask them what makeup I should buy to cheer myself up. I have always felt care through this, and I particularly relied on it during admissions during COVID-19 when I was not allowed visitors. 
 
I will always remember a specific moment with you, Eimear. I am not sure you even remember it. I came into Macquarie Ward for an emergency procedure during Endo March. I was in terrible pain and feeling very defeated. You heard that I had been admitted and came to visit my room before my procedure. You brought me a biscuit that said ‘Endo March’ wrapped in cellophane with a yellow bow. You said you had been giving them to all the patients on the ward who had endo. It was just a small biscuit, but it really meant something a lot bigger. It still makes me emotional to think about. That thought and care is what best captures my experiences with the team. 
 
In your opinion, what are some useful things a support person/group (outside of the hospital setting) can do, in helping to live with chronic illness such as endometriosis? 

I think I am most supported when I feel safe enough to be in pain. A support person/group can facilitate this by navigating support through a whole-person approach. Support is most useful when endometriosis is not supported in isolation from the whole person - their environment, passions, personal life, professional life, etc. The whole person must be supported, not simply their chronic illness. I am not a different or separate person when I am ‘well’ or ‘unwell’ – I am always Josephine. Endometriosis is part of my life and that is my 'normal'. Allowing people with endometriosis to discuss their experiences of ‘normal’ is important and needed. It means they do not have to censor themselves or be made to feel like they are attention-seeking.

It is also important not to assume someone’s need for support or lack thereof. People with endometriosis have lived with pain for so long that a lot of us only ask for it when we really need it. They might not be used to asking for help as it unfortunately has not always been given. Therefore, I think the most useful thing is to listen and be curious. It might be helpful to make a priority ranking of challenges the person is facing and regularly checking in to see how these priorities change may assist to ensure that the methods of support are always relevant. 

I also believe that a support person/group should not simply rely on the person with endometriosis to educate on the condition and how it might impact people’s lives. They should listen to various lived experience sources, including blogs, books, and research. Supporting someone with endometriosis should listen to their experience on top of an informed foundation of knowledge. 

Armed with all you know now, if you could offer support to someone just diagnosed with endometriosis or experiencing symptoms, what would you do or say?

I would say I am sorry. Endometriosis is so hard, and it is an experience not to be envied. When people are experiencing symptoms or receive a diagnosis, I typically like to support people by sending them a list of items or resources that assist me with my symptoms. This list includes a TENS machine, my favourite heat pack, the doctors I see, and books that I have found helpful. I hope that any people who have just been diagnosed know that there is no right or wrong way to feel. I hope that people who are just experiencing symptoms know that it is not normal. I know that these symptoms can erode your sense of self whether you have a diagnosis or not. I hope that people on their journey with endometriosis, no matter what chapter, remember that they are strong even when they feel their most fragile. 

Finally, Josephine, if I asked you to give a short message to your support network, be this your family/friends/healthcare team, what would you say? This can be a message of gratitude, hope, reflection, or a combination of. 

I do not believe I will ever be eloquent enough to convey my gratitude. My healthcare team – particularly Dr Chow, Dr Deans, and the Macquarie team – have changed my life. Thank you for caring for me during my most vulnerable moments. I am forever in awe of your dedication and compassion to this work that I have benefited from. I am forever grateful for your unwavering belief in me. Thank you to my friends for being a soft place to land. I am grateful for the unconditional love and support I have experienced from my family. I will forever be indebted to my mum for her advocacy and the sacrifices she has made for me. She was the first person to believe my pain and in turn, led me to my support network. I would not be who I am or where I am today without them.

Can you describe the different ways nurses provide support to those with endometriosis at the Royal Hospital for Women? 

Nurses play an essential role in providing care and support to people with endometriosis. On Macquarie Ward, this is mainly done during their inpatient stays, where nurses can provide emotional support, often instilling some trust in their health care providers, especially if their road to endometriosis diagnosis has been lengthy and challenging, where feelings of frustration, anger and anxiety have developed.  Nurses can also provide educational support and advise patients on available resources.

We know that currently, laparoscopic surgery is the only way to diagnose endometriosis, and no doubt you see many patients in this regard. What are the other ways relating to endometriosis in which care is provided on Macquarie ward?

