Endometrial cancer - what were your symptoms?
Posted , 147 users are following.
Women with endometrial cancer have a variety of symptoms that differ between individual women, and, after diagnosis, many women wish they had acted earlier on something they thought was irrelevant.
If you have been diagnosed with endometrial cancer, please feel free to contribute your symptoms to this discussion, so that others reading this might get an earlier diagnosis.
12 likes, 227 replies
zann722 Informed
Posted
I had been having prolonged and very heavy menstruation for years. Initially my gynae was able to help in the prolonged menstruation problem through the use of hormones pills. My endometrial lining was also deemed to be thicker than normal which could be the reason why I had such heavy menstruation. But it was not of any concern then. I had PCOS too.
My problem with my heavy menstruation was really terrible. There were days when I had to change my pads within an hour. I felt very insecure to even step out of my house on days when I am having my menstruation.
I started having spotting that would not stop for months. Doc did an ultrasound and saw abnormal thickening of my lining and recommended me to undergo D&C and thereafter, MRI and CT Scan. That was when I was diagnosed with Stage 1.
sue08648 zann722
Posted
Heard and felt your pain. I had the same problem as yours and was admitted to hospital before for anemia. I am on my 5th months post op due to endometrial cancer stage 1A. Like you, I am also in my mid 30.
Are you Asian? If yes, I suggest you try Chinese traditional medicine. Body heartiness, stress are part of parcel that causes hormone imbalances ( and I get to know it too late). Try to go those recognized ones like hospital.
Sorry to say that, but at the end, you would also need to undergo hysterectomy as mentioned by my onco gynae.
Take care and do post message if you need more information. People at this site are very helpful and their words of comforts gave me lots of strength before and after hysterectomy.
.
sue08648 Informed
Posted
I am 4th month post op hysterectomy due to endomentrial cancer stage 1A. I will be going back to hospital for my first 3-months review next month and am worry now. I normally will be very tensed up the moment I see the speculum. Could some members share experience on what Doctor will perform during review? Many thanks
cindy60904 Informed
Posted
I have been post menopause for 2yrs and in March started spotting and developed sores in vagina. They tested sores and they were negative for whatever they were thinking-some sexual transmitted disease I guess, even though I knew that was impossible. I thought it was reaction to using cottonale wipes. I felt like I had a smell and the wipes kept me feeling cleaner. still not sure if the sores were from reaction to wipes or something else, but they went away. The spotting stopped after I was given some antibacterial cream to heal sores. Occassionally I would feel dry and would have occassional bleeding. My gyne. gave me estrogen cream saying I was "thinning" because of not producing estrogen. It burned when I used so I stopped only using it twice. Still occassional spotting. Last week it was more blood, so I called and got in to see dr. She took a biopsy and it came back as endometrial cancer. I have an Ultrasound on Friday and see an Oncology gynecologist on Tuesday. I am scared, but my dr. feels it was discovered early on. She said only cure is hysterectomy. I am 54 yrs old. Since the biopsy I have had cramping on and off and not sure if that is just nerves or from biopsy. I just hope this was caught early. Tuesday I will know more, but it helps reading others stories. Praying for strength.
Planetfluff Informed
Edited
Firstly I'd like to thank Informed for starting this discussion. Whatever month/year you've found your way to this thread I'm sure you'll find it helpful. I think most of us ladies in our late 40's onwards probably assumed most our symptoms were down to peri menopause? I know any of the gp's here in the UK did!
I'm now 50 and found out through blood tests for slightly irregular periods + hot flushes from about 45 I was peri menopausal. So both my gp surgery and I thought 'ok, Yeh that makes sense'. They saw no complications.
However soon after that my periods started to be more spaced out and heavier. By now I'm 47 more blood tests revealed I was definitely fast approaching the menopause. I opted for No hormone replacement btw. 2013 I had my first transvaginal ultrasound revealing 8mm endometrium thickness plus 2 fibroids. No other significant findings. Again my surgery explained heavy bleeding is totally normal with fibroids. Yet again I thought, ho hum they seemed to explain the cramps/heavy bleeding and small black clots. (Until now I'd always worn tampons so never really noticed clots as such). As the months went on and my periods became more spasmodic/heavy/larger clots/flooding I had my 2nd ultrasound. Transvaginal again revealing 16mm endometrial thickness (it's now 2015). Oddly only 1 fibroid could be seen but I understand 'gas/wind' can obscure the sonographers view.
Yet again my surgery order blood tests revealing I was indeed in the menopause. No further action/intervention was offered othe than a hor mine pI'll to take to stop the bleering with in a coutlet of days. They explained it was not HRT and is used by brides who want period free honeymoon sex!! Again I felt that made sense after all they had scanned the uterus and took bloods they seemed happy.
I think I went for approx 8 months with no period? Sorry to be vague but up until this point I was constantly told this is all normal for a woman of my age and fibroids! Christmas eve brought the gift of a monster bleed. I thought...ok it's the stress of Christmas and I've got fibroids. My gp's weren't concerned they even told me ovaries can actually wake up and cause bleeding again for some unfortunate women. I thought it was just unlucky. Through out 2016 my periods were heavy, painful and spasmodic. Back again to gp. I was prescribed tranxemic acid this time if I wanted the bleeding to stop. I never took this. By now I'm getting fed up with all the bleeding. A 3rd ultrasound (external only) revealed a thickness of 17mm and a bulky uterus.....still no action from my surgery was taken. A few months go by and I'm back again at my surgery still bleeding. It's now August 2016 and this time I see a young male gp who I had not seen before. He looks over my previous scan results and he's immediately printing out my urgent 2 week gynecologist referal while explaining he feels I have uterine cancer symptoms???? Seriously. My first appointment with them produced a failed pap smear + biopsy due to cervical stenosis - ouch. 2nd appointment was with an oncology surgeon who explained ANY thickness over 5mm is highly suspicious at my age/months of non bleeding to any bleeding.
4th TV ultrasound plus GA hysteroscopy with biopsy and a lump removed from vaginal wall 10 days ago.
So to sum up - you're only reading this because you're A. Worried about your symptoms or B. Looking for reassurance what you're going through can't be cancer?
As you can see from my experience you simply can't afford to brush aside your gut feelings like I allowed myself too. Please be the brave person you can be and go armed to your gp armed with knowledge of uterine cancer and ask questions and don't get fobbed off with 'this is normal' because misdiagnosed cancer benefits no one least of all you of course x
edith66984 Planetfluff
Posted
Hi planetfluff, thankyou so much for your story, it gives me the determination to keep nagging for answers.
I have had extreme periods for the last 6 years after having my last child (I have 7 in all). I had my usual period 4 months ago and it just hasn't stopped! I was hospitalized with extreme anaemia and had an internal ultrasound which picked up 2 ovarian cysts but nothing else to worry about. I've just turned 50 and I'm guessing they think it's peri/menopausal symptoms.
They have given me tranxemic acid and primulat which slows the bleeding but doesn't stop it. I have intermittent night sweats, gas that would peel paint off the wall lol, bloating, just started having bad lower back pain and nausea. They have booked me for a hysteroscopy in the next few weeks.
I'm scared they'll find nothing, like you, & send me away. The surgeon said he wants me to have a mirena put in but I want the whole thing out. Surely my symptoms can't be normal for my age really??? I feel there's something not right. Edith
LizzieS Informed
Posted
Could anyone tell me how much pain you were in straight after the surgery, and what could you do the next day (e.g, walk, bend down, dress yourself etc), and how long until were you able to cook a simple meal, look after yourself in general.
Will I need help?
sue08648 LizzieS
Posted
Hi Liz,
I had the abdominal cut hysterectomy. Warded for 3 days. You need someone to help you especially during the 1st week after operation. You can't carry heavy things for the next 7 weeks (or 5 weeks if you have the robotic surgery). You should check with the hospital as they usually give checklist or booklet on what to expect after operation.
I start driving car 2nd week post op but only to nearby store as body still weak and fatigue. Need someone to push your shopping trolley and carry sundries.
I also have 3 dogs as pet. I start taking them out for walk 3 months post op as any pull on the leash will cause a tremendous pull on your abdominal muscle.
My pre op checklist include - buying 3 months supplies of dog food, buying few pieces of loose cloths and 1 size larger panties as stomach will swell after op, arranging family members to send me for hosp check up, cleaning after me (dirty laundry, bed linens, mess created by my 3 dogs) and cook simple meal, running all errands in advance, withdrawing some cash for emergency expenses, stock up food items, fill up detergent, shampoo and etc in smaller bottles so it not heavy for me to carry and etc....
Do get well soon after your op.
LizzieS sue08648
Posted
Hi Sue
I cannot thank you enough for taking the time to tell me this. So very kind of you. It is exactly what I need to know.
I know everyone's pain is different, but how bad was the post op pain? And would I be able to climb a flight of 13 stairs a day after op do you think?
Your checklist is wonderfully helpful.
So glad you also have dogs so you understand. Luckily here there's plenty of land so at least they can run free.
I am scared as I've only recently moved here so no friends yet and have no family. I'll have to see if I can hire someone to help me.
