Table 2.

Results from the open-ended question “What do you miss or have you missed the most with regards to follow-up or treatment as a patient with endometriosis / adenomyosis?”. All codes/terms presented were used by 10 or more participants. Multiple codes/terms could be given per participant

Categories	n	Codes/terms	Representative quotes
Respect for patients’ values, preferences and needs		To be taken seriously, believed in, listened to, to be met with understanding, respected	To be believed in and understood. Respected. For many years I was told that this was in my head, not in my stomach. To be taken seriously. Don’t have track on how many GPs and gynecologists that have sent me home with "No, you must live with this" over the last fifteen years
In general	186
To be taken seriously	72
To be believed in	52
To be met with understanding, listened to, respected	96
An earlier diagnosis	51	Diagnosis	The time it takes to get a diagnosis is so extremely long. It took far too long to get a diagnosis. Several years. To avoid being a throwing ball for 17 years before anyone could tell me what this was.
Competence level among health care professionals and in society	153	Competence, knowledge, expertise, society	More similar knowledge among doctors around the country. Knowledge among health professionals. You do not have the strength to be your own advocate when it is at its worst. More knowledge in society so that you do not have to suffer in silence and shame
Information		Information, information on the expected course and prognosis	I have received very little information about the way forward. Only received the diagnosis during fertility assessment. Information about treatment and future opportunities. Relatives should be more involved / get information
In general	112
Information about the next step and prognosis	27
Information for relatives	4
Access to health care services	42	Access, contact point, helpdesk	The waiting time is too long and there is too little time during consultations. It has also been difficult to get hold of a doctor to ask questions. A lower threshold for referral to those who are experts so that you can get proper help
Multidisciplinary care		Multidisciplinary care, holistic, psychologist, physiotherapist, nutritionist, sexologist	Really miss follow-up by a multidisciplinary team, both in terms of pain relief, conversations and advice on what you can do yourself to try and get some quality of life. A holistic plan for treatment and follow-up. Especially with regards to nutrition, physiotherapy, psychotherapy and medical treatment. Follow-up, advice and guidance on what to do. With a focus on coping with everyday life with pain, problems in the relationship, especially due to pain during intercourse, conversations with a partner about being in a relationship with someone with chronic pain
In general	89
Psychologist	31
Physiotherapist	28
Nutritionist	22
Sexologist	27
Follow up		Follow up, follow-up after surgery, continuity, see the same doctor	Follow-up after treatment and surgery. Same doctor who does the follow up. Continuity and a feeling of knowing that you can contact competent professionals when needed. An individual plan and a permanent contact person would have been optimal
In general	271
After surgery	87
To see the same doctor	8
Continuity among health care professionals	45
Other	18
Not relevant/not answered the question	26
Total	1376