Endometriosis is a chronically painful, invasive, inflammatory disease, with limited treatment options and long delays to diagnosis, which impacts 10% of females in New Zealand.As part of a larger group discussion study, this paper covers three themes associated with endometriosis patient experiences: intensity of pain, diagnostic tool shortcomings and perspectives of treatment options.The goal of this research was the inclusion of patient voices to guide research priorities. In early 2022, 50 New Zealand endometriosis patients participated in anonymous, asynchronous, text-based group discussions on the VisionsLive platform. The patients ranged in age from 18–48. The patients answered 50 questions, 23 text-based and 27 quantitative, and then took part in online group discussions.The average age of symptom onset was 15.3 years, while the average delay from symptom onset to a working or surgically confirmed diagnosis was 7.91 years. The top five reported symptoms within the cohort were pain-based, and the participants discussed the many impacts of this pain on their work and education. The four main diagnostic tools employed on this cohort were abdominal ultrasound (72%), transvaginal ultrasound (68%), laparoscopy (82%) and sharing their symptom history with a medical practitioner (88%). The most common emotions patients experienced following receiving a diagnosis of endometriosis were relief (86%), feeling overwhelmed (54%), and anger (32%). The main treatments offered to this cohort were pain relief (96%), laparoscopic surgery (84%) and the combined oral contraceptive pill (80%). Of these three treatments, only laparoscopic surgery was viewed positively by the majority of users, with 67% considering laparoscopy an effective treatment, compared to 46% of users for pain relief, and 25% of users for the combined oral contraceptive pill.Gathering the voice of patients revealed that long delays to diagnosis and dismissal by medical practitioners frequently manifests as a reaction of relief by patients once diagnosed. Results also showed treatment options such as pain relief and hormonal medications were often considered ineffective, but were routinely offered as the first, or only, options for patients. It is therefore important that both quicker routes to diagnosis and more effective treatment options be developed. Endometriosis is a disease characterized by the presence of endometrial glands and stroma outside of the uterus , 2. EndoThe experience of pain for endometriosis patients is multifaceted and harms all aspects of quality of life . One keyvia surgery and histological examination of excised tissue  the intensity of endometriosis pain, 2) experiences of diagnostic tool shortcomings, 3) patient perspectives of treatment efficacies, 4) the effect of patient's lack of knowledge on their experience, 5) the influence of doubt on diagnostic delay, 6) the impact of socioeconomic position on patient capacity to access care, 7) the necessity for more subsidized care, 8) the need for greater research funding and 9) patient desire for improved education and readily available information about endometriosis. This paper represents the quantitative and qualitative findings associated with the first three themes.The present study is part of a larger investigation into the application of biomedical engineering principles for understanding how the human biological system enables endometriotic lesions to become established and grow. Since both diagnostic and treatment options are limited, as are the time and resources to research alternatives, the authors wanted to better comprehend the experiences, perspectives and research priorities of endometriosis patients within New Zealand. It is the patients who face the delays and the hardships, so it should be their voices that inform the most significant needs that must be addressed in their care. The authors hypothesized that collecting this information and knowing more about the stories of endometriosis patients would enhance their future research by making it patient-centered. The collection of this data is also in alignment with the 2017 research goals by the Global Consortium of Endometriosis Investigators for patient perspectives: “patient views on the most pressing topics in endometriosis research and clinical priorities should be sought and subcategorized into different demographic groups, including age, symptoms, ethnicity, and economic background”  with endometriosis to share their experiences. Each individual was given a pseudonym, and the anonymity allowed the participants to unreservedly share their perspectives without fear of judgement or the risk of embarrassment.While the discussion was open, participants logged on to the VisionsLive platform as many times as they wanted and whenever suited them. The participants were aged between 18 and 48 years and were a mixture of full and part-time workers, students, stay-at-home mothers and individuals who were not working, and the participants were a mixture of nulliparous women (who have not had children) and primiparous (who have had one child) or multiparous women (who have had one or more pregnancies). The data collected showed that the patients had experienced a broad range of symptoms and treatments.The online environment was a requirement for conducting this qualitative and quantitative research as the period it was conducted (February to March 2022) was amid the New Zealand Omicron COVID-19 surge. In-person focus groups or discussions during this period could have been hazardous. The COVID-19 pandemic has increased the need for virtual qualitative research and platforms . The onlThe first step of the data analysis method undertaken was to split the quantitative and qualitative answers into two different documents. The quantitative answers from all transcripts were combined into a single spreadsheet. Similarly, the qualitative written answers from all sources were combined into a 306-page transcript. The qualitative data was analyzed through an iterative thematic approach. The transcript was coded during analysis in an inductive manner, where codes and themes were produced based on reading the patient responses, rather than being pre-conceived. The coded quotes were combined into a single spreadsheet. Quotes were re-organized into preliminary theme concepts to create an outline for the report of results. These preliminary themes were revised in an iterative manner as themes were redefined and quotes were re-organized into the final concepts of this article.This research was approved by the University of Canterbury Human Research Ethics Committee (Ref: HREC 2022/03).Fifty endometriosis patients participated in this research study, completing set questions, and participating in further moderated discussion. The participants were classified as having confirmed endometriosis diagnoses, or “working diagnoses” . Having The participants in the study reported a variety of symptoms associated with their experience of endometriosis . CommonlAmong the cohort, the average age of symptom onset was 15.3 years with a standard deviation of 4.2 years and a range of 9 to 30 years of age. The average delay for the overall cohort from symptom onset to diagnosis was 7.9 years, with a standard deviation of 5.1 years, a minimum of 1 year, and a maximum of 28 years. For participants with a confirmed diagnosis, the average delay to diagnosis was 8.6 years, with a standard deviation of 5.3 years . The avePain is subjective, and endometriosis patients do not have a method to prove that their pain is real. In an assessment of patient experiences of pain, Ahluwalia et al. identified that since painful experiences cannot be standardized, healthcare providers can perceive patients to be overreporting their pain . There w“I distinctly remember telling [my mum] that my pain was 9/10 and was only not 10/10 because I knew I was not literally dying.” “Pain was no longer just during my period, it was constant. I started struggling with pain during sex, recurring UTIs, bladder spasms, fatigue, headaches, nausea, and vomiting. Seeing as I had been dismissed by GPs in my younger years, I never mentioned it to my current GP.” “My concerns were not taken seriously until I ended up in hospital, here they found that I had an ovarian cyst rupture, when they asked why I had not come in earlier I explained that my periods were always this painful I had no idea something was actually wrong.” Endometriosis is a condition where the prevalence, effects and costs are substantial . Endomet“I was in so much pain I had to leave the meeting halfway through. I did not want to fully explain what happened to everyone, and there was a real lack of empathy.” “When I spoke to him about getting COVID while being pregnant and hoping it will be minimal [my employer] said, ‘you'll probably get it bad, you are the sickest person I know.’ But [endometriosis] is not sickness, it is the pain and barely being able to cope, let alone work regularly.” “I remember one conversation with my boss when I was asking for some time off or reduced hours and he said: ‘I did not know that this would still be an issue for you’. This was after I had already spoken to him many times about it being chronic.” “I do not want other women to have to go through what I went through. It very nearly ruined my relationships, and I did end up leaving my career because of it.” Scientific Reports, 23.9% of endometriosis patients had given up on their studies because of their condition, 11.0% had changed their course of study, 53.1% had delayed their exams or assignments and 66.7% reported time lost from their education as a result of their pelvic pain .” “I had symptoms from the moment my period first started at 11 years old, I bled through my school uniform on multiple occasions, missed a whole lot of school each month, was told I was being dramatic.” There are four key diagnostic tools  employedThere are no biomarkers in blood with sufficient efficacy to diagnose all forms of endometriosis . The onlUltrasound scanning works by emitting sound waves and then recording the waves that echo back. Abdominal and transvaginal sonography is the first step for investigating suspected endometriosis in the New Zealand Diagnosis and Management guidelines for endometriosis . Stage Ivia ultrasonic imaging “I was also booked in for an ultrasound at [a radiology clinic], this was easily one of the worst experiences of my life. The nurse there was incredibly dismissive of my fears and anxieties surrounding the procedure and made me feel scared and embarrassed.” Transvaginal ultrasound can be an effective diagnostic tool for ovarian endometriosis, with a sensitivity of 93% and 96% specificity , and dee“Everything was within the realm of normal they said. But I was crying on the table with the transvaginal ultrasound and was still uncomfortable and in pain days later. Nudging my organs felt like my insides were being ripped. I do not know how much of this was down to inexperience [of the ultrasound operator], or my anatomy. Either way, I got next to nothing out of that experience.” “I was forcefully held down during on at [the hospital] even though I was screaming at them to stop [the transvaginal ultrasound].” “The ultrasounds were horrible, the hospital initially gave me a guy to perform them which made me really stressed, but I asked if I could please have a female, especially for the transvaginal ultrasound and the hospital agreed except then I had to wait for quite a while and then I don't think she was very gentle, it was really painful.” Eighty-two percent of the participants in this study had surgery to diagnose their endometriosis. Laparoscopic surgery is considered the “gold standard” for the diagnosis and treatment of endometriosis  and is t“Laparoscopy was life-changing in a way that it provided