Endometrial cancer and endometriosis

Hi Helo and a warm welcome to our spot in the Online Community. I couldn't help but notice the time you wrote your post - I think most of us here posted things in the middle of the night!

I might be sounding a bit dense here, happens a lot nowadays, I'm also not medically trained, but won't the removal of the womb also remove the tissues forming endometriosis? Hope some other members here might have experienced the same thing so can offer some advice. You could also call the Macmillan Support line (number shown below) and speak to a nurse who may have an answer for you.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.

If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

You might also find this link to what to take in my overnight bag useful. If you have to have surgery.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

Sending you welcoming hugs, B xx 

Hi Helo,

It’s nice to meet you too, although I wish it were under happier circumstances.

My primary surgery was for the removal of my right kidney as it was no longer functioning. Long story short, I had a MRI scan 5 days prior to surgery. This scan showed that I was riddled with endometriosis. The only symptom I had was a dull ache in my right pelvis. I just put it down to being over 50 etc. I was urgently referred to a gynae surgeon, who confirmed the diagnosis. It was at this point that I agreed to having all my lady bits removed. And it was a good job that I did as the histology showed that I had stage 3 incurable endometrial cancer, with the cancer originating from a burnt out endometriod cyst up by my right Fallopian tube. The histology also confirmed that a bit of endometriosis had broken away and blocked my ureter, thus killing off my kidney.

I don’t want to scare you but I was in surgery for 8 hrs. My kidney only took 45 mins to remove, the remaining time was spent scrapping back the endometriosis as it had stuck all my pelvic organs together. Apparently it’s like super glue in texture! So you are right in questioning in how your endometriosis will be dealt with during surgery. 

Also, just to make you aware, endometriosis can still come back after having a hysterectomy. If you have your ovaries removed too, it’s rare, but can still happen.

I wish you all the luck in the world with your future treatment. Sending you a big hug.

Liz x