I hope they get it all out in the surgery as I don't think I could bear chemo.
How long ago was your op and how are you now?
Warm wishes
Liz
sue08648 LizzieS
Posted
Hi Liz,
Sorry to hear that you too suffer from endometrial cancer. I had hysterectomy due to this as well. Mine is stage 1a, low grade and no chemo or radiation after surgery. You could check with your doctor if you have a biopsy done from d&c or hysteroscopy procedure (my hysteroscopy biopsy reveal low grade cancer early and early stage but final cancer staging could only be done from hysterectomy).
How bad was post op recovery? Well it depends on what type of hysterectomy. The abdominal ones usually takes longer to recover and more complications. I still suffer lower back pain, sore muscle surrounding pelvic area, bladder problem on and off, mood swings. I am 7 months post op now but everyone has different symptoms. I opted for abdominal hysterectomy as Doctor wanted to have clearer view as whether I could preserved my ovaries ( if it is healthy and no sign cancer spread + negative pelvic wash).
Stairs climbing? Well, should be okay but do it very slowly on 1st few weeks as you don't want to go back to emergency ward. I think I overworked myself during 2nd week post op and need to be rush to ER due to varginal bleeding .
Think positively and don't worry too much. Get some support maybe from local church members or contact cancer support groups. Get help instead of worry or suffer in fear alone.
Oh by the way, I use abdominal binder to support my weak abdominal muscle and back pain. I find it good on me but as said everyone is different.
When is your surgery date? Keep all of us posted.
soul53699 Informed
Posted
Hi guys...
Don't know if anyone can help here but iv had no period now for over 90 days.
Recently had dark brown tringy mucous discharge followed by red tinged stringy discharge 24 hrs later on wiping tho....
Have had back pain on and off.... Bloating.... Pelvic pressure.... Kind of like a dull ache in my pelvic area.
Also have more hair.... Feel drained.
Was tested for pcos... Neg... Not preg...i know i have a cyst which has been under investigation and came up as complex on mri....
Should i be worried or shall i just wait till my routine app...
Sorry for my tmi....
donna7777 soul53699
Posted
Hi Soul,
I am not a doctor, but can address a couple things you've mentioned. Some cysts are mucous, some are fluid & the other kinds I can't remember but you can search "types of ovarian cysts" on this site (I searched the professional option) as that is where my info is from.
The brown stringy stuff you mention sounds like your body cleansing itself after not having a period for 3 months. My periods would only take place every 3 months and after I was in my 40's brown always followed. The backache maybe related to this unusual period for you if your periods usually gave you back pain on menstruating. Bloating & pelvic pressure (with my 90 day between period cycles) always accompanied in my case. Ask yourself if when menstruating, you usually had these same symptoms. I always did. If this was a ruptured cyst, you would be bent over in pain.
The fatigue and the additional hair point to your adrenal glands which sit on top of the kidneys. Have you had a great deal of stress lately? A more difficult time managing stress? This could indicate exhausted adrenal glands. To calm your fears, you shouldn't take my word for it, or anyone else's, you should see your doctor & google natural ways to restore adrenal glands to optimal function.
Take courage & try to not allow fear to cause undue stress or anxiety. It's not easy, but it can be done. You'll feel a lot better after seeing your doctor. God bless!
soul53699 donna7777
Posted
Iv not actually bled though at 3 months just a couple of smears that were tinged in blood and some pink drips this morning. Nothing really on liners.
Not really worried or stressed about anything....take most things in my stride. GP checked bp etc last time....due to have a d+c type procedure end of the month to see why im not bleeding. May just wait till then as seems to have settled.
Iv had the growth for a while so i doubt its that. And i dont feel pain to be sharp unless lying on left....which i avoid.
Oooh breast pain was the other thing....and i dont usually get any pain anywhere on periods....having not had one a while iv had more.
donna7777 soul53699
Posted
Hi Soul,
I'm so sorry you're in pain especially as this is not "the norm" for you. May I ask some questions? Just in case you don't mind (if you do, I won't be offended if you don't respond):
1. What is your age?
2. How long have you had that complex cyst and how large is it?
3. Was it discovered by tranvaginal ultrasound or CT scan?
4. Has you doctor tested your blood for CA-125?
5. Is a d&c standard procedure for complex cysts?
6. Have you heard about/read about/been warned about the danger signs of torsion?
7. What about adhesions?
I was reading some posts in the "ovarian cyst blog" on this site & went to the one with the most responses (40, I think), where I read of women with cyst related challenges. Adhesions are mentioned and I think it may be wise to check through the posts and see if any symptoms described relate to your situation. If not, great! I learned quite a bit myself.