a definite diagnosis, and I began being taken seriously with my symptoms. I did notice relief from post-surgery.” “My recovery after the second surgery was pretty brutal. I had a lot of nerve damage. I was recovering from it as well as dealing with the Mirena side effects. Once those calmed down, my pain was lessened, and I started to have a relatively normal life again.” “When my surgery found nothing, and it fixed nothing, I felt so angry and confused, because I had no answers, and they didn't remove any [endometriosis], so I knew nothing would get better. It was frustrating, and all I could do was cry, because the pain would not be going away.” Working diagnoses are primarily given to endometriosis patients by a GP or OBGYN based on their history of symptoms. The definition of a working diagnosis of endometriosis is that a patient is suspected by their GP or OBGYN to have endometriosis because of their symptom history, but surgical intervention has not been attempted for a diagnosis, or, as in the cases above, endometriosis has been missed during surgery. For many patients, being assigned a working diagnosis was initially a cathartic experience as it was evidence that a doctor was willing to believe them. As one patient  in this study elaborated: “It is such a long process and while you are waiting for all of these appointments and doctors to believe you, you are still experiencing intense pain! To get some sort of answer is definitely a relief, but it totally sucks that they have to actually cut into you to make it conclusive.”While a working diagnosis usually means the patient is working with their primary healthcare practitioner to pursue treatment. Some participants with working diagnoses expressed that they feel excluded from endometriosis forums where other patients have surgically confirmed diagnoses, as they feel like less legitimate patients. Sixteen percent of patients within the study cohort had working diagnoses of endometriosis, but the proportion of patients in New Zealand that will have working diagnoses will likely be larger in the future. This is because the Endometriosis Management and Diagnosis guidelines in New Zealand dissuade medical professionals from pursuing diagnostic laparoscopy for endometriosis patients for the primary purpose of confirming the diagnosis . This is“As someone with a ‘working diagnosis’, I have been really frustrated with the health care responses I've experienced. I know others have similar experiences.” “There are still doubts in my head that make me think I am just making it all up.” “I have like imposter syndrome, having a 'working diagnosis', but not an actual diagnosis, I do not really feel like I can participate in the [endometriosis] community.” total confirmation prevents patients from feeling able to fully adopt the label of “endometriosis patient.” One patient  explained: “I think a diagnosis was the most helpful thing, from the very beginning just knowing what I was experiencing was not normal and it was not my fault and [I was] being heard.”Prior studies into the impact of endometriosis diagnoses on patients, found that confirmed diagnoses gave patients a language to discuss their disease, offered management strategies and confirmed that their symptoms were not the result of cancer . While tEndometriosis diagnoses can elicit a vast range of reactions and emotions. In this cohort, the most common emotion  was reli“The surgeon told me I had aggressive stage 3 [endometriosis] and I cried with happiness. Everyone was so confused. But I had been in severe pain for 7 years and I finally knew it was not all in my head.” Relief was also often accompanied by other emotions such as concern, sadness and anger. In addition to relief, many patients shared that they felt vindicated or validated, that they had been right about having endometriosis, and those that had dismissed them had been wrong. Endometriosis is a fundamentally incurable disease . It is r“I was relieved that the time I had spent making sense of my condition and grieving my health was validated, overwhelmed that I had put up with so much over the years and accepted that to be normal, and angry about the social conditions that have allowed this to happen and especially to other people who may not be in as fortunate as a position as I was to access healthcare.” “Relieved that finally I had an answer after being tossed aside and gaslighted by many doctors, teachers, co-workers, the list goes on. Anger for the above. Anger for living through so much pain when I had told someone at 16–if I had been properly treated then, maybe I would not have lived through so much pain.” Twenty-two percent of patients within the study cohort stated that their diagnosis made them feel upset, with others also stating they felt disappointed or tired. These endometriosis patients were upset over misconceptions about endometriosis, their delays to diagnosis, and the lack of perceived remaining options for them. Those that talked about how their endometriosis diagnosis had made them feel scared explained that those feelings were often derived from the information they were given about the associations between endometriosis and infertility. Feeling upset could also result from a perceived lack of remaining options for care, when existing options had failed:“Now I am mainly tired, and I am losing hope that things will get better. When I first got the diagnosis there were treatment options we could pursue. We have pretty much tried everything now.” Endometriosis is a chronic pain condition that can have a substantial negative effect on the mental health of patients due to both symptoms and impacts on social relationships and sexuality . In a 20[I am] “doing okay post all that [two surgeries] but [I] have a lot of anxiety around when it could rear its ugly head again and disrupt my whole life again.” “Sexual dysfunction is another ongoing issue (I have not had intercourse or intimacy with my long-suffering and supportive partner for over a year) and I am deeply depressed, lost and confused because I have no control over my body, the pain, the symptoms that seem to live on.” The frontline treatment for endometriosis is hormonal medications, primarily in the form of a combined oral contraceptive pill (COCPs) with estrogen and progesterone, progesterone-only pills (POPs), intrauterine devices (IUDs) and hormone replacement therapy (HRT) . To copeThe purpose of using hormonal medications for endometriosis treatment is to repress endometriotic lesions and/or to prevent the menstrual cycle . Many woWhen asked which treatments they would have liked to have started earlier, only 6% said they would want to go onto the pill earlier, while 34% said they would want to skip using the pill entirely . Prescri“It took 9 years to get a diagnosis in that time I was told it is just a bad period, contraception will stop everything.” “During the wait, I went on the [Depo Provera] injection which unfortunately worsened my pain (which was later diagnosed as vulvodynia) this was discovered when we attempted a cervical smear test in a clinic where I was screaming in pain and then passed out.” “The pill only masked the issue and allowed doctors to keep pushing it on me and not take me seriously. Trying to ‘push through it’ only caused me more pain.” “I tried a lot of contraceptives, which was always treated in a very banal way by medical professionals, but I struggled quite a bit with being on birth control. The pill had horrible mental side effects, and all other birth control methods caused my periods to become incredibly long and close together… The impacts of birth control on my body were quite stressful and physically exhausting as well, but it was never treated as something out of the ordinary… birth control never felt like treatment to me, it only felt like treading water, and it never worked sustainably.” IUDs are contraceptive devices inserted into the uterus through the cervix which deliver Levonorgestrel (a synthetic progesterone). There are two hormonal IUDs available in New Zealand, the Mirena and the Jaydess. The Mirena releases an average of 15 μg of hormone every 24 h  and last“The Mirena was awful. It caused horrible cramping that felt like I was being stabbed repeatedly. I was very frustrated that I had told my gynecologist that my mother had (painfully) ejected TWO IUDs, yet she still assured me that they would not be a problem for me. It turned out that the IUD was placed correctly, and my uterus just hated it.” [I had a negative experience with my] “IUD. [It] caused worse pain than I was experiencing with [endometriosis] beforehand.” Within this cohort, 64% of the patients had tried treating their endometriosis symptoms with an IUD, but only 50% of these patients found it an effective treatment. When asked which treatment they would wish to start straight away, 8% of participants shared they would ask for an IUD, while a further 18% stated they wished they had never used one. One positive statement about the IUD stated  “[the IUD] kept the symptoms at bay for the most part of four years”. Some participants highlighted that they had painful experiences during their insertions. New Zealand guidelines suggest health practitioners recommend that their patients take acetaminophen  or ibuprofen (aka Advil or Motrin) before the procedure, and take NSAIDs after the insertion if they experience pain . Some pa“Also, IUD insertion needs some sort of anesthetic. Panadol just does not cut it. The doctor lies and tells you it's relatively painless and that you will have 'mild discomfort'. The nurse warns you that you need to take more than a couple of Panadol.” Fundamentally, endometriosis is a condition of pain, however, there is inconclusive evidence that NSAIDs, such as aspirin and ibuprofen, provide greater relief to endometriosis symptoms than placebos . Opioids“I went back to my GP and he prescribed some Panadol. I then went to a different GP, who told me that since I had already been given the pill and Panadol she said there was nothing else to do.” “I found that Panadol and Ibuprofen were not that effective, and I got sick of being told to take pain relief.” “Being on opioid pain relief for roughly a year took a pretty big toll on my mental health. I hated feeling dependent to have a sort of normal life.” “Hot water bottles helped but I ended up burning my back (2nd-degree burns) because the codeine made me sleep soundly and I did not wake up when the [hot water] bottle leaked.” Long-term use of NSAIDs has known effects on the digestive tract including esophagitis and esophageal strictures, acute erosive gastritis, bleeding, gastric ulcer, upper gastrointestinal bleeding , small i“My first symptoms were when I got my first period at age 13. I had excruciating cramps, and my mother gave me Ibuprofen. It helped, and I continued to take Ibuprofen for about 17 years until my stomach could not handle it anymore.” In a 2021 retrospective cohort study of 252 endometriosis patients using cannabis, 57.3% were using it to treat their endometriosis-related pain . In the In a study of New Zealand endometriosis patients using cannabis to treat their endometriosis-related symptoms, 81.0% had reduced pain, 79.0% had improved sleep and 81.4% reported their cannabis use had allowed them to reduce their use of other medications . The red“Medicinal cannabis (CBD and THC oil) has really helped with the pain and allowed me to get on with my day most of the time… The best care I received was at the cannabis clinic where they were full of empathy and more helpful on my pain related to [endometriosis] than my own GP.” There is some evidence to suggest that the use of cannabis can be associated with stroke and atrial fibrillation, can alter the brain by reducing glutamate, decreasing the hippocampal volume and causing poorer global