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All participants identified as women (n=16), with a majority of participants ranging between the ages of 36–45 (n = 8). Participant geographic location varied across regions of the United States: Northeast (n = 3), West (n = 3), Midwest (n = 3), and South (n = 7). Additionally, participants identified different forms of endometriosis diagnosis: clinical diagnosis by a medical professional (n = 11), laparoscopy (n = 6), ultrasound (n = 4), MRI (n = 2), and other (n = 2). Table 1 provides further description of the participant demographics. Five main themes were identified from the interview data: (1) the physical symptoms of endometriosis, (2) psychosocial impacts of endometriosis, (3) approaches to navigating healthcare experiences, (4) self-advocacy and resiliency by any means necessary, and (5) lessons learned and a call to action. In the following descriptions of each theme, the interviewees were given pseudonyms to ensure confidentiality.

Physical symptoms

Physical symptoms of endometriosis varied widely across the sample, including: vomiting, pelvic pain, headaches, pain during sex, heavy bleeding, constipation, rectal pain, and blood clots. Many participants detailed early experiences as teenagers with indeterminate symptoms that were later identified as related to endometriosis.

“I just thought I had really bad periods. Now that—well, now that I know that that was a huge sign. I just had horrific periods since the time that I was 12, which is when I got my first menstrual.”– Casey26–35 years old.

These physical symptoms were often intense, a result of chronic and debilitating pain, in areas of the body particularly in the uterus, but radiating to other areas, such as knees, limbs and stomach. They were often accompanied by additional symptoms (e.g. nausea, lightheadedness). Participants described the intensity of the pain as in the following example:

“I was vomiting, like, had headaches, chills. I mean, it was like I had this—like, I was literally—it sometimes felt like my stomach was just going to burst open. And it’s like it was the most, like, painful bloating I’ve ever experienced. I started having this, like, intense, like, pressure where I felt like my stomach was gonna explode, and it was, like, so painful I could barely talk sometimes. I couldn’t, like, stand up straight.” – Andy, 26–35 years old.

These physical manifestations of endometriosis corresponded with psychosocial implications, as described in the following section.

Psychosocial impacts

Feelings after diagnosis

Across the sample, participants described juxtaposing feelings following diagnosis by a healthcare professional. On one end, participants described feeling concerned about their health, defeated and angry regarding the length of time that it took to arrive at a diagnosis and the serious health circumstances or events (e.g., “loss” of fallopian tubes, removal of ovaries, etc.) that they saw as potentially preventable with earlier diagnosis.

“You know, like, I could’ve gotten the proper intervention early on, who would have known what to do. I would’ve known what the problem was my whole life. And so then I wouldn’t have had all this agony of, like, trying to have a baby and, like, the misery that comes with infertility and, like, and not knowing what’s wrong, and, like, why it’s not working. Um, like, I could’ve saved years of pain and all the weeks of my life—all the time that I’ve lost, all the things that I couldn’t do because I was in pain could’ve been avoided.” – Andy, 26–35 years old.

On the other hand, participants also expressed relief and validation after their diagnosis, which marked a turning point in often long and confusing paths to diagnosis in which some women experienced limited releif or peace of mind related to their symptoms

“I was happy that they had something called, um, endometriosis because I was just in a lot of pain and I just, I heard about it before, and I knew it wasn’t real bad. I thought it maybe had been cancer or something like that. And I was just happy that it wasn’t cancer basically and that I was gonna live, and I wasn’t gonna die, and it was something that was treatable – Didi, 36–45 years old.

Social Life and intimate relationships

Psychosocial well-being encompasses mental, social, emotional, and spiritual dimensions of what it means to be healthy. Participants mentioned a range of impacts of endometriosis such as impact on their social life, mental/emotional health, intimate relationships, and their perceptions of themselves.

Participants descriptions of the impact of endometriosis on social life often detailed adjustments to day-to-day life routines, canceled plans and interruption of important events during times of intense physical symptoms. These impediments were met with lack of understanding by social networks in cases, affecting social relationships. The term “silent killer” was used by one participant to describe how endometriosis symptoms are not obviously seen on the outside of the body, by others, affecting social dynamics. When women chose to socially interact despite their challenging physical condition, mental and physical preparation was required to interact with others. Alternatively, women chose to isolate during their worst “flares” at times, as described here:

“I like to be a pretty active person. Like, I like to be social and interact with people and also be out in nature. And so, I felt as if, like, once those flares happened, I feel as if, like—I feel like a decent amount of my day is kinda taken away, or at least-or at least, like, I’ll be having a fun time, then it’ll be like, ‘Surprise, endometriosis.’ – Angie, 18–25 years old.

