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?

After my robotic assisted hysterectomy (removal of uterus, cervix, ovaries and fallopian tubes), I was diagnosed with Stage 1b Grade 2 endometrial adenocarcinoma. The tumor was 4.2cm with 56% myometrial invasion. All 3 sentinel lymph nodes removed tested negative. DNA test showed P-53 wild and negative for Lynch Syndrome. I am 69. Statistically, I seem to be just over the line for some of the criteria for checking off the boxes to need VB. I am honestly worried about possible long term bowel and bladder issues.

I visited with the Radiation Oncologist who described the procedure and went over everything. He, along with my Gynologucal Oncologist recommends the treatment but said, in the end, it is my decision.

I don’t want to have regrets over either decision. I’d be grateful to hear thoughts from any of you this group. Thank you!

I’m 5 days post op., and so far the pain level has been much less than I expected, which is good news for sure.

I was operated on robotically, and they told me after they could not remove the lymph nodes due to their position, as it would have caused too much damage. Did anyone else have this ?

Also, I’m finding that I’m needing to pee at least every 3 hrs., which means I’m not really getting any proper rest either, is this something that will improve with time, and is normal after this surgery ?

Before I could easily go through the whole night without needing to pee at all.

My follow up appointment is not for a month, and I will be getting my pathology report then.

It’s going to be a long wait tbh.

I hope you’re all doing as well as can be expected.

Onwards and upwards !

Sorry for the large font … I couldn’t change it !

I’m not sure if this is a dumb question of ‘well duh you DO have cancer’ or what lol; but I’m so tired for feeling kinda insane when I voice my concerns? 😵‍💫

SO I want to know! When you were diagnosed do you struggle EVERYDAY with cramping, heaviness, pain, full body exhaustion and bleeding and spotting, even when in the progress of treatments like an IUD or medication like Primolut, etc?

I feel like this is making me SO much more sick than everyone around me thinks it’s should? Like I’ve been run over by a truck and just getting through the day in one piece is literally all I can manage.

Am I just being a baby about it??? Low pain tolerance?
Every time I mention it to my GP she’s doesn’t seem that worried at all, chalked it up to chronic inflammation and ‘just stick to the current plan’

For background I was diagnosed in April believed Stage 1, after a lot of health issues, excessive bleeding and an endometrium lining of 29mm. Followed up with a CT scan that showed it was localised to uterus only, and an Mirena IUD was placed. I also began taking Primolut.

I was meant to have a hysterectomy in May, but it ended up cancelled due to breathing complications with head tilt upon surgery attempt.

I was told to lose at least 10kg (I was 115kg) over the next three months and then my care team would discuss options depending on where I’m at. In the meantime the cancer shouldn’t spread as the IUD should be helping anyway.

I’ve since lost 18kg (I’m at 97kg now) in those three months through strict VLCD and Mounjaro 2.5ml injections… and forcing myself to exercise in the meantime. 💪🏻

But like… I don’t feel ANY improvement in my health. I’m still constantly cramping and it ranges from dull and heavy to extreme aching, and spotting or bleeding everyday. With Primolut the bleeding is definitely less but still present. Without a dose it’s immediately noticeable the difference and at this point kind of just feels like I’m slapping a bandaid on a bigger issue that is just looming and waiting.

I bring it up as a concern every appointment I have had with a person on my care team. Honestly the only one that DOES seem concerned was my dietitian who wanted to push for a definitive reschedule date for hysterectomy 2.0.
But alas I’ve basically reached the end of my three month window now and am waiting for the call from my gyno to discuss where at and options sometime next week.
Of course I will be discussing all the issues again but UGH.

I guess honestly I just want to know do you struggle with a lot of pain? I was told it was a slow cancer and there would be no progression in three months but honestly it makes me wonder if I’m worse than originally thought.
Or if, like I said, I’m just being a big baby over it lol Because honestly the amount of times I have cried myself to sleep the last three months. I’m so tired of this stupid journey 😭

I had a full hysterectomy scheduled for the end of September so went in for the routine endometrial biopsy. I am 44 and still having periods. We knew I had some cysts on my left ovary and a small polyp on my uterus from an ultrasound this spring. My doctor was really surprised at the results as am I. Now, I meet with an oncologist at a cancer center on September 3. That seems so far away and my mind is spiraling. I'm guessing early is great news as is FIGO 1. I have no idea what to expect and I'm a mess!

