Planning and cancelling.

Not knowing when the pain was going to set in or how it would set in limited the women’s lives. The pain they experienced was often exhausting, and since it was unpredictable, it limited their social life and their ability to plan exercise routines. Several of the women said that exercise played a vital role in their social interactions. Therefore, when they were unable to engage in physical activity, they lost not only the benefits of activity themselves but also an important component of their social life.

The first years with the pain were extremely hard. I was exhausted. I couldn’t take short walks, nothing. So everything like that was affected. (4)

Unpredictable pain affected the women’s choice of activities. One woman described that when she planned to go to a concert, she had to know whether the chairs were comfortable to be able to manage. Some of the women described gratitude towards their friends who showed great understanding when they cancelled at short notice. Others related that they had no, or only a very limited circle of, friends because of repeated cancelling and their limited ability to plan activities.

I’ve often had to cancel things at the last minute or been unable to say yes to things because I’ve had pain or haven’t had the energy because I was tired. (6)

All the women described that it was not only the pain but also the tiredness and fatigue that affected their lives as well as what they could plan and what they were able to do. Women with a family or partner often experienced feelings of disappointment towards themselves at not being able to be the mother or partner they wished to be, on account of the chronic pain and fatigue. Pain and fatigue had a significant impact on their emotional wellbeing, leading to feelings of frustration and guilt, especially when they were unable to make plans or when they had to cancel an arrangement.

It can affect your relationships as well, as I mentioned, because you just can’t be bothered. You don’t have, like, the same strength and energy to give to other people around you, and not everyone is, like, understanding of what it means to live with pain, and especially endometriosis pain. (9)

The lack of ability to plan and the frequent need to cancel at the last minute affected the women’s lives at all levels, including their education and working life. During their time in school, many women had been absent due to pain. The women believed that if they had received their diagnosis earlier, it would have given them better opportunities in school, as a better understanding of their condition could have helped in providing a context for their absences and enabled more support.

If I had got the diagnosis earlier or…, but it’s more like my schooling would have been different if I had not had endometriosis. I’ve missed out on some of my schooling and at work as it is. (8)

Most of the women were employed and prioritized their work. They tried to live their lives as normally as possible. They found it challenging to take sick leave, as it was important for them to continue their professional commitments. Understanding from their manager and colleagues was crucially important.

… always a very, very guilty conscience when I call in sick or if I need to go home halfway through the day because I’m having pain … (6)

The women’s condition limited their opportunities for career development. Planning for career development was risky when understanding the working environment was so important for the women to manage their working life. Some women described that if they had not had endometriosis, they would probably have planned a new job, but since everything worked well with the work environment and manager, they felt it was safer to stay.

… there’s safety, I have permission to adapt my job as I need to, which is truly great. (4)

How to cope with pain.

The knowledge and education the women received from HCPs about how the body reacts to pain was valuable to them. Education and knowledge about the pain helped the women cope with their pain on a daily basis. By learning how their body responded to pain, they were able to identify triggers and warning signs and develop strategies to manage their symptoms. This knowledge gave them a sense of control and empowered them to take an active role in their own health care.

The most important thing for me was that we got to learn that coping with a daily life with pain is like coping with grief. Because so much of your life disappears … like, you can’t do what you’re accustomed to doing, when you have pain. (1)

When the pain was moderate, the women used coping strategies such as painting, meditation, breathing practice, or going on walks or to a movie. Nonmedical treatments such as transcutaneous electric nerve stimulation (TENS), heating pads, and acupuncture were helpful for some of the women. They described these methods as crucial to stopping the pain from accelerating at an early stage. One woman expressed that the very acceptance of the condition and its effects on her body was a form of coping, making her come to terms with a life with endometriosis.

Treated with disbelief.

Before being diagnosed with endometriosis, many women had an overall experience of disbelief and mistrust. Not being understood and acknowledged in their pain had affected their self-esteem.

‘No, but this is just mental … –it’s all in your head, there’s nothing wrong with you.’ (5)

The women felt that they could not live up to their own and others’ expectations and that they constantly disappointed everyone around them. The social environment frequently dismissed the severity of the pain, considering ‘a little pain’ to be ‘normal.’ As a result, many women came to believe that the pain and fatigue were a natural part of life.

I think in general that it’s going around with a feeling of constantly letting people down. That’s certainly the overall feeling. (7)

When the diagnosis of endometriosis was verified, most of the women had felt relief. They felt that the diagnosis proved them right. However, they also felt sadness. It became easier for them to understand their health condition; pieces of their life fell into place, and feeling vindicated strengthened their self-esteem.

Then, it was like things fell into place a little, that it’s not me who is imagining things, but rather that it’s not normal to feel like I have, or like I did. (8)

Pain management requires to be listened to.

The primary reason for seeking care at the GED was to get help with pain management. Several of the women described how they waited a long time before seeking care at the GED. They wanted to manage the pain by themselves and did not want to seek help immediately, in the hope that the pain might lessen at home. As the pain intensified, they finally reached a point where they felt they had no other alternative than to seek help at the GED.

