New Here

Hi all~ I am new here and I am hoping you can share some of your experiences with me. I recently started spotting , in late Oct., after 17 months cycle free. I did some research and learned this condition is not normal and requires being seen asap. I saw my family doc on Nov. 7th where it was discovered that he has been treating me with unopposed estrogen therapy for a little over a year. I have no idea how this happened since I do still have a uterus. Has this happened to anyone else here and what was the outcome for you?

I was sent home from that appointment being told to stop the Estradiol 1mg for 10 days and take a new prescription of 10mg Provera/daily for 10 days. After the 10 days, I should resume the Estradiol 1mg/Provera 2.5mg. There was no mention of an ultrasound or a biopsy. Something did not sit right so I contacted a family member's Gynecologist for a second opinion. They scheduled me , unseen, for a TVU on Nov. 15 with an appointment immediately following.

I went from the TVU appointment to the Gyno's office where I was told that I have a 7mm lining and need a biopsy. The Gyno attempted a same day biopsy but it was unsuccesfful due to extreme cervical stenosis. YIKES!!!! I was told I could try a 2nd biopys with some medication and dilation, in office, or have it done surgically. I chose in office. A successful biopsy was done Nov. 18. It was somewhat less painful with the medication and dilation. Now I   am in the hurry up and wait stage.

I was told results would be available in 3-5 days and that the office would call me. I am now on day 10 and have not heard anything. Of course 4 of the days are weekend days and 1 was Thanksgiving day. Does that affect the count? Is it better that I have not heard back? I have read some posts that seem to indicate no news is good news. I am on pins and needles.

Thanks in advance for any insight.

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Noelle, waiting is always the

    Noelle, waiting is always the hardest part, but try not to get too far ahead of yourself.  I don't think they count the weekends or holidays, and it is possible that they were closed the day after Thanksgiving - so it might be a timing thing.  Give the office a call on Monday and ask them for the results.  

    I think you might want to consider a different family doctor, but please know, if anything shows up, there are wonderful ladies here to answer any of your questions.

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    Doctors, hospitals, clinics,

    Doctors, hospitals, clinics, pharmacies make mistakes all the time and a lot of it is covered up.  My husband received the correct prescription but wrong dosage because another guy by the same name but with a different middle initial was also being treated for asthma by the same doctor because they got the files mixed up.  I received 100x the dosage for my allergy shot - they misread the decimal point.  After my hysterectomy I was about to be given a shot of heprin when I asked them what they were doing.  When they told me, I refused the shot and said you'd better check with my doctor because I already have problems with my blood NOT clotting.  A couple of hours later, that same nurse came back and I asked her what the doctor said.  She pretended that it had never happened!!  Either she or the doctor screwed up but nobody was going to admit it.

    Thank heavens for the internet!!  We have to be our own advocate - I have learned that the hard way!

    Let us know what happens with your test results!

    Love,

    Eldri

  • Nellasing
    Nellasing Member Posts: 528
    Hi Noelle,

    Just wanted to say hello to you and let you know we'll be thinking of you tomorrow as you call your Dr.  I hope you have no more problems and things go smoothly for you (((HUGS)))

  • Noelle2016
    Noelle2016 Member Posts: 18
    edited November 2016 #5
    Thank You Ladies

    I sure appreciate the kind comments from all of you. It is uplifting at a very scary time. I am feeling angry at having to end nearly a 25 year relationship with my Doctor but this has definitely created a breech of trust for me.

    Eldri, you are right! We do have to be our own advocate's. I have learned that the hard way as well. Even if this all turns out ok, there has been pain with the biopsy, unexpected medical bills,  and of course worrying about the results. I will be much more proactive and research the things doctor's want to do and the medications they prescribe from here on out.

    I am thankful for the internet!! That's how I learned I needed a second opion for this situation.Smile I may otherwise have just blindly followed the instructions I was given by the first Doctor.

     

  • Noelle2016
    Noelle2016 Member Posts: 18

    I got good news today! My biopsy came back negative. I am very happy with the results but I still feel a bit scared to trust the medical profession. The Gynecologist called me and unfortunately I did not have my list of questions with me. I tried to remember as many as I could.

