Endometriosis or cancer

Hello, I have received results of an MRI scan during lockdown and have been told I have extensive endometriosis throughout the pelvis and deep seated recto vaginal endometriosis. My symptoms have become unbearable and in the absence of any help or guidance from the hospital during this time, I have been left to worry and notice my abdominal pain and bloating worsening daily. I understand that doctors can do a scraping to determine if cancer is present but need to know if endo and endometrial cancer can appear the same on scans. I have been under two hospitals for five years. Between them, I have had three appointments face to face where I had to beg them to treat me. I was left to wait for a year each time with nothing but ultrasound scans. I demanded an mri in January and have only just received the news that it's stage 4- Endometriosis just to give you an idea of the waiting times. I'm terrified. I no longer have a consultant as she wrote on her last letter that I would be referred to a specialist endo team as it was so extensive but the hospital says emergency phone calls only to the team. I have no consultant now and I'm in limbo. PALS helped me get the scan results after I complained. Sorry for the long post but could somebody who knows, advise me of how to proceed during this time. I am in so much pain and terrified this could also be cancerous. Thank you.

  • Hello Cornflowerblue

    I'm sorry to hear that you're struggling with extensive endometriosis. I know that this will have been difficult for you and I'm sorry to hear that it's taken so long to be properly diagnosed. 

    I'm afraid that I don't know if endometriosis and endometrial cancer can appear on the same scans but I wonder if you've spoken to anyone at Endometriosis UK? As a specialist charity they may be able to help with information and guidance. I did notice on their website that they also have some information about endometriosis and Covid19 which I've linked for you here. They also have a support line which is open over the weekend if you wanted to speak to someone. 

    If you'd like to talk through your cancer concerns with one of our nurses then you're most welcome to give them a call. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    In the meantime if your symptoms are getting worse then do speak to your GP or call NHS 111. 

    I do hope that you are able to get some answers and specialist support soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator