Need encouragement and advice

Jules99
Jules99 Member Posts: 14 Member
edited October 6 in Uterine Cancer #1

Hi - I am new and not yet diagnosed with anything but am starting to process of trying to figure out what is going on. Reading this board has been so helpful. I've hit a snag and would like your thoughts.

So, I am post menopause several years. I am overweight and have never had children. For several months I've had multiple instances of spotting/discharge that has been sometimes clear, sometimes red, and sometimes black. I've also been getting weird urinalysis outcomes (blood in urine, increased wbc, etc. and had my first ever UTI). I also had a blood test for something else that showed inflammation.

My previous gynecologist retired so I made an appointment with someone else in the same clinic (which is part of a big teaching hospital). That doctor, while nice, wrote off my symptoms as being on blood thinners and irritation from my iud (which is not new). She took a sample of vaginal fluid to test for infection, which came back as negative for infection.

I requested a trans-vaginal ultrasound which she agreed to order. I had it the next day and the results, which I can see on MyChart, showed an endometrial thickness of 6.1 (even though I have a mirena coil which I understand is supposed to thin the lining. Also, 2 years ago it was at 3.1). The results also showed a mass that may be blood/clot, but they can't rule out other things it could be.

To me, this begs for further testing. However, this doctor, has not even acknowledged the test results. She acknowledged the test for infection and the urinalysis, but has not notified me in any way about the ultra sound.

I am now actually trying to get an appointment with another doctor at the same place. I don't have any confidence in the first doctor since she was not even going to do an ultrasound (I had to ask for it) and she hasn't responded to the results. I haven't bothered to ask her about the results since I have lost confidence in her.

At this point, I'm not even stressed about the possible diagnosis - I am stressed about getting an accurate diagnosis. I'm worried that the doctor's lack of interest in further testing is going result in something being overlooked.

I'm interested in your thoughts - am I over-reacting?

«1

Comments

  • Forherself
    Forherself Member Posts: 769 Member

    Welcome. I am wondering why you have an IUD if you are post menopausal. It might help to have it removed. I don't know how they could do a biopsy with one in place. That being said of course see a different doctor. You don't trust this one. And I have read articles that have recommended a biopsy for any post menopausal woman with bleeding, so I think you can find one that agrees with you.

  • Jules99
    Jules99 Member Posts: 14 Member

    Thank you for your reply. I have an iud because I have fibroids that were causing bleeding issues years ago. I'm on my second iud and my gynecologist (the one that retired) recommended leaving it in until it was due to be removed (5 years after insertion).

  • Forherself
    Forherself Member Posts: 769 Member
    edited July 19 #4

    Maybe you could consider a hysterectomy for all that bleeding. They don't have to remove your ovaries. Just an aside. Its hard to tell if the bleeding is from cancer or not. At least you would have peace of mind and end your bleeding. But I understand just not an option for some women. As for our reaction, you can guess since all the women here have had uterine cancer. Yes, we would encourage you to pursue your investigation and make sure you don't have cancer.

    Sue 🙂

  • Kathy G.
    Kathy G. Member Posts: 240 Member

    Welcome Jules!

    It is great that you are being so proactive about your symptoms and listening to your gut.

    Requesting the ultrasound was a good move on your part, and the findings need to be further investigated...especially given the postmenopausal bleeding and thickening of your uterine wall.


    I would think given the circumstances a biopsy would be the logical next step. And many of the ladies on here suggest a D & C vs.an office tissue specimen that can miss cancer cells bc only a small sample is extracted and examined.

    Continue to push for answers until you feel satisfied cancer can be ruled out. I got off easy with an early grade & stage, but many others here have not been as fortunate.

    Blessings!

    Kathy

  • Jules99
    Jules99 Member Posts: 14 Member

    Thank you! It is from reading other women’s stories on this board that has encouraged me to be proactive and to know what to look for/ ask for.

  • Jules99
    Jules99 Member Posts: 14 Member

    I would have jumped at a hysterectomy, but it was never presented as an option. Anyway, thank you for your thoughts!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,082 Member

    Jules, I agree with the others here - good for you for demanding answers! It is sad, but that is the way it is now. Demand some answers and definitely ask for a different doctor, this one obviously does not sound to have your best interest at heart.

  • Jules99
    Jules99 Member Posts: 14 Member

    Thank you so much! I requested to see a different doctor and it was approved. I go to see her in about a week. Hopefully she will be more proactive.

  • Forherself
    Forherself Member Posts: 769 Member

    Well congratulations for being your own advocate. Sometimes it feels strange to be assertive. But it is your health and you are being the best you can be. I hope your new MD is a better match for you.

    Sue

  • thatblondegirl
    thatblondegirl Member Posts: 325 Member

    Dear Jules,

    I want to welcome you, also. Good for you advocating for yourself! I agree with my friends here….Get a doctor you trust and one with whom you can feel comfortable.

    Please continue to let us know how things are going for you.

    😎, A

  • Jules99
    Jules99 Member Posts: 14 Member

    Just giving an update - I met with the new doctor and really liked her. She thinks that the blood thinner and iud are causing my problems, but since it is weird that my endometrium has thickened, she is going to do a hysteroscopy/d&c to be sure. She is also going to remove the iud during that procedure. I'm glad she is being more proactive and ruling out anything more serious rather than just making that assumption.

  • Kaleena
    Kaleena Member Posts: 2,083 Member

    Glad you are advocating for yourself. Always ask if you are unsure of anything.

  • Forherself
    Forherself Member Posts: 769 Member

    Thank you for the update. It sounds like you are now getting good proactive care. Good work! AND you might ask your new doctor about a hysterectomy. You do have some risk factors for endometrial cancer, and all that bleeding is not healthy. Anyway you have really organized your care now.

  • Jules99
    Jules99 Member Posts: 14 Member

    Thanks. I figure I’ll wait and see what the results are and go from there. The procedure isn’t until mid/late September, however, so I’m mostly putting it out of my mind for the time being. 😊

  • Jules99
    Jules99 Member Posts: 14 Member

    I'm always a bit annoyed when someone posts early on in the process but then never follows up with the results. So, I am writing with an update. I had my hysteroscopy/D&C yesterday. Everything went smoothly. The doctor did find (and removed) an endometrium polyp as well as some endocervical polyps. Interestingly, none of these had shown up on the transvaginal ultrasound. So, I am glad that I pushed for the hysteroscopy/D&C. The tissue sample and polyps were sent to the lab. I got the lab results on the endometrium polyp/tissue today and it did not show any signs of pre-cancer or cancer. I'm not sure if I will get another lab result for the other polyps, or if that included everything. Hopefully, removing the polyps will stop my post-menopausal bleeding/discharge. (I'm still not sure why my endometrium lining had thickened some, but there was no hyperplasia or cancer, so I guess I won't worry about it). So, good news!

  • Forherself
    Forherself Member Posts: 769 Member

    Very good to hear this. My pathology report included mention of every area they biopsied in the initial laparoscopy and D & C. Hopefully that is the final report for you. And I hope it solves your bleeding. Thanks for checking back. It is good to hear.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,082 Member

    Jules, thank you for letting us know. Very good news indeed.

  • BluebirdOne
    BluebirdOne Member Posts: 590 Member

    Jules,

    I am late to this conversation, but I am so glad you followed up with us to let us know how you are doing. Your outcome is what everyone wants after post menopausal bleeding or discharge. Your negative result warms all of our hearts!

    Denise