functioning,  and whenAmitriptyline (aka Elavil or Vanatrip) is a tricyclic antidepressant, which can be used to treat neuropathic pain and prevent migraines . Treatin “does not haunt the majority of my days now.” The purpose of laparoscopic surgical treatment for endometriosis is to excise endometriotic lesions. These lesions can then be histologically assessed to check the excised tissues for characteristics  that confirm the presence of endometriosis. While surgery is the only currently available treatment to remove endometriotic lesions, and hopefully by extension endometriosis symptoms, it is often not a permanent solution. In one study, 42% of the 1,160 endometriosis patients included had had at least three surgeries to treat their endometriosis . EndometDespite issues of recurrence, the endometriosis patients within this cohort had primarily positive experiences with surgical treatment for their endometriosis, even if the relief was temporary. Some participants raised a key concern that they were not provided with sufficient support following surgery to heal successfully, particularly multiple participants who found their cramping worse than ever in the months following surgery, before beginning to feel relief. Of the 84% of participants that had had laparoscopic surgery for endometriosis, 67% found it to be an effective treatment. Laparoscopy was the highest-rated treatment that the patients within the study wished they had had straight away (36%), and none stated they wished they had skipped it. Even when the experience of laparoscopy was challenging or painful, many patients still considered it an overall positive experience:“The laparoscopy was what finally gave me a few years of peace. I was lucky enough to have a surgeon that actually knew what he was doing and could also tell before the surgery through ultrasound/touch on my sensitive areas where the worse affected area was.” “Although the surgeries and recovery were nerve-wracking and I had hesitations about them, it was a positive experience in terms of the outcome.” “Surgery did not help with my pain at all. Although knowing I had endometriosis and improved fertility from the surgery was enough for me.” Endometriotic tissue is similar to the tissue that lines the uterus. The partial or complete surgical removal of the uterus during a procedure called a hysterectomy may remove a source or area of endometriotic tissue that causes the condition. Having a hysterectomy means the patient no longer has menstrual periods, but the procedure alone does not cause menopause. Surgical menopause is induced by bilateral oophorectomy, where the ovaries, which are the main source of estrogen for the body, are removed. Hysterectomy for endometriosis must be performed simultaneously with the excision of lesions, or the risk of persistent symptoms is increased . HystereIn this cohort, 12% of the endometriosis patients had undergone a hysterectomy, and 100% of these patients had found it an effective treatment for their endometriosis. Some of the patients shared that they had had to convince their medical practitioners to support their ambition to obtain a hysterectomy. Concerns of medical practitioners about the medical procedure ranged from it will make you die young” to “how will your family line continue?” and “what if you meet someone and they want kids?”. Some patients expressed massive relief following the procedure, with some wishing they had had the procedure at a younger age and avoided pain:“Endometriosis was not even considered in my case until after I had everything removed and my surgeon told me that that is what he found. Surely an exploratory operation before a full hysterectomy could be worth it for some women?” “One day many months after the [hysterectomy], I woke up with no pain and thought something was wrong. And cried. This is what no pain feels like. New me. Not angry at the world anymore… This is a massive decision to make, means no babies, but my mental health welcomed it.” “The relief, the liberation, it has been life changing. Getting rid of my reproductive organs has been hands down the best most liberating decision of my life.” The impact of endometriosis on the lives of patients are complex and are not simply an interruption of psychosocial interactions and relationships . EndometExercise and increased physical activity are often suggested as an alternative to treatment methods such as hormones, pain relief and surgery . The pri“I am a fit person. Yet [exercise] resulted in extreme pain frequently and was not helpful.” Pelvic physiotherapy was well-regarded by this study's cohort, with only one participant wishing they had never tried it to treat their endometriosis, while 7 wished they had started right when they started having endometriosis symptoms. Of the 18% of the cohort who had tried pelvic physiotherapy to treat their endometriosis symptoms, 89% had found it to be effective for them. The purpose of pelvic floor physiotherapy is to retrain the pelvic muscles so that they can relax and coordinate contractions. The expectation is that this improved capacity to relax and co-ordinate pelvic floor muscles will improve patient experiences of pelvic and back pain, painful urination, and bowel movements , as was “Pelvic floor [physiotherapy], amazing, helped me in so many ways for pain management, relationships/sex.” via hysteroscopy into the uterine myometrium (muscle) in patients with severe dysmenorrhea and pelvic pain, found that quality of life scores “improved dramatically” and sexual activity discomfort reduced significantly (Botulinum toxin (BTX) injections are an emerging potential treatment for endometriosis symptoms , 81. Pelficantly . After 6ficantly . Althoug“Pelvic Botox [and] nerve blocks have been incredible for me, Botox reduced [the] pain.” Imbalances to gut microbiota composition have been connected to the compromised immunosurveillance and altered immune profiles associated with endometriosis , with roOne participant shared her experience with the group of the lengthy recommendations from her endometriosis dietician. During a 4-month program, at a price of USD 250 a month, the dietician was able to identify foods that were triggers for endometriosis pain, and supplements that would help manage their symptoms. The foods the patient found they needed to remove to reduce their pain were caffeine, alcohol, garlic, onions, chili, dairy, gluten, corn, sugar, processed food, red meat, eggs, pork, peanuts, legumes, and brassicas. They also needed to increase their consumption of leafy greens, fiber, and fish, especially salmon for its rich source of omega-3 fatty acids. Some participants spoke very highly of the effect of diet changes on them, however, one patient  highlighted that: “when I found out that caffeine, alcohol, garlic, onions, chili and dairy all negatively impact me, I was not happy.” This quote highlights that while changes to diet can be effective for some patients, including half of the patients in this study that had attempted dietary changes for treatment, it can be perceived as yet another sacrifice the patient has to make because of their condition.Acupuncture is considered an effective method for the treatment of chronic pain, and is a procedure in which fine needles are inserted into the skin at specific points . This pr“Acupuncture really helps me. I could walk in doubled over and leave being able to walk normally again, it's good to have a drug free option. This option is not offered by traditional medicine.” Within this cohort, 12% of patients reported experiencing infertility that they considered to be related to their diagnosis of endometriosis. Amongst the patients of the cohort, 10% utilized fertility treatments, with 20% finding those treatments effective. Fertility issues are common amongst endometriosis patients, with up to 50% experiencing sub-fertility or infertility . Endomet“I would say I was most devastated when I was googling my symptoms and endometriosis came up, especially as everywhere it was said that it affects a person's fertility. I badly wanted to become a Mum, to have children. Living with the fear of not being able to do this due to endometriosis was really really scary—along with the fact that there is no real cure to endometriosis.” “I have unfortunately needed 4 rounds of IVF to conceive our first child and it was such a lot to go through. I am so glad I did it though!…The waitlist for [publicly] funded IVF was 18 months but think it could be getting longer with COVID and more people needing help. If I am honest, going private while expensive works better because the doctors do not hold back medication.” Since the recruitment method employed for this study required an expression of interest from self-selected patients, this may have resulted in an over-representation of patients who are dissatisfied with their care, and therefore have a greater desire to share negative experiences, which could bias the results of this study toward representation of these experiences. In a 2007 study by Agarwal et al. about the motivations for endometriosis patients to participate in clinical and basic science studies, they found that the strongest motivating factors for participation were the “potential benefit to other women's health” followed by “dissatisfaction with current treatment options” and a desire to “improve [their] own condition” . In thisA second limitation of the study is that information about the ethnicities of study participants was not collected, however, some patients did identify this information in their answers. In New Zealand, 17.1% of the population is Māori , howeverThis cohort study has highlighted some key patient experiences with diagnosis and treatment of endometriosis that require attention and improvement in the near future. We believe these changes have the capacity to improve the experiences endometriosis patients have with diagnosis and treatment immensely.The use of transvaginal ultrasound in the care of endometriosis patients should be assessed and carefully considered. The pain relayed with the procedure discussed by patients in this cohort was extreme. It seems prudent that a transvaginal ultrasound should only ever be applied to endometriosis patients by practitioners aware and proficient in the techniques specific to the detection of endometriosis, to improve the chance of accurate detection, and to potentially reduce the pain associated with the procedure. This procedure should not take place if the patient is unwilling to have it completed, as occurred in the recount of one patient within the study. It may also be beneficial to offer patients the ability to insert the probe themselves, as was highlighted by one patient : “the person conducting it asked me to insert the wand, which made me feel more in power of my situation and more human.”The role of hysterectomy in endometriosis care, and the perspective of patients about the prospect of hysterectomy, or their experience with hysterectomy should continue to be assessed. To date, studies of the outcomes of hysterectomy have been favorable for selected patients , a trendIncreasing public awareness of endometriosis will be of benefit to patients. If the impact of endometriosis, particularly the effects on the capacity to complete study and work, are better understood by the general public, this may reduce the negative responses some endometriosis patients have faced from their employers and their peers.There were low overall reported efficacies for available treatment methods by the patients of this cohort. This indicates there is likely a strong desire amongst patients for novel treatments to improve their condition. For new or improved treatment options to become available, the funding available for endometriosis research and endometriosis care will need to increase. To