Endometriosis: lived experience insight report 2023

Key Themes

Symptoms

This section focusses on the types of symptoms mentioned and how they presented in the people we spoke with.

Endometriosis can present in a variety of ways which can often delay a diagnosis.

Throughout the conversations the symptoms reported were consistent with the description of endometriosis as a condition in which symptoms vary from person to person.

It was clear that endometriosis-associated pain did not always follow a specific pattern, resulting in "flare ups", which for many were outwith their period.

We know that suffering with chronic pain can be associated with poorer mental health.^[5] People with chronic pain are also more likely to report lower life satisfaction and poorer quality of life compared to those without chronic pain.^[6,7]

Lived experience

Endometriosis is typically associated with symptoms such as chronic pelvic pain, pain with sex, pain opening bowels or urinating and, sometimes, difficulty getting pregnant.

One of the symptoms not commonly spoken about is the fatigue associated with endometriosis. There are no current treatment pathways within the NICE guidelines on endometriosis to support management of fatigue.

Challenges with diagnosis and symptom dismissal

This section will focus on the information and types of diagnosis provided by healthcare professionals when the people we spoke with presented with symptoms of endometriosis.

The questions used to capture this information allowed us to explore with the participants what conditions are considered alongside endometriosis and how often those conditions are treated first before any investigations in to endometriosis.

"It felt like when the GP had their mind set on a diagnosis, like gastric issues, there was no way of convincing them otherwise. More openness to consider other things would have been a better alternative."

We found that many of the people we spoke to mentioned that a healthcare professional had suggested that heavy and/or painful periods were a normal part of life.

The same number of people were prescribed a form of contraceptive pill to treat and manage the symptoms, however, there wasn't a conversation or investigation into the cause of the symptoms.

We spoke with 16 people who mentioned they had bowel issues associated with their endometriosis and out of the 16 there were 9 people who were treated for Irritable Bowel Syndrome (IBS) before endometriosis was considered.

"I was told from a young age that I had IBS; I was told it was only IBS."

Case study – diagnosis

One participant was diagnosed with stage four endometriosis and a frozen pelvis after years of being treated for IBS. They said their main reason for speaking with us was because they want to make sure people have more knowledge of the symptoms of endometriosis, be more aware of their bodies and be able to ask for support and help when needed.

"From a teenager I had really, really heavy periods where I would bleed for 10 days. I was put on the contraceptive pill at 15 to reduce the bleeding. That was quite successful: I then would only bleed for 5 days but still quite heavy. They said it could be down to genetics and to ask my family if there was a history of heavy periods.

"In my early twenties I then had severe bloating just before my period came. The doctor blamed it on me being a vegetarian, told me I was anaemic, that I had low blood count and that I obviously had heavy periods and IBS. I was told that lack of fibre was causing me to have bowel problems.

"I took the word of the GP.

"I was then treated for IBS and given painkillers from a young age to take the week before my period and during my period. I just had to live with IBS from a very young age.

"In 2018 I went back to the doctor because my IBS had got worse. I had bad bloating all the time and getting bad heartburn.

"They checked me for Helicobacter virus but I was told it was probably what I was eating and to keep taking Movicol sachets that I had for IBS.

"At that point I was also getting really bad sickness, diarrhoea and lower back pain to the point I was taking a hot water bottle to work.

"I am a lecturer in a college and I would have to take time out of class to sit down and put the hot water bottle on me.

"I went back to the doctor and told them I couldn't go on like this, I have a full time job, I have a busy life and there is definitely something not right.

"The doctor then sent me for an ultrasound scan and they found two ovarian cysts and that I would need an operation to remove them. There was no mention of endometriosis it was just cysts at this point.

"I was taken into hospital quite quickly, within six months, and I had keyhole surgery. They found that I had a frozen pelvis and stage four endometriosis. I had no clue prior to this."

Understanding the wellbeing impact of accessing care

We wanted to focus on our participants' experiences interacting with the healthcare system, and the impact this had, throughout all stages of diagnosis and management.

Understanding how people felt at each stage provided us with an opportunity to identify patient needs throughout their journey and help support a patient-centred approach to care for endometriosis.

