An Endometriosis Story by Lauren Edwards
For the past 30 years I have been living in denial and attempting to navigate through a ‘normal life’ and not face the fact that I have a chronic illness. My name is Lauren and I have Endometriosis and Adenomyosis and despite having had four surgeries, numerous hormone remedies and reoccurring symptoms, I have always tried to mask my illness, treat it as an occasional unwelcome visitor and that if I ignored it then it would eventually go away. However, earlier this year, my symptoms returned with a vengeance and I have now had a diagnosis that has literally floored me.
Endometriosis occurs when endometrial-like tissue in its cunning disguise (this tissue – or the Hateful Bastard as I like to call it – resembles the tissue that lines the inside of the uterus) grows outside of the uterus, spreading and attaching its evil tentacles to various locations, sometimes venturing to organs such as the liver or bowel or just staying close to home and causing devastation to the ovaries, uterus and cervix. Each month when you have your period, the Endometriosis cells build up, break down and bleed in the same way, but unlike your period, it has no way to escape. Then, as it goes on its little path of destruction, it does so in the most physically painful and emotionally distressing way causing the host (me) to experience debilitating pain each month. Unfortunately, it can be a very hard to diagnose disease as it is often seen as just ‘difficult periods’ and the woman suffering is then led down a path of Band Aid style remedies or ignored and palmed off as a hypochondriac in equal measures.
This year, having endured eight months of excruciating pain, lengthy begging phone calls to my GP (trust me to get a flare up during a Pandemic), a panicked blood test result indicating the possible presence of Ovarian Cancer, I had an ultrasound which revealed that I have a very sizeable cyst (also known as an endometrioma or chocolate cyst) on one of my ovaries, which we have named Colin (not the medical team but my children and me). Following this, an oncologist gynaecologist sent me for an MRI which then confirmed the presence of Colin and that he and his Endo lesion friends had caused my ovaries to ‘stick together so that only one was visible on the scan’, further lesions of deep Endometriosis in my pelvic area and on my bowel as well as Adenomyosis in my uterus and lots of other complicated medical terms that I may need to start re-watching ER in order to understand what is actually wrong with me. It feels inconceivable to me that there is so much going on in there which has been left undiagnosed for so long.
For anyone who also lives with Endometriosis or Adenomyosis, you will know that it is often a fight to be heard and understood, that you need to become an expert in the field of gynaecology as most doctors still do not understand this disease. Frustratingly, there are no regular check-ups to monitor your illness and therefore when you do finally get a diagnosis your condition is often advanced and all very complicated. I have lived for 30 years with this illness and it has been a fight at every junction to achieve the care that I should automatically receive and I would like to see this change for Endo sufferers like me. So, I have decided to share my story and to hopefully bring some comfort to anyone else suffering in silence and some knowledge to those who are yet to know what Endometriosis is.