Additionally, many participants described their experiences with intrusion of endometriosis symptoms upon their intimate relationships. Women in the study shared that painful sex commonly impacted the degree of intimacy within their marriages, other committed relationships and casual sexual relationships. One interviewee shared:

“I’m thankful that he’s [my husband is] patient, but there were times when it could be pretty painful [intercourse] intimately. And so, um, not being able to have those experiences, uh, sometimes I may have wanted to… [but] it kinda can put a damper on your relationship.”– Mandy, 36–45 years old.

Emotional and mental well-being

Participants relatedly described experiences with anxiety, depression, fear and hopelessness connected to their journeys with endometriosis. One participant goes into detail about the impact of her physical symptoms of extensive heavy bleeding on their emotional health.

“So, it was like I’d have to make what I call super pads just to get through a period, then run to the bathroom, hoping I had enough time. It was-it was just that-that made me really kinda depressed, and I’d wanna stay home from school ’cause it’s like, what’s the point of, like, hoping I make it to the bathroom. And, and then at nighttime, I’d make like those super pads, where it’d be like eight pads put together.” – Toya, 26–35 years old.

Another participant described their frustrations with having to plan their life around their period, even describing feelings such as depression and feeling left out by others who did not have to deal with the same burden of preparation or forego plans.

“[I feel] frustrated and sometimes even depressed because I’ll sit there and be like why is it happening to me or, like, why is it that I’m the one that has the-the horrible periods and, like, everybody, they’re like they’re fine. They’re going to the beach. They’re doing whatever. And, like, for me, it’s like when is-when is my period coming? Oh no, I’m not gonna be available that day. Like, you’ll find me—I’m on the couch or in my bed with a heating pad for the whole day.” – Ike, 26–35 years old.

Participants also remarked about feelings of loneliness related to weathering difficult symptoms in isolation and resulting from patterns of cancelation of or non-participation in social plans during periods of intense physical symptoms. Interviewees felt hurt when that experience was met with lack of understanding by members of their social circles, as reflected in the quote below.

“It hurts you psychologically because you’re in constant pain, and nobody understands it. Um, you know, they’ll ju—“Oh, you just got cramps.” No, these aren’t cramps. These are somethin’ else, you know.”- Aliya, 36–45 years old.

Perceptions of self and womanhood in the lifecourse

Further, participants discussed the impacts of endometriosis on their self-perception. Common topics of discussion included whether and how endometriosis symptoms and diagnosis altered women’s sense of their overall health, their health relative to others, and their body image. We heard shared feelings of frustration and even loss related to how women feel endometriosis has changed what used to be.

“I used to think I was invincible. And, like I said, I was in, like, phenomenal health, and, um, I was invincible. And now I’m like I get a little bit scared of my body sometimes because, you know, while I think it’s still great, I feel like it could fail me, and I never know what’s gonna happen next. And so that kind of bugs me, um, because, like, you wanna check that box of excellent health. And I don’t. I’m like, oh, it’s in good health” – Rica, 36–45 years old.

Some participants mentioned how endometriosis has impacted their sense of womanhood, with respect to the degree to which their expectations around menstrual cycles, sexual activity, and fertility in particular met reality.

“[Endometriosis] just it makes you kinda resent your body….Um, uh, it makes you—like I said, it makes you question yourself as a woman.” – Talia, 26–35 years old.

Interactions with the healthcare system and healthcare providers also informed women’s expectations and interpretations of their reproductive experiences.

Healthcare experiences

Discussions of experiences with healthcare providers who diagnosed and contributed to management of endometriosis, many participants discussed missed opportunities for recognition of and care responsive to their early-stage symptoms by multiple parties. Healthcare professionals were among members of participants’ close networks mentioned in participant reports their symptoms were minimized as “something women just go through”. Other reports by participants included experiences with presenting for care multiple times with persistent symptoms, without a subsequent resolution, not being given diagnostic tests and being told that their needs didn’t rise to a level of concern for action. One participant was told to return when they were ready for conception, and if they “have a problem conceiving, come back and then we’ll worry”.

Participants described disappointment in the time it took to reach a diagnosis. Even following diagnosis, participants described continued experiences with being dismissed, misunderstood, and dissatisfied with the quality of care that they received while trying to manage their condition, as reflected in the below experience:

“But I saw a male doctor, and he was just, like, um, you know, “You’re only experiencing, like, this pain during your period.” “If you’re fine elsewhere we don’t have to do anything about it.” And I was like, that doesn’t seem right to me ’cause if my endometriosis is so bad, like, I don’t wanna wait until I’m doubled-over in pain in an emergency situation” – Dina, 36–45 years old.

When participants did receive relief for symptoms, birth control was a commonly discussed form of treatment described across the interviews. Some participants successfully pursued birth control as a form of treatment for their symptoms. However, many participants shared the perception that birth control only masked their pain, referring to it as an “easy fix”, with a few participants desiring that a doctors look more deeply into additional forms of treatment. As one interviewee described:

“And they’re so quick to throw the birth control pill at you and say here you go. Oh, it’s just here you go. Here’s the birth control pill. And I’m like, well, this isn’t working”. – Rica, 35–45 years old.

Another participant with a similar experience felt frustrated with medical provider inattention to her unique experiences with endometriosis management in assumptions that birth control would work for her just because it had worked for someone else.

Some participants shared experiences with more egregious insensitivity and stigma around their endometriosis experienced within the health care system and enacted by health care providers. In one such example, a participant shared:

“And so, he’s going through all the symptoms that I have. And he’s like, ‘Wow okay, so you have pain,’ um, ‘you have all this pain, blah, blah, blah.’ And he says to me, ‘Oh, you’re married,’ you know, all these regular questions. And he’s like, you know, he was like, ‘Wow, you’re really damaged. Your husband needs to put you back on the shelf.’ And he had a intern in there and she was like—yeah, I-I think an intern. She was, like, learning, you know. And she was like—she mouthed to me when he turned around, she said, ‘I’m so sorry.‘” – Casey, 26–35 years old.

Participants connected these negative experiences, from early dismissal of symptoms to bedside manner, to health outcomes – from delays in care, distrust in the health care system, and skepticism around the ability of the health care system to meet their needs.

In contrast, participant discussions shone a light on positive interactions with medical professionals as well. Participants shared experiences with having questions answered, feeling cared for, and seeing their doctors go the extra mile for them.

“Uh, I felt listened to. I felt heard. Um, there-there were a few appointments that I can remember still feeling like okay, well, … there wasn’t always an immediate solution, you know. But at least I knew that okay, well maybe there’ll be some resolution. Maybe, you know, something will be done. I’ll find out something… But feeling like there was a path…” – Mandy, 36–45 years old.

Resiliency and self -advocacy

Self-perceived resilience

Participants were asked about their perceptions of self-resilience in the process of living with and managing endometriosis. Participants shared varied journeys, spanning difficulties of resilience to the necessity of it, as reflected in the following participant quote:

“And so now I’m kind of trying to keep the mindset that-that’s what I need to do, um, but it’s hard, right, ’cause there are days where I just wanna just give up and not pursue anything. But I-but I keep thinking, like, I can’t do that because I don’t wanna be put in a situation where one day it gets really bad, and I’m, you know, I can’t work or whatever.” – Dina, 36–45 years old.

In these discussions, participants provided detail about what aspects of their journey with endometriosis they see as embodying resilience. Key sentiments include that, “[endometriosis] has made me stronger”, “I didn’t stop fighting”, and being motivated by loved ones to fight for themselves. Along these lines, one woman shared:

“I feel like-I feel like I’m resilient because I didn’t give up”. – Nia, 26–35 years old.

Experiences and perceptions on self-advocacy

Participants were asked to describe their experiences with self-advocacy in the management of their endometriosis. The women in this study had a range of experiences with self-advocacy via self-driven actions taken for their health. Included among these were staying organized (e.g., by keeping a digital file folder with notes and documentation of doctor and even insurance company interactions), speaking up for themselves, finding the right doctor and doing personal research. Examples of the latter are shared by a participant below:

“So, I use that system for everything. For my job, if I feel like my job doesn’t value me, then I look for somethin’ elsewhere. If I feel like, um, y-y-you know, m-my doctor doesn’t care about my needs or i-is-or is not-is not listening to my needs, then I have to go some elsewhere. So, um, always be your biggest advocate, um, and once you do that, you will find your right fit. And your right fit will work for you. They will be for you. Um, so, and if you have those three things, you will be successful, and you will find the right treatment plan for you. You will find, um, the right answers for whatever that is that you’re trying to do. Um, but you have to do your work for yourself as well”. – Talia, 26–35 years old.