No one thinks it’s fun to seek emergency help. It’s not something you do as a hobby, but you’ve tried all the aids you have at home before going in and … that it …, that you may not …, that they might not properly understand the strength it takes to venture out to get help and seek care. (8)

The pain management depended on the HCP treating them. When the women perceived disbelief from the HCP, they usually received inferior pain management and felt diminished. Mistrust from the HCPs was described as more common before they had received their diagnosis, but it could also occur after the diagnosis, especially from some doctors.

When the GED was overcrowded, the women noticed that the HCPs were busy and sometimes stressed and that it was difficult to be heard and receive adequate help. Under these circumstances, and when they were uncertain about when the doctor would be able to see them, pain, stress and anxiety emerged, even if the women tried to accept the long waiting time to obtain an assessment.

So then I find that it’s a bit annoying that it’s different …, depending on which nurse and which doctor you get, whether I get pain relief right away or whether I have to wait several hours for the doctor. I’ve been there for more than 16 hours sometimes. (4)

The women often described the care they received from nurses as positive, as they were met with respect, listened to, and acknowledged in their pain. When the doctors were busy, the nurses often tried to meet the patients’ needs and ease their pain.

I get to lie down, I get double heating pads, I get pain relief, like, whatever is needed depending on how bad my pain is … and they take me seriously, or at least it feels like they’re taking me seriously and they …, they understand in another way, it feels like. They show respect in a very, very vulnerable situation. (6)

It was important to be listened to and to have their story acknowledged by the HCPs. When an HCP acknowledged a woman’s needs, the woman felt less stressed and more secure. Trust and respect in communication were essential for the whole visit.

… actually listening to what the patient is saying. Now I’m not saying that we patients are always right … – … but we do often have truly, truly good …, or I can say in any case that I know my body very, very well, and when I say that ‘something isn’t as it should be’ I appreciate it if someone listens to me then. (4)

The need for predictable good quality of care.

The reason for waiting so long before seeking emergency help with pain management was also related to previous experiences at the GED. The care they received when seeking help was unpredictable. It could be good, if they were treated with care and respect; or it could be bad, when they were treated with ignorance and mistrust.

The women felt that seeking care at the GED was similar to playing the lottery, and a lot depended on which doctor they met.

Why is it different depending on which doctor is on call? Why does it differ so much? What is it that causes it to differ so much? (2)

The nurses and midwives were described as stable and secure, but they could also vary. The feeling of playing the lottery made the women hesitate to seek emergency care and was one of the reasons they stayed at home for longer than they should.

And then I’m always super tense about which doctor I’m going to get. I’m always truly worried about that. Because the process is sort of like a lottery. (10)

Seeing different doctors who were responsible for different medical issues, both at the hospital and in primary care, resulted in varying levels of care. The women expressed a need for better communication between health care institutions to improve their overall care experience and minimize the feeling of being at the mercy of chance.

Most women described that knowledge about endometriosis among HCPs and information about the condition generally had increased over the years; they stated that the national guidelines on endometriosis had contributed to increased knowledge.

I was truly happy when we got national guidelines on endometriosis. It meant that you didn’t need to encounter doctors in the GED who would say, ‘I don’t know anything about your disease, would you tell me about it?’ (1)

Limited knowledge about endometriosis among HCPs still existed and was one of the reasons why the women experienced playing the odds when seeking GED care. The women felt that more knowledge about endometriosis in general was needed, as well as implementation of care plans in accordance with the national guidelines; this might decrease the feeling of entering the lottery when seeking emergency care.

A wish for someone responsible and a plan to be followed.

Some of the women expressed a strong need to have someone take responsibility for their care, as they were seeing many different HCPs at many different health care institutions, which was exhausting. They felt that no one took the responsibility to develop a plan for them.

In the GED, I hear, ‘No, your doctor has to do that.’ Talking with the care center, they say, ‘No, we can’t do that.’ (1)

The women expressed a strong wish for a plan, both for themselves and for the HCPs. A well-developed plan would provide a structured approach to their long-term treatment, encompassing medical, therapeutic, and supportive care. Not only would this provide women with a sense of security and confidence, but it would also lead to better communication and coordination among the HCPs involved in their care.

Only one of the women had a plan, and she expressed that it had importantly changed the care she was receiving.

We have a care plan. It’s what has been the most decisive thing for me in terms of how I feel in my acute phases. (10)

The other women said that having a plan would help improve the care they received at the GED. Such a plan would include their special and nursing care needs based on their medical history and ongoing treatments. A plan would reduce anxiety in a stressful situation when seeking GED care.

Yeah, and it, it’s like… –it’s widely known that there are extreme variations in terms of how endometriosis patients are treated by the health care system. So there’s always some uncertainty as to whether or not you’ll get help when you go in. So a care plan would also end that uncertainty. (2)`