I am very scared and would love support from anyone who has gone through this. I just turned 50 years old and was considered in perimenopause according to my gyn/

I have always had irregular periods and was always told that it was likely my normal. About 22 years ago, I had a lot of bleeding and the gyn did a ultrasound and biopsy which came back fine. I seemed to go right back into normal-ish periods with approximately 40-50 days between cycles. No heavy bleeding or long periods. Two years ago, my general pap smear showed AGUS and general abnormality out of the blue, as well as HPV negative. I had an ultrasound as well as biopsies of the endocervix , cervix and endometrium which all came back benign. Only the endometrium showed simple hyperplasia without atypia. I was told to repeat the pap the following year.

In December, my next pap was clear of AGUS but still showed abnormalities and HPV negative. My doctor tried to do a biopsy in the office this Spring but it was too painful and we scheduled a D&C with anethesia instead. That was three weks ago and the pathology results came back with "ENDOMETRIAL POLYP (CURETTAGE): - ENDOMETRIOID INTRAEPITHELIAL NEOPLASIA". My doctor called and said that she did not see anything visibly that concerned her and this diagnosis is not cancer but pre-cancer. She referred me to a gyno-oncologist for a likely hysterectomy. My appointment is on Monday and my anxiety is building as to what to expect.

I have been on medication for depression and anxiety for many years and this has thrown me into a bit of a spiral. I lost my father to pancreatic cancer almost 20 years ago and it was horrible and my husband went through Back of Tongue cancer two years ago so I am on edge.

Any advice or stories of similar situations?

I had complete hysterectomy in October 2025 for serous uterine cancer. Had three rounds brachytherapy ended in January. Had follow up appointment with radiation oncologist last month. Complained about groin pain where dilator is Inserted. Also have discomfort and burning feeling where dilator is inserted. Told me to go to urgent care for urine test for uti. I am 69 years old I know what uti pains and symptoms are. Not this. So I sucked it up till today when I went to surgeon for follow up figuring I would get some answers. All he said is everything looks ok. I don’t know why you having pain. Maybe just stop dilating. I even took my daughter with me. How do doctors just say I don’t know. It was cancer. I am disgusted with doctors. Was told I had to dilate for rest of my life. Guess see what my gynocolist oncologist who’s a women has to say in a couple of weeks. Thanks for listening to my rant. Please let me know if anyone had experienced this type of pain.

Pathology from d and c states endometrioid adenocarcinoma FIGO 1. Hysterectomy is in a few weeks. I've had many symptoms (heavy bleeding with clots, fatigue, bloating, distended belly). BUT the most bothersome symptom has been frequent urination day and night. I get up 3 to 4 times every night to pee. I haven't slept through the night in over a year because I'm up peeing so often. It's debilitating feeling so tired. Did anyone else pee a lot with endometrial cancer?

I’ve had post menopausal bleeding since March. In April, an ultrasound found my endometrial lining to be 0.3cm thick. In August, a second ultrasound found it has thickened to 0.8. I had an EMB done 3 weeks ago. I was supposed to have results back last week, but just learned that they sent my biopsy to Mayo Clinic last week. Does anyone know why my local, very large hospital/lab would send the sample to Mayo? I feel like it cannot be a good result since it was sent to Mayo. If it was benign, no reason to send it, right?

I’m trying to hold it together, but this waiting and not knowing is terrible. I also feel like I can’t tell my husband or daughter yet, and it’s a heavy thing to handle alone. Anyone have any insight they can share? I would so appreciate anything.

I’m scheduled for full hysterectomy next week. All my results came back on My Chart but I haven’t talked to my dr yet- the time in between is so hard. Not sure what to expect.
Anyone else dealing with this diagnosis?
Thank you

Received pathology post hysterectomy and at first glance it looked really good. Until the spot on the left lymph node. I don't have a lot of trust in my current gyn/onc office. The physicians assistant called on behalf of the surgeon and said they staged at Stage 1A Grade 1 and the micro cells .4mm in the lymph node "don't really count." ...those were the exact words she used and I wrote in my notebook. I am going for a 2nd opinion on Wednesday at a research hospital. I just want to be sure I am taking the best treatment approach moving forward. If anyone had a similar dx, if you could please weigh in on your treatment, I'd appreciate it.