effectively reduce the delay to diagnosis, the funding allotted to the training and provision of gynecological specialists and facilities will also need to increase to create a proficient and larger workforce to clear the waitlist and backlog of endometriosis patients requiring treatment. Ongoing attention should also be paid to the experiences of patients with working diagnoses and their capacity to access effective endometriosis-focused holistic pain management schemes.For endometriosis patients, the key diagnostic tools employed were symptom history to give a preliminary, “working diagnosis,” abdominal and transvaginal ultrasounds, and laparoscopy that could confirm the presence of endometriosis. While experiences with abdominal ultrasound ranged from neutral to positive, experiences with transvaginal ultrasound were predominantly negative. For a procedure that should not hurt, and reportedly may only cause some discomfort , multiplExperiences with laparoscopy were primarily positive, with many endometriosis patients being left with palpable relief that endometriotic lesions had been identified as an explanation of their symptoms. The negative experiences with laparoscopy centered around insufficient post-operative care, the need for repetitive treatments, and in the cases where endometriosis was missed during an initial laparoscopy, leaving patients with all their lesions and no relief. The most common feeling endometriosis patients felt after obtaining their endometriosis diagnosis was relief (88%). This reaction is emblematic of the difficulty involved in the journey an endometriosis patient often must go through to obtain this diagnosis. There are few other diagnoses where the disease is both chronic and incurable, where so many patients' first reaction is relief that at least they were not making it up, as one patient  explained her relief that: “the surgery was not for nothing, that I might feel a bit better and that I would not look like a hypochondriac anymore.”Endometriosis patients in this study's cohort had attempted a wide range of treatment options to reduce their endometriosis symptoms of pain, including pain relief medications (96%), laparoscopy (84%), COCPs (80%), exercise (66%), changing their diet (16%) and hysterectomy (12%). For the portion of patients that had used a certain treatment, the most effective treatments were hysterectomy (100%), laparoscopy (67%), neuropathic pain relief (50%), IUDs (50%) and diet changes (50%); whereas, the least effective were COCPs (25%), POPs (24%), counseling (20%), and fertility treatments (20%). The treatment that the greatest number of patients wished they had done much earlier was laparoscopy, while the treatment most patients wished they had skipped entirely were COCPs.Endometriosis is a condition predominantly characterized by chronic pelvic pain, as well as painful disruptions to experiences such as menstruation, sex, ovulation, urination, defecation, and attempts to operate effectively in the workplace, in education, and in everyday life and relationships. The immense impact of this pain on the experiences of this cohort was evident, with 8% not working because of their disease and frequent reports of disruptions in school and the workplace. The intangibility of endometriosis for most patients, as scanning technology frequently cannot image the source of their symptoms, makes proving their pain to external parties challenging, and frequently leads to dismissal and minimization by others, including the clinicians that are supposedly in a position to help them.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by University of Canterbury Human Research Ethics Committee. The patients/participants provided their written informed consent to participate in this study.KE, DM, and RW contributed to the design of the questionnaire, KE recruited the participants, moderated the discussions, analyzed the results, and was the primary author of this paper through conception and analysis. DM and RW have contributed equally to this work through critical revision and editing. All authors contributed to this article and approved the submitted version.The Biomolecular Interaction Center provided seed funding to the Engineering Endometriosis Research Program  at the University of Canterbury in 2021. A portion of this funding was used to provide the study participants with inducements as an appreciation of their time.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


To evaluate time-dependent administration of ibuprofen in a lower third molar extraction model.Eleven patients requiring bilateral surgical removal of lower third molars were recruited and randomized into a blinded crossover randomized controlled trial. For 3 days after surgery, the control group was prescribed ibuprofen 400 mg every 8 h. On the other hand, the experimental group received also ibuprofen 400 mg at breakfast and lunch, replacing the dinner intake with a placebo. Pain measurements  were recorded at baseline, 24, 48, and 72 h postoperatively. Facial swelling and trismus were also measured at baseline, 24, and 72 h postoperatively.p = 0.008). Rescue medication consumption seemed to be comparable between groups.Postoperative swelling and pain perception did not show significative difference between the control and experimental groups at 24, 48, and 72 h. Trismus was significantly lower in the control group than in the experimental group at 72 h postoperatively (Eliminating night time ibuprofen might be insignificant for pain control after third molar extraction. Third molar (wisdom tooth) extraction, both prophylactically and due to odontogenic infection, is one of the most common surgical interventions in the world –4. PostoIn addition, wisdom teeth surgery is estimated to cost $3 billion per year in the USA alone, which places a burden on healthcare systems, and a proper pain management with a correct drug dosage could result in savings of $130 M per patient and reduce the back to work after health problems from 66 to 27% , 9.circadian rhythm that controls and modulates a wide range of their biological activities [Several medications are routinely prescribed for pain management after third molar extraction such as acetaminophen, opioids, and non-steroidal anti-inflammatory drugs (NSAID). Acetaminophen is insufficient for managing moderate to severe postoperative pain, and opioids can be addictive and cause constipation. NSAID, which are commonly prescribed, are indeed efficient in managing postoperative pain, but they have several adverse effects such as gastrointestinal complications and delayed bone healing –12. Ibuptivities . These rtivities , 17. Thetivities –20, and tivities , 21.Moreover, inflammatory mediators have been described as day-time dependent , 22. Forchronotherapy) with the circadian rhythm of the body could lead to superior pain management and fewer side effects [Different clinical studies suggested that timing of drug administration . Informed consent was obtained from all participants in writing prior to conducting the research, and the principles of the Declaration of Helsinki for research involving human subjects were followed. The trial was registered with the ClinicalTrials.gov number NCT05126264 in October 2021.This randomized, double-blinded, placebo-controlled, crossover design pilot study was conducted following the CONSORT  guidelinPatients were accepted in the clinical trial from those who attended the Oral Surgery Department at the Dentistry Faculty of the Complutense University of Madrid between September 2019 and December 2020 with needs of lower third molar extraction. The screening examination was performed by a 2nd-year resident program in Oral Surgery and Implant Dentistry (FPG) and included a medical and dental questionnaire and a standardized panoramic radiograph made at the Dental Radiology Service, Faculty of Dentistry, Complutense University of Madrid . Healthy males and females aged between 18 and 35 years old who presented with impacted bilateral lower third molar with similar surgical difficulty  were incTo reduce bias for this pilot study, both patients and surgeon were blinded to treatment group allocation. Second-year surgical resident performed all the surgical procedure (FPG). Both third molar side and medication (3 times ibuprofen or 2 times ibuprofen + placebo) randomization were performed by the main investigator (JTGD) using a coin flip. Other than providing medications, the investigator did not have any contact with the study’s participants or involvement in data collection. Data analysis was performed by an independent investigator (MA).All surgical procedures were conducted by a single surgeon (FPG) at 9:00 am in all the cases. A minimum of 1 month for washing up was left between one surgery and the intervention on the contralateral side. Local anesthesia consisting of 4% articaine with adrenaline 1:100,000 was administered for the inferior alveolar, lingual, and buccal nerves . An intrasulcular incision from the lower first molar with a vertical releasing incision in the ramus was made, and then a mucoperiosteal flap was elevated. A tungsten carbide bur with a surgical handpiece was used to perform bone removal, and when necessary, also a Lindemann bur was used to section the third molar. After the tooth extraction, bony edges were smoothened, and socket was washed with copious use of saline solution. Then, the flap was sutured with simple interrupted sutures using 4.0 Supramid . Surgery time, surgery difficulty according to Parant scale , and surAccording to our primary outcome, pain measurements  were recorded at baseline, 24, 48, and 72 h postoperatively. As a secondary outcome, facial swelling parameters such as distance from Tragus to Pogonin (Tg-Pg)  and trisp < 0.05. Descriptive statistics were calculated for all variables . After testing for normality, non-parametric tests were used. For the quantitative variables, Wilcoxon signed rank test was conducted, and as to qualitative variables, McNemar’s chi-squared test was performed.Data were entered on a spreadsheet  until the end of the trial and analyzed with R statistical program (4.0.2) by an independent investigator (MA). The significance level chosen for all statistical tests was IQR = 20.00, 21.50) were recruited, evaluated, and included in our analysis. Baseline parameters are presented in Table In this RCT, 11 patients, median age of 21 years (p > 0.05) . Similarly, we also found no significant difference in total RM consumption (p > 0.05). In accordance with our secondary outcome, both facial swelling and mouth opening measures (24 h and 72 h postoperatively) were similar in experimental groups . No pharmacological side effects were reported in the study.Table 05) Fig. . All patThe aim of this pilot study was to evaluate the effect of the NSAID chronotherapy in the postoperative period after surgical extraction of third molars, comparing swelling, trismus, and pain.As it is known, chronobiology is a medical discipline that was first described in the 1960s decade. Its study involves the body rhythms that regulate different functions and are known as circadian rhythms , 35. TheThe influence of circadian rhythms on metabolic processes and their ability to modify the pharmacokinetics of drugs has been described. They can modify the efficacy or side effects of drugs depending on the time of day they are taken; this phenomenon is known as chronotherapy . ChronotLower third molar surgery (LTMS) is, irremediably, associated with pain, swelling, or/and trismus . These pp = 0.008).Regarding the trismus associated with postoperative LTMS, Saez et al. compared a chitosan gel against a placebo, observing a lower limitation in the experimental group , unlike Swelling appears in the soft tissues after an injury or an intentional aggression as the