I finally get to see the Endometriosis specialist at the hospital last Friday 8th of November. I was referred back in April and it has been a long and anxious wait because it took me seven months to get an appointment. I’ve been worried to see him and it was an emotional and difficult consultation. We discussed the ultrasound, MRI, flexible sigmoidoscopy, and my biopsy as well as my previous operations that I’ve had done due to endometriosis. He explained that my illness has spread from my uterus to my bladder, rectum, pelvis, ovary, bowel wall and possible my kidneys as well. I have a 6.5 cm complex cyst wrapped around my ovary (I already knew that).
The Endometriosis specialist told me that he will discuss with the other surgeons (Urology and Bowel surgeon) regarding my options. He said there’s a seven-month wait within the NHS for the operation, and there’s a high risk for me to get a stoma bag again (due to my previous bowel reconstruction and major open surgeries).
Please understand that Endometriosis is not just period pain, I feel that phrase is an insult to all of us who are suffering. It’s a severe and horrendous illness, and there is no cure. It grows and spreads in a woman’s body, damages her organs and it affects her whole life – her relationships, fertility, mental health, school, work, career and social life. She has to fight to be understood, she has to explain over and over to be heard and believed. How can that be fair?
Working within the NHS, I have spoken to women who are waiting to be seen by the consultant. They are in pain, they are upset and worried. When I told them that I am one of them and that I know what they are going through, they are relieved that the person they are talking to understands. That is all we want – to be heard, seen and understood.
Why is it so hard for society to understand that?
With love and courage,