On Macquarie ward, we provide unplanned care for people with endometriosis, those who experience acute flares of their pain are assessed by our colleagues in the Emergency Department and are then transferred for ongoing management with us on Macquarie. This is often followed by seeing a specialist and planning how best to manage the current flare and ongoing follow-ups. We also provide care on a planned admission basis, for an infusion of pain-killing medicine to provide longer-term relief and medication rotation. With the new fertility centre, patients are often referred for assessment and management of their fertility if affected by their endometriosis, and we may at some point during this treatment again provide care to this patient population.

Suffering from an illness that has no definitive cure has many challenges. In your opinion, what are some of the challenges nurses face in caring for this patient group? 

Many aspects of healthcare have an answer to why something is happening or can advise a patient to change lifestyle and habits to achieve a better outcome. Endometriosis patients, however, have very few answers in this respect, and it is clearly understandable why people with endometriosis and associated chronic pelvic pain develop depression and anxiety. It can be challenging as we are all individuals and therefore respond and react differently to treatment and support, one fit certainly does not fit all! Hence, it is crucial to provide individualised care to people with endometriosis, validate their personal feelings and work together on management plans.

You have worked at the Royal Hospital for Women for almost a decade and practiced in the UK prior to this. Would you say there have been improvements in the way of support and resources for healthcare providers in this area of healthcare over this time?

Certainly, many improvements have been made in recent years following wider awareness of the condition. Where once it was considered that a patient was drug seeking due to the pain associated with endo, or a psychiatric condition because no reason was found for the pain, it is now treated with more compassion and empathy. Endo and chronic pain specialists pave the way in advocating for these patients, creating wider awareness, and funding for research, resources, and treatments. Very recently, here at The Royal Hospital for Women, a specialist chronic pain multidisciplinary team has been assembled comprising a Clinical Nurse Specialist, Psychologist, and Physiotherapist with access to other allied health team members to provide holistic care to the many people who have endometriosis and its associated symptoms. A postgraduate certificate has recently become available for nurses wishing to further expand their knowledge regarding chronic pelvic pain, which will provide a deeper understanding of the patient’s perspective.

What supports and resources do you avail of find useful in this area of healthcare?

Endometriosis Awareness Month in March is invaluable in keeping us updated on new support and resources we can then advise our patients about. Eimear McHugh’s recent success in gaining the Chronic Pelvic Pain CNS role has been vital in bridging the gap between patients, the ward staff, and specialists, and never fails to share her expert knowledge when a tricky question is asked. An increase in online resources from sites such as Endometriosis Australia are very useful to both patients and staff. 

What would you view as the most important components of caring for patients with endometriosis and associated symptoms, such as pelvic pain or infertility?

Being non-judgemental, understanding that they have traveled a long healthcare road to this diagnosis with many twists and turns, often leaving them feeling in a state of hopelessness, their coping strategies have seen them through, and they may have even lost trust in our healthcare system. Listening, empathising, providing time, and validating their feelings give nurses an excellent opportunity to provide individualised, holistic care.

As nurses, we are in a privileged and unique position to be with patients when they receive a diagnosis such as endometriosis. The diagnosis can result in so many emotions for patients and loved ones including, sadness, anger, and hope, to name but a few from my own experience. What would you say to patients who feel overwhelmed or confused about how to cope and manage their chronic illness in their everyday lives? 

Allow yourself to feel your emotions. There are no bad or wrong emotions. Some days will be good, and others not as good. Take time to devise a management plan that will work for you. Take advantage of psychological support to learn and build coping strategies that will help see you through the not-so-good days. Talk with your family and friends, the more information they have about what you’re going through and how you’re feeling helps them better understand how to support you.

Finally, as one of the most experienced nurses in our Gynaecology Department, what advice would you give to a colleague to help them provide effective nursing care to those with endometriosis? 

Take time to listen, this leads the way to understanding the patient's perspective allowing for individualised, compassionate, and holistic care.

Grasp educational opportunities as the more knowledge you have the better placed you are to be a resource yourself to both patients and other staff.

Do not become complacent and task-orientated when caring for endometriosis and chronic pelvic pain patients, or indeed any other patient population as this can lead to generalisations and assumptions being made.

Can you describe your role in the MDT in care provision for endometriosis and chronic pain patients? 