LTMS, according to the immunity response. The tissular damage promotes the prostaglandins releasing and facilitating macrophages or interleukin appearance which works on tissular damage reparation and pain management . There iRecently a similar study was performed comparing the effect of chronotherapy of the NSAIDs, finding no differences in terms of trismus or swelling indicator and pain scores between the experimental and the control group. They also considered that the night intake of NSAID do not provide any potential benefit in the post-surgical lower third molar treatment .p < 0.05) in the experimental group, and it could hypothesize that the patients who did not received the NSAID in the nighttime suffered a higher accumulation of inflammatory mediators that could be traduced in a higher morning pain intensity. Also, though the time between both extraction is 1 month, according to the US Food and Drug Administration, 1 week is time enough for body washing up [Nevertheless, in the present pilot study, the patients referred a higher pain intensity during the morning or the first hours in the afternoon. This difference was statistically significative (shing up .One of the strengths of this study is the split-mouth design, thus avoiding interindividual bias in the assessment of the different parameters studied; however, although the results observed in this study are positive, there are some limitations such as the randomization process and the necessity of implement a higher sample size to guarantee the results. Moreover, it should be interesting to compare the chronotherapy by investigating the inflammatory markers levels in blood samples and different types of NSAID with other dosages.The use of ibuprofen mediated by chronotherapy has shown similar results to the classical dosage in terms of pain, swelling, or trismus after surgical third molar extraction.


A 44-year-old male presented with left upper extremity and shoulder pain with worsening functional impairment after years of repetitive use, overtraining, and multiple injuries from weightlifting and mixed martial arts. Imaging showed no obvious injury or ligamentous deformity other than mild osteoarthritis (OA) of the left glenohumeral joint. Duplex ultrasonography (US) revealed four arteriovenous malformations (AVMs) surrounding the shoulder joint and left upper extremity. The vasculature was mapped via angiography through a transradial approach. Initial treatment included transarterial embolization of two AVMs off the axillary artery and branching anterior circumflex humeral artery. Secondary treatment included embolization of two lesions months later via direct puncture, one through a transvenous approach and the second through direct transmalformation cannulation, via the nidus, near the clavicle and posterior scapular lateral border. Treatment resulted in significant improvement in pain and range of motion. Follow-up assessments revealed improvement in overall symptoms, recovered function, and return to exercise and competitive mixed martial arts. This case highlights the value of duplex ultrasonography, embolization, and transarterial and transvenous approaches for the treatment of AVM-associated extremity or joint pain. Peripheral arteriovenous malformations (AVM) are congenital or acquired vascular anomalies characterized by aberrant flow, abnormal connections between vasculature, and abnormal flow resistance ,4. WhileAVMs are difficult to diagnose, manage, and treat. Hemodynamic changes are associated with pain, pressure, and decreased function and can be associated with hemorrhage, aneurysm, muscle failure, and tissue destruction, depending on the location and nature of the lesion . ArterioTreatment depends on the angiographic pattern and location of the lesion, with surgery or endovascular intervention being the standard. Endovascular embolization is a less invasive, catheter-based intervention that is a safe alternative to traditional resection with a small risk of nontarget embolization, arterial damage, contrast-induced nephropathy, and puncture site bleeding . SurgicaDirect cannulation and embolization is a treatment for patients with symptomatic arteriovenous malformations. Here, we report the successful treatment of a 44-year-old male with four symptomatic arteriovenous malformations of the left upper extremity associated with left shoulder pain and decreased function after years of repetitive use injury and blunt trauma. Diagnosis was made via duplex ultrasonography, lesions were mapped via angiography, and the patient was treated with transarterial embolization with tris-acryl polymer embosphere microspheres and direct transvenous and transmalformation cannulation embolization with gelfoam, reporting near-complete improvement in pain, symptoms, and functioning.A 44-year-old male with a past medical history of osteoarthritis, back pain, and hypercholesterolemia presented with pain, occasional swelling, and decreased range of motion to the left shoulder. Pain was described as a dull ache, occasional burning pain after exercise with limited use of the left shoulder. Pain was localized to the shoulder joint, the lateral deltoid, trapezius, and near the clavicle. Pain was exacerbated by excessive movement, lifting weights over 5 pounds, exercise increasing circulatory demand, and mixed martial art movements requiring the upper extremities. Pain was partially relieved with ice and rest after not using the shoulder for a few days. Physical examination revealed local swelling and pain to the deltoid and trapezius with palpation. On initial examination, patient had a positive drop arm test, belly test, and Jobe test, and forced abduction test, but a negative Neers test, Hawkins test, apprehension test, drawer test, sulcus test, speed test, Yergason test, empty can test, speed test, Roos test, and compression test. The patient had been trialing conservative treatment for three years, including over-the-counter acetaminophen, ibuprofen, ice, heat, physical therapy, rest, acupuncture, and muscle energy with mild temporary relief. Pain always returned or worsened after circulatory demand increased.Diagnostic radiographic imaging revealed osteoarthritis of the glenohumeral joint. Magnetic resonance imaging revealed intact supraspinatus, infraspinatus, subscapularis, and teres minor. Normal subacromial and subdeltoid bursa. No muscle atrophy. Biceps tendon intact was without evidence of tendinopathy or tenosynovitis. Mild degenerative changes of the acromioclavicular joint without evidence of separation, effusion, or ligamentous injury. Normal subacromial and subcoracoid arch and normal glenoid labrum without evidence of a superior labral anterior posterior (SLAP) tear of the glenoid labrum. No evidence of fractures or skeletal or soft tissue infections. Normal axilla without adenopathy. Doppler ultrasonography of the upper left extremity revealed one symptomatic high-flow arteriovenous malformation near the surgical neck of the humerus and three possible AVMs surrounding the left shoulder, near the posterior deltoid, acromioclavicular joint, and the clavicle. After informed consent and a complete discussion of risks, benefits, alternatives, and the expected postoperative course, including the possible need for additional procedures, the patient was taken for angiography of the left upper extremity with intraoperative doppler ultrasonography. A bubble study was obtained preoperatively, ruling out the possibility of paradoxical embolus and patent foramen ovale (PFO).The patient was brought into the operating room and prepped and draped in the customary sterile fashion. The limb was mapped out, distal runoff vessels were checked and a suitable cannulation location was chosen. A transarterial approach was used with ultrasound-guided left radial artery cannulation using a 4 French micropuncture sheath. The guidewire was advanced from the radial artery to the brachial, then to the axillary artery. Subselective cannulation of secondary branches was performed to verify location and positioning. Two regions, one off the anterior circumflex humeral artery Figure  and one On post-op follow-up, 24 hours after embolization, patient reported mild pain at the cannulation site, but no interarticular discomfort or pain in the arm or at the glenohumeral joint. At two-week follow-up, patient reported improvement in overall symptoms but still complained of discomfort near the supraspinatus and trapezius radiating to the glenohumeral joint. Since initial embolization, he resumed mixed martial arts reporting improvement up to 90% of his reported baseline. The decision was made to watch and monitor before repeat intervention.Three months after initial treatment, patient was brought back in for additional treatment as he reported continued symptoms though a change in location from initial presentation. On preoperative ultrasonography, he was noted to have two monophasic, moderate flow lesions, one supraclavicular nidus with a velocity of 44 cm/s superior to the clavicle not consistent with the transscapular artery, and a second posterior nidus with a velocity measuring 21 cm/s along the lateral border of the scapula near the intersection of the deltoid and teres minor. After a complete discussion of risks, benefits, alternatives, and expected postoperative course, patient was brought to the operating room and prepped and draped in the customary sterile fashion. A transvenous direct cannulation approach was performed using a 4 French micropuncture catheter under real-time ultrasound guidance near the clavicle Figure . ContrasAt 24-hour follow-up and at two-week follow-up, patient reported near complete resolution of initial symptoms. He reported some mild discomfort at the start of exercise but was now back to weightlifting and mixed martial arts. Six-month follow-up reviewed continued results without reoccurrence or new symptoms. Long-term follow-up is planned.Above, we report the successful treatment of four symptomatic arteriovenous malformations of the left upper extremity with transarterial, transvenous, and transmalformation direct cannulation embolization. These treatments offer a less invasive option with a low risk of complication. Given AVM unpredictability, successful treatment often requires a multimodal approach with more than one treatment session. Non-target embolization is a well-documented complication of AVM-related endovascular procedures. Care was taken to prevent complications by modifying the approach for each lesion .For patients with acquired AVMs, the distribution of blood flow can cause areas of high-flow, turbulence, or enlarged draining veins through intervening low-pressure niduses. With such an incalculable behavior pattern, AVMs are difficult to diagnose, manage, and treat. The abnormality between the venous and arterial circulation results in altered blood pressure ,19.Future research should focus on using validated treatment outcomes for vascular malformations, such as the Lymphatic Malformation Function (LMF) instrument questionnaire for patients with vascular malformations . AdditioIn the present study, we successfully treated a patient’s chronic shoulder pain with both transarterial, transvenous, and direct transmalformation cannulation embolization. The patient reported a high patient satisfaction score, including immediate pain relief following the procedure and satisfaction with the procedural experience and results. The patient self-reported an improvement of pre-interventional symptoms following the procedure. Direct puncture cannulation and embolization reduces the risk of perioperative complications for patients, improves recovery time, and minimizes operating time and operating costs. Embolization is a safe and effective treatment for symptomatic peripheral AVMs after initial conservative therapies fail.


