Endometriosis and Me: "I was told I was a hypochondriac"

In our series, Endometriosis and Me, we talk to three women - Antoinette, Kate and Laura, who have varying symptoms of the disease. With The Endometriosis Foundation, Jude is developing a research partnership that aims to explore the relationship between Lower Urinary Tract Symptoms (such as incontinence) and Endometriosis to provide grounds for developing education for healthcare professionals and actionable insights for those affected.

Meet Antoinette Pimblett, PhD

It takes on average six to seven years for women to get a correct diagnosis for endometriosis, mostly because of the lack of understanding and research into the condition. For Antoinette, her journey meant that for years, since she was just twelve years old, she navigated appointment after appointment and it was even suggested at one point that she had hypochondria, a condition where people invent illness or lie about being ill. 

Now a doctor with a PhD in Reproductive Health, Antoinette uses her experience to support and better the lives of other women through research and innovation. 

Antoinette's Story

“I have always known something was wrong. My periods started when I was 12 and within a few cycles I had pain, flooding and clots. My mum took me to the GP, who told me that I would ‘grow out of it’ and prescribed blood thickeners, and I was sent on my way.” Believing that pain and flooding during her period was normal, Antoinette learned from a young age to grin and bear it.

When Antoinette turned 20, things took a turn for the worse and she found herself alternating between bouts of vomiting and attacks of diarrhoea or constipation. The associated bloating made her increasingly self-conscious, and she developed an unhealthy relationship with diet and exercise (orthorexia) to try and change her body and burn off everything she consumed. 

“It felt like I was at the GP at least once a month and every time there was a new diagnosis. Bulimia, IBS, a year-long stomach flu, PCOS and my ‘fave’, hypochondria. I’ve lost count of the amount of appointments, investigations, tests that I’ve been through, many of which were invasive - not to mention the array of medications I’ve tried.”

Like many of her peer group, Antoinette was on the Pill and that had the effect of masking her symptoms, which were nearly all aligned to her menstrual cycle. “I was exhausted having to advocate for myself all the time. So I blamed the Pill eventually and stopped taking it.” During this time Antoinette had issues with her bladder too and didn’t know what was causing the overactivity and urgency she was experiencing. “Every time I had my period I’d be dashing for the loo but then I kept getting this damp feeling in my pants. I hadn’t sneezed or laughed hard so I couldn’t work out what it was at first. I even mentioned it to a doctor thinking it was some kind of discharge and they looked at me like I was mad.” It was another symptom of endometriosis - bladder leaks are common with the condition, but again Antoinette was left without any support or further investigation. 

Shortly after, she developed irregular bleeding and was rushed through the urgent cancer referral system. By this time, Antoinette had been married for just six months, and was facing a potential cancer diagnosis. Finally, she saw a gynaecologist for the first time and after listening to her whole history, the doctor said, “I don't think you have cancer; I think you have endometriosis”.

Not long after, Antoinette received a diagnosis via 3D transvaginal ultrasound, and within the year, she’d had surgery - but with huge NHS waiting lists, she was forced to go private for the operation. “I’d love to say that that is the end of my journey, but only last week I discovered the disease is back and worse than ever. Tests have shown I have two fused ovaries, a bowel nodule and an endometrioma. I’m now juggling a whole bunch of decisions around preserving my fertility, starting a family and more surgery. It’s such a lot to take in, and there is virtually no information to support my decision making. I’m literally making life-changing decisions from a place of pain and without any solid facts.”

“Endometriosis has taken most of my youth and my faith in most doctors, but it’s made me so determined and develop a true passion to bettering the lives of other women.”

You can read more from our series, Endometriosis and Me here.

For advice and support, visit https://www.theendometriosisfoundation.org/.