Woman shares years of suffering before private diagnosis
Sapphire Nottingham, 25, from Aston, Birmingham, has described her 'humiliating and frightening' symptoms that led to a diagnosis of deep infiltrating endometriosis (DIE) and adenomyosis after years of being dismissed by doctors. She spent weeks in and out of A&E, suffers pain so severe she is bedbound, and occasionally falls asleep on the toilet due to her condition.
Nottingham felt 'dismissed' as she waited for years for a diagnosis through the NHS, eventually deciding to pay privately for an MRI to find out 'what was wrong with her body'. She now lives with the painful and chronic condition, defined by tissue growing outside of a woman's womb, often associated with severe period pain and heavy periods.
Early symptoms and repeated misdiagnosis
In Sapphire's case, the warning signs began as repeated UTIs when she was around 19 years old. Pain when using the toilet, pain during or after sex, and extreme tiredness are also symptoms listed by the NHS. 'I feel like I have spent years surviving rather than living,' she told BirminghamLive. 'My symptoms have continued to worsen over time. They now include severe abdominal pain, bladder symptoms, loss of bladder control, vaginal pain and nerve pain affecting my back and legs, which can make walking difficult.'
'There have been times where I have spent hours trapped in the bathroom because of my symptoms. I have even fallen asleep on the toilet because I physically couldn't leave.' During flare-ups, she relies heavily on hot water bottles to relieve the pain. However, she said: 'I have used them so much that I have ended up with burns on my skin - those hurt less than an endometriosis flare-up. That is how severe the pain can be.'
Impact on employment and daily life
For Sapphire, the impact of endometriosis has been enormous - including struggles maintaining employment. 'Having a job was one of the few things that gave me a sense of normality, and losing that has been incredibly difficult,' she explained. 'I feel like I have lost the life I used to have. One of the hardest parts of living with endometriosis is the grief that comes with it. I am grieving my old life. I miss being able to make plans without worrying about pain, work without my health getting in the way and enjoy simple everyday things that most people take for granted.'
Her symptoms began when she was around 19, had finished college and was preparing to start university during lockdown. At first, she was repeatedly treated with antibiotics for what doctors believed were recurring UTIs. She added: 'Despite repeatedly asking for help, I often felt dismissed and unheard. That was one of the most distressing parts of the journey. Eventually, I began losing control of my bladder and was wetting myself. It was humiliating, frightening and had a huge impact on my confidence and everyday life.'
Referral and private diagnosis
In 2024, she was finally referred to a urologist. Following investigations, she was told it could be bladder pain syndrome or interstitial cystitis. She was prescribed more medication, but it made 'no difference.' At a follow-up appointment, the urologist suggested symptoms could be caused by endometriosis or adenomyosis, and recommended speaking to her GP about a referral to gynaecology. 'I did exactly that, but the referral process took time,' she said. 'By this point, I was exhausted. I was tired of waiting, tired of fighting for answers and tired of living in pain.'
Feeling she couldn't wait any longer, she decided to pay privately for an MRI. She was then diagnosed with deep infiltrating endometriosis (DIE) and adenomyosis. 'After years of being told different things and feeling dismissed, I finally had proof that something serious was wrong,' she said. Now, she is awaiting surgery scheduled this year, but fears this is far from the end of her journey. 'It is hopefully the beginning of getting some of my life back,' she said. 'I am sharing my story because I know there are so many women going through similar experiences. No woman should have to fight this hard to be heard, to be believed or to receive answers.'