This is a cross-sectional study of 63 patients with CPP sent for a psychological evaluation due to participation in group therapy for CPP. The main purpose of this study was to characterize the baseline psychological characteristics of women with CPP. The NEO Five Factor Inventory (NEO-FFI), State and Trait Anxiety Inventory (STAI), Beck Depression Inventory-Fast Screen (BDI-FS), Pain Catastrophizing Scale (PCS) and Chronic Pain Acceptance Questionnaire (CPAQ) were performed. (3) Results: The personality profile of patients (NEO FFI) shows high neuroticism, low extraversion and low conscientiousness. The 25.4% of patients had moderate or severe depression according to BDI-FS results, almost half of the patients had high levels of anxiety trait  and more than half the patients had high levels of anxiety state . Punctuations of PCS and CPAQ are similar to patients with fibromyalgia. (4) Conclusions: CPP is associated with high levels of depression, anxiety, neuroticism, catastrophizing and low pain acceptance. It is important to develop interventions that can modify these psychological factors in order to improve the clinical course of CPP. Chronic Pelvic Pain (CPP) is a debilitating condition that is present in 4–43.4% of women worldwide according to different studies ,2. In SpCPP is a pain localized at the lower abdomen, pelvis or pelvic structures, that persists for at least six months and occurs continuously or intermittently . It can Some key factors in CPP such as pelvic pathology, history of abuse or comorbid psychological conditions like depression, anxiety or catastrophizing have been described ,9.Not many studies have focused on the psychological profiles of women with CPP ,10,11,12The personality trait that has been most studied in chronic pain is neuroticism. A considerable number of studies have found higher levels of neuroticism compared to control groups in various chronic pain types ,23,24,25There is a paucity of data regarding the role of personality traits in CPP. One study investigated the association of personality traits with the baseline clinical characteristics and treatment outcomes of patients with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), finding that neuroticism may be the most important personality trait associated with treatment response and the severity of depression and somatization in patients with CP/CPPS . AnotherThe main purpose of this study was to characterize the baseline psychological characteristics of women treated in a multidisciplinary group of CPP. The secondary goal was to investigate if psychological and personal variables are related to each other and in which way.Given the importance of psychological and personality variables in chronic pain in general and in CPP in particular ,32,33,34Our main hypothesis is that the study participants will have high levels of depression, anxiety and catastrophizing, low acceptance of pain and high levels of neuroticism as part of the personality dimension. Our secondary hypothesis is that anxiety, depression and catastrophizing may be positively correlated.This is a cross-sectional descriptive study without a comparison group. The participants were comprised of sixty-three women aged 18 and older with CPP. They were referred between 2019 and 2022 by professionals from urology, gynecology and digestive departments to the psychiatry department of the University Hospital Puerta de Hierro Majadahonda, Madrid (Spain) to be evaluated prior to entering a psychotherapeutic group for CPP. The criteria the deriving physicians used for referral to psychiatry evaluation were emotional distress and/or the presence of psychopathology associated with CPP that interfered with its outcome. All patients who agreed to fill in the questionnaires and that these could be used for research purposes were included. The verbal informed consent was obtained at the end of the evaluation visit. Participants did not receive any financial compensation. Ninety patients were referred for evaluation. Of these, five did not attend the scheduled appointment, and twenty-one did not participate in the research. However, non-participation in the research did not exclude the possibility of joining the psychotherapy group.This research is part of a larger project that aims to assess the effectiveness of the psychotherapy group in CPP. The project of which this study is a part was approved by the Drug Research Ethics Committee.A clinical interview ad hoc was performed by a clinical psychologist or a psychiatrist, who are part of the Multidisciplinary Group for CPP Management. The instruments below were used for the assessment of the patients.An unstructured interview was carried out to collect sociobiographical data as well as the most relevant clinical history. Before the clinical interview, the patient’s electronic medical record was reviewed in order to obtain the most precise history as possible. Both psychiatric and history of pain variables  were explored. Although the evaluators had a script to cover all the relevant information that we wanted to assess, this was not always possible, which explains the loss of some data.This is the validated Spanish version of the NEO-FFI, a scale of 60 items selected from the original Revised NEO Personality Inventory (NEO-PI-R) to carry out a rapid personality assessment. The inventory provides a rapid personality configuration based on the five major factors: extraversion (E), neuroticism (N), agreeableness (A), openness (O) and conscientiousness (C). Each of these factors is assessed by 12 Likert-type items to be answered on a scale from Strongly Disagree to Strongly Agree .This scale is an abbreviated adaptation of the Beck Depression Scale (BDI) with only 7 items with the aim of screening for possible depressive symptomatology .This is one of the most widely used tests in clinical settings for the assessment of anxiety since, in a brief form, it evaluates both current anxiety symptoms (SA) and anxiety as a stable trait (TA) of the subject’s personality. It consists of 40 Likert-type items ranging from Almost Never (0) to Almost Always (3) .This questionnaire is based on the assumption that acceptance rather than avoidance in chronic pain patients is a predisposing factor for improved daily functioning. It is composed of 20 Likert-formatted items and assesses both pain willingness (PW) as well as the subject’s willingness to engage in activities (AE). It has been widely reviewed and validated. In Spain it has been validated in fibromyalgia, a pathology that causes chronic pain ,46. HighThis is a Spanish adaptation of the PCS, given the weight that this psychological variable has in the course of CPP; we considered it necessary to include an instrument that would specifically assess it and, later on, check whether the treatment proposed would have an impact on it. The Spanish version of this questionnaire is made up of 13 statements to which the patient has to give a score from 0  to 4 (All the time) according to his or her degree of agreement with the statement The PCS yields a total score ranging from 0 to 52 and has three subscales assessing rumination, magnification, and helplessness. It has been used and validated in different types of pain, including endometriosis ,48.p value < 0.05 was considered statistically significant. Statistical software Stata v. 16 was used for data analysis.Descriptive statistics were mainly extracted for the means and 25, 50 and 75 percentiles of the assessment scales. A one-sample Student’s t-test was performed to compare the means of CPAQ and PCS of our sample group with the means provided by the Spanish validation of both scales, for the population of fibromyalgia and endometriosis, respectively. Subsequently, Pearson correlations analyses between the different scales and subscales with each other were carried out. All the participants were women aged between 22 and 79 years, with a mean age of 44 and a standard deviation (SD) of 12.6 years. Most of the patients came from the gynecology department; 68.2% of them were married or in a couple, 7.9% were divorced and 23.8% were singles; 59.7% had children and 40.5% did not; 42.8% had university studies; 30.2% were active workers, 20.6% were unemployed and 28.6% had a work incapacity .A substantial number of women had a past psychiatric history (73.2%), depression being the most prevalent of the psychiatric disorders (21.4%), followed by anxiety disorders (14.3%) and adaptative disorders (12.5%). Only 26.8% of patients had no past psychiatric history. Similarly, 63.3% of patients had a family psychiatric history, depression being the most prevalent disorder (30.6%), followed by substance use disorder (8.2%) or psychosis (8.2%). Most of the patients had current pain treatment (80%) and 44.2% had psychopharmacological treatment. The substance consumed most frequently was alcohol (35.9%) followed by tobacco (23.7%). Only 5.1% consumed cannabis and 2.6% cocaine. The data regarding past history abuse show that 41.18% had past abuse .In the personality scale NEO-FFI, we found high mean (P25–P75) levels of neuroticism , low extraversion  and low conscientiousness  . It shouThe data obtained from the BDI-FS are shown in The State and Trait Anxiety Scale (STAI) results are shown in The STAI correction offers, for each score, the percentile to which it corresponds according to its normative group, in this case, the general population of adult women. It can be seen in the table that more than 70% of our sample obtains scores above the 50th percentile (78.6% in the case of State Anxiety (SA) and 71.2% in Trait Anxiety (TA), and in both cases, most of this sample is between