“It’s like having barbed wires wrapped around your insides” – ‘End’ing the silence with Devon’s Endometriosis Journey
For Endometriosis Awareness Month, we’re focusing on encouraging women to stop dismissing their pain and discomfort and seek support if they feel they may be included in the one in 10 women affected by endometriosis. Devon Beck, a patient from our Women’s Hospital, aged 31 from Sedgley bravely shared her story with us about the importance of speaking up and seeking diagnosis for endometriosis, to help women affected receive the best support to manage their endometriosis flare-ups.
As a progressive condition, women can reduce their pain by seeking medical care as soon as possible. Endometriosis takes an average of seven years to diagnose in the UK, as many women with the condition believe it is natural to be in intense and debilitating pain during menstruation or that they simply have a ‘bad period’. Often, the condition can also be misdiagnosed as irritable bowel syndrome (IBS) as endometriosis affects the bowel as well as the reproductive system.
In some cases, the pain can also be mistaken as psychological, when the pain is manifested in your head which is not the case for those with the condition. You can learn more about what endometriosis is by visiting our discussion with Specialist Clinical Nurse Helen Walshe here.
‘End’ing the silence - Devon’s Story
At the age of 17, Devon began experiencing intense lower back and stomach pains throughout her late teenage years, which were initially mistaken for menstruation pains. It took Devon a total of three years to be diagnosed with her endometriosis. Devon said: “I was one of the lucky ones, many women go on for 7 years with these pains dismissing them as ‘normal’. Without medical intervention like pelvic physiotherapy and Prostap, I wouldn’t be able to manage the intensity of my endometriosis which is why it’s so important for women to seek support as early as possible, as this is an illness that worsens with time if left untreated.
“Your period shouldn’t interfere this intensely with your life.”
Diagnosed at 21 years old, after having her condition mistaken for irritable bowel syndrome and even appendicitis, despite her appendix already being removed, Devon said: “It was a relief to finally hear my diagnosis, that all of the pain wasn’t in my head. I collapsed whilst out shopping one day and this became the final straw before my diagnosis. Once diagnosed, I could begin finding better management strategies and begin taking back control of my body. This is why I think it’s so important to speak up. You know your own body – stick by your feelings and make them heard. Periods should not be this painful.
Previously, Devon worked as an Intensive Care Unit (ICU) nurse but later had to step into a role as an Occupational Health nurse as the night shifts of the ICU would interfere with her
medication schedule, preventing her from continuing as a ward nurse. At one point Devon shared that she visited ward eight outpatients at our Women’s Hospital at least once a month for an entire year prior to pain management. Devon said: “I’ve always been treated with the utmost respect there, I'm still in pain every day but the support I receive helps me along. At one point I was living injection to injection – I'm now on the hysterectomy waiting list at 31-years-old to help permanently reduce my pain without the need for constant injections and medication.
In total, Devon has had a total of four excision laparoscopies to remove the endometrial tissue that causes her pain, she has also lost one of her ovaries and one fallopian tube to minimise the pain caused by her condition. Endometriosis also affected her fertility, sadly being rejected fertility treatment due to the severity of her endometriosis, which had a significant impact on her mental health during this time. She said: “I was unable to go through fertility treatment, I’ve come to terms with that now with my partner Sarah. I still feel like a part of me has been taken, but me and my partner are going through adoption to have our own family.
Devon shared how opening up to her partner Sarah about her endometriosis has brought them closer together; “Sarah is always at the ready with a hot water bottle to catch my flare-ups – I'd be lost without her.”
We’d like to say a big thank you to Devon, the ultimate #EndoWarrior for sharing her story with us, helping to encourage more women to seek advice and guidance regarding endometriosis. If you would like to share your endometriosis story with us if you’ve received support at our Women’s Hospital, please email us at bwc.communications@nhs.net