In speaking with people about their experiences of healthcare we heard many journeys, with both positive and negative impacts on how people felt they could interact with health care professionals.

Throughout conversations we heard some consistent ways of phrasing the negative emotions people felt when speaking with their healthcare practitioners. In particular, a significant proportion of the people spoke about feeling like they had been gaslit by a health care practitioner during a period of the diagnosis journey.

Realistic Medicine is for people using healthcare services and their families to feel empowered to discuss their treatment fully with healthcare professionals. Everyone should feel able to ask their healthcare professional why they have suggested a test, treatment or procedure, and all decisions about a person's care should be made jointly between the individual and their healthcare team

"I was told by my GP I had health anxiety and that it was all in my head."

We also heard a number of positive interactions with Healthcare Professionals, with several people mentioning that their GP provided support, listened and offered options for treatment or referral.

There were also examples of good practice from consultant gynaecologists in hospital settings in particular, providing clear information and next steps in their care pathway.

"First time in years that somebody actually listened to me."

Many of the examples participants classed as a good experience had a focus on Healthcare Professionals offering a clear treatment pathway, using active listening and making sure there was time to ask questions.

We found that when people experienced positive communication after having any negative experiences with Healthcare Professionals it allowed them to rebuild trust and feel more positively about their future and their treatment pathway.

"They were fantastic, I felt validated, like I wasn't just imagining things."

In particular, we heard some excellent feedback from participants around the clinicians working in the endometriosis specialist centres across Scotland. There was clear positivity around the role of the endometriosis nurse specialist and the support and reassurance this provided to those with complex endometriosis.

"One of the few that has actually treated me like a human being, in a long, long time."

Lifestyle impact of endometriosis

Endometriosis has a significant impact on physical health but it can also affect a person's lifestyle and wellbeing.

We learned from participants that endometriosis is often spoken about as an "invisible" illness which can lead to a lack of understanding from people around those with the condition.

We heard from participants that endometriosis impacted their life in a multitude of ways, with some having serious implications on their career path and opportunities and their social lives.

These areas impact on a person's overall quality of life which adds to the negative impact on mental health.

"I'm more isolated than I've ever been before."

Several people spoke to us about the impact endometriosis has had on their career. Some had to drop out of university due to the condition and some had missed out on career progression.

We also spoke with two people who due to endometriosis decided to change their career paths and have retrained to become Healthcare professionals within Obstetrics and Gynaecology as they felt they could make a difference and make sure people feel listened to.

"Maybe I should act like I'm ill so people believe me."

Many people spoke to us about how endometriosis made then feel like they were unable to go out and take part in activities or even do simple day-to-day tasks.

We also heard that some had to give up their hobbies due to pain and fatigue.

Case study – a journey to feeling heard

One participant highlighted the difficulties they had communicating with their GP and feeling unsupported with their symptoms. It was when they moved to a new GP that they felt heard and didn't feel dismissed with the problems they were raising. They said their main reason for speaking with us was to raise awareness of the condition and how it impacts on people's lives.

"I started my period at 11 which was very heavy and painful. Over the years I was on various different painkillers and when I was 15 I was put on the contraceptive pill as nothing else was helping.

"The pill reduced bleeding and pain but masked everything for 10 years. The severe pain was my most prominent symptom as well as nausea and vomiting. Every day of summer 2018 I was vomiting. This made me go back to GP and get tests done.

"I also decided to get a private allergen test which showed dairy intolerance and I stopped vomiting every day but it didn't stop the pain.

"In my teens, I didn't just have pelvic pain but leg pain but I was told by GPs that this was a normal part of being a woman.

"I was fatigued and thought I had depression as getting out of bed in the morning was difficult. I had Cognitive Behavioural Therapy as a result but I now believe it could have been a symptom of my endometriosis.

"After being dismissed I carried out my own research. I questioned the GP time and time again if it could be endometriosis but was told that it was unlikely and I was consistently dismissed. After the dairy diagnosis things did get better but I then had COVID which triggered everything again.

"At this point there was a new doctor at the surgery and I felt listened to and heard for first time. Thanks to him I was able to get on my path to diagnosis and I was referred to gynaecology."

