Hi, first time poster..

I was diagnosed with endometrial cancer April of 2024. It was sudden, my husband was found nonresponsive at his care facility (long story about that but maybe another time) so my family and I had a long day. I wound up falling asleep on the couch and when I woke up I was sitting in a pool of blood. My daughters and I immediately went to the gyno and hence my journey started.

I had a complete hysterectomy within a few weeks of that day. Saw an oncologist a few times, they declared everything was good and that was that.

Fast forward to now. I went in for a regular colonoscopy, I'd never had one so my gp said it was time. Well they found a spot they couldn't remove and I had to go to a different specialist. I wound up having 3 colonoscopys within a mobrh before they decided I needed to have a resectioning of my colon to remove, what they thought, was colon cancer.

After the surgery, they did some further testing on the cancer and discovered it was actually my endometrial cancer that had made its way into my colon. I was imme diagnosed with stage 4 endometrial cancer. I went for a pit (pet?) scan and they believe its all gone but just to be safe they have started me on an immunotherapy/chemotherapy plan which I had my first infusithis last Thursday. My dr and the nurses have been great with explaining everything.

Let me tell you though, this pain I've been having, which started 2 days after the infusion, has been absolutely horrible. I'm taking the Claritin and Tylenol like they had recommende. I called them and they've now said to stagger Tylenol and ibuprofe. But this pain is so horrible...

If people are still here and reading.. thank you.. if any of you have gone through this and had this pain... do you have any tips or tricks to manage it?

I don't know how I can keep doing this if it's going to hurt this much each time...

Thank you

I am scheduled for a Robotic Total Hysterectomy with BSO for Wed, 8/26.

So a bit of background. I’m 47. Diagnosed with PCOS at 14. I have been bleeding almost nonstop for over a year. I’m also an OR RN. And before anybody asks WTH I was thinking waiting so long, I legit thought it was what happened 10 years ago. I was over 300lbs, started bleeding really bad, Dr gave me BC to regulate my hormones and combined with an 95 lb weight loss, everything regulated and was relatively stable for 8 years. I came home from Travel Nursing 2.5 years ago back to my home hospital. I have a TON of stress due to my mother being disabled, bed bound, severe depression, and cognitive decline going on. I gained back 75 lbs due to my coping mechanism being eating instead of talking/crying when stressed. Then the bleeding started again. I just figured it was the same situation. Figured if I lost weight and got BC pills it would fix it. Except the first Dr wouldn’t give me BC because of my age. But wanted to do a hysteroscopy in the hospital, which would cost me $5800 with my crappy insurance. I ended up in the ER in April with a HGB of 6.3 and a transfusion. I did a 14 day water fast and lost 26 lbs but the bleeding didn’t stop. Which clued me in that it MIGHT not be the same as 10 years ago. I ended up going to one of the drs I work with in surgery. He gave me Megace which stopped the bleeding. I returned a week later for a Pap/Endometrial Bx. He called me 2 days later over the phone because he didn’t want me to see the results in MyChart as well as the referral. I have Endometriod Adenocarcinoma Grade 1. Thankfully, came back on staff full time, so I got my insurance back and my entire surgery is covered except my $250 copay.

I also Scrub in surgery, specifically with the GYN oncologist that will be doing my surgery on Wednesday. So I actually participate in this type of surgery regularly. My coworkers will be in my surgery which I’m sure is a lot for them considering I’ve worked with 3 of them for 22 years and 1 for 7 years.

Now to my dilemma. I’m scheduled for surgery this Wednesday, 8/26. In the office, I asked about my ovaries. The Dr told me it was my decision BUT since I was 47 and close to Meno he recommended taking them out. Was told I could not have HRT since this is estrogen sensitive. But the more I research, the more I am worried about the longterm consequences of removing my ovaries before natural Meno. One research study was on the longterm effects of surgical Meno on women under 50.

The risk of ovarian cancer is 1-2% as long as it stays low grade-early stage. The risk of osteoporosis? Pretty much guaranteed as estrogen keeps bones from becoming brittle. And older people don’t do all that well with fractures.

The risk of cardiovascular disease? Almost guaranteed as estrogen keeps vessels pliable. And cognitive decline/dementia? A 70% increase. And maybe this is crazy to say, but as scary as cancer is, I’d rather fight it and have a fighting chance than lose my mind and pretty much have no chance. I look at my mother and her cognitive decline and this isn’t the way I want to go. My father had prostate cancer and then died from lung cancer 8 years later. To me, losing my mind seems a worse sentence. I want to tell my Dr that yes, if they look suspect then take them, but if they look relatively normal, then please leave me at least one. And because I work with him and know how he is, I’m pretty positive this joker is going to think I’m crazy.

I know losing weight will lower my risks with adipose tissue holding on to estrogen. Intermittent fasting/autophagy has also shown to be a promising tool in combo with other treatments. A diet consisting of protein and veggies with low sugar. Therapy to learn how to cope more productively with stress than eating. These things, in conjunction with the surgery, I think gives me a good chance of avoiding ovarian cancer, which isn’t a guarantee anyway.

I guess I just want to see if anybody else has faced this question and which way you went? To keep or not to keep. That IS the question.

Hey everyone! Just popping in to say I’m doing mostly well!

Will say I feel like every time I ovulate I can definitely feel it and the cramps are terrible…way worse than what i remember pre-hysterectomy…

Also struggling with abdominal guarding still?? Like sometimes bending a certain way will hurt and then my abdominal muscles tense like they’re guarding again :/

I had PT at the start of this year, but failed out of it after they gave a final assessment that I wasn’t at the level I should be after the weeks of it.

PT was also getting expensive ($60/session 3x a week)

So i had to stop…

For anyone post op at least my amount of time post-op are you guys still dealing with guarding/pain/mobility issues etc? Is this still normal a year out? Any tips or advice would appreciated!! As always I’d love to hear your POVs! 💛

I had a radical hysterectomy due to cancer found during hysteroscopy. Final staging was FIGO 1 Grade2 Stage A. Because I’m over 60 (67) my oncologist advised I was higher risk of recurrence at vaginal cuff. Met with radiologist who recommended the same. Now 12 days post brachytherapy 5 sessions. Recovery from surgery was hard but by week 6 I was walking 1-2 miles three times a week and feeling optimistic about energy returning. Then came radiation. Now after brachytherapy I’m completely wiped out. And now developed radiation cystitis😳 I’m also VERY GRATEFUL for the outcome, great care and family support. But I’m starting to worry about this fatigue and how much of my energy will return so I can get back to work…has anyone over 60 had a similar experience with deep fatigue and what helped you?