Endometriosis Month | Chloe Bailey - Personal Perspective

Diagnosis (misdiagnosis)

“Over fours year I was dismissed and misdiagnosed ovarian cysts, pelvic inflammatory disease, IBS, and even infertility.”

I first knew something wasn’t right at 15 or 16 years old. I experienced intense pain which I initially dismissed as period cramps or growing pains. However, the symptoms intensified and at its peak, I would collapse or be unable to move from my bed. I relied on painkillers, no one fully understood what was happening to me and I told myself it was just part growing up. It wasn’t.

The diagnostic journey took five years. Over fours year I was dismissed and misdiagnosed ovarian cysts, pelvic inflammatory disease, IBS, and even infertility. I underwent treatments for conditions I didn’t have, each one a false hope. Meanwhile, the pain controlled my life. I collapsed in agony, missed school, university, life. It drained me physically and mentally.

Eventually my father’s work-provided Bupa package allowed me to seek private healthcare and I got the MRI scan I needed. I was diagnosed with Stage 4 Endometriosis and due to its severity, having grown inside me for 4 years, I needed urgent surgery.

When I finally received a diagnosis, I felt a mixture of emotions- relief, anger, exhaustion. Finally, my suffering had a name. But why had it taken so long? How much damage could have been prevented if someone had listened? After years of pain and being passed between doctors, I was finally being heard.

Treatment

“Treatments for endometriosis are a short-term fix for some women - what works for one person may not work for another.”

Endometriosis treatment is highly individualised—what works for one person may not work for another. My surgery successfully removed some of the endometriosis, but not all of it. Additionally, I was prescribed a different form of contraception to help regulate my hormones and reduce period pain. However, due to the severity of my condition, the likelihood of requiring another surgery remains high.

Treatments for endometriosis are a short-term fix for some women and unfortunately that is the case for me, so I have been exploring additional ways to manage my pain. Heat therapy, such as endometriosis heat patches, hot water bottles, and baths, have been incredibly helpful. Adjusting my diet by avoiding heavy foods that cause bloating, as well as limiting caffeine and alcohol intake, has also made a difference. Prioritising rest and sleep when the pain is at its worst helps my body recover.

Living with endometriosis

Living with endometriosis is a daily challenge. It affects my emotions, sleep, and overall well-being. I still rely on strong painkillers, which come with their own side effects, and I frequently attend medical appointments. The fear of the condition worsening or returning is always at the back of my mind.

Managing my condition at work is particularly difficult. The pain can flare up unexpectedly, making it hard to focus and remain professional. I have had to make adjustments, such as wearing loose clothing to avoid pressure on my stomach, timing my painkillers carefully, and taking short walks during lunch breaks to help alleviate discomfort. Some days, I opt for public transport instead of walking to avoid exhaustion and further pain.

Socially, I’ve had to make sacrifices. Many times, I’ve had to cancel plans with friends and family due to flare-ups. While exercise can be beneficial for endometriosis, I often find myself unable to engage in physical activity because of the pain.

“Support from my family and friends has been invaluable.”

Support from my family and friends has been invaluable. Initially, my symptoms were dismissed as normal period pains, but as my condition worsened, they became just as frustrated as I was with the lack of medical recognition. My gynaecologist in Manchester was very supportive, and speaking with a therapist has helped me manage the emotional toll of living with chronic pain. Therapy put my mind at ease and meant I was able to find coping mechanisms for dealing with pain.

The Future

Although awareness of endometriosis has been increasing—partly due to celebrities sharing their experiences—there is still a long way to go. Despite affecting 1 in 10 women, endometriosis remains widely misunderstood. Many people, including healthcare professionals, fail to take it seriously because symptoms are often mistaken for normal period pain. Additionally, there is no clear correlation between the amount of endometriosis tissue and the severity of pain, making diagnosis even more complex.

“Despite affecting 1 in 10 women, endometriosis remains widely misunderstood. Many people, including healthcare professionals, fail to take it seriously because symptoms are often mistaken for normal period pain.”

I hope to see improvements in endometriosis research and healthcare, particularly in the speed of diagnosis. Misdiagnosis is far too common, and more research is needed to distinguish endometriosis symptoms from other conditions. Offering MRI scans earlier and ensuring women’s pain is taken seriously would significantly reduce the time it takes for patients to receive the care they need.

For anyone newly diagnosed or as yet undiagnosed, my biggest advice is to advocate for yourself. Push for referrals, seek second (or third) opinions, and request specialist care. It can be exhausting, but it’s essential to ensure you receive the right diagnosis and treatment. Prioritising your health is crucial—take breaks when needed, rest when the pain is overwhelming, and educate yourself using reliable sources like Endometriosis UK.

Finally, speak with family, friends, colleagues/your manager and if you have one already a therapist or GP. Living with pain and a long-term condition is hard and you need to be able to speak to the people who are around you so they can understand the affects and what you are going through and support you in the best way possible!

To find out more about endometriosis visit Ending endometriosis starts by saying it | Endometriosis UK