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Endometrial cancer - what were your symptoms?

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Informed
Informed

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

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  • rach1994
    rach1994 Informed

    Posted

    I'm 22 years old. Had reccuring problems down there for years. Smelly discharge mainly, but for the last year swabs for BV (bacterial vaginosis) have come back clear so thats not the cause. Had STD checks they are clear, but while being swabbed the doctor noticed bleeding so referred me to the hospital for a transvaginal scan.

    They text you to get you to ring the DRs to make an appointment for results, but before I did they rang me which automatically has sent alarm bells ringing.

    They found fluid on my uterus and have referred me to see a gynocologist in 3 weeks time. She said no polyps/fibroids were seen on the scan.

    I'm petrified its cancer. Sex for the last 6 months has been painful. Sometimes I bleed afterwards. Sometimes I have random spotting. (I'm on the contraceptive pill so it shouldn't happen). Now this fluid on the uterus makes me even more concerned.

    Has anyone else had a scan found fluid on the uterus and then found out it was because of cancer?

    Also, if it was cancer does everyone who has this type have to have a hystorectomy? Sorry if these questions sound silly, I am just so panicked any words of advice and hearing any stories will really help. Sorry for rambling on!

    • roxanne286
      roxanne286 rach1994

      Posted

      I would just make sure you demand a biopsy, a Dilate and curettage.  Don't settle for an in office biopsy.  I've been complaining about watery bloody discharge along with many other symptoms.  It was back in january that I had heavy amounts of this discharge that scared the crap out of me and I demanded surgery.  Because I have a brain condition getting an appointment for surgery took forever.  ANYWAYS....Don't let the gynecologist brush you off for any reason what so ever and tell you that you're too young to worry about cancer.  I just turned 31 and I've been having issues for the last TWO years.  Waiting for my biopsy results.  I have no clue about the hystorectomy but if I come back positive I'll let you know,  I don't have kids and still deciding. 

    • rach1994
      rach1994 roxanne286

      Posted

      Thanks so much for your reply. My appt is in 3 days now so will see what he/she will have to say about everything! I hope you are okay too, I know how infuriating it is having problems for so long and nobody listening or taking you seriously! Good luck with the biopsy xx
  • NicolinainLA
    NicolinainLA Informed

    Posted

    Today is June 14, 2017 last June 2016....I knew something was wrong with me. First I thought I had a STD, but I had a boyfriend? I went to PPH 3x's no STD, regular PAP. But why do I have this crazy discharge? It's bloody, stringy & all the time?! I don't know she said you are just fine. Also I told here My periods had started to get irregular, some lasted up to 14 days. And would Then reoccurr then 2-3x's in the month!!! This is not "Normal" I told her. Well you will be fine, noting is wrong with you.

    My symptoms went from stomach ache to stomach pain. I was tired all the time, to not getting out of bed. I was constantly freezing...I became anemic from the blood loss. To really constantly having my period. That came with Nausea and a Migrainge.

    Sometimes I wake vomiting at night??? Constant urge to go to the bathroom....weight loss, loss of appetite. Constant cramping. Acne in hormonal areas.

    I went back to PPH on my 36th birthday after I told my mom the issues....once again. Clean bill of health!?!

    Then out at the mall I knew I had to make it to the rest room! I thought I heard something hit the ground but I wasn't sure? As I reached for my pants I saw I dropped a blood clot the size of a tangerine. sad

    After that we ran to a REAL doctor!!! He sucked! After my D&C said my bleeding was due to soap ph issues!?! But said I did need a hysterectomy and would schedule it. As to this would stop my issues. So I asked so you operate vaginaly or laparoscopic??? Oh I go old school through the stomach!!! So I ran from him!!! I'm only 36....I am not going to be maimed.

    Now 3 months later I am at the best doctor she feels me 1min she defines my problem. And scheduled

    Surgery go in and scrape it all out and send to the lab to see what's going on!!

    Yesterday 7/11 I found out I have to have a hysterectomy....robotic laparoscopic hysterectomy"

    I was full of polops and fibroids....

    I am not going on depo the rest of my life!! I felt I had cancer one year ago....now they tell me I have cancerous cell/precancerous cells I'm talking it out!

    Consult Thursday the 22nd...3weeks down time.

    If it's contained then there is no others option to me?? I DONT WANT CANCER! I WATCHED MY GRANDME GO FROM BRAIN CANCER...nothing worse.

    PLEASE LET ME KNOW ANYTHING TO EXPECTFROM SURGERY TO TO HAVE READY AT HOME ETC!