Part of my job is to provide psychological assessments and treatment options for people with chronic pelvic pain who present to our multidisciplinary pain clinic. Together with a doctor and physiotherapist, we aim to provide a comprehensive and holistic assessment of a patient’s pain using a biopsychosocial framework- that is, not only looking at biological factors that are impacting and contributing to chronic pelvic pain but also the psychological and social factors that play a role in the way the body responds to pain. I am also working on developing and evaluating a program for women/people with chronic pelvic pain, which is an exciting new project that will provide pain education, targeted physiotherapy exercises, and psychological tools to help empower patients to manage their pain with greater confidence, proactive strategies, and social support. 

What do you find most challenging about working in this area of healthcare? 

Chronic pelvic pain is the most common cause of referral to women’s health, yet assessment and treatment options are scarce. This is partially because chronic pelvic pain can be a complex condition to diagnose and treat. The journey to diagnosis is often a long one, and fraught with shame, stigma, and an overall sense of disempowerment as people struggle to obtain the correct diagnosis and find themselves on a roundabout of doctors’ visits, specialist referrals, and hospital admissions. By the time patients arrive at our clinic, they have often had a very tumultuous journey already. Developing trust can be hard (understandably) but working with people to take control of their pain, rather than allowing the pain to control them, can also be very rewarding. 

For patients with chronic pain, we have long battled to rid the viewpoint held by many that the pain ‘is in their head’. How do you break down this barrier effectively, when even a patient presenting to you believes that is why they have been referred to a psychologist?
 
Unfortunately, it is not uncommon for patients to be told directly or indirectly, that their pain is in their head, that their pain is not real, or be forced to question their experience of reality or even their own sanity (“Am I going crazy?”). I would say, of course, you are not! Your pain IS REAL. It’s very important to be clear on that from the start. Most patients come to specialized multidisciplinary treatment services because they are experiencing troublesome and persistent pelvic pain that has not been adequately understood (or treated) following a pure biomedical pathway. When we start to look at ALL the factors that are contributing to a person’s chronic pelvic pain and how chronic pelvic pain is interfering with their life using a biopsychosocial approach, it is easy to see how one might derive benefit from seeing a psychologist.

What advice would you give to a patient who is feeling overwhelmed at the prospect of seeing a psychologist as part of their treatment plan for chronic pain? 

Seeing a psychologist for chronic pelvic pain can be scary, especially if you don’t know what to expect. A psychologist should be warm and empathetic, and validating of your pain. They should also be able to help you gain a broader understanding of not only how your body responds to pain, but also how other factors like stress, and previous trauma, can impact your central nervous system, which in turn, impacts the way we process pain. Remember that whilst talking helps, research tells us that the work you do in between sessions is just as important. Some of the things that a psychologist might ask you to do at home include slowly increasing activity levels through pacing, mind-body relaxation strategies, and utilizing a combination of cognitive and behavioural strategies to change the way your central nervous system is processing pain.  

In your opinion, how important is a strong, reliable support network for patients who are suffering from a chronic illness such as endometriosis? 

When you have chronic pelvic pain, having a strong support network is incredibly important! Family, friends, and partners can be helpful in terms of offering both practical solutions and psychological support. If you are feeling socially isolated, talk to your doctor or psychologist about ways to increase your social network. This might include joining community organisations, and pelvic pain/endometriosis support groups in person or even online. 

What do you enjoy most about working in this area? 

I love working in a team environment and working with my colleagues to provide a holistic picture and management of chronic pelvic pain. It is an area of health that requires a lot of insight into the mind-body connection (which I find fascinating), and it’s an opportunity to make a real difference in people’s lives, by providing support, empathy, and understanding to those who might not have felt “seen” or properly understood in a health service before.   

Finally, what are your hopes and aspirations for developing service provision around endometriosis and chronic pain here at the RHW? 

I really hope we can get an awesome chronic pelvic pain/endometriosis program running at RHW. It would allow better access to evidence-based treatment, with shorter wait times, and hopefully improve many patients’ quality of life.

Kimia, can you describe the role of the Physiotherapist in the multidisciplinary team (MDT) in chronic pain and endometriosis-related care provision? 

Physiotherapy plays several roles within the multidisciplinary team when caring for patients with chronic pain. We play a crucial role in assessing and recommending management options for patients who attend the clinic. This assessment is completed both within one-on-one consults or, within a multidisciplinary session alongside a chronic pain consultant and psychologist. With clinical expertise in chronic pain and conditions such as endometriosis, we are able to identify the multifactorial components of the patient’s presentation and assist the wider medical team and the patient in developing a first and second-line management plan that is person-centred. We also review and manage patients who are suitable and interested in conservative management options. Pain education, pacing strategies, bladder and bowel care, external musculoskeletal assessment and exercise, and internal-based therapy are some of the many management options we provide.    

