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 my ultrasound, my MRI, my flexible sigmoidoscopy, 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 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).
After my consultation, I headed back to the office (I work at the NHS hospital) but I was too overwhelmed and upset to get back to work, so my manager decided to send me home so that I could process the information that I had just received.
Please understand that Endometriosis is not just period pain. It’s a severe and horrendous illness, and there is no cure. It grows like a weed in a woman’s body, damages her organs and it affects her whole life – her relationships, fertility, school, work, career and social life. She has to fight to be understood, heard and believed. And I do not think it’s fair.
In my work, I have spoken to women who are waiting for an appointment with the Endometriosis specialist. They are in pain, they are upset and worried. And on top of that, they have to wait for such a long time to be seen. When I told them that I am one of them and that I know what they are going through, they couldn’t believe it – and they said that it was such a relief to talk to someone who understands and listens. That is all we want – to be heard and understood.
Why is it so hard for society to understand that?
With love and courage,