    Prayers for you all! I hope you don't mind me posting here but I am looking for answers and others stories and found this page!!!

  • JenJewell
    JenJewell Informed

    Edited

    Good Morning Ladies,

     I'm very grateful to have run across your forum. I wanted to introduce my self and see if any of you can provide me with some advice. I am at the beginning stages of discovering what is going on with me. I am 42 years old premenopausal mother of 4 biological children, and surrogate mother of twins. Total pregnancies seven, we lost one child after the first trimester. My tubes were tied after our fourth child was born in 2011, the twins were conceived through in vitro fertilization and born in 2013. I have been bleeding/spotting for 45 days now. I have had normal periods every month up until April. In April i didn't have a period at all, which scared me I thought omg am I in the 2% that conceive after a tubal. All pregnancy tests were negative. I started bleeding/spotting in May and it hasn't stopped. My stomach is bloated and protruding, I have strange stabbing pains, fatigue, dizziness, nausea, lack of appetite and continuous red spotting with some small clots occasionally. I went to the women's clinic the week before last and they did a pap/pelvic and a ton of blood work. She informed me they were going to go slow in this process since I'm at the age where it is tricky. I assume shes thinking hormonal causes due to being close to the age of menopause. I don't have any of the other symptoms of menopause though. I also work at a children's clinic. on Friday I confided in one of my doctors there what is going on, he did an immediate CBC on me, because I was worried the fatigue was due to anemia. I haven't heard any of my other results yet from the woman's clinic.   My CBC results were as follows from my clinic: 

    WBC 16.8  ( Critical High)

    RBC 4.74

    HCB 14.6

    HCT 42.9

    MCV 90.5

    MCHC 34.0

    RDW-CW 12.6   

    PLT 343

    MPV 8.9

    LYM% 17.7  (Low)

    MIDS% 4.1

    NEUT% 78.2 (High)

    MIDS% 0.7

    NEUT# 13.1 (High)

    LYM# 3.0

    He checked me for any cold or underlying causes that could be making my WBC count high, he wasn't able to find any reason. He told me I needed to get in to see a OBGYN as soon as possible to have an ultrasound done. Unfortunately I don't have health insurance coverage due to the fact that I am the only one working to provide for our family, my husband had suffered a back injury.  I don't want to make the mistake of waiting for the womans clinic to refer me. Am I overreacting but from reading all of your posts I am really worried that this might be cancer. Both of my parents and my sister are cancer survivors.  Any advice or guidance would be greatly appreciated. Thank you ladies and have a blessed and beautiful day. 

    ?Jennifer 

    • joanne54604
      joanne54604 JenJewell

      Edited

      I read through the information you posted and, I am not a doctor just an individual that has had some of your symptoms,you reallyshould see an OBGYN.  I had a pap smear done (annual) in October 2016  that came back normal other than a strangely high bacterial vaginosis level.  In January 2017  I began bleeding, in Februay I finally got in to see my regular doctor after walk in clinics kept sending me for bloodwork.  My doctor scheduled an ultrasound and made an appoint with OBGYN,  When I went to see the OBGYN he did a tissue sample and sent it for biopsy.  I was then diagnosed with Stage 1a Grade 2 Ednometrial Cancer.  By the time I had the full Hysterectomy, the cancer had become Stage 1b Grade 3.  I am not saying you have this but most certainly it is important to catch this very early.  Please see if there is some way you can get checked even if it is by a doctor who does the tissue sample for biopsy.
    • JenJewell
      JenJewell joanne54604

      Posted

      Thank you Joanne for responding to me. I just got my lab results back today from the Woman's Clinic. From the CBC test done on Friday it does show my WBC count is continuing to rise from the previous one.The high WBC count without fever tells me it is most likely not an infection. With all of the results it was able to rule out a lot of possible diagnoses. My pap was normal, my hormone levels were normal not in menopause or perimenopause, my thyroid was normal, no STD's which there was no reason for them to be present, and I'm not diabetic. I have an appointment today at 1:30 with an OBGYN for an exam and ultrasound. I pray we can find out today what is going on.  I will keep you updated on what the findings are. Thank you for your advice and support. 

    • JenJewell
      JenJewell joanne54604

      Edited

      Good Morning,

       Here's is an update of what happened yesterday. He did a sonogram which the results weren't good. My endometrium was extremely thick (endometrial hyperplasia), and I had a large cyst on my left ovary 6mm. It looked like an orange. He did an endometrial biopsy which the results should be in Thursday. After examining me he informed me regardless of the biopsy results I'm going to need to have a total hysterectomy. He placed me on birth control pills to try to stop the bleeding and he prescribed me some medication for anxiety. I'm really scared but I have a gut instinct that this is cancer. So guess when the results come in I'm going to be praying we've caught it in time. All the information online for survival rates are extremely frightening if its spread. Any advice or guidance through this journey would be greatly appreciated. Thank you all! Light and Love to all of you!!      