Self-advocacy was collectively perceived as a double-edged sword amongst participants, with some women describing positive sentiments towards self-advocacy such as feeling empowered and having agency over their body. As one participant shared, “It make me feel, like, good, like, I’m doin’ somethin’ right – for myself” – Kia, 26–35 years old. Other participants extended this notion and specifically spoke to how advocating for themselves may be better for the long run. On the other end, some participants described negative thoughts attached to having to advocate for themselves, such as tiredness with having to explain themselves and detail their – sometimes decades long – history multiple times over a series of doctor visits. Some participants additionally shared frustration around the complexity of self-advocacy around managing a chronic condition, as illustrated by the following:

“I would say frustrated because, like you know, it’s like you always keep getting into these hurdles. Like just when you think that you fixed something, it’s like something else comes up in the mix. Um, but at the same time, it’s also… like, alright, I gotta get it done. Nobody else is gonna do it for me. And, you know, just go out and do it, basically, you know?” – Ike, 26–35 years old.

Lessons learned and call to action

Lessons learned about themselves

When asked about lessons that participants learned about themselves in the management of endometriosis, many participants reiterated recognition of their own resiliency as a lesson learned. Although living with endometriosis affected women’s quality of life, they learned how to navigate the challenges presented by endometriosis. Similarly, despite the impact that endometriosis had on many participants’ body image, it also gave some women an appreciation for the strength of their body. Accordingly, one participant describes:

“And I feel like being a woman who has endometriosis is kinda like my body is still a marvel. Like I’ve learned to still be amazed at all that my body does, even with the issues and the problems. Like, I can still probably have children. Like, I have learned to kind of respect my body more, even though it’s doin’ this thing to me every month, I’m still very amazed, like, at what a woman’s body can do. Like, a lot of respect for my body has been earned”. – Toya, 26–35 years old.

Socially, given the aforementioned “silent” nature of the endometriosis experience, living with the condition taught some women not to judge other people by what is visible alone. Finally, endometriosis contributed to growth in communication for some participants, as one interviewee described their experience of having to communicate these issues with their romantic partner over time.

“It’s been, like, a year since my diagnosis, I’m a lot more communicative with my partner, and he’s very understanding of what’s going on and is very respectful… I think that that’s helped a little bit with [my] self-perception, but when I first started out, there was that insecurity” – Angie, 18 to 25.

Call to action

To close the interview, participants were asked to describe what advice they would give to those who do not know much about endometriosis; this included healthcare professionals and Black women in a similar health journey. Advice to healthcare professionals focused on the importance of believing in and listening to patients, understanding of patients’ pain, and pursuing treatment for patients that is holistic and culturally sensitive. Along those lines, one participant expressed:

“Don’t-don’t say it’s-it’s-it’s in their head. Um, you know, just listen because what-what-what harm is it gonna do to listen and look into it? Even if it’s only, um-even if it’s one doctor’s appointment, that could make a difference. You know, listen and-and-and don’t disregard a person ever.” – Mandy, 36–45 years old.

One participant suggested that collaboration between the endometriosis community and healthcare professionals could be fruitful for improvement upon the healthcare quality and treatment success:

“So, what they need is someone from the endo community to get in contact with the people doing the conferences so they can have a little conference, you know, presentation or seminar at these medical things, so that the OBGYNs and even the hematologist and the PCPs are more aware of endo. Because it’s not—I’ve talked to a lot of doctors, you know, in other specialties”. – Jo, 36–45 years old.

To fellow Black women living with endometriosis, participant advice included: advocating for yourself, listening to your body, self-education, and finding the right doctor. The below participant excerpt well illustrates the latter:

“do your own research. Um, and then, not only that, to do, you know—uh, find your fit with your doctor. Um, the first doctor, you know, you meet, you don’t always have to go to —you have to shop around for them too —you are hiring them as well. You know what I’m sayin’? So, never forget that. You never have to just settle with a doctor either, um, because that’s a relationship that you buildin’ as well. So, …I treat everything, every big thing in my life like a relationship, including jobs, doctors, um, anything. Um, if you don’t treat me right, if you don’t listen to me, if I feel like you don’t have my best interests, if you don’t value me, we can’t work.” – Talia, 26–35 years old.

