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My Endometriosis Journey: From Early Symptoms to Diagnosis

Alise Ashby, a member of the DAME team, shares her personal journey with endometriosis.
Join her as she navigates the path from early symptoms to diagnosis and treatment, offering insights and support for others facing similar challenges.

My early symptoms

My journey to an endometriosis diagnosis mirrors that of many others—marked by confusion, misinformation, incorrect diagnoses, and a lack of support.

My period started unexpectedly when I was just 9 years old. After a few menstrual bleeds, I quickly realised something was not right. I experienced severe cramping and abdominal pain, and the bleeding went from spotting to extremely heavy periods; requiring regular changes of night period pads during the day and passing clots the size of an avocado seed—all while I was still in primary school!

Period pain was relatively normalised in my family due to a history of gynaecological issues, so I assumed that this was normal (news flash: it’s not!). As the years went on, the range and intensity of my symptoms worsened. These included pains so severe I would vomit or pass out, bedbound for 5-7 days, the hallmark of “endo belly” throughout the month with painful flares, migraines, and in the most recent five years, daily tugging pain not dissimilar to barbed wire. Oh, how I love being a woman!

Seeking medical help

Three years into struggling with these debilitating symptoms, I had my first visit to the GP at 12 years old, where I was immediately prescribed the combined contraceptive pill, Yasmin, for my symptoms. Not only did this not alleviate them, but I also developed cystic acne, anxiety, and depression…

Without adequate treatment options available, I struggled through school and university with this monthly torment. I routinely went home in the middle of lessons during my period to lie in the bath or blitz my stomach with a piping-hot water bottle for some relief. It was typical for me to be in bed 1/3 of the month, unable to function properly, and yet I would get in trouble for truancy as my school was dismissive of the level of pain I was in.

Discovering endometriosis

At 18 years old, I first heard the term “endometriosis” and related to all of the following symptoms (NHS Website):

  • Pain in your lower tummy or back (pelvic pain) – usually worse during your period
  • Period pain that stops you from doing your normal activities
  • Pain during or after sex
  • Abnormally large blood clots in period blood
  • Pain when peeing or pooing during your period
  • Feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period

This prompted me to request a referral to a gynaecologist from my local GP. Following a consultation, I was given an external ultrasound where no endometriosis or abnormalities were found. I would later find out that endometriosis cannot be detected in this way—brilliant!

The gynaecologist informed me that I could have laparoscopic surgery (keyhole surgery) to investigate further, but also warned of the potential risks of damage to my pelvic organs and fertility.

Exploring natural remedies

Natural, herbal remedies for pain always intrigued me, and I attempted to try this before undergoing an operation. I was fortunate to be offered the laparoscopy, as many women are denied surgical investigations, but at 18, I was intimidated by any risky surgeries and, to be honest, the potential for scarring on my stomach terrified me (vain, I know).

During my research, I came across the book Period Power by Maisie Hill, which gave me hope and empowered me to make lifestyle changes: removing gluten, dairy, and refined sugar from my diet, supplementing with vitamin D, magnesium, and iron, introducing raspberry leaf and peppermint tea, eliminating alcohol, and practising yoga.

My bloating appeared slightly less severe and my bleeding was slightly less heavy, but over time, my chronic fatigue worsened, my flares became more frequent, and I wasn’t seeing the improvements I expected from these significant lifestyle changes. I kept asking myself, how can someone so “healthy” feel so unwell?

I convinced myself that I was one discovery away from curing myself through the next best supplement or lifestyle intervention(s). This meant that instead of putting pressure on medical professionals to help me, I was exhausting myself trying to find a cure where there likely wasn’t one.

Seeking specialist care

In 2022, I decided enough was enough, and determined to get answers, I applied for a second referral through my new GP to the gynaecologist once again. Post-COVID-19, waiting lists had grown significantly and after a year I was still waiting to see a general gynaecologist. At my request, my GP escalated my referral to a BSGE-accredited endometriosis clinic which was able to see me within 18 months.

Gynaecologists can be very helpful and are often part of the endometriosis diagnostic process as they can rule out other conditions such as PCOS and fibroids, but they are NOT endo specialists. The reality is, very few consultants can accurately diagnose endometriosis as the majority of the endo cannot be seen via ultrasound or MRI unless the lesions are deep infiltrating or impacting the way that the organs are positioned in the pelvis. The gold standard way to diagnose endometriosis in the UK is via laparoscopic surgery, which still requires specialist training to detect the endometriosis lesions.

Without the support of endometriosis Facebook groups and this wonderful community of “endometriosis warriors,” I wouldn’t have been able to articulate my symptoms and make sense of what was happening to my body in the absence of an official diagnosis. Thanks to this community, I ensured the possibility of endometriosis was taken seriously by medical professionals resulting in this referral to a specialist centre.

The official diagnosis

In May 2024, I was officially diagnosed with stage 4 endometriosis at the endometriosis clinic via a specialist internal ultrasound. The consultant found evidence of extensive endometriosis on my bowel, both ovaries and pouch of Douglas that was altering the position of my pelvic organs and likely the source of my pain. Two large endometriomas on each ovary, also called “chocolate cysts” (which I heavily resent as a lover of chocolate), were also found. I was told—quite bluntly—that I would be unable to conceive in my current condition and that two surgeries would be required to remove the endometriosis and chocolate cysts, but that we could also opt to “do nothing.”

Scientists have found cases of endometriosis on every organ in the body, including the brain and lungs. If left untreated, it may lead to severe symptoms, fertility loss, and organ failure in some cases. It's crucial to treat this condition seriously and promptly to prevent further complications. Though some women find their symptoms and severity of disease do not warrant excision surgery, I was certainly not one of them.

Looking toward treatment

The journey is far from over, as I await two laparoscopic surgeries: one to drain the large “chocolate cysts,” and another to remove the cysts and endometriosis through excision surgery. Both procedures pose risks to my ovarian reserve, so I’ve decided to self-fund egg-freezing following my first surgery. At 24, I never thought I’d have to consider my fertility and whether or not I want to have children, but my future self will be grateful to have the option (assuming things go to plan).

So, here’s my call to action: if you’re experiencing gynaecological issues or suspect that you may have endometriosis – get clued up and demand investigations. Waitlists are increasingly lengthy, and about 1 in 10 women are estimated to have endometriosis. There simply aren’t enough specialists to meet the demand. You can’t do it all alone, and you shouldn’t have to suffer through debilitating symptoms. If your period is stopping you from living your life, then something is wrong.

I’m looking forward to sharing my journey further through the Pioneer blog, and sharing my top tips on managing a painful and heavy menstrual cycle. As well as gynaecological investigations, lifestyle modifications, and endometriosis treatment options.

Stay tuned!

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