‘Warrior’ Becki seeks improved support and information for women living with endometriosis

Endometriosis causes tissue similar to the lining of the womb to grow in other areas of the body, causing pain which can be severe, and it’s a condition which sometimes leads to infertility. Women who have the condition can also be susceptible to infections as a result. However, despite its severity and impact, endometriosis is not yet classed as a disability.

Becki’s story began with her diagnosis at the age of 17. The symptoms she experienced worsened following childbirth, and she was due to undergo an operation in 2020 to help alleviate the pain the endometriosis was causing. Unfortunately, due to the impact of Covid and the subsequent delays to operations it caused, Becki’s procedure did not go ahead until 2022.

During the intervening two-year period, the continued growth of tissue caused by the condition meant that Becki’s symptoms worsened and, ultimately, the operation was unsuccessful. Consequently, she now requires a hysterectomy and bladder and bowel reconstruction, procedures that she continues to wait for but without a confirmed date.

Meanwhile, the pain Becki is attempting to manage has increased, which has caused her to experience a number of falls. A recent fall on to a radiator resulted in Becki sustaining burns to her face. On another occasion, she was discovered by her young daughter unconscious on the bathroom floor following a fall. 

The falls experienced by Becki often lead to her being hospitalised before returning home to manage her condition independently, usually for a period of around 14 weeks until the next fall occurs. This cycle has continued since 2022 and has severely impacted Becki’s mental health and her ability to lead a normal life.

“My life predominantly is split between working, caring for my daughter and managing my condition.” Becki explained. “Endometriosis has knocked my confidence and had a significant impact on my social life and relationships. Last year, for the first time in five years, I was able to go on holiday with my daughter, but we had to be taken by a friend as I cannot travel on my own with her due to the falls I’ve experienced. The condition takes away so much.”

Becki works in the social care sector and feels fortunate to have an understanding employer who allows her to work flexibly. In fact, she receives 15 hours of care per week provided directly by her employer. 

“This has been instrumental to allowing me to continue to work and provide adequate care for my daughter and my own wellbeing. 

“Working in healthcare, I fully appreciate the pressures that are placed on the NHS. My local hospital in West Suffolk has been brilliant and given me phenomenal care. 

“Sadly, there is no consistency of support and information provided to all women with endometriosis across the UK. I think joint agency working is lacking throughout endometriosis and gynaecology services. There needs to be much more communication between them to provide a good level of service to the thousands of women who are living with the condition.”

Becki previously lived in Cambridgeshire. Her GP is located in the county and her endometriosis specialist is based at Addenbrooke’s hospital in Cambridge, but Becki’s care has been mostly provided by West Suffolk.

“West Suffolk have done so much to keep me living independently at home – over and above given that they are not endometriosis specialists. It’s a brilliant unit and the staff deserve praise for the support they provide.”

Whilst she awaits further surgery, Becki is being supported by the Chronic Pain Team in Cambridge and has access to pain relief medication. She has also recently begun Cognitive Behaviour Therapy (CBT) to manage the pain.

“Therapy is preferable to medication, given potential side-effects and recorded issues around addiction to painkillers.”  she explained.

Becki is determined to help others living with the condition and she volunteers for an endometriosis charity.

“Trying to advocate for myself and others has been really difficult, but it’s so important to raise awareness of endometriosis and the challenges that women living with it face.”