With the time to diagnose endometriosis taking an average of eight months and many reporting an uphill battle of being dismissed during the process, I wanted to share my somewhat unusual story of diagnosis in that it has been both a long journey and also incredibly quick. Most of all, I wanted to share my positive experiences of dealing with medical professionals, as I’ve heard plenty of horror stories in the last few years. While my early experiences in my teenage years weren’t great, since 2023, it’s been, on the whole, a very positive and easy route to diagnosis for me.
Early Dismissal – ‘It’s Just A Heavy Period’
When my periods began at age 11, it was clear very early on that they were not normal. I was regularly flooding and taking a week off school at a time because of the heavy flow. My feelings of shame came quickly as it didn’t take my classmates long to work out why I was off school so often. The bullying started; I became withdrawn, sheltered and didn’t know how to speak up for myself in any situation.
My mum took me to the doctor regarding my periods and the first stop was to try Tranexamic Acid to try and ease the flow, but it didn’t help in the slightest. I was diagnosed with menorrhagia (heavy periods), but no other help or support was offered. My mum would tell me how others in the family had also suffered with their periods, so I began to think that maybe this was just normal.
At school, they called me ghost face because I was so pale. I began being sent home from school, feeling dizzy and faint. The doctor dismissed these concerns, so I didn’t think it was worth mentioning again. Surely a doctor would investigate if they thought it was important? I struggled on, trying to keep up with school work despite my poor attendance, and I tried to be invisible as much as possible to avoid being bullied (but wasn’t very successful).
Five years after the onset of my period, at age 16/17, a doctor offered me the contraceptive pill. The prescription wasn’t even driven by my heavy periods or suffering, but mostly due by my age and the doctor’s perceived possibility that I might become sexually active. Regardless, I tried the pill, and it felt like a revelation. Suddenly, I wasn’t losing a week off school or college; I wasn’t flooding through my clothes or paranoid about leaving the house. For the first time in years, there was colour in my cheeks, and I could get on with living.
Stopping The Pill – A Return To Debilitating Periods
Increasingly frequent migraines meant I had to stop taking the pill in 2019. Having blotted the early years of my periods from my mind, I had no idea what to expect. Initially, my periods were manageable, although my skin broke out in horrendous acne. I told myself it was normal and I just needed to give it a few months to let my hormones settle.
However, as time went on, not only did the acne continue to get progressively worse, but my periods also became increasingly heavy and painful. I began flooding again and was afraid to leave the house. But no one had ever told me it wasn’t normal, so I thought it was just something I had to put up with. I soldiered on, suffering in silence, convincing myself that I needed six—no, twelve months—to let my body and hormones settle.
During that time, my husband and I decided to try to conceive, so the heaviness of my periods took a back seat as I focused on the hope that this month would be the month we got pregnant. After a couple of years of trying with no success, an unexpected miscarriage had me emotionally reeling. This, combined with my increasingly debilitating periods, sent my body into chaos. Eventually, my mum encouraged me to seek help because it was in no way ‘normal’. However, I still wasn’t convinced that it was worth asking about—I’d been brushed off before, couldn’t take the pill anymore and Tranexamic acid hadn’t worked, what else could anyone do?
Pain Flares and A&E Visits
On a Sunday morning in August 2023, I woke up at 4:30 am with the most excruciating low abdominal pain I’d ever experienced in my life. It felt like an 11/10 on the pain scale. I was in so much pain I couldn’t speak or move to let my husband know something was wrong. I lay there for hours until it was time to get up, when I somehow managed to crawl downstairs, where I curled up in a fetal position on the sofa. My husband had gone to work, leaving me alone with two dogs. I knew I had no hope of looking after them. It took all my energy and concentration to call the out-of-hours NHS service. I crawled around my house trying to get dressed and honestly, I’m not entirely sure how I drove my dogs over to my mum’s house.