Meningitis is an acute inflammatory disorder of the leptomeninges caused by invasion of various pathogenic microorganisms. As one of the most common neurological emergencies, this condition is associated with significant morbidity and mortality rates [8]. Clinically, the disease typically presents with fever, neck stiffness, and headache, often accompanied by nausea, vomiting, altered mental status, seizures, or even coma.

A. fumigatus, a ubiquitous saprophytic fungus, thrives in natural environments including soil, compost, and decaying vegetation. This opportunistic pathogen disseminates through airborne conidia, representing a significant fungal threat in clinical settings [9]. A. fumigatus infection typically initiates in the pulmonary system or paranasal sinuses following spore inhalation, with subsequent hematogenous dissemination or direct local invasion to adjacent anatomical structures [10]. Central nervous system infections caused by A. fumigatus carry a grave prognosis, demonstrating both high mortality rates and frequent treatment resistance. These infections most commonly manifest as cerebral abscesses, which represent the predominant clinical presentation [11, 12]. Neuroimaging findings (CT or MRI) typically demonstrate leptomeningeal thickening and enhancement, particularly at the skull base. Due to the fungus’s angioinvasive nature, associated vascular complications may include cerebral infarcts, hemorrhagic lesions, or abscesses following vascular distributions. Secondary manifestations such as hydrocephalus or local structural involvement may also be present in advanced cases [13].

Galactomannan, a key polysaccharide component of the Aspergillus cell wall, serves as the earliest detectable biomarker in circulation during Aspergillus infection. Serum galactomannan levels demonstrate a strong correlation with fungal burden, offering valuable quantitative insights into infection progression and severity [14]. 1-3-β-D-glucan, another essential and fungus-specific polysaccharide, constitutes a fundamental structural component of fungal cell walls. Together with galactomannan, these biomarkers provide valuable adjunctive diagnostic information for invasive fungal infections. However, while highly sensitive for fungal detection, neither biomarker offers species-level identification.

Accurate species-level identification of fungal pathogens is critical for precise diagnosis and targeted therapy in clinical practice. However, initial diagnostic approaches frequently rely on genus-level classification due to practical constraints. High-throughput gene sequencing overcomes this limitation by providing rapid, species-specific microbial identification directly from clinical specimens. While this technology’s enhanced sensitivity enables comprehensive pathogen detection, it may simultaneously identify multiple microorganisms in infected samples. Consequently, clinicians must exercise careful judgment when interpreting these results, as the detection of co-occurring pathogens may present diagnostic challenges.

A. fumigatus infection predominantly occurs in patients with compromised immune function [2]. The main feature of brain CT or MRI examination in A. fumigatus encephalopathy is mass shadows, which may also be accompanied by clinical features of meningitis. However, it is very rare for A. fumigatus to only cause meningitis. This case was ultimately diagnosed through high-throughput gene sequencing of pathogenic microorganisms. Subsequent brain MRI examinations have shown no imaging features of aspergillus in the brain parenchyma. The patient in this case has a medical history of multiple chronic diseases and thyroid malignant tumors, which are risk factors for A. fumigatus infection [15]. The patient experienced nasal congestion, runny nose, and nosebleeds two weeks before admission, suggesting the possibility of A. fumigatus infection. Although no obvious signs of A. fumigatus infection in the sinus were found on imaging, combined with medical history, it is considered that there is a high possibility of invasion of the brain through the sinus. After treatment with Voriconazole against A. fumigatus, the patient’s death remained unchanged. This case shows that A. fumigatus can cause meningitis without imaging features, and the patient’s condition is very critical. Aspergillus meningitis represents a rare but life-threatening infection characterized by substantial diagnostic difficulties and alarmingly high mortality rates. To minimize diagnostic errors, stringent clinical vigilance and comprehensive surveillance are essential. The PMseq-DR platform, with its capacity for cerebrospinal fluid-based high-throughput genomic analysis, emerges as a valuable tool for achieving timely and accurate diagnosis.