    I asked her if she felt I should follow up with a D&C and she told me she does not feel it is necessary. She said that the samples were small but it was enough for the lab. Should I be okay with this answer? She is not an Gyn/Onc. She asked if I wanted to try the correct estrogen/progesterone prescription in a low dose. I said NO. She was fine with it and encouraged me to try over the counter Estroven for menopausaul symptoms. I hope this is a good choice. I don't know my hormone levels as I have not had them tested. Do you reccomend to get them tested?

    What is bothering me is that I don't feel great ever since the biospy. It has been over a week now and I am experiencing a very light brownish discharge daily and occasionally a clear watey discharge, bloating (I look pregnant), a heaving feeling in my abdomen, pain (not cramps) in my abdomen, and low back pain. No nasty discharge or fever so I doubt it is an infection.  I actually feel worse now than I ever did when I was having the PMB that started all of this. I did ask her about this and she said that it takes a week to two to recover from the biopsy. It will be 2 weeks in 4 days so I will ride it out until then and see if I improve. If I don't I will call her office and make a follow up appointment.

    I asked if I would start having cycles again because I am not sure I was ever post-menopausal when I was started on the estrogen therapy. I had only gone 5.5 months with no cycles before starting the med. After starting the Estrogen, it was a total of 17 months with no cycles before the spotting started. She said I should not be having any cycles and if I go 12 months without bleeding and then have bleeding I will need another biopsy. I asked if the endometrial lining would thin and she suspected it would but I don't know how without any cycles. Do any of you know? She said the Unopposed Estrogen Therapy did not harm me but how did the lining get so thick and why did I start bleeding after 17 months with no cycles. Thoughts?

    The TVU did show a fibroid that she feels is nothing to worry about. Should I trust that opioion? I sure appreciate all of the support and kind words you have given me in the waiting process.

    Warmest Regards,

     

     

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited November 2016 #7

    I got good news today! My biopsy came back negative. I am very happy with the results but I still feel a bit scared to trust the medical profession. The Gynecologist called me and unfortunately I did not have my list of questions with me. I tried to remember as many as I could.

    I asked her if she felt I should follow up with a D&C and she told me she does not feel it is necessary. She said that the samples were small but it was enough for the lab. Should I be okay with this answer? She is not an Gyn/Onc. She asked if I wanted to try the correct estrogen/progesterone prescription in a low dose. I said NO. She was fine with it and encouraged me to try over the counter Estroven for menopausaul symptoms. I hope this is a good choice. I don't know my hormone levels as I have not had them tested. Do you reccomend to get them tested?

    What is bothering me is that I don't feel great ever since the biospy. It has been over a week now and I am experiencing a very light brownish discharge daily and occasionally a clear watey discharge, bloating (I look pregnant), a heaving feeling in my abdomen, pain (not cramps) in my abdomen, and low back pain. No nasty discharge or fever so I doubt it is an infection.  I actually feel worse now than I ever did when I was having the PMB that started all of this. I did ask her about this and she said that it takes a week to two to recover from the biopsy. It will be 2 weeks in 4 days so I will ride it out until then and see if I improve. If I don't I will call her office and make a follow up appointment.

    I asked if I would start having cycles again because I am not sure I was ever post-menopausal when I was started on the estrogen therapy. I had only gone 5.5 months with no cycles before starting the med. After starting the Estrogen, it was a total of 17 months with no cycles before the spotting started. She said I should not be having any cycles and if I go 12 months without bleeding and then have bleeding I will need another biopsy. I asked if the endometrial lining would thin and she suspected it would but I don't know how without any cycles. Do any of you know? She said the Unopposed Estrogen Therapy did not harm me but how did the lining get so thick and why did I start bleeding after 17 months with no cycles. Thoughts?

    The TVU did show a fibroid that she feels is nothing to worry about. Should I trust that opioion? I sure appreciate all of the support and kind words you have given me in the waiting process.

    Warmest Regards,

     

     

    If you are having any doubts

    If you are having any doubts at all don't hesitate to,get a second opinion..   It never hurts, sometimes people even get a third opinion.

    Wishing you well and sincerely hope,that it is as your,doctor says.

    Hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528
    Good news!

