‘My agonising battle with endometriosis’ Stacey (34) speaks from hospital bed to raise awareness
A Fallin mum who had a full hysterectomy at the age of just 25 has spoken out to raise awareness of endometriosis.
Stacey Allan wants to make others aware of the debilitating condition as part of Endometriosis Awareness Month.
Stacey, 34, was earlier this month admitted to hospital with abdominal adhesions. Speaking to the Observer from her hospital bed, she described how the illness has left her in agony.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes and can affect women of any age. Symptoms include severe pain in your lower stomach or back and difficulty getting pregnant.
Stacey underwent a total hysterectomy nine years ago and says “I never thought I’d still be living a nightmare in excruciating pain”.
The mum-of-two has since been discharged from hospital. She says that she first started her menstrual cycle at the age of six and from there on had very painful periods. She said: “By the time I was in secondary school the pain was debilitating but no one ever seemed to believe or care how bad my suffering was. No one can see inside, it’s not like a broken arm with a bandage where you can say ‘oh that must be sore’. No one ever understood. Hidden illnesses, especially endometriosis, take on average seven to eight years to be diagnosed. It’s absolutely crazy that women need to suffer and fight just to be heard.”
She added: “In my late teens the pain would land me in hospital with how extreme it would get.
“I went on to have my children, firstly my daughter Emily then my son Mylo. After my second child, only days after birth, my endometriosis attacked with a vengeance. It came and decided never to leave.
“There were days where I was on the floor screaming, passing out due to the pain. It felt like my insides were getting carved out.”
By the time she was 23-years-old the pain became so extreme she ended up being forced to have emergency surgery due to the agony she experienced. That’s when it was discovered that she had endometriosis.
She recounted: “I went on to go through medical induced menopause. It took the edge off the pain but I was still suffering and not able to live a normal life. By the age of 25 the consultants came to the decision a full hysterectomy would be the only way for me to live a normal life. At 25 years old, having a hysterectomy came with its own side effects, but I was willing to do anything to get my life back. The doctors ensured me this surgery would give me a better lease of life - but they were wrong.”
Nine years on from the surgery Stacey has continued to suffer from the symptoms. She says that, due to the treatments of the medically induced menopause and lack of hormones as a result of the hysterectomy, she now has osteoporosis – a disease where the bones thin due to lack of estrogen.
Stacey added: “The pain never left me. I still have endometriosis as it had attached to other internal organs and wrapped around nerves. My hysterectomy was a fail and I honestly regret it some days, as I have more ailments.”
She was re-admitted to hospital earlier this month after collapsing with extreme pain, which morphine was unable to ease.
“I have bad scar tissue left behind after my surgeries”, Stacey added, “which has caused abdominal adhesions. It’s like having chewing gum inside sticking your organs together until you feel them rip, twist and pull apart.
“There are days I see my tummy change shape and being sucked in with the organs being pulled.
“There needs to be more awareness of this disease so we can try and get the waiting and diagnosis times reduced significantly. Woman can’t suffer like this. The sooner we know we have it the sooner it can be treated and hopefully stopped before it spreads.
“I want to share my story to tell women to speak up, stand up and let’s kick endometriosis’ butt.
“I’m not doing this for me, I’m doing this for every woman, especially my 13-yearold daughter who is currently under the gynaecologist with suspected endometriosis. I won’t let her suffer the way I do. I will stand for every single woman possible to try to help raise awareness of endometriosis. It’s not just a bad period pain, it’s a disability and something that ruins lives.”