Written by Cat Trentham
Endometriosis is a painful condition where tissue similar to the lining of the uterus grows outside the uterus. While it most commonly affects the pelvis, it can develop anywhere in the body, leading to a range of symptoms and complications. Here is my journey; unfortunately, this experience is not uncommon and reflects a story that many others share.
The First Bad Flare-Up
I think every endometriosis sufferer remembers their first major flare-up. The kind that’s not just bad, but hospital bad. Mine hit on the 1st of August, 2016. I had been in the midnight queue at Waterstones—like all loyal Potterheads—for my copy of Harry Potter and the Cursed Child. I hadn’t felt quite myself that day, but the excitement of the release kept me distracted. As I stood in line, things got worse. Midnight came, I finally got my book and was excited to head home, stay up all night, and attempt to finish it in one go.
But as I walked up St. Peter’s Street, a sudden wave of pain bent me double, almost driving me to my knees. I screamed out, overwhelmed by the sharp, stabbing sensation tearing through my stomach. Had my appendix burst? Something had to have ruptured. The pain was all-consuming. All the colour drained from my mum’s face as she stood there, confused and scared. I could barely stand, and every step was a battle against the pain. I went to the hospital. The wait was long (but at least I had a good book!).
The doctors checked my appendix and gave me pregnancy tests. When they were satisfied that neither was causing the issue, they told me to return on Monday when the sexual health clinic was open to be tested for pelvic inflammatory disease. Everything was normal, so they advised me to see my GP. She suggested it was probably an ovarian cyst bursting—nothing to worry about—and referred me for a scan to check for polycystic ovarian syndrome, which also came back negative.
Cyclical Pain
The pain persisted for a few weeks, occurring in sync with my periods, until I resumed the contraceptive pill. I had taken a break while using an implant in my arm, which didn’t suit me, so I had it removed about five weeks before the flare-up that ultimately sent me to the hospital. At the time, I had no idea that being on the pill or having the implant was suppressing my endometriosis symptoms. As soon as I stopped using them, the symptoms became severe.
I’d always had painful periods, right from my very first one. The teacher who educated us about periods warned us they could be painful, and all my closest female friends seemed to struggle with period pain too, so I assumed it was normal. As I moved into my later teens, things worsened. I would lose at least half a day each month when I simply couldn’t get out of bed due to the pain, and even when I managed to be up and about, it was difficult to concentrate on anything. I visited a female GP and explained that my periods were very painful and accompanied by clots. She reassured me that periods could be painful and that this might just be normal for me. She prescribed some strong painkillers, but they didn’t even take the edge off, so she put me on the contraceptive pill, which did make things a bit better.
Escalating Symptoms
After the incident in 2016, things were fairly calm for a while. I was back on the pill, and my symptoms were more manageable. However, I started experiencing other symptoms that I didn’t realise were related. I began developing food intolerances, and there were times when bloating would become so severe that my whole abdomen was distended. At first, I thought I was gluten intolerant; then I wondered if it might be IBS. It would happen every few weeks but then quickly settle, and I attributed it to whatever I was eating.
In 2021, I ended up in the hospital several times, and I don’t think I could count all the GP visits on my fingers and toes combined! In the space of a month or two, my symptoms escalated from occasional flare-ups to chronic pain and bloating. My belly was enormous and rock-hard all the time. I remember going to A&E, where they told me it was just constipation and sent me away with laxatives. The next day, worried they’d missed something and still in a lot of pain, I returned. They insisted I must be pregnant for my belly to be that big and gave me about five pregnancy tests! They said my blood tests were normal, I wasn’t pregnant, and it must just be IBS.
When I went back for a third time that week, they finally admitted me, wanting to rule out some gynaecological conditions. I explained to the gynaecologist that my whole abdomen and pelvis were incredibly tender from the swelling and that the pain was radiating into my lower back. I politely asked him to please be gentle during the examination as I was worried about making the pain worse. He was very rude; he sighed loudly at my request, stating he was extremely busy with many patients, and then rushed through the exam, not caring that he was being rough. As I sobbed from the pain, he complained that an examination shouldn’t be that painful, making me feel like it was my fault. In hindsight, I should have filed a formal complaint, but at the time, I felt so broken from the constant pain and lack of answers—I just didn’t have enough fight left in me.
The next day, I had an ultrasound scan that cleared me of any gynaecological conditions, on the basis that my uterus and ovaries appeared normal and healthy.
An IBS Diagnosis and Ongoing Struggles
From there, it was a series of multiple GP visits. Since it wasn’t a gynaecological condition, they started testing me for gastrointestinal issues. After ruling out anything serious, they officially diagnosed me with IBS. While the diagnosis provided some clarity, I still couldn’t get on top of my symptoms. Sometimes my belly would be enormous for days, even weeks. I often had to wear my boyfriend Paul’s t-shirts, and even simple tasks like walking, bending down, or getting in and out of the car became a struggle. Living with this much pain all the time is exhausting—it wears you down. Coupling that with the frustration of not getting answers or the help you need makes it even harder.
