Stage 1a Endometrial Cancer and Severe Endometriosis

[PotsnPan]

Hi All
Quite some time since I posted on here.
I've recently been diagnosed with Stage 1a Endometrial Cancer, and was scheduled for a hysterectomy. However the MRI has shown a significant amount of endometriosis and there's now discussions with the MDT as to whether the hysterectomy will be viable. Apparently my bowel and rectum are stuck to my womb.
Just wondering if there's any other women out there having gone through this (not necessarily the cancer, but the severe endo) and whether they were able to have surgery/hysterectomies?
Thank you

I had virtually this exact thing - except mine was ovarian cancer, complicated by severe endometriosis and adenomyosis. They didn't know about those complications when they first operated.

They did mine as 2 operations. The first one was to remove the ovaries. That took over 4 hours as one was stuck somewhere near my spine.

The second operation was a full abdominal radical hysterectomy but by then I had an MRI so they could plan ahead. They had bowel and gynae surgeons in together and the operation took 5 hours. I had been warned I may have damage - and there was way too much interest in my bowels for a frw days after the operation - but all was ok.

So much now makes sense and I live pain free. Best thing that ever happened (despite the initial shock and fear of cancer).

@LeoLeo2 thank you for your response. Are you all well now?

I was diagnosed with stage 1a. Had cervix, womb and ovaries removed vaginally. it was a much longer operation than originally planned because during it endometriosis was discovered. Things were stuck! I think it was about 4 or 5 hours.

I didn't know I had endometriosis ! When I was recovering the Consultant asked me what my periods had been like. I described them - "that was endometriosis" she said. Looking back it makes sense. Clearly I wasn't as bad as many woman are though. The Consultant said that in my specific case the endometriosis had contributed to the endometrial cancer. I emphasise in my specific case. It's not going to be the same for everyone.

I recovered fine.

Good luck!

@Joelz thank you and I’m glad you’ve recovered well. Did they not perform an MRI prior to the surgery? I was diagnosed with adenomyosis a few years ago but endometriosis was never conclusive until this MRI. Did they say what was stuck? Also did you have your surgery at a specialist Endo hospital? I’ve so many questions going round

No MRI. It was thought I had polyps so I had a hysteroscopy....and they found it. I remember the look on the faces of the staff when they saw the screen. I was completely oblivious , though they of course knew straightaway. They booked me in for a biopsy the next week.

I have no idea what was 'stuck' , I just know that it wasn't expected and it took the Surgeon a lot longer to deal with than had been anticipated! The operation was done privately.

I was very lucky, I had gone to the GP about something else & mentioned at the end that I thought I was peri as my periods had gone "a bit odd". I was 49. Stopping, starting, next month very light, month after very heavy etc, He said I'll refer you , you might have a polyp.

That was genuinely it. It was caught very, very early. I was completely floored when I got the diagnosis. Had the operation. Took me about 2 months to recover completely ( not so much from the operation itself, more the extreme fatigue.) I was young to have that diagnosis.

Then when I was told I had had endo I was in mild shock too. I'd had my kids in my late 30's. No real problems getting pregnant. I just couldn't believe it. I used to get horrendous pain the first day of my period, pains going down my legs, nausea. I always had. I just thought it was normal, and for me , it was.

The thing was, in my friendship group I was the one who didn't have gynaecological issues. Most had something - fibroids, ovarian cysts, irregular smears etc. But it ended up that I was the one who unwittingly had the most serious problem. All my friends made a point of seeking gynae referrals afterward to get checked out. There were no discoveries of cancer but quite a few fibroids.

Reading all of that back, it does sound quite unbelievable, but that is what happened.

In my second operation they found the cancer had spread (it was a while after the MRI because it was summer 2020 and hospitals were in chaos).

Luckily, it was all contained in what they took out and I have been cancer free for 5 years.

It was a difficult time, but I found recovery (pain-wise and mobility-wise) much faster than expected. I think that was because I was so used to the pain from endometriosis.

The back pain I'd had since I was about 10 disappeared overnight (after years of scans, back braces...).

I hope your operation is similarly successful.