the 85 and 99th percentile (38.1% and 27.1%). The sample mean corresponds to a 75–85 percentile in the case of SA and a 50–75 percentile in TA.p = 0.55). There was also no significant difference between our sample mean and that provided by the PCS scale for endometriosis (T = 0.79 p = 0.42).The results of the Pain Catastrophizing Scale (PCS) and Chronic Pain Acceptance Questionnaire (CPAQ) are shown in The correlation analyses are presented indicating with * those clinically relevant (r of Pearson > ±0.6). Correlations of levels of the same variable are not indicated. Regarding the STAI scale, The overall analysis of the CPAQ does not yield clinically significant correlations, although it seems important to point out that in its relationship with the STAI-SA, STAI-TA and BDI, most of the inverse correlation found is explained by the activity index  and not by the pain acceptance subscale . Finally, with respect to the relationship between PCS and CPAQ, although no correlation could be considered relevant, it can be noted that the Helplessness subscale of PCS is the one with the highest correlation with CPAQ (r of Pearson = −0.45).The analysis of correlations of the clinical variables with the personality assessment subscales did not yield relevant correlations . Only a Chronic pelvic pain is a clinical condition that affects a significant percentage of the population, especially women  ,49,50; iOur results confirm our main hypothesis. We have found that 57.6% of the women have depressive symptoms with a 25.4% of the sample having medium or severe symptoms. More than 70% of the patients have high levels of anxiety obtaining scores above the 50th percentile on the STAI scale (78.6% STAI-SA and 71.2% STAI-TA). Catastrophizing can be considered high with half of the patients with scores of 29 and above  and low illness acceptance . Regarding personality traits, we found high neuroticism as hypothesized, but we also found low extraversion and low conscientiousness, a finding not described as a cluster in previous studies in this population.Regarding the secondary hypothesis, we found positive relevant clinical correlations between anxiety and depression (r of Pearson = 0.74 for STAI-TA and 0.64 for STA-SA) as hypothesized but did not find correlations of anxiety and depression with catastrophizing. Unexpectedly, we found a relevant correlation between neuroticism and trait anxiety (r of Pearson 0.65). Below we discuss in detail the different results obtained in our study.With regard to sociodemographical data, we found that almost half of the patients do not work either because they are unemployed (20.6%), on temporary leave (27.3%) or on permanent incapacity for work (5.5%). Data of unemployment in Spanish women (over 25 years of age) between 2019 and 2022 ranged between 14–16.9% , being tp = 0.74 with STAI-TA and p = 0.64 with STAI-SA), which is a correlation also found in a study analyzing the psychologic profile in women with CPP, although in that study it was no so relevant as we found (p = 0.575) [In our study, more than half of the sample 57.6%) had depressive symptoms, presenting 25.4% of patients moderate (13.5%) or severe symptoms 11.9%). We also found high levels of anxiety (59.5% had level of SA and 49.2% of TA in the percentile range 75–99). In studies in which self-applied scales are used to assess anxiety and depression in women with CPP, high percentage of anxiety and depressive symptoms were found %. We als,56,57,58.6% had dIt is known that depression is a risk factor for developing chronic pain and that chronic pain favors the development of depression ,63. SimiIt is also important to note the correlation between the STAI-SA, STAI-TA and the BDI with the CPAQ questionnaire. This correlation was not clinically significant , but it is striking that most of the correlation is explained by the activity engagement  subscale and not by pain willingness . It would be important to study this difference in depth. The CPAQ questionnaire has been used in previous studies of chronic pain ,65. HoweRegarding personality traits, we found high mean levels of neuroticism, low extraversion and low conscientiousness in the NEO-FFI scale. Similar results were found on one paper that compared urologic chronic pelvic pain syndromes (UCPPS), other non-urologic chronic overlapping pain conditions (COPCs) and healthy controls (HC) in a mixed sample of males and females. They found that UCPPS and COPC participants reported higher neuroticism and lower extraversion than HC individuals, with medium effects sizes . They alp = 0.65) in our study. No other relevant and significant correlations were found between personality traits and depression, anxiety, catastrophizing or illness acceptance. They are studies that have found that neuroticism may contribute to greater catastrophizing about pain [p = 0.3783). Other descriptive studies in various chronic types of pain have found also high levels of neuroticism compared to control groups [With respect to the correlation between personality traits and other variables, we only found a significant and relevant positive correlation between the variable Neuroticism and trait anxiety . The catastrophizing scale (PCS) ranges from 0 to 52 points, low punctuations being scarce catastrophizing and high punctuations elevated catastrophizing. In a previous study that analyzed pain catastrophizing in women with CPP, they found that 60 of 113 participants had a clinically relevant total score ≥ 30 in PCS . In a meIn light of our results and those of other studies in both women and men with CPP in which high catastrophizing is found, it would be important to include as part of the treatment psychotherapeutic strategies that could diminish catastrophizing in these patients.The results obtained in pain acceptance (CPAQ) were similar to those found in fibromyalgia, with most of punctuations being below half of the maximum possible to obtained either in each subscale or in the total score. These results can be interpreted as low acceptance of pain. Pain acceptance is often a predictor of outcomes including quality of life among people with chronic pain attending pain clinics  and amonIn summary, in addition to results similar to other studies in terms of anxiety, depression, catastrophism or neuroticism, we have found a specific personality profile and a low acceptance of pain not previously described in CPP.In light of the results of our study and taking into account the multiple factors that influence CPP , it becomes important to perform a complete psychological evaluation of patients in order to individualize and establish the best treatment for each patient. It is also important to consider what would be the better focus of treatment depending on the clinical state and how each patient is coping with illness. Given the importance of depression and anxiety in CPP, it should be a priority to determine whether patients need coadjutant psychopharmacological treatment for anxiety and/or depression as well as other specific treatments such as those for traumatic events in patients with a history of abuse, for substance abuse, etc. For this reason, in our program we offer patients a complete evaluation prior to psychotherapeutic group therapy in which we combine elements of cognitive-behavioral therapy, acceptance and commitment therapy and mindfulness. Through this technique, we intend to work through catastrophizing, illness acceptance, engagement in activities and management of anxiety in order to help to improve outcomes in patients with CPP. It would be interesting for future research to replicate our findings and include the pain diagnosis of patients in order to determine if different clusters of patients have different psychological characteristics. As previously mentioned, it would also be interesting to study the relation between the personality profile and the rest of the variables, including the coping with pain. Finally, it would be interesting if future research would study the usefulness of the group psychotherapeutic intervention for CPP.The main limitations of our study are the small sample size and the lack of some of the data. This can lead to variations in the estimated frequencies of different variables. The unstructured interview may introduce an interrater variability as well as data loss that can introduce bias in the clinical diagnosis and loss of data. Pain diagnosis and other comorbid pain conditions should be registered for more complete information of patients. This study began with a clinical purpose, and we progressively adapted some of the questionnaires to our experience with patients with CPP until the approved protocol was developed. Because of this, there is a difference between the sample sizes of different scales, and it is difficult to carry out more complex statistical analyses. Our main objective was to describe the sample available to us. However, in the future, it would be important to have a larger sample size and a control group. This would allow us to investigate the relationships that the different variables described have with each other and with the CPP. Our study finds a personality profile and low pain acceptance not described previously in CPP. It also confirms data found in previous studies in which patients with CPP have higher levels of anxiety, depression, high neuroticism and high catastrophizing. Taking into account the importance of all these factors in outcomes in CPP, it is important to offer patients multidisciplinary treatment strategies that include a psychotherapeutic integrative approach that could help patients to manage and improve all the aspects mentioned.