Trying to advocate for yourself is incredibly difficult, especially in 2021 when many lockdown restrictions were still in place, meaning I couldn’t even take anyone with me to appointments for support. I kept returning, convinced that something had been missed, but I was often met with dismissive responses like, “I’ve already told you, it’s just IBS—there’s nothing more we can do for you.” One doctor told me, “It’s nothing to worry about; everyone gets bloated from time to time.” Another tried to prescribe me anti-depressants, while another suggested I might just be reminiscing about a time when I was slimmer and had simply gained some weight. It was exhausting. I was genuinely worried that something was seriously wrong, yet I felt like a time-waster whose symptoms were all in my head. Even when my blood tests showed raised inflammatory markers, the tests would just be repeated until the results came back within range. Eventually, it was impossible to ignore the number of appointments I’d had, and I was referred for a colonoscopy, which also came back clear and showed nothing.
Limbo
A colonoscopy involves having a camera inserted into the bowel to examine its interior. It’s supposed to be only mildly uncomfortable. However, mine was excruciating; I was screaming, crying, and shaking. The doctors couldn’t understand why it was so painful since the inside of my bowel appeared healthy. No one had considered what might be happening on the outside of my bowel. The gastrointestinal team discharged me, insisting it must be a gynaecological issue, while the gynaecologist had already cleared me and said it must be a gastrointestinal problem. I was in limbo.
I did everything I could to try to improve my “IBS.” I followed a low FODMAP diet with a dietitian, identified my food intolerances, took prebiotics, tracked my fibre intake, practiced daily gut-directed hypnotherapy, and focused on diaphragmatic breathing to reduce stress. For a while, it calmed things down, but by the beginning of 2024, my symptoms were worse than ever. The danger of misdiagnosis is that you stop looking for answers, which wastes time and allows your condition to worsen.
A Constant State of Discomfort
I was no longer experiencing flare-ups; I was in a permanent state of discomfort. If I was lucky, I might get two days a month of milder pain. I often felt like I had a urinary tract infection, but the tests for those came back negative too. My IBS was at an all-time low. I wasn’t sleeping, and when I did, I’d wake up in agony with excruciating cramps that would contort my body. The pain would often wake me several times a night, sometimes so intense that I couldn’t stand and had to crawl to the bathroom. Once there, I would sit in tears, unable to go because it hurt too much. I am not weak, and I’m certainly not a wimp - endometriosis just really is that brutal.
I was dealing with a double dose of fatigue—fatigue from the endo itself, and fatigue from such poor sleep—not to mention the nausea, back pain, hip pain, and the constant assumption that I was pregnant. Kind strangers would offer me their priority seat on the tube- it was easier to just smile and say thank you. The worst was when someone I knew congratulated me on my “bump,” and I had to explain the reality of my situation. But how do you even explain? All my tests were normal; I was supposedly healthy, just with a touch of IBS.
Based on his observations, Paul likens the pain of a severe endometriosis flare to being kicked hard in the balls over and over—instant, crippling agony that shoots through your body, wrapping around your back. You’re doubled over, struggling to stand as the colour drains from your face. The pain doesn’t fade, yet new waves of it keep coming through. Nausea floods in, making it hard to breathe, let alone think clearly. Endometriosis ranks among the most painful conditions, with many sufferers claiming that even childbirth pales in comparison to the agony of their worst flares.
A Turning Point
One day at work, I had an appointment with my client Jo, whom I coach remotely. This was the first time I had met her in person, and I felt embarrassed about my big belly, explaining that my IBS was flaring up. I often feel self-conscious about it—I identify as someone who trains hard, takes care of my body, and typically has a flat tummy. A big round belly isn’t the best look for a personal trainer!
After asking a few questions, Jo said, “I think you have endometriosis on your bowel; this does not sound like just IBS. You need to find a specialist.” I was taken aback. “Surely not? Wouldn’t it have shown up? I’ve seen so many doctors.” That’s when I learned that endometriosis doesn’t always show up on scans, especially if they’re only checking your reproductive organs.
Jo lent me some books and added me to an endometriosis forum on Facebook, where I could learn from other women’s experiences and navigate treatment options. I paid to see a specialist who, based on my symptoms, believed endometriosis was likely the cause. He recommended injections to temporarily shut down my ovaries and induce a menopause-like state to control my symptoms and slow disease progression. I wasn’t keen on this option. He explained it was only a short-term solution due to the potential harm it could cause to bone health. There was also a chance I’d end up battling both endometriosis and menopause symptoms at the same time. This was not for me.