At the out of hours appointment, my vitals were checked and I was told they wouldn’t admit me to hospital as I wasn’t vomiting. I was sent home and told to take co-codamol and contact my GP the next day. The day passed in a blur of pain.
The next day at my local medical centre, the doctor was concerned but said I didn’t look ‘ill’ enough for it to be appendicitis, but she was deeply concerned and ordered a full blood count and promptly sent me to A&E just in case. After many hours, I was sent home and told to return the next day for a full abdominal ultrasound.
After the ultrasound, doctors told me they thought I had a self-resolved ovarian torsion as all my organs looked normal. They discharged me with instructions to rest for several weeks and strong painkillers, so I spent most of August lying on the sofa, feeling mostly like death warmed up. I was incredibly sore and exhausted and having read about the seriousness of ovarian torsions, was feeling suitably terrified.
Just as I felt like I was beginning to recover, another episode of intense 11/10 sent me to A&E in September 2023. This time, gynaecology were called to see me and started asking me about my periods. That was the first time I’d heard the word endometriosis. I didn’t even know what it was, but they suspected I had it and told me to ask my GP for a high-priority referral to gynaecology. Given my recent history and blood test results (my CA125 ovarian marker was repeatedly off the charts), my doctor had no problems making an immediate referral.
Waiting and Managing Symptoms
No one had thought to talk to me about long-term pain management, so waiting and not knowing was tough. In desperation for relief, I began to seek alternative therapies to help me—Bowen Technique and Homeopathy became my lifelines while I waited for my gynaecology consultation.
Finally, late in November 2023, the day arrived. I was psyched up and ready, but was unprepared for what actually happened. The consultant I was meant to see was off sick, so someone else had taken his list but was running an hour late. Sitting waiting, feeling all psyched up for that long meant by the time I walked into the appointment, I was emotionally frayed. I sat down as the consultant started with several quick-fire questions about my menstrual/sexual health and then did an internal examination. Finally, he said, ‘Given everything I’m seeing, I am diagnosing endometriosis. I would like to put you on the waiting list for a diagnostic laparoscopy to confirm. Do you consent?’
I burst into tears. I’d spoken to so many people and read so many stories of people having to advocate for themselves and fight for investigation, that I couldn’t believe what I was hearing. There was no fighting to be seen or heard, it simply occurred. It was such a relief that I could barely speak, so I hardly noticed that I was quickly ushered from the room with no time to ask any questions. The only downside was I was told it would be an 80 week wait for surgery (Summer 2025) so I strapped myself in for a long wait and set about trying to rebuild my life and health in the interim.
An Intense Summer
I spent the following months working hard to restore my physical health. Naproxen had not touched the sides of my pain, so I focused on regular Bowen Therapy and Homeopathy appointments. Slowly but surely, I started to see improvements in my symptoms. I couldn’t believe it when, in February 2024, my period was so light and manageable that it required no painkillers and felt like a complete non-event. I was elated and felt like things were getting back to ‘normal’.
In May 2024, I found out I was pregnant again and was hopeful, yet terrified. Weeks later, my worst fears came true when I had another miscarriage. Devastating as it was, I barely had time to process it before I received an unexpected phone call from the hospital—would I like to come in for my surgery on the 13th July 2024?
With 3 and a 1/2 weeks to prepare, I shelved my grief and prepared my list of questions for my pre-op appointment, having not had a chance to ask any questions beforehand. At pre-op, I was met with a nurse who was unhelpful and tried to blame me for not asking my questions previously, even when I explained that no opportunity had been given. I left feeling upset and stressed, worried about the surgery looming in a week.
A couple of days later, I received a call from my consultant’s secretary inviting me to an appointment, having been informed by the nurse that I had lots of questions. Two days before my surgery I found myself talking to my consultant, who had all the time in the world for my million and one questions. No question was too stupid. He drew diagrams, making sure I was happy with everything. And truthfully, I was. I felt safe in his hands and went home eager to get to Saturday morning.
