“So It’s Like a Painful Period?” Living with Endometriosis: My Journey

ABSTRACT

This essay details the author’s personal process of being diagnosed with endometriosis, including her experience of medical gaslighting and societal attitudes toward “period pain.” Many people who experience excessive menstrual pain report dismissive attitudes and/or trivialization of their symptoms, from both the public and health professionals. The author recalls conversations from throughout her diagnostic journey, which evidence the ingrained beliefs and attitudes of gendered observations of pain. Ultimately, the author contends that the “burden of proof” is with the patient, being forced to continually fight for their right to be heard in an archaic medical system. The people experiencing this condition are experts-by-experience, who are continually providing knowledge about endometriosis, and self-advocating to rewrite the societal narratives concerning menstrual pain. The goal of this essay is not to blame or cause discomfort, but rather to raise awareness and encourage everyone to talk more openly about menstrual related issues. The following prose is written as a first-person account of my experience with this condition, drawing on appropriate support from academic literature.

“I hate sport’s day” said my friend, “Why?” I asked, “It’s so much fun.” She whispered, “I’m on my period.” I enjoyed playing many sports, and naively thought that nothing could deter my passion and commitment to participating in sporting activities. That all changed when I woke one night in excruciating pain, bleeding heavily. I tried to continue playing sports and only had a period every few months, but soon they started getting more frequent, heavier, and painful. During menstruation I would experience bloating, nausea, diarrhea, cramps, dizziness, back pain, and throbbing in my legs that often ended with me laying on the floor. I tried every method recommended to minimize my pain; paracetamol, ibuprofen, hot-water bottles, heat patches, you name it, I tried it. I made many sacrifices, canceling plans with friends, playing less sport, making up excuses and apologizing for why I couldn’t go out, because I felt embarrassed. When I first started to talk about my pain and anxiety around excessive bleeding, I was met with negative or dismissive retorts (especially from men), including “I don’t need to hear about your ‘lady issues’.” Was I being silenced because they were uncomfortable? I wondered if their reaction would have been the same if I was talking about experiencing a migraine or a broken limb, for example. From reading around this topic, I found I was not alone in my experience (Cox et al., 2003; Rush & Misajon, 2018; Winfield, 2022). I felt isolated, not just in the house, but in my own body. I went to see my GP,¹ who’s first suggestion was the contraceptive pill.²

What is endometriosis?

Described as a widespread gynecological condition, it is estimated that endometriosis affects around 1 in 10 people with a uterus (Bullo, 2020). Tissue similar to the lining of the womb grows outside the uterus walls, resulting in severe pain predominantly in the pelvis, but can transcend to other parts of the body (World Health Organisation, 2023). The cause of endometriosis is unknown, and the condition has no known cure, thus is treated through symptom management. In rare cases the condition is asymptomatic, but common symptoms include chronic pelvic pain, painful and/or heavy periods, bowel/bladder issues and/or infertility problems (Rea et al., 2020; Viganò et al., 2004). The literature available concerning diagnosis for endometriosis highlights the common delays in the medical investigation of symptoms, taking an average of 8 years to diagnose (Endometriosis UK, n.d.). The effect of this enduring condition on an individual’s quality of life can be severe, including the continuous burden of explaining their symptoms to others (Denny, 2009; Rush & Misajon, 2018; Wright, 2019).

In an age of constant medical and technological advances, endometriosis remains a condition that is overlooked, ineffectively diagnosed, and improperly treated. There remains a narrative that painful menstruation is “just part of being a woman,” which stems from patriarchal influences, particularly in the medical field. This continues to act as a direct barrier to diagnosis and the ability to provide successful treatments (Hoffman & Tarzian, 2001; Krebs & Schoenbauer, 2020). Feminist movements have contributed to the rejection of the medicalization of women’s natural bodily experiences (Meyer, 2001; Ussher, 2010), and pathologizing the experiences of physical and mental health issues during menstruation. The author notes the existence of people outside of the gender binary, acknowledging that anyone with a uterus can experience menstruation, however, most research focuses on the experience of people who identify as female or women.

Stigma, gaslighting and shame

Part of the challenge for people living with endometriosis, is that they are tasked with the responsibility of being able to distinguish differences in their experience of menstruation from those of others (Fournier, 2002). Causing immense frustration, they may often have to convince medical professionals that their subjective experience merits further investigation (Bullo, 2020; Cox et al., 2003). A report by Endometriosis UK (n.d.) found that over 58% of people (eventually diagnosed with endometriosis) had visited their GP 10 or more times with symptoms before being referred to a specialist. Additional research suggested that the earlier the onset of the symptoms, the longer the delay in diagnosis and treatment (Ghai et al., 2020).