I saw my GP and told him, “I think I have endometriosis.” He sent me for another scan, which also came back clear, and I was added to an extremely long waitlist just to speak with a gynaecologist about it.
Determined not to wait any longer, I did my research and took recommendations from the women on the endo forum and found the specialist I wanted to work with: Tom Holland (not the Spiderman actor!). I was determined to get treatment and answers. By this point, there were many days when I couldn’t even drive due to severe pain and nausea. I relied on anti-sickness tablets, multiple painkillers, a hot water bottle, and a TENS machine, but even these things combined still weren’t enough. I even had to stop rowing, which was heartbreaking given my passion for the sport—I was simply too uncomfortable to get into the right position. To adapt, I switched my training to skiing, which felt more manageable. After 24 years of struggling with symptoms, including 8 years where the episodes were bad enough to land me in the hospital, I finally had hope for an answer, and I wasn’t prepared to wait any longer.
Tom was amazing. During our phone consultation, he agreed that I exhibited all the classic symptoms of endometriosis. Less than 48 hours later, I met him in London for a scan. There are only a small number of specialists in the UK trained to detect endometriosis through ultrasound. They use a technique called the sliding sign, which assesses how freely the organs within your pelvis move to identify potential areas of endometriosis. Importantly, they check all pelvic organs, not just the reproductive ones.
I was surprised when this scan didn’t reveal anything either. Tom explained that if the endometriosis is superficial, it only shows up on a scan about 50% of the time. However, based on my symptoms, it was likely I had it. He recommended surgery: this is the gold standard for diagnosis and treatment. If he found endometriosis, he would remove it; if not, at least we could eliminate it as a possibility. I took out a loan and scheduled the surgery.
The Weekend Before Surgery
Paul and I spent the weekend before my surgery in London, trying to take my mind off things. My symptoms were severe. We went to the theatre, but I could barely concentrate due to the pain. On the way to the tube station, the cramps hit me hard. At one point, Paul had to drag me across the road as a cramp doubled me over. The pain was so intense that I worried I might be sick. The quarter-mile walk to the hotel took over half an hour because I could manage only a few steps before needing to rest.
Maybe it was the anxiety about the risks of surgery, the recovery time, or the financial stress of taking out such a large loan, but that night, doubts crept in. I found myself wondering if I had imagined it all. What if I went through with the surgery and he found nothing? Years of clear scans and doctors making me feel like I was overreacting had made me question my intense symptoms. I turned to Paul and asked, “What if I have just imagined it all?” Thankfully, he brought me back to reality: “Cat, you’ve got actual physical symptoms and 2 specialists think you have it. Of course, you haven’t imagined it.”
Answers: Finally!
When I woke up from surgery, Tom Holland told me that my endometriosis was quite extensive. It was located on my left pelvic sidewall, underneath my ovary, and on the surface of my bladder—no doubt causing the urinary tract infection symptoms. It was also present on both sides of my bowel and in the area behind my uterus, in front of my bowel, which was likely contributing to my IBS symptoms. During the three-hour surgery, multiple pieces of tissue were excised, the largest being 9.5cm in length! I felt an overwhelming sense of relief to finally have an answer!
Recovery from the surgery has been long and challenging, with some bumps along the way. The excision technique is highly effective but requires significant time to heal. Initially, I was extremely sore—basic tasks like walking were exhausting, and I couldn’t manage much physically. However, within just a few weeks, I could tell my endo symptoms had improved, reducing by about 85%. Unfortunately, that progress was short-lived. After catching COVID, my symptoms returned almost immediately. Though not as severe as before surgery, they were comparable to the flare-ups I had in 2021. I was worried I’d put myself through the surgery for nothing, but Tom explained that COVID can trigger systemic inflammation. Since I was already vulnerable, it worsened any lingering post-surgery inflammation. This flare has lasted about four weeks, but I finally feel like I’m coming out the other side. I’m hopeful I’ll soon return to the level of symptom relief I was experiencing before COVID.
While there’s no cure for endometriosis, removing the affected tissue can lead to much more manageable symptoms. I’ve been advised to stay on the contraceptive pill until menopause, and then to begin hormone replacement therapy (HRT) to minimise the rate of endometriosis tissue growing back, but may still require further surgeries to remove it if it returns.
I hope that by sharing my experience, I can raise some much-needed awareness and empower others in similar situations to find the strength to advocate for themselves and seek the answers they deserve.
Useful Resources
Tom Holland: A specialist in diagnostic trans-vaginal ultrasound and endometriosis excision laparoscopy, located at One Wellbeck and the Princess Grace Hospital in London. To schedule an appointment, you can contact his secretary at pa@tomhollandgynaecology.co.uk.
EndometriosisUK Website: This invaluable resource offers a 60-second sym