Process of being diagnosed left me feeling hopeless

Prior to starting my period at age 11, I rarely interacted with the NHS. I always had a high tolerance for pain and was well, so it was worrying when I started to experience so much pain.  Over the following year, I was left feeling hopeless and helpless.

The emergence of my symptoms started off with very strong and painful periods that lasted for over a week. Then, at some point, the abdominal pain would persist beyond the length of my period. I would regularly visit my local GP, complaining of this pain, and was advised that the pain came from an intolerance to lactose, stomach bugs, and stomach ulcers. I received a myriad of diagnoses for over a year. However, none of these treatments relieved my pain.

Pain became so bad

This pain eventually became so bad that I would miss significant amounts of school because the pain and bloating were so unbearable, I could not leave my bed. It also negatively affected my mental health because I knew something was wrong with my body, but I was constantly told otherwise by doctors.

At some point, the pain was so severe that I needed to be taken to A&E in the middle of the night, administered oral morphine, and spent a night in the emergency room. However, this did not lead to any progress in diagnosing my condition.

I wasn’t making it up

Eventually, after over a year of unsuccessful diagnosis and treatment, a GP escalated my case and referred me to my local hospital for an ultrasound. It was then that a doctor found a 4cm long cyst on one of my ovaries. According to the Office on Women’s Health, around 8% of (premenopausal), women develop an ovarian cyst that requires medical treatment. This discovery, although worrying, offered me a lot of relief and confirmed that I was not “making up” my illness.

I was prescribed medication to stop my periods and allow the cyst to heal, as well as general pain medications. After around 2 months, the pain completely disappeared, and in my next ultrasound, the cyst was no longer there.

Feeling almost hopeless

Although getting properly diagnosed was life-changing and allowed me to finally be pain-free and return to school, the process of getting diagnosed left me feeling almost hopeless. I had consistently complained of severe pelvic pain, and it took over a year to be referred for an ultrasound scan. Getting referred earlier could have saved me a lot of pain, A&E visits, and missed days of school.

What do I want healthcare professionals to learn from my experience?

There needs to be training and systems put in place to flag symptoms and refer people earlier to tertiary hospital services when necessary. If my cyst had remained untreated and continued to grow, it may have required surgical removal or, worse, it could have ruptured my ovary.

Early diagnosis is the key to stopping disease progression and saves the NHS a lot of money on emergency treatments.

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