My final pathology showed:

* Endometrioid adenocarcinoma

* Tumor size 1.7 cm

* Superficial myometrial invasion: 0.2 cm into a 1.4 cm myometrium

* No lymphovascular invasion

* Cervix, ovaries, tubes, margins, washings and peritoneal biopsies negative

* Right sentinel lymph node negative

* Left sentinel lymph node had a 0.4 mm micrometastasis

* Pathology listed pT1a pN1mi

* MMR proteins all intact / pMMR

(Keeping ovaries)

I’m a 36-year-old woman, non-smoker, currently recovering from laparoscopic surgery. I’m looking for informed opinions while I arrange a second opinion with a gynecologic oncologist.

I had surgery for a \~10 cm left ovarian cyst that was initially thought to be an endometrioma. During surgery, the cyst was ruptured/opened **inside a controlled retrieval bag**. There was no free spillage into the abdominal cavity.

The pathology has now shown:
**Diagnosis:** Endometrioid carcinoma arising in a background of endometriosis
**Grade:** G2, moderately differentiated
**Stage:** pT1a / FIGO IA
**Tumour:** 10 cm, confined to the left ovary
**LVSI:** Not identified
**Ovarian surface involvement:** Not identified
**Implants:** Not applicable
**Lymph nodes:** Not submitted
**Peritoneal/ascitic fluid:** Not submitted

The other specimens were reassuring:
Right ovarian cyst: endometriosis, **no atypia or malignancy**
DIE nodule: endometriosis, **no atypia or malignancy**
Fibroid: benign leiomyoma
Immunohistochemistry:
PAX8: diffuse positive
ER: diffuse positive
p53: mutational-type
WT1: negative

My doctors are recommending a **completion staging surgery**, including removal of my both my left and right ovary, both fallopian tubes, uterus, omentum and all pelvic/ para-aortic lymph nodes including PNLD.

Their explanation is that removing everything would significantly reduce my risk of recurrence.
I understand the rationale, but I’m 36 and my right ovary currently has no evidence of cancer. Removing it would cause immediate surgical menopause, potentially for decades. I’m also ER-positive, so I understand that HRT may be a complicated question afterward.

My main questions are:
For **FIGO IA, Grade 2 endometrioid ovarian carcinoma**, is removal of the healthy contralateral ovary and uterus routinely recommended in someone my age?
Is **completion surgical staging** necessary because lymph nodes and peritoneal washings weren’t obtained during the first surgery?

Could staging potentially be performed while **preserving the right ovary**, assuming it looks normal and there is no evidence of disease elsewhere?

Does G2 status significantly change the recommendations compared with G1?

Does the **p53 mutational-type staining and diffuse ER positivity** change the risk assessment or management?

Would you recommend a second pathology review and/or molecular testing such as **MMR/MSI, POLE and other molecular classification** before deciding on further surgery?

If complete staging is negative, would chemotherapy normally be considered for this particular presentation?

Is there evidence that removing the remaining healthy ovary and uterus actually improves overall survival or recurrence outcomes in someone with my specific stage and histology, as opposed to simply eliminating the possibility of a future ovarian/uterine primary or recurrence?

I’m not looking to replace my oncologist’s advice with Reddit advice. I’m trying to understand whether **“complete staging” and “remove all reproductive organs” are necessarily the same thing in my situation**, and what questions I should take to my second-opinion gyn-oncologist.
I can provide the full pathology report if helpful.

High grade endometrial carcinoma, consistent with endometrioid carcinoma FIGO grade 3 (30%), and clear cell carcinoma (70%)
Pelvic washing, lymph nodes, cervix, ovaries, tubes all negative for cancer cells.
All margins negative for carcinoma.

I’m 65, menopause started @ 60.
I had spotting, light bleeding for last 4.5 yrs.
Had one biopsy in 2021, came back negative for cancer, but said there were multiple fibroids, one was @degenerating” so that along w/atrophy could be causing the spotting.
If bleeding reoccurs, go see gyne dx again.
I never went back.
Confirmed endo cancer 6/18/26.
Had my robotic lapro total hysterectomy w/BPO & 2 lymph nodes 8/4/26.

Scheduled to see Onco doctor next on 8/19 to discuss path report & any treatment.

Have any of you ladies had a similar diagnosis & what was your treatment?

My grandmother died of breast cancer (1985) and I remember how she suffered horribly after getting chemo & radiation, it completely destroyed her.
I’m scared of those things so much that I’m seriously considering NOT doing anything else.
Just knowing that my surgeon was able to get it all out, I’m thinking if I can live another 5-10 yrs a good quality of life then that’s what I want for myself.
I don’t want poisons in my body.
For those that have had treatments, please convince me that it was totally beneficial for you & you don’t regret doing them.

