Shining a light on endometriosis – understanding the signs through real experience

At NHS Western Isles, we want to raise awareness of endometriosis by sharing the real experiences of those living with the condition. Thank you to our local resident for bravely sharing their story with us in the hope of helping others recognise the signs and feel empowered to seek support.

“My symptoms first began around 6 years ago, and it started with sharp, one-sided pain. Over time, the pain has progressively worsened, especially with movement, and can now spread around to my abdomen and back. Looking back, I struggled with fatigue and heavy menstrual bleeding for many years beforehand, but I didn’t recognise them as potential symptoms at the time.

After my second pregnancy, the pain became worse and more frequent. This was when I decided to pay attention to my body that something wasn’t right.

Symptoms can vary. Some days I have no pain at all, and other days, I can manage the pain with hot water bottles and ibuprofen. However, many days I experience intense pain that limits me to the point where I can’t stand for long and need to take stronger pain medication. My symptoms become noticeably worse around the time of my period. Before my laparoscopy last year, I would struggle to complete simple tasks such as washing dishes, walking around my house or lifting my children.

A typical flare up begins with a sharp pain in my side or cramping in my abdomen. This will build up to intense pain that feels as though someone is twisting my insides repeatedly, and it can quite literally take my breath away. When this happens, I am often unable to move and become bed bound. There have been times that the pain has been severe enough to make me vomit. A flare up can last anything from a few hours to a few days.

I visited the GP and hospital many times over the 6 years before I finally received my diagnosed last April. It felt like a battle, having to repeat my symptoms and struggles to different people. Each time I was sent for a kidney scan which would show up clear. When I was finally referred to Gynaecology to query endometriosis, I was sent for another kidney scan and told that they didn’t think it was a Gynae issue. Thankfully I pushed for the laparoscopy, and I was referred on. Endometriosis was then confirmed following the surgery.

The journey to my diagnosis massively affected my mental health and emotional wellbeing. I have been left feeling very emotional and mentally exhausted over the years. I feel frustrated and hopeless when experiencing a flare up. I am afraid to arrange plans as I don’t know if I will feel well enough to attend. I put a pressure on myself to ‘power through’ the pain, which can feel draining.

There should be more awareness about this condition. Not enough people are aware of this condition and the impact it can have. Employers should be more aware in order to provide support to not only those suffering, but their families too. I think that there is still that pressure to ‘put on a brave face’ and carry on your day through pain, but if more people were aware of the unpredictability of this condition, it may ease that feeling.

To anyone who is experiencing symptoms and thinking about seeking a diagnosis, I would tell them to not give up, to listen to the voice in your head telling you that something is not right with your body. Although there is no cure for the condition, receiving the diagnosis is a huge relief and there are steps available to help ease the pain.”

Endometriosis affects around 1 in 10 women, yet it often goes unrecognised. NHS Western Isles encourages anyone experiencing similar symptoms to seek medical advice and to keep advocating for themselves. Early recognition and support can make a significant difference.