When I disclosed the symptoms that I was experiencing to close friends, most were supportive, and reassured me that my experience was not “normal.” However, it is important for me to share the gaslighting, stigmatizing and othering statements that I encountered. Despite the anguish some of these comments and behaviors caused me to feel, they did in-directly encourage me to advocate for myself and to seek further medical investigations. One study exploring narratives found that the experience of period pain was normalized by young women, their families, and medical professionals, and their validity of symptoms were repeatedly questioned by doctors (Markovic et al., 2008). Moreover, participants in a qualitative study reported conflicting and contradictory feelings when discussing their symptoms with medical professionals. Destructive elements were characterized by ignorance, exposure, and disbelief, while the constructive side conceded feelings of acknowledgment, and improved their self-esteem (Grundström et al., 2018).

From the age of about 17, I was met with suspicion and doubt from healthcare professionals, when I discussed my symptoms. I recall one encounter with a male GP, who rolled his eyes and questioned me to the point of interrogation without actually performing any physical examination or sending me for further tests. The questions included “Do you have a low pain threshold?,” “Have you tried pain relief or a bath?,” “Are you still able to complete daily activities?” and the particularly problematic, “Some women experience relief from the symptoms after pregnancy, have you thought about having children?” I explained that my menstrual bleeding would often render me unable leave the house, either because I was bleeding too heavy, vomiting, or feeling faint, or I was too anxious about bleeding through my clothes in public. I was told that some women experience heavy bleeding (menorrhagia) and irregular cycles and was offered the contraceptive pill and antidepressants.

In addition to the impact of gaslighting by medical professionals, I also had to deal with the trauma I was experiencing, linked to my sexual identity. As a queer woman who now identifies as asexual, the intrusive nature of some medical examinations caused me extreme anxiety and fear. One cervical examination resulted in me passing out due to the stress and pain. There is research available on the impact of endometriosis for heterosexual relationships (Norinho et al., 2020), but almost no research on LGBTQAI+ individuals or couples (except to comment on fertility issues) and minority groups such as asexual people within this community. Even though I had disclosed my asexuality and raised concerns, at no point during the process was I offered support or therapy to help manage my anxiety around gynecological procedures.

I later learnt that the excessive persistence of my male GP to perform these types of investigations was pointless, as endometriosis can only be diagnosed by undergoing a laparoscopy/laparotomy procedure (Leibson et al., 2004). An ultrasound scan in 2016 (6 years since I first reported my symptoms), identified a 4 cm “simple cyst” on my right ovary, which I was told would simply “resolve itself,” and I didn’t need further investigations, but I was offered hormonal treatment to manage my symptoms.

The contraceptive pill

“The pill” as it is commonly known has a primary function of preventing pregnancy, with a variety of options containing artificial forms of the female hormones: estrogen and progesterone (Baird & Glasier, 1993; Cooper et al., 2022). One concern that I, and others with gynecological issues have, is that of the effectiveness of a drug which was developed for the purpose of birth control, being used to manage symptoms of a condition like endometriosis. I want to preface this by saying that many people report a positive experience of the pill, when taken for contraceptive purposes, with some literature documenting women’s favorable perceptions and attitudes toward it, when supported by medical professionals (DeMaria et al., 2019). However, there is evidence suggesting that there are implications of this medication on brain functioning (Brønnick et al., 2020; Petersen et al., 2021) and mental health (Anderl et al., 2022; Stidham Hall et al., 2015).

For over a decade I have tried several different versions of the pill, all of which had varying side effects, but most notably the detrimental impact on my mental health. In my personal experience and through conversations with others, it was common for GPs to not acknowledge or explain the side effects to patients. In my case, I was advised to attend a sexual health clinic to discuss the side effects, despite being on this medication for reasons unrelated to sexual activity. One of the most notable side effects of the pill is depression, which is documented in academic literature (Kulkarni, 2007; Mu & Kulkarni, 2022; Odette et al., 2023). In relation to this, a survey found that 81% of women said endometriosis had negatively impacted their mental health, and 90% would have liked access to psychological support but it was not offered (Parazzini et al., 2013). It is important to note that depression is a multi-faceted condition and there is a lack of data available on how many people stop taking the pill because of mood changes (Bitzer, 2017). However, the pill is one of the most prevalently prescribed medications in Western society and there is evidence to suggest a range of mental health issues related to its consumption (Anderl et al., 2022). If this is the case, I question why people with endometriosis are being offered a treatment, with varying rates of success, but a major side effect being depression, which may further exacerbate the low mood caused by experiencing the condition itself.

