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 |