Opioids have been commonly used to treat chronic pain, but they are associated with significant morbidity and mortality. Cannabis has been advocated as an alternative; however, a growing number of patients are now using a combination of opioid and cannabis and the impact of this combination is not well-studied.We characterized use of opioid and/or cannabis in patients with chronic pain; and compared utilization of healthcare resources.We conducted a cross-sectional study to determine if measures of physical, psychological and social functioning differed among patients according to whether they used opioids and/or cannabis. We used our learning healthcare system – CHOIR – to capture NIH Patient Reported Outcomes Measure Information System surveys, and legacy pain and treatment specific questions.Patients who report use of opioid and/or cannabis experience higher levels of physical, psychological and social distress. After adjusting for inversed weight of propensity scores, they have higher odds of visiting an emergency room, staying overnight at the hospital, and visiting a physician.Our results show that use of opioid and/or cannabis is associated with worse baseline characteristics and outcomes. Our study however cannot determine if worse outcomes are due to the opioids and/or cannabis or simply that these patients are worse off before using opioids and/or cannabis. Thus, it is important to characterize the trajectory of these patients in a prospective longitudinal study. Based on institutional review board (IRB) recommendations, our study was exempt from obtaining informed consent. Stanford IRB evaluates each human subject study following a checklist to determine exemption from obtaining informed consent. Our research was exempt because it met the criteria for: “Chart review studies that only involve the use of data, documents, records”.http://choir.stanford.edu) since 2012. This LHS includes National Institute of Health Patient Reported Outcomes Measurement Information System (PROMIS) , Collaborative Health Outcomes Information Registry   item ban(PROMIS) –42 howevWe included the initial visit for all patients with chronic pain referring to Stanford Pain Management Center who had completed the CHOIR initial survey with cannabis survey. We retrieved 15,182 initial surveys between 2012 and 2018 of which 8,869 (59.4%) patients had completed a cannabis survey.We then divided the patients into four groups based on their responses to questions about opiod and cannabis: (1) patient who deny use of opioid and cannabis (reference group); (2) patients who report use of cannabis only; (3) patients who report use of opioid only; and (4) patients who report use of cannabis and opioid .Demographic variables include patients' gender, race/ethnicity, employment status, marital status, disability status, and healthcare utilization .http://www.healthmeasures.net. The PROMIS measures are scored on a T-score metric with a mean of 50 and a standard deviation of 10. The mean of 50 is calibrated to either the mean of a United States reference sample that matched the 2,000 General Census sample with respect to age, sex, race/ethnicity, and education or to a clinically relevant population  using a modified PROMIS Pain Intensity scale. Respondents were asked to rate their average pain intensity over the previous 7 days on a scale of 0–10.The Pain Catastrophizing Scale (PCS) is a 13-item questionnaire that assesses distress regarding the cognition and emotion associated with actual or anticipated pain . The PCSOpioid and cannabis use was self-reported by patients in their CHOIR surveys. CHOIR surveys directly ask if the patients are currently using opioids and cannabis. The patients who responded to both these questions were included in the study. CHOIR initial surveys always included questions about opioid use while cannabis use questions were added later in 2015.We tested the hypotheses that:Hypothesis 1. Patients with chronic pain who report use of opioids and/or cannabis (as compared to those not using opioids or cannabis) have worse scores for pain intensity, pain interference, pain behavior, physical function, sleep disturbance, depression, anxiety, fatigue, and social isolation.The estimations were by multinomial logistic regression with generalized logit link for categorical variables and by generalized linear model for continuous variables with Bonferroni correction.Hypothesis 2. Patients with chronic pain who report use of opioids and/or cannabis have higher healthcare utilization, as compared to those not using opioids or cannabis.The group differences were estimated by using negative binomial models with log link on emergency room visit, hospital stay and physician visit. Because the study used observational data, propensity weighting was used to control for differences on measured covariates between the groups. Models were weighted by the stabilized inverse probability of receiving the treatment that the patient actually received. Covariates used for propensity adjustment included age, gender, race, ethnicity, body map widespread pain, PROMIS measures, physical and psychological comorbidities. To minimize the influence of extreme outlier weights, the stabilized weights were truncated to 10 if the stabilized weight is greater than 10 –52. All We retrieved 15,182 initial surveys between 2012 and 2018 of which 8,869 (58.4%) patients had answered to using or not using opioid and/or cannabis. We compared the patients who have and have not completed cannabis questions. The baseline characteristics  and healthcare utilization indices  were similar between these groups . HoweverWe observed a similar pattern in models weighted by inversed propensity scores . Compariα = 0.05 for overnight hospital stay in patients who reported use of cannabis only.The patients with chronic pain who reported use of opioid and/or cannabis also reported higher use of healthcare resources as summarized in Our results highlight that patients who report use of opioid and/or cannabis experience higher level of pain intensity and pain catastrophizing; their pain interferes more with their life and causes more pain related behavior. These patients are more fatigued, depressed, anxious and angry; they have poorer sleep and are not as satisfied with their social roles and activities. Moreover, they utilize higher level of healthcare resources.Significant implications of opioid crisis and deaths caused by opioid related overdose have encouraged pain specialists to look for better alternatives. Some have advocated use of cannabis as a substitute relying on population-based studies showing decrease in fatalities related to opioids in states where cannabis was legalized –15; howeA few studies have evaluated patients who use a combination of opioids and cannabis. These studies reported higher incidence of depression, anxiety, tobacco use, and history of opioid abuse/misuse in patients with chronic pain –55. Thes. reported that use of cannabis in patients with chronic opioid use can result in successful weaning of opioids. However, their sample size was relatively small (37 cases and 29 controls)  . These r program .We also found out that use of a combination of opioid and cannabis is associated with higher incidence of visiting emergency room, staying overnight at the hospital and also more physician visits . Patients with chronic pain who reported using opioid or a combination of opioid and cannabis similarly reported higher incidence of visiting emergency room or staying overnight in the hospital. A similar trend  was also observed in patients who reported use of cannabis. These findings suggest that use of opioid is a more important risk factor than cannabis for visiting emergency room or requiring an overnight stay in the hospital. For physician visits, patients who used opioids or cannabis had a similarly increased number of physician visits, while those who used a combination of opioid and cannabis had a larger number of physician visits, suggesting that the combination plays an important role than either substance by itself. It is important to emphasize that the observed odds ratios are statistically significant but only modest.Our data represents a large number of patients  even though less than 10% of them reported using a combination of opioid and cannabis. This large number of study subjects gave us the ability to study multiple independent variables in multiple groups. It also provided appropriate power to adjust for all these variables when assessing the health care utilization consequences of using a combination of opioid and cannabis. However, the nature of our data does not allow to make a distinction between effects of opioid or cannabis in the patients who reported use of both.The other strength of our study is use of comprehensive array of patient-reported outcomes across multiple domains of physical, psychological and social functioning. Pain is an “experience” based on the definition by International Association for Study of Pain (IASP) . To bettFirst, we performed a retrospective cross-sectional study. We cannot make any causal inferences or even assess the temporality of associations found. This study is an initial exploratory study, and our data cannot show if differences between the groups are secondary to use of opioids and/or cannabinoids. Second, opioid and cannabis were recorded based on patients’ self-report. Considering the social sensitivity of reporting about these two substances, we expect some degree of under-reporting by the patients. Third, there were two sources of missing data: (1) patients who do not complete CHOIR surveys; and (2) patient who skip the sections about cannabis use or were not offered this questionnaire . We expect the patients who completed CHOIR surveys to be different from the patient who did not; however, we do not expect this issue to affect the internal validity of our findings but could potentially affect the generalizability of our findings. The patients who did not complete the cannabis survey  were similar to the patients in our analysis in baseline demographics  and healthcare utilization indices (data not shown), but they did have higher pain intensity and worse PROMIS measures at baseline. Given these differences, we can consider two extreme scenarios and the effects they would have on our conclusions: (1) Majority of patients with missing cannabis questionnaire do not use opioid and/or cannabis. If this were this case, we expect that having excluded these patients from our sample would have decreased the magnitude of difference in all comparisons done in aim one or make them statistically non-significant. (2) Majority of patients with missing cannabis questionnaire use opioid and/or cannabis. If this were the case, we expect that having excluded these patients would have increased the magnitude of difference in all comparisons done in aim one. This is a more plausible scenario in our opinion because patients tend to withhold sensitive information. However, since the baseline measures for these patients were similar to the patients included, we do not believe this tendency would create a differential effect. Fourth, the results present a population of patients with chronic pain from a single tertiary referral pain clinic; thus, further limiting generalizability of results to all patients with chronic pain.Clearly, our study has certain limitations. Our current study sought to better characterize patients with chronic who report using opioids and/or cannabis. We found that use of opioid and/or cannabis is associated with worse physical, psychological and social outcomes and higher healthcare utilization. However, it is important to characterize the trajectory of these patients in a prospective longitudinal study to better understand the causal relationships and identify important mediators and moderators. We can use this information to (1) target interventions aimed at improving the quality of life in those who suffer from chronic pain and (2) informing society of the true effects of opioids and/or cannabis on chronic pain.