I'm glad you're the kind of woman that is able to take things in stride. I have to work really hard telling myself constantly "until the evidence is in, I have nothing to fear." Glad you're not like me in that respect! Hope the pain lets up soon & yes, I would stay off my left side too!
soul53699 donna7777
Posted
1. What is your age?
mid/late thirties
2. How long have you had that complex cyst and how large is it?
its 6cm, its been a few years
3. Was it discovered by tranvaginal ultrasound or CT scan?
not had either, only MRI, that showed complex
4. Has you doctor tested your blood for CA-125?
yes, awaiting results (assuming they ok, or they'd have rung).
5. Is a d&c standard procedure for complex cysts?
No, was told if a period doesn't start then they would do D&C to analyse tissue and check for abnormalities.
6. Have you heard about/read about/been warned about the danger signs of torsion?
Yes, however my pain threshold is quite high, rarely take any pain relief no matter what.
7. What about adhesions?
No idea about these.
getting pink tinged mucous at the moment - still awaiting call back from the consultant....
may chase this tomorrow....not sure.
donna7777 soul53699
Posted
Hello Soul!
I'm rather surprised you haven't had responses from other women. There is valuable life experience in the collective wisdom of women.
Thanks for answering my questions. I'm not a doctor, just a medical researcher & postmenopausal woman with a growing cyst 7x7x6 cm. As you are still in childbearing years, your risk for ovarian cancer is thankfully much lower than mine.
I have done extensive research and nowhere in the entire world do I find a d&c listed as a diagnostic tool nor treatment modality for any type of cyst. I myself would not go that route. It may fix other issues (and you may need or want that), however it cannot address ovarian anything.
"Watchful waiting" seems to be what is prescribed for women in our position, and if the cyst does not resolve, laparotomy & laparoscopic surgery may be in our future, but not necessarily. If it does come to surgery, you want a GYNECOLOGIC ONCOLOGIST doing the work. It is best performed at a high volume hospital that routinely performs successful laparoscopic surgery on ovarian cysts. Pathology is performed while the patient sleeps & organs are taken or not based on pathology. Don't sign your organs away - discuss risk factors with the GYN/ONC and only do what suits you best.
Wishing you the best!
Donna
soul53699 donna7777
Posted
All my bloods are back as norm ...do u have bloating where you look preg?
donna7777 soul53699
Posted
For me, menopause took about 10 yrs & was preceded by progressively longer pms/pmdd symptoms: moodiness, sometimes anger, emotional rollercoaster thinking & behavior, water retention, bloating & looking pregnant at times. My symptoms would last from 2-3 days before my period (early in the 10 year perimenopausal stage) to a solid 2-3 weeks prior to having my period during the last several years of perimenopause.
As bloating (& looking pregnant) can precede a period, yet also be a marker for ovarian cancer, & you have a complex cyst, you'd do best to err on the side of caution by continuing with your doctor and having periodic transvaginal ultrasounds or CT scans to monitor cyst status. Those tests have a higher rate of accuracy, but MRI is at about 82% accuracy as well. You always want to insist on expert medical professionals with the most experience in any medical care you receive. You're paying anyway, right? You might as well have the very best. Glad your blood work turned out normal!
donna7777
Posted
And yes, I do have intermittent bloating, but just before the discovery of the cyst the pregnant look extended to my "flanks" (expanding the size of my already disproportionately large waist circumference - another risk factor). As this fluctuates, I've been unsure whether it's diet related, medication related, or cyst related, but it comes and goes.
sharon10049 donna7777
Posted
I have been reading tonnes of material on Cat125 etc. I am worried. I will give brief history and if anyone can assist I would be so grateful.
I am almost 50. Always had irregular periods something as long as 8 months. Super super heavy. Leg cramps sore back sides around ovaries. When younger told you are just one of unlucky ones. Had trouble conceiving. Unsuccessful fertility treatment. At 38 had a baby patio syndrom lost her. Now have a healthy 7 yr old boy.
A yr and half ago. I had scans etc. Told I had a bunch of grapes on ovaries. And a thing not a polyp the other thing in wolm. Told not to worry as almost through menapause. Almost 3 weeks ago I took a bad bleed. Went to go. Got internal and Cat125. Blood abnormal. Hormones way high and way low Cat125 at 74. Referred to hospital urgently.
I still and always get pain in lower back and my sides. Past yr legs feel sore. Cramping aching too. Now I need to pee asap. I put everything down to being abnormal and then the changeneral of life. Now I am not so sure.
Any advice would be great
Sharon