       

    • joanne54604
      joanne54604 JenJewell

      Posted

      I am so glad so got medical assistance.  Your doctor was probably able to make a decision based on the findings of the sonogram.  My doctor had a pretty good idea before the biopsy results came back. I too had a gut instinct as no one knows your body better than you but for now wait until confirmation.  The hysterectomy is not as bad as some would have you believe.Take one day at a time and proceed after you have all the information necessary for decisions.  My fingers are crossed for you.
    • JenJewell
      JenJewell joanne54604

      Posted

      Thank you Joanne,

       I'm scheduled for a Total Hysterectomy and Bilateral Salpingo-Oophorectomy on July 21st at 7am. I am very fortunate that after speaking with my doctors that I work with and letting go of my pride and explaining our financial situation. That they were able to provide me with health insurance to cover the surgery. They are worried about me because I don't look well. My stomach continues to distend and be bloated, I'm nauseous every day, and I have been having the same abdominal pains, back pains, and headaches. Thankfully there were able to get the bleeding to stop with the medication. My biopsy results came back benign which I was thrilled about, until the nurse called me back later in the day to inform me that the pathology report also stated that there were some cellular disorder and breakdown. Then she told me its a good thing your having the surgery. What does that mean?? Sigh. I'm starting to worry about ovarian cancer now, since I have all of the symptoms. I pray that its nothing because my family needs me to be alright I'm the main supporter for our family. Thank you so much for all of your kind words and positive, healing thoughts, prayers and vibes. I will keep you updated on how it all goes. Take care.   

       

    • joanne54604
      joanne54604 JenJewell

      Posted

      It is good news that you are getting assistance at this time in your life.  I live in Canada where fortunately we have amazing medical coverage (although many here take that for granted).  My thoughts are with you and I can relate to the scenario of the main supporter.  Be strong and know that you can and will get through this.
  • melissa_1970
    melissa_1970 Informed

    Posted

    I have operation on Friday. To take out a 4cm polp but also have only at most 10 days of bleeding.

    My biggest bleed was last night had to use a towel.

    My pain is so intense that l am taking really strong pain killers. The op is on Friday to remove polp which they have told me shouldn't cause any pain. I'm guessing that when they go in with camera they hopefully will find the cause of my pain. I've had to give up work cause lm a labour, so lots of heavy lifting and physical work. I'm so tired and no energy from blood loss but worried about what is causing the over the top pain

    • JenJewell
      JenJewell melissa_1970

      Posted

      I'm so sorry Melissa that you are having to go through this. I can relate to the pain you are in my cyst is 6cm right now. I pray everything turns out positve for you. 

       

    • joanne54604
      joanne54604 melissa_1970

      Posted

      I am sure your medical team will be better informed once they are in in there for the surgery.  I pray that this will have a positlve outcome for you.
  • daleilene
    daleilene Informed

    Posted

    My initial symptom was a discharge...no blood, nothing dark, just a simple clear discharge. It took 7 months to receive a diagnosis off endometrial cancer. Should have been on the doctors mind right from the beginning. Had hysterectomy and was told I was cured. No penetration of endometrial wall. Therefore I no longer thought about cancer. Fast forward,..cancer returned. Did chemo, went into remission. Eight months later cancer returned. Now on clinical trial. Thoughts from others appreciated.
    • michele_14473
      michele_14473 daleilene

      Posted

      I'm so sorry to hear your story.  I am 54 years old, post menopausal 1 1/2 years.  I have been having a simple discharge too.  Slight achy.  I have a gyno appointment in a few weeks.  I'm terrified it could be endometrial cancer too. When I go for my appointment, I'm going insist to be checked with transvaginal ultrasounds and everything that needs to be done to rule out.  I am the bread winner in my family.  Daughter starting college.  Hope all works out with you. 

    • daleilene
      daleilene michele_14473

      Posted

      Hi Michele,

      I am in a clinical trial and so far so good. Thank you for your good wishes.

      A transvaginal ultrasound is not enough.  You should insist on an endometrial biopsy.  That is the only way to know for certain. If you want your obgyn to see you sooner and take this very seriously, mention you have had some bleeding, spotting.  They will see you quickly and do the endometrial biopsy.  It is a little painful, but the only way to know for sure.  Keep me posted and good luck.

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