Despite the side effects I had previously experienced, I felt I could not manage the persistent pain (dysmenorrhea) and heavy bleeding which was disrupting my life, so I took a prescription for the combined pill. Although there is limited research evidence for pain reduction (Wong et al., 2009), at this point, I was desperate. After 6 weeks on the pill I was nauseous, having irregular bleeding, and feeling extremely anxious, which continued for weeks. This progressed into extremely low mood, suicidal thoughts, and feelings that the body I was living in was not mine. I made the decision to stop taking the pill for my mental health and returned to my GP to push for further investigations regarding my pain, a female doctor reluctantly sent me for an MRI scan.

Laparoscopic surgery and reflections

Following an MRI scan in 2021, my results indicated suspected endometriosis and adenomyosis, with the cyst on my right ovary still being present. I was placed on the waiting list for surgery and informed the waiting times were approximately 36 weeks. Over a year later, there had been no further communication and my quality of life was being severely impacted, both by the condition and from ineffective treatment. I was no longer able to go to the gym, engage in prolonged physical activities and some days I was unable to stand due to the pain. As a university lecturer, I am often required to teach sessions for up to 3 hours at a time and need to be cognitively able to deliver high quality information. I had to abandon one teaching session after 45 minutes due to excruciating pain in my lower back and abdomen, and light-headedness. I could barely stand, let alone lecture, fainting when I returned to my office due to blood loss and pain. Blood tests revealed several areas for concern, most notably my iron saturation was 3% (normal range 25–50) and serum sat iron binding capacity was 91 (normal range 37–77). My GP sent an urgent letter to the hospital to expedite the laparoscopic surgery.

In early December 2022, I received a call for a pre-operation appointment to take place in two weeks’ time and the operation was scheduled for the end of the month. I felt a mixture of relief and anxiety, I’d waited years for this and now I didn’t feel like I had enough time to prepare myself physically or emotionally. On December 29 2022, I met the consultant who would be performing the operation, she reassured me that she had a lot of experience with this type of surgery and allowed me the opportunity to ask any questions.

Following surgery, it was confirmed I had stage 2 endometriosis, in conjunction with adenomyosis (a condition where endometrial tissue grows into the muscle walls of other organs). Excision of endometriosis from the right pelvic wall and Pouch of Douglas was performed, and a cyst which was attached to my right fallopian tube was removed during surgery. Sat in the hospital bed on my own, I felt so many emotions, including anger, relief, and emptiness. After years of waiting and feeling like no one believed me, I finally had my diagnosis. I stayed with my parents in the days following the surgery, not being able to do things for myself was frustrating, but I found that the pain post-surgery was nothing compared to the menstrual pain I had experienced.

My family meant well and were very supportive, but being repeatedly asked if I was okay, was exhausting. No, I wasn’t okay. Not only did I have the physical recovery to go through, but I was also coming to terms with these new diagnostic labels, in turn impacting my self-esteem and relationships (Strzempko Butt & Chesla, 2007). People were asking if I was “better” because I’d had the surgery, when in fact, I had been diagnosed with a chronic illness, with a 50% chance of the tissue re-growth in 5 years (Guo, 2009). I acknowledged the burden that this new label came with, including my anxieties about disclosing to my employer (Krsmanovic & Dean, 2022; Winfield, 2022). Even now, as I write this 6 months post-surgery, I am experiencing fatigue, irregular bleeding, pain in my pelvis and aches in my joints. I’m mindful that my body might need more time to heal from the physical trauma. However, I wonder how long, if ever, it will take for the psychological implications to subside. Recently, I have felt like 50% of my energy is taken up by both trying to manage/ignore the pain and with the anxiety about the pain/bleeding and associated symptoms.

Conclusions

Endometriosis does not happen in isolation and is a condition that feeds other physical and mental health problems. Healthcare professionals should make every effort to listen to patients’ stories and acknowledge that no two people with endometriosis will present the same. People with lived experience of this condition, whether they are officially diagnosed or not, know their own bodies and whether their experience is “normal.” I will not be responsible for other people’s discomfort when I talk about my menstrual issues. Endometriosis is as valid as any other health issue, and I should be allowed to talk about it without fearing stigma or shame. If you know someone with endometriosis, I encourage you to allow them the space to safely share their pain, ask how you can support them, and be mindful of their changeable mental and physical health. Finally, a message to those of you with suspected or diagnosed endometriosis, you are the experts of your condition, please continue to talk about your symptoms, and do not apologize for asking for help.

Acknowledgements

I wish to thank my family, friends, and colleagues who have been, and continue to be supportive and reassuring throughout this process.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes

1. GP refers to a General Practitioner (UK), a medical doctor based in the community. Their role is to treat patients with minor or chronic illnesses and refer those with serious conditions to a specialist (usually in a hospital setting).

2. The author is reflecting on treatment received in England under the National Health Service (NHS).