    So happy to hear your good news and though I don't have answers to all your questions I am with Lou Ann- IF you are having doubts I'd get a second opinion or a third just to be sure.  None of that sounds normal to me, but then I don't have a lot of experience and am pretty skiddish because of my own journey.....so really it is going to be up to you what you decide to do.

    FYI I had an ultra sound in 2010 and there were fibroids as well as a thickening of the endometrium- they couldn't visualize the ovaries for some reason etc. etc. and they decided it was nothing.  We come to I believe Aug. 2015 and I am beginning to spot.  I have had nightmare periods and long pauses over my lifetime so I didn't think much of it but the spotting never stopped and I was actively bleeding by February 2016 and finally got my Dr. to see me March 2016 and get another ultra sound- which lead to coposcopy and biopsy and was diagnosed April 4.   I kind of had to chase them down to get the ball rolling but I ended up Stage 3a Endometrial Adenocarcinoma grade 3.  Total radical hysterectomy April 28th. 
    I guess all that to just say if something doesn't feel right- listen to your intuition.  I hope and pray everything is well!!!!  (((HUGS)))

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited November 2016 #9
    Noelle, I agree with the

    Noelle, I agree with the others. Get a second opinion to give yourself peace of mind. Also, going to a GYN/ONC would be an option that gives you the best chance at a complete answer to all of this. BTW, I believe fibroids and polyps will read as a thicker lining. I may be incorrect on that but it is my understanding.... Ladies, if I'm wrong please don't hesitate to correct me!  

     

     

  • Kvdyson
    Kvdyson Member Posts: 789
    edited November 2016 #10
    Noelle, that is really good

    Noelle, that is really good news! Hopefully you can celebrate a little before you continue on your journey to find out the real culprit. Congratulations to you and good luck!

  • Noelle2016
    Noelle2016 Member Posts: 18
    Thanks for the support

    I really appreciate all of your kind comments and concern. I am in Idaho. Are any of you in this area and do you have a GYN/ONC that you would reccomend? I actually went to an NP , in a Gynocology office, for this biopsy. She did seem to be very competent. The only thing that was a bit off was that she seemed in a hurry when she called with the results and seemed to go through my questions very quickly. I did not understand why she did not want to see me in follow up to figure out the PMB.

    I definitely will celebrate and believe the best!! I think that's so important to healing!!

    I do think I may want another opionion though and I may even push for a D&C if I continue to spot. Is is a terrible procedure? I did have the 1 fibroid but I don't know if there was anything else in there. Nothing else was mentioned.  There was 1 ovary that they could not see on the ultrasound. I get a lot of sharp pain on that side. It sort of feels like appendicitis but not bad enough to go to the ER. I just feel so yucky still. Abdominal pain, bloating, low back pain. It feels like a weight , in my pelvic area, like being in the last stages of pregnancy. Could this still be the healing process from the endometrial biopsy on 11/18?

    Thanks for listening ladies. I sure appreciate it with all you all have been through yourselves!

    Warmest Regards,

  • Lou Ann M
    Lou Ann M Member Posts: 996
    What part of Idaho, I am in

    What part of Idaho, I am in Montana and know,several really good doctors,here.  Lou Ann

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited November 2016 #13
    What part of Idaho, I am in

    What part of Idaho, I am in Montana and know,several really good doctors,here.  Lou Ann

  • DrienneB
    DrienneB Member Posts: 182
    edited November 2016 #14
    Nothing Wrong With Another Medical Opinion

    Hi Noelle,

    I did not have an endometrial biopsy, so can't give any input about healing time and the after-effects of that procedure. I hope you are just healing and perhaps experiencing the symptoms that go along with a benign fibroid.

    I would, though, urge you to get a second opinion. If you can see a gynecological oncologist, all the better. If you are near a university or teaching hospital, maybe you could check there. The in-office biopsies have a higher false negative risk than the D&C. The procedure would give more data to go on and you would know that you had done your thorough best. My opinion is that the establishment can be way too cavalier about fibroids and that the risk of fibroids being cancerous is higher than they've thought for years.

    I had a fever after my D&C, but only for a day or two. I was back to normal maybe 3-4 days after. I did get a small injury on my labia, but that healed over time as well.

