Endometriosis is a painful condition in which tissue similar to the lining of the uterus grows outside the uterus. While it most commonly affects the pelvis, it can develop in other areas of the body, leading to a range of symptoms and complications. Here is my journey. Sadly, 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 right 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 try to finish it in one go.
But as I walked up the 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? Had something 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 (at least I had a good book!)
The doctors checked my appendix and gave me pregnancy tests. When they were satisfied that neither was the cause, they told me to come back 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 a burst ovarian cyst—nothing to worry about—and referred me for a scan to check for polycystic ovarian syndrome. That came back negative too.
Cyclical Pain
The pain persisted for a few weeks, lining up with my periods, until I resumed the contraceptive pill. I'd 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 sent me to the hospital. At the time, I had no idea that being on the pill or using the implant had been 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 taught us about periods warned us they could be painful, and all my closest female friends seemed to struggle too, so I assumed it was normal. As I moved into my later teens, things got worse. I'd lose at least half a day each month when I simply couldn’t get out of bed. Even when I was up and about, it was hard to concentrate on anything.
I visited a female GP and explained that my periods were very painful and came with clots. She reassured me that periods can 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. But I started noticing other issues that I didn’t realise were related. I began developing food intolerances, and sometimes my bloating got so bad that my whole abdomen became swollen, huge and uncomfortable. At first, I thought I was gluten intolerant; then I wondered if it might be IBS. It would flare up every few weeks and then settle again, so I kept blaming it on whatever I’d eaten.
In 2021, I ended up in hospital several times, and I don’t think I could count all the GP visits on my fingers and toes combined! Over the space of a month or two, my symptoms got much worse—occasional flare-ups turned into constant 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, still in pain and worried they’d missed something, I went back. They insisted I must be pregnant for my belly to be that big and gave me about five pregnancy tests! My bloods were normal, I wasn’t pregnant, and they told me it must be IBS.
When I went back for a third time that week, they finally admitted me to rule out some gynaecological conditions. I explained to the gynaecologist that my whole abdomen and pelvis were really tender from the swelling, and that the pain was spreading into my lower back. I politely asked him to please be gentle during the exam, as I was scared it would make the pain worse. He was very rude. He sighed loudly and said he was extremely busy with many patients, then rushed through the exam, not caring that he was being rough. As I sobbed from the pain, he said that an examination shouldn’t be that painful—making me feel like it was my fault. Looking back, I wish I’d filed a formal complaint. But at the time, I was so worn down by the pain and lack of answers, I just didn’t have the energy or enough fight left in me.
The next day, I had an ultrasound scan, which cleared me of any gynaecological conditions - based on the fact that my uterus and ovaries looked normal and healthy.
An IBS Diagnosis and Ongoing Struggles
From there, I had multiple GP visits. Since it wasn’t a gynaecological issue, they started testing me for gastrointestinal problems. After ruling out anything serious, I was officially diagnosed with IBS. While it gave me some kind of answer, I still couldn’t get on top of my symptoms. Sometimes my belly would be huge for days, even weeks. I often had to wear my boyfriend Paul’s t-shirts, and even basic things like walking, bending down, or getting in and out of the car became difficult. Living in constant pain is exhausting - it wears you down. And when you’re not getting answers or the help you need, it’s even harder.
Trying to advocate for yourself is tough at the best of times, but in 2021, it was even worse. Many lockdown rules were still in place, so I couldn’t take anyone with me to appointments for support. I kept going back, convinced something was being missed, but I was often met with dismissive comments like, “I’ve already told you—it’s just IBS. There’s nothing more we can do.” One doctor told me, “It’s nothing to worry about; everyone gets bloated from time to time.” Another offered me antidepressants, and one even suggested I might just be remembering a time when I was slimmer and had simply put on weight.
It was exhausting. I was genuinely worried something serious was going on, but I started to feel like a time-waster. Even when my blood tests showed raised inflammatory markers, they’d just be repeated until the results came back in range. Eventually, after so many appointments, I was referred for a colonoscopy - but that came back clear too. Nothing showed up.
Limbo
A colonoscopy involves having a camera inserted into the bowel to check the inside. It’s meant to be only mildly uncomfortable. But mine was excruciating - I was screaming, crying, and shaking. The doctors couldn’t understand why it hurt so much because the inside of my bowel looked completely normal. No one thought about what might be happening outside my bowel. The gastrointestinal team discharged me, saying it must be a gynaecological issue. But the gynaecologist had already cleared me and said it must be something gastrointestinal. I was stuck in limbo.