What is the most challenging aspect of your work? 

The most challenging aspect of the role is thinking about how we can continue to better our service provision and delivery. As the clinic sees a lot of out-of-area patients, it is always a challenge to provide ongoing specialised care to those based in rural or regional areas. It is exciting to have the development of our pain program underway as I believe this will add a great deal of value to the service and our management of patients. 

What do you enjoy most about working in this area? 

I have worked within the chronic pain clinic over the last 12 months and have absolutely loved it. The team are fantastic to work alongside and are always supportive and collaborative when it comes to patient care. I have most enjoyed coming into a new clinical area where alongside my colleagues I have been able to slowly change and optimise the way in which the physiotherapy component of the service is delivered. Seeing how this has been reflected in our patient care has been really rewarding. 

In your opinion, how important is a strong, reliable support network for patients who are suffering from a chronic illness such as endometriosis? 

Very much so. Part of why the clinic has had so much success is largely due to the cohesive nature all members of the team have been able to collaborate which in turn has been reflected in our patient care. We all play a crucial role for the patient from the moment they come in for their appointment.

What strategies do you use to help patients engage with physio treatment effectively?
 
A comprehensive assessment looking at understanding the patient’s beliefs, goals, and expectations is key to ensuring successful engagement. Understanding these components allows for a shared decision-making process to occur and as such a clear management plan can be created whereby the patient is able to know exactly what they can expect, what they are expected to complete at home, and what the ultimate end goal will be. Providing comprehensive pain education by drawing diagrams explaining the complex nature of their pain can be incredibly validating for patients after often being dismissed about their pain for so long.  

Understandably, some patients will feel fearful or anxious partaking in certain aspects of treatment. They may be afraid that their pain may worsen or may do harm by participating in certain therapy. How do you instill trust and help these patients feel supported and validated when they come into your care? 

Once again, I think trust in physiotherapy is built when a clear explanation of their pain is provided, and the patient's experience is validated. From there on, the reasoning behind our therapies is justified as the patient can firstly, see its role in allowing them to reach their goals but secondly, can understand that what is being asked of them is not causing any harm but rather challenging new ways of movement and lifestyle behaviours.

Finally, what improvements would you like to see in service provision for our endometriosis and chronic pain patients here at the RHW? 

I think the missing piece at the moment is a program-based therapy, so it is exciting that we have this underway with the involvement of all members of the team. Eventually shaping this program to cater for OOA patients, and CALD patients and offering high and low-intensity programs will be the ultimate goal.

Liz, can you describe the role you as Social Worker play in care provision of endometriosis and chronic pain patients who present to the RHW? 

My role as the social worker in this space is to advocate, support and assist any woman that requires social work services.  This can range from conducting a full psychosocial assessment (gathering the full picture for social work to assistance) to smaller tasks such as helping the patient navigate the isolated patient transport and accommodation scheme (IPTAAS), which can vary across the states.

What are some of the challenges you have faced working in this area? 

The challenge is the inability to generate a therapeutic relationship with the patient.  The best we can do is for social work to advocate for the patient to have a mental health plan through their GP.

Do you feel there is good support and access to resources relating to endometriosis and chronic pain for healthcare professionals at the RHW?

I tend to google the resources and make use of your knowledge, Eimear.

What do you enjoy most about working in this area of healthcare? 

It’s an interesting space.  I like it and want to know more about it in order to provide better outcomes for the patient, especially with networks and resources.

Unfortunately, numerous individuals with endometriosis and chronic pain recount previous interactions with healthcare professionals that have left them feeling disregarded or invalidated. How can you establish trust and offer effective support to these patients, especially when they still carry the impact of such experiences?

I have encountered some patients that have had poor experiences with this cohort.  They remember so well what they have experienced, names, dates and even down to what the person was wearing. I do my very best to try and help. 

This is real for the patients, I can only image how awful it is for them.  I only had a mind affect when I was younger. But still dismissed by cruel words such as “it’s all part of being a woman”.    

Finally, if you could improve one area of care provision for the chronic pain and endometriosis community here at the RHW, what it be? 

More social work hours, as this cohort needs time to be listened to and validated, provided resources, and services.  Maybe there should be ComPacks for them such as the hyperemesis cohort.