Title: ‘I don’t know what normal has been’: a Grounded Theory exploration of the journey to
endometriosis diagnosis
Version: 1 Date: 09 Apr 2025
Reviewer:  Allyson C. Bontempo
Reviewer's report:
Thank you for the opportunity to review this revised manuscript, entitled, “’I don’t know what
normal has been’: A Grounded Theory exploration of the journey to diagnosis.” This is an
important topic in the context of endometriosis that is suitable for this journal. This reviewer
believes this manuscript can be strengthened by incorporating the feedback from myself and the
other reviewers. Below I have organized my feedback my manuscript section. Thank you for
your work on this important topic.
General
1. Some of the in-text citations do not seem accurate (e.g., including the name of the journal as
the author, including the first name initial of the author, etc.). Can the authors please go through
these citations and check and edit, where relevant, for accuracy?
2. The authors fluctuate between using gender neutral language (individuals, people assigned
female at birth) and gendered language (women, girls). Can the authors remain consistent in
their use?
3. One relevant citation (either in the Introduction or Discussion) would be Markovic et al.
(2008), as they discuss the paths to diagnosis, including “circuit breakers,” for patients with
endometriosis. Please see:
Manderson, L., Warren, N., & Markovic, M. (2008). Circuit breaking: Pathways of treatment
seeking for women with endometriosis in Australia. Qualitative Health Research, 18, 522-534.
https://doi.org/10.1177/1049732308315432
Background
1. Line 76: Endometriosis has recently been considered a systemic disease, given the systemic
nature of the disease (among other factors). Please see:
Taylor, H. S., Kotlyar, A. M., Flores, V. A. (2021). Endometriosis is a chronic systemic disease:
Clinical challenges and novel innovations. Lancet, 391, 839-852.  https://doi.org/10.1016/
S0140-6736(21)00389-5
2. Line 80: Is “The Lancet” the name of the journal or the author(s)?
3. Line 99: Can the authors spell out NICE at its first use in the manuscript?
4. Line 100: Can the authors spell out APPG at its first use in the manuscript?
5. Lines 100-102: Personally, I would argue that there’s not a limited understanding of why
it takes so long to diagnose—there is a plethora of studies reporting on this. For a review.
please see: Davenport, S., Smith, D., & Green, D. J. (2023). Barriers to a timely diagnosis of
endometriosis: A qualitative systematic review.#Obstetrics and Gynecology, 10, 1097. https://
do.org/10.1097/AOG.0000000000005255
Methods
1. Lines 126-128: This history doesn’t seem integral to the manuscript.
2. Line 138: The authors reference two doctors. What kind of doctors? Were they medical
doctors? If so, from what specialty?
3. Lines 155-158: Good use of and explanation for snowball sampling.
4. Line 169: Can the authors provide a citation for the constant comparative analysis method?
5. Lines 189-203: Great description of the data analysis process!
Results
1. In one or two phases, the authors report patients engaged in dialogue with others regarding
the validity of their experiences. I’m wondering why these patients took it to heart what non-
medical professionals said about their symptoms, and that it carried enough weight to deter them
from seeking care from those actually qualified to make such assessments? The authors may not
have this in their data, but it is just something I wondered about.
2. Line 291: Can the authors specify belief in what? Themselves? Doctors? Their support
system? Etc. Right now, this feels a little open-ended.
3. Line 356: The authors write “nothing to compare their symptoms to…” Perhaps “no prior
normal menstrual experiences” to which to compare their symptoms... would be more specific.
4. Line 418: Can the authors specify feelings of shame in reference to what?
Discussion
1. If the length/word count of the manuscript permits, I think it is worth reflecting on the fact
that invalidation from healthcare providers can alter healthcare-related behavior. For example,
on line 602, the authors include an exemplar from Faye who says “I didn’t go back for years.”
I imagine this has an impact on diagnostic delay, as well.
2. It would also be beneficial to link the findings from “Self-perception: “I cried as I finally
started to believe in myself” to the literature that reports on positive interactions with clinicians
(which are generally those described when a patient is believed, as it is in this study). These
findings contribute to that literature as well.
3. Line 708: The year for Grundström et al. is 2016, not 2015.
4. Line 732: Bontempo (2024) is a female, not a male (“his conceptual study…”). The year is
also 2025.
5. Line 736: Small typo. The authors write: “This Our findings highlight…” Can the authors
please revise.
6. Lines 845-846: I’d just like to note that Caucasian is a race, not ethnicity.
7. Lines 845-846: Also, a new publication may be worth mentioning in which black patients’
experiences have been explored:
Mandeville, J., Pollack, A. Z., Kornegay, L., & Gupta, J. (2025). Stigma and discrimination
experienced by Black women with endometriosis in the Washington, DC, Metropolitan area: A
pilot of the ENDO#served study. International Journal of Gynecology & Obstetrics.
8. Line 867: age at first consultation, patients may not yet be adults, so perhaps “women or girls”
rather than just “women.”
Table 1
1. “Ethnicity” should be replaced with “race.” Ethnicity refers to those of Hispanic/Latino/a/
Spanish origin.
2. I’m curious why sex was collected but not gender?
Figure 2
1. Great representation of patients’ experiences! Especially demonstrating that it’s not always
a linear process.