I did everything I could to manage my “IBS.” I followed a low FODMAP diet with a dietitian, figured out my food intolerances, took prebiotics, tracked my fibre intake, practiced daily gut-directed hypnotherapy, and used diaphragmatic breathing to reduce stress. For a while, these things helped. But by early 2024, my symptoms were worse than ever. The problem with being misdiagnosed is that you stop looking for other answers. It wastes time, and while you're trying to manage the wrong thing, your real condition gets worse.
A Constant State of Discomfort
I was no longer dealing with flare-ups - I was in a constant state of discomfort. If I was lucky, I’d get two days a month of milder pain. I often felt like I had a urinary tract infection, but the tests always came back negative. My IBS was at its worst. I wasn’t sleeping, and when I did, I’d wake up in agony with violent cramps that contorted my whole body. The pain would wake me several times a night, sometimes so intense I couldn’t stand and had to crawl to the bathroom. I’d sit there in tears, unable to go because it hurt too much. I’m not weak, and I’m definitely not a wimp—endometriosis is just that brutal.
I was battling fatigue on two fronts: the kind that comes with endo, and the kind that comes from terrible sleep. Add to that the nausea, back pain, hip pain, and the constant assumption that I must be pregnant. Kind strangers would offer me their seat on the tube - it was easier to smile and say thank you than explain. The worst was when someone I knew congratulated me on my “bump.” How do you even begin to explain? All my tests were normal. Supposedly, I was healthy. Just a touch of IBS.
Based on what he’s seen, Paul likens the pain of a severe endo flare to being kicked hard in the balls - over and over. It’s instant, crippling agony that shoots through your body and wraps around your back. You’re doubled over, struggling to stand, your face drained of colour. The pain doesn’t fade. It just keeps coming in waves. Nausea crashes in, making it hard to breathe, let alone think. Endometriosis is ranked among the most painful conditions. Many sufferers say that even childbirth doesn’t compare to their worst flares.
A Turning Point
One day at work, I had a face-to-face appointment with my client Jo, whom I normally coach remotely. I felt embarrassed about my swollen belly and mentioned that my IBS was flaring up. I often feel self-conscious about it - I’m someone who trains hard, takes care of my body, and typically has a flat tummy. A big, round belly isn’t exactly ideal for a personal trainer.
Jo asked a few questions, then said, “I think you have endometriosis on your bowel. This doesn’t sound like just IBS. You need to find a specialist.” I was stunned. I’d been told “It won’t be endometriosis” at least twice by doctors. That’s when I learned that endometriosis doesn’t always show up on scans - especially when they’re only checking 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 explore treatment options. I paid to see a specialist who, based on my symptoms, strongly suspected endometriosis. He recommended injections to temporarily shut down my ovaries and induce a menopause-like state to manage the disease. I wasn’t keen. He admitted it was only a short-term fix due to potential risks to bone health - and I could end up dealing with menopause and endo symptoms at the same time. That wasn’t a risk I wanted to take, especially in the absence of a confirmed diagnosis.
I told my GP, “I think I have endometriosis.” He referred me for yet another scan, which again came back clear, and I was added to an extremely long waitlist just to speak to a gynaecologist.
But I’d had enough. I did my own research, took advice from women in the forum, and found the specialist I wanted to work with: Tom Holland (not the Spiderman actor!). I was done waiting. Some days, I couldn’t even drive due to the pain and nausea. I relied on anti-sickness tablets, multiple painkillers, a hot water bottle, and a TENS machine and yet none of it was enough. After 24 years of symptoms, including 8 years where the pain was bad enough to land me in hospital - I finally had hope. And I wasn’t going to wait any longer.
Tom was amazing. During our phone consultation, he agreed I had all the classic signs of endometriosis. Less than 48 hours later, I met him in London for a scan. Only a small number of UK specialists are trained to detect endometriosis via ultrasound. They use a technique called the sliding sign, which checks how freely your pelvic organs move - an important way to spot endo. Unlike most scans, this one examined all pelvic organs, not just the reproductive ones.
To my surprise, the scan didn’t show anything either. Tom explained that if endometriosis is stage 1 or stage 2, it only appears on scans about 50% of the time. Still, based on my symptoms, he believed it was likely. He recommended surgery - the gold standard for diagnosis and treatment. If he found endometriosis, he’d remove it. If not, we could rule it out. I took out a loan and booked the surgery.
The Weekend Before Surgery
Paul and I spent the weekend before my surgery in London, trying to take my mind off things. But my symptoms were severe. We went to the theatre, but I could barely concentrate through 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 bad cramp doubled me over. The pain was so intense I thought I might be sick. What should have been a short walk, (a quarter of a mile), took over half an hour. I could only manage a few steps before needing to stop and rest.