A Formal Diagnosis
Saturday arrived and I was a bag of nerves. I was second on the morning list and after getting gowned up, I settled into a chair with a new book. I only got one page in before my consultant popped his head around my curtain. His first words were, ‘Are you alright? Do you have any more questions?’ He remembered me! Instantly, I felt less panicked until he told me I was moving up the list due to someone drinking coffee two hours ago, causing the anaesthetist to bump them to the back of the queue. Gulp.
Five minutes later, a theatre nurse came to get me. There was no going back. This was it. Finally.
The next thing I knew, a nurse was saying my name and asking if I was alright. It was over. I had survived! Back on the ward, I was dosed up on morphine and struggled to wash down toast with copious amounts of tea and water. My mouth felt like the Sahara Desert but I didn’t really care, I just wanted to know what they found.
My consultant arrived to talk it through; they had found spots of endometriosis in several places, including my bowel and bladder. They had freed up an ovary that had become adhered due to endo but otherwise my tubes looked good—as they’d also performed a dye test. The consultant recommended I ask for a fertility referral, given my age and life plans and I was formally discharged from gynaecology as they did not plan to treat my endometriosis at that point in time.
By 1:30 pm, I was home recovering. My immediate focus was on healing. Initial recovery was swift; however, feeling properly like myself again took a lot longer. It wasn’t until much later that I realised how adrift I felt. I’d been given a massive diagnosis, promptly discharged and left to my own devices.
Life Beyond Diagnosis
Shortly after my diagnosis, endometriosis took a ‘backseat’ in my life. That’s not to say it went away; it certainly didn’t. It’s ever-present in my life, and I’m always working on managing it and building my life around it. However, life took a few new twists and turns, so endo became less of a priority and more background noise.
Following my diagnosis, I had a fertility referral and had lots of tests done, which thankfully all came back very positive. However, I then had a third miscarriage, which prompted more investigation, alongside dealing with my physical recovery and immense grief. These investigations led to another diagnosis of the autoimmune condition, Sjögren’s disease, in June 2025, which was unexpected but also a surprising relief as it explained a lot of symptoms I’d been experiencing.
Throughout all of this, I continued to see my Bowen practitioner and Homeopath. They have both been instrumental in helping me manage my symptoms and move forward in life. I’m now at a stage where my periods aren’t completely debilitating and my pain is manageable, which has freed up a great deal of headspace to allow me to work on improving some of my symptoms of Sjögren’s.
I finally feel like I’m at a point where I can rebuild my life now that the not-knowing and trauma of being investigated and actively being a patient are somewhat behind me. I’ve started writing again (!) and begun figuring out who I am now as a result of the last two years. I’ve been able to face all the poetry I wrote during this awful time and collate it into a manuscript for future publication. I’m facing the world again, bit by bit.
It doesn’t mean that there aren’t bad days. There are plenty of days when I feel frustrated and wonder, why me? But there are more good days now too. Days when I have something to look forward to, days where I feel like there’s life beyond my illnesses. I refuse to let my diagnosis define who I am and every day I continue to work on getting healthier and find a way to live well with endo.
Going forward, I plan to share more details about how I manage endo: things that work for me and things that don’t, along with writing about other aspects I’ve touched on here (fertility issues, miscarriage, grief, Sjögren’s and more). On the whole, from the moment I presented with horrendous pain at my doctor’s surgery in summer 2023, I was taken so seriously and investigated thoroughly. I am fortunate to have had an overall very supportive medical team and a relatively quick diagnosis once I learnt how to advocate for myself. I’m sure my endometriosis journey is far from done but for now, I’m managing it the best I can while still finding a way to move forward in my life.
If you also suffer with endometriosis or are trying to get diagnosed, I’d love to hear about your experiences. The more we can share and normalise it, the less stigma surrounds it and hopefully, there’ll be fewer teenagers like me dismissing symptoms thinking it’s ‘normal’ when it’s absolutely not.
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