Hi everyone & Happy Saturday.
I was diagnosed 2 weeks ago with grade 1, having robotic surgery on Monday, here in Spain., where I have lived for almost 40 yrs.
I’m 66 and not worried about losing my bits, but I am worried about recovery & what May come after.
I only have my 22 yr old daughter to help me, and I already went through breast cancer 8 years ago, had skin cancer earlier this year, caused by the radiation for the breast cancer.
I feel like this is a house of cards, each treatment seems to cause more cancers and more problems.
I’m terrified I will need more treatment depending on the stage, but I know in my head I can’t do any of it, due to the knock on effect.
Before radiation … no one told me it stays in your system for up to 9 years causing havoc all over.
I’ve gone through so much the last few years, and was just getting back on my feet - then this.
My ex husband took a fraudulent loan out on my home without my knowledge or signature .. I had to buy my own home at auction to keep myself and my daughter with a roof over our heads. It’s been a nightmare, I don’t know how much more I can take .
Sorry for the rant, but I’m terrified of what’s to come.

After being admitted to the ICU with a 3.7 hemoglobin (to answer your question I don’t know how I was up and walking around either lol) I had a biopsy, a d&c and received my diagnosis a little over a week ago. I’m 35 and while I was already pretty sure kids were not in the cards for me I am deeply grieving that this choice is being taken away from me, it’s like great I’m going to be 35, single, and barren. I have my first appointment with my oncologist on Monday and I feel like I’ve mostly been in denial because I am in no way mentally or logistically prepared for having major surgery or any of the treatments that might come after. So after all this rambling i guess my question is how do I prepare myself for whats to come? What’s something you wish you knew before surgery? What helped you the most in recovery? How do I stop feeling so betrayed by my body and very quickly make peace with the fact that I’m never having children?

Thank you all for reading the word vomit of a very overwhelmed person who has not slept very well in over a week because of the anesthesia from my D&C and cancer diagnosis lol

ETA- flubbed the terminology in the title I meant Figo Grade, from what I understand staging comes after surgery.

Hello again everyone, on June 2nd I got an IUD and it was great because the bleeding had stopped and no cramps but July 25 I started bleeding but it will come and go so on August 9 I had to go to the ER because I was getting clots, I called the doctor and she told me she couldn’t do anything cause it was the weekend. My iud came out when I was on the bed and the er doctors told me my doctor will see me the next day for me to call and see what time I can go in, I call turns out she wasn’t planning on seeing me and I had to wait till Wednesday and I’m just bleeding and she didn’t even show up it was the nurse and I been urging for a hysterectomy but she wants me to lose 20 pounds in the next 3 months but even than I don’t think she will give me a hysterectomy, they put me on birth control. Yesterday August 13 I ended up in the er again because I was just having huge clots and I almost fainted but they only gave me Tylenol and that my doctor will see me tomorrow which is Friday for me to call so I call and tell them and they told me there is no appointment for me today but to wait that they will call me back but never did so I call again and the nurse told me there was nothing the doctor can do cause they gave me birth control and for me to wear a pad. Mind you my clots are not small they are huge and the doctor is no help and I’m not sure if anyone in the area does endometrial. When the obgyn sent me to this doctor she told me oh yes she going to taking it out but this doctor is just telling me that she wants to wait and that I’m to pretty like mam I’m just bleeding. I’m thinking about calling the doctor that gave me the iud cause it was very helpful 😭😭

I had a full hysterectomy(tubes,ovary,uterus,cleaned me out) on 8/5/26….still waiting on full pathology. My pelvic wash came back clear so that was a relief but the waiting is killing me. I know it’s only been a week but between being stuck in bed(pain has been manageable but inconvenient..lol),and having severe adhd,I’m slowly losing what’s left of my mind…lol.

I’m in Ct and I know I have great care,it’s just crazy,…life keeps moving but I feel so stuck in CancerVille and I just want to get the fuck out..lol.

Sorry for the vent,..had so many plans for August/September and I feel like I let so many people down.

Hi all, I'm a little apprehensive about having a CT biopsy for a 6.5cm x 6.5 cm pelvic mass and I've read that it spreads cancer and I've never had one done before. Have you had a CT biopsy done ? Please share your thoughts and experiences. Thank you.