Maybe it was the anxiety about surgery: the risks, the recovery time, the financial stress of such a large loan, but that night, doubt crept in. I found myself questioning everything. What if he didn’t find anything? What if it really was all in my head? Years of clear scans and medical gaslighting had worn me down. I turned to Paul and asked, “What if I’ve just imagined it all?” Thankfully, he brought me back to reality: “Cat, you’ve got actual physical symptoms, and two specialists think you have it. Of course you haven’t imagined it.”
Answers: Finally!
When I woke up from surgery, Tom Holland told me my endometriosis was extensive and deep. It was located on my left pelvic sidewall beneath my ovary, on the surface of my bladder, (which explained the urinary tract infection symptoms), and to the front, left and right of my bowel, likely contributing to my "IBS" symptoms. During the three-hour surgery, multiple pieces of tissue were excised, the largest measuring 9.5cm in length! I felt an overwhelming sense of relief to finally have an answer.
Recovery has been long and challenging, with some bumps along the way. Excision surgery is highly effective but requires significant healing time. Initially, I was extremely sore: basic tasks like walking were exhausting, and I couldn’t do much physically. However, within a few weeks, I noticed my symptoms had improved 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 worried I’d gone through surgery for nothing, but Tom explained that COVID can trigger systemic inflammation. Being already vulnerable, this worsened any lingering post-surgery inflammation. This flare 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 symptom relief I experienced 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, then start hormone replacement therapy (HRT) to minimise the rate of tissue regrowth, though further surgeries may still be needed if it returns.
I hope that by sharing my experience, I can raise much-needed awareness and empower others in similar situations to find the strength to advocate for themselves and seek the answers they deserve.
Update. 1 Year On:
I'd love to be able to write something more positive here, but honesty is important. In the first few months after surgery, I experienced some much-needed relief. However, around 9 to 10 months post-op, my symptoms returned and were already severe enough to land me back in A&E multiple times. Interestingly, this second wave of symptoms has subtle differences from the first - last time, the pain was mostly on the left of my pelvis, or in the centre, but this time I’ve also had significant right-sided pain. Some of my worst symptoms from before have been slightly easier to manage, but others, like nausea and fatigue have become much more intense.
There are some advantages this time around. Now that I have an official diagnosis, doctors generally take my pain and symptoms more seriously, no more "just have a paracetamol" comments! Although, on the flip side, sometimes it feels like they attribute everything to endometriosis far too quickly. For example, when I went to A&E with new right-sided pain, I had to advocate strongly to have my appendix checked.
My NHS referral to a gynaecologist (the one I requested prior to my first surgery), FINALLY came through! I had to refuse the first three appointments because the doctors didn’t have a “special interest in endo” - the specific training needed to give proper advice and care. Though it meant a longer wait, it was worth it. My NHS endo doctor seems knowledgeable and supportive. Since I still have three years of loan repayments from my first surgery, NHS care is my only real option now. I’m currently booked for an MRI and will be added to the surgery waitlist once we get the results.
Ironically, I ended up on chemical menopause treatment anyway! It’s still early days to know if it’s helping, but I still think I did things in the right order. The side effects are pretty rough, so I wouldn’t be keen to put myself through this unless I thought there was a chance it would help.
I’ve also connected my long-term chest pain to the worst pelvic flares. With my heart cleared as healthy, I’m now undergoing investigations for possible thoracic endometriosis (endo in the chest cavity).
It’s a tough blow to be back in this situation so soon after surgery, but I’m staying positive. I have a lot of good people supporting me, and I’m continuously researching and advocating for the care I need. I suspect I’m in for a rough patch, but I’ll find a way through, and in the meantime, thank goodness for morphine!
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 symptom checker that generates a letter for your GP if you suspect you have endometriosis. The site also features a wealth of resources, including a nurse-led helpline and free monthly webinars with endometriosis specialists. You can access the entire back catalogue of these informative sessions on their YouTube channel.
“The Doctor Will See You Now: Recognising and Treating Endometriosis” by Tamer Seckin: This insightful book, written by an endometriosis excision specialist, provides a thorough yet accessible explanation of the condition and its treatment options.
Facebook Forum - “Endometriosis Guidance Information Resource UK (EndoRevisited)”: This supportive community is a great place to find honest reviews of different doctors and receive advice on navigating the healthcare system, including how to access your medical notes and understand treatment protocols.