Impact on behaviour from living with endometriosis

When we spoke to participants about their journey and the impact endometriosis has on their life we noted how it had completely changed their behaviours, views and life goals.

The endometriosis management and treatment journey had in some cases altered aspects of their personalities to allow people to ensure they were getting the best treatment for their condition.

"It's changed who I am as a person."

In particular we heard from some participants about the importance of learning how to self-advocate and be clear when they felt options were not appropriate.

In addition, some participants spoke about developing research skills and being able to present findings to Healthcare Professionals on what treatments they would like to use in managing their endometriosis.

We recognise that being well informed about your condition can help people to express and describe their symptoms more easily but it is important that information and support is also passed to patients at the appropriate time throughout any diagnosis or treatment process.

We heard how some participants had learned to self-manage their condition gaining insight and advice from members of support groups into potential self-management options.

"I don't have any trust in the medical profession. I do my own research; I don't trust you."

Support groups were a central part of how people shared experiences, tools and knowledge on endometriosis management. The groups importantly provided a safe and inclusive space which helped support emotional wellbeing when struggling with aspects of the condition.

We also heard from a small number of participants who worked within the NHS who have used their experiences to learn from them to provide better care for their own patients.

Financial impact and resources

Throughout our conversations we noted that participants were seeking other management options to better understand their condition and find different ways which would support their treatment pathways.

This included using management tools such as TENS machines, hot water bottles or following different diets to see if it impacted on symptoms.

When speaking about these resources we heard about the negative financial impact of seeking alternative options for management had and how alternatives were sought due to feeling dismissed by their HealthCare Professionals.

Speaking about the financial impact also led to conversations about seeking private healthcare they felt they didn't or wouldn't receive from NHS Scotland, ranging from mental health support to surgery. Overall a total of 9 out of 23 women mentioned that they had sought some form of private treatment.

"It's financially had a massive impact on us. Its eaten away at our savings, being off and not at work."

Another important resource and area where those with the condition go to seek advice and support is from the endometriosis support groups across Scotland.

The groups provide a signposting service to further resources and support and also provide a non-judgemental space to gain advice.

"Support group is fantastic … I don't think I could've done it without them."

There were also people throughout the conversations who had been able to see other specialists in areas such as urology, gastroenterology or pain management. This, however, was uncommon, which suggested that there were inconsistencies in treatment plans for those with the condition.

Where these referrals positively impacted on patients it provided insight into the success of how a more multi-disciplinary approach to endometriosis from the outset can be a more supportive treatment pathway.

Case studies – self-management and career impact

One of the participants spoke about how the condition impacts on how they manage their work life to allow for time to recover from days which may be more strenuous.

"It's only the last year that I have set boundaries for myself. I am going to paint a mural for someone so I know I have to work from home the following day to make up for that. I can plan around myself.

"I have a studio about 30 minutes' walk away. I used to walk it a lot but I can't do that anymore. I have managed to find a bus route to take me there even though I have taken a hit financially, it means I can get there. If I walked to the studio I would have less energy to do stuff when I'm there.

"I also do a lot of markets and I need to make sure the next day I am off. When I am doing a market I need to make sure they are accommodating, make sure they have chairs; a kettle nearby so I can do a hot water bottle for my joints. I have to pace myself.

"The good thing about markets is that you meet other chronic ill and disabled people who have tips to help me.

"This is the career I always wanted but I know for a lot of people it's not the case so I am very lucky."

Another participant spoke about how learning about and understanding their condition led them to a new career path.

"If it wasn't for my condition I probably wouldn't be on route to becoming an embryologist. I love the idea of being able to help people. I am a qualified chef to trade but I had to give it up because of the pain. I then went back to university to retrain as a nutritionist and I ended up transferring into human biology.

"It wasn't until my BSc that I wanted to really learn about endometriosis – I didn't get diagnosed until after my degree. It had been a buzzword in my records. In my BSc I decided I needed to learn about endometriosis and how to approach doctors about it and understand what they're trying to tell me. It was at the same time I found something I was really passionate about and I turned it into my career."