Guest post by Isabel Dunmore
I’ve had far more internal scans than I care to count. Living with endometriosis and polycystic ovary syndrome (PCOS), I’ve had years of intrusive investigations that never led to any answers – other than being made to feel it was “just a bad period”, it “could be IBS”, or that it was “all in my head” – before finally getting my diagnosis in February 2020. Even then, it was almost by accident.
After three and a half years of actively trying to seek help, explaining my symptoms and history to multiple doctors, and going for all kinds of tests and scans, I had given up. I gave up on finding out why I was bent over in pain all the time, why I had long, heavy and erratic periods, why at times I’d lost control of my bowels, felt like I could pass out from fatigue and heavy blood loss, or why my body let me down for days, after nights spent curled up with pain.
It’s a pain that I can only describe as feeling like a python wrapping itself around me and squeezing until I can’t breathe – while, inside, my body rips itself apart. Nothing would alleviate it. Not painkillers, heat, or sweet nothings from my partner, who felt as helpless as me.
The final doctor I saw, when I paid to go private in a last bid for help, said it might get better when I have a baby… but he couldn’t give me any answers. I was 25, in need of help, and upset by the suggestion he so casually made with no evidence to back up what he was saying. Where did I go from here? No tests to date had found anything.
With that, I gave up on trying to seek help. I told myself maybe this is all in my head. Maybe this is what every woman goes through and my pain tolerance is just really low. It’s normal, right? So I carried on, managing as best I could, and accepting that some days I would be bedridden, unable to see my friends or enjoy going for a run and doing my usual activities. Some days I would drag myself out of bed to commute to work and sit in agony at my desk all day, forcing a smile. At that point I didn’t even know what endometriosis was.
Five years later, searing pain in my righthand side became unmanageable and I went to my GP, who told me to go to the urgent care walk-in centre, believing it was appendicitis. This was the second time this had happened to me in my lifetime – the first time they concluded it was a grumbling appendix.
I waited for hours at the urgent care centre, where they then thought it best for me to go to A&E for blood tests and further investigation. After being urine dips, an ultrasound scan, and being turned into a bruised pincushion because no nurse or doctor could find my veins, an ovarian cyst the size of a tennis ball revealed itself and needed to be surgically removed.
I was shocked and terrified. The doctor, who is probably the kindest one I’ve seen to date, made me finally realise it wasn’t all in my head. She told me she didn’t know how I’d been coping for so long and that I needed to slow down immediately until the surgery. She suspected I had endometriosis, and that this was an endometrioma, which had built up as a result of my heavy periods and my womb lining not leaving my body like it should. She explained that they may have to remove an ovary, as it was sitting on my right side – but that was the worst-case scenario. It was a lot to take in but I signed my ovary away, giving consent that I agreed if necessary. All those years of suffering; I wish this doctor had seen me back then. I tried not to cry.
I sat on an emergency waiting list for surgery for a week before I was lucky enough for them to be able to operate. It was just before Covid-19 happened, so I was lucky it went ahead. The last thing I remember the surgeon telling me, as they put me under, was not to worry. Her daughter had had this same operation and she was doing fine now. I am so grateful to all those people who put me at ease.
I woke up in a cold room feeling drowsy, and with leg spasms from the surgery. I then spent the night in agony once all the drugs had worn off. I waited anxiously until about 11am the next morning to find out how the surgery went. Had they removed an ovary? Was the cyst gone? Did I have endometriosis? When the doctor did his rounds, I found out the surgery was a success. The ovarian cyst had been removed, without losing my ovary, but he told me little else. Despite me asking if I had endometriosis, he couldn’t tell me as he didn’t do my surgery!
For weeks, all I could do was concentrate on recovering from the surgery. It broke me – the pain was awful and I kept getting infections in my belly button, but I knew this time I couldn’t give up on finding an answer to what had caused the cyst and if it would happen again. When I had the strength I started follow-ups at my GP, and asked my doctor if she’d had my discharge notes through from hospital. “Yes,” she said, but it revealed nothing. There was no mention of endometriosis on there, just that a cyst was removed. She said she would call the hospital herself.
After weeks went by and I still hadn’t heard anything, I phoned back, only to be told she thought there was a miscommunication and there was definitely no endo. I felt gaslighted and I couldn’t believe nothing else was found during my surgery. So, undeterred this time, I followed up with the ward myself for answers. I’d come too far and there was no way I wanted to go under the knife again, to have another cyst removed because of a neglected diagnosis, if I could help it.
Low and behold, after several phone calls, a nurse dug out my actual surgery notes and confirmed the answer to all my years of pain and suffering. As well as my cyst being removed, endometriosis was found in my pouch of Douglas – a place I never knew existed. I fell to the floor and cried at the news because I felt validated and for once had an answer. That day meant so much to me. I could move forwards with finding a treatment, in the hope of getting my body under control and taking back charge of my life.
Ten months on and I still have the daily endo bloat, which makes me look pregnant. I’m still battling fatigue and crippling pain, which comes in waves whether it’s that time of the month or not. I still have constant spotting and bleeding from trying different hormonal pills and treatments to manage my pain. I’m still struggling to live with endometriosis and what it might mean for my future hopes and dreams.
I also found out I have PCOS during several more follow-ups and virtual calls with my GP. But if there’s one thing I hope can gain from reading this can glean, if you’re sitting in the same shoes I was in seven and a half years ago, it’s to know that what you’re going through is not normal, it’s not in your head, and you deserve answers and help. Don’t give up on seeking answers.
For more information and support with endometriosis, check out Endometriosis UK.