    Like you, I had a beloved ob/gyn for 25 years whom I respected. She dismissed my first cancer symptoms seven years before my diagnosis (frequent bleeding), and was a big proponent of hormone therapy. I did not go that route, but unfortunately for me, continued to belive her repeated diagnosis of perimenopause every time I reported problems. Things were very, very bad for me for about 3.5 years. We finally had a d/c biopsy scheduled that she would do in the local hospital, because I was in too much pain for the office biopsy. A few days before surgery, she called me into her office to tell me that she'd seen my unltrasound results, and we should cancel the D&C biopsy. She'd give me hormones to bring on early menopause to shrink the fibroids. (I was age 51.) By the grace of God, that same week I'd had a random discussion with a woman in a dress shop and learned that bleeding between periods could indicate pre-cancer cells. This was startling news to me! So when my doctor suggested we cancel it, I said "no let's do the biopsy."  She said "okay, but let me zap the fibroids while I'm at it. That should stop your bleeding." The hysteroscopy/D&C done on a Friday morning and the following Sunday evening she called me with the bad news that I had cancer. The way she'd talked about the procedures, it was clear that the biopsy itself seemed inconsequential to her and something to do just because I wanted it. In fact she did it after the hysteroscopy.

    If I had taken my trusted doctor's last suggestion, to cancel the biopsy, it's doubtful I'd be alive today. When I had cancer surgery a couple of weeks later, and my tumor was tested for hormone receptivity, it was receptive to progesterone, not estrogen--which might be less common. Anyway, hormone therapy is helpful if well-applied to the situation, but again, I would try to rule out cancer as best you can first.

    I tell this story only to illustrate that are doctors can be wrong and that you are doing the right thing to be wary of your pelvic drama. My experiences are not exactly like yours and are exceptional in a few ways, but well, they are the tuth that happened to me. Do everything you can to rule out cancer. If you are continuing to have worrisome discharges, bloating and pain, please advocate for yourself!!

    highest regards,

    jane

  • Noelle2016
    Noelle2016 Member Posts: 18
    Capital City

    I am about 300 miles out of Montana. A road trip is never out of the question though but I am really hoping to find someone local. I am open to getting a couple of names Lou Ann. As soon as I find someone that I feel I can trust, I think I will ask to have a D&C. After a year of unwittingly putting unopposed estrogen into my body I feel I owe it to myself to, as Jane put it, do my thorough best for myself.

    I did wonder how someone can look at a fibroid and say, without a doubt, that it is not cancerous and never will be just by looking at a picture. I guess it's possible but it made me nervous. Thank you for sharing your story Jane. It reinforced what others have said that it never hurts to get a second or a third opion.

    Warmly,

    Noelle

  • Lou Ann M
    Lou Ann M Member Posts: 996
    My daughter lives in Boise.

    My daughter lives in Boise.  Billings Clinic has an excellent Gyn-Onc department, that has an outreach program. Once a month one of the four doctors go,to Bozeman, Helena, and Missoula to see patients.  Of course they also see patients in Billings.  People from Wyoming and the Dakotas come there.  They have an excellent reputation.

    Hugs and prayers, Lou Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    edited November 2016 #17
    I had an excellent, thorough

    I had an excellent, thorough doctor in the town we lived in before we moved here.  She once told me when you heard the pounding of hooves it's "probably" horses but...it could be zebras.  I'm always looking for those zebras.

    I've thought of that many times over the years.  Keep looking until you're satisfied, Noel!

    Love,

    Eldri

  • Noelle2016
    Noelle2016 Member Posts: 18
    edited December 2016 #18
    Thanks Ladies

    I am pretty set on trying to get a D&C. I just don't know how yet Undecided. The Nurse Practitioner who did my biopsy thinks it is unecessary. She dismissed it completely, when I asked her about it, but I guess I could push her on it. One thing that may be standing in my way here is that she is affiliated with the same hospital as the original Dr. who prescribed the unopposed estrogen therapy for me. I felt a little offened at her comment that the unopposed estrogen therapy did not harm me. I am most certain it did! Even if I don't end up with a CA diagnosis in the end of all of this, just the mental anguish was harm enough!  We only have 2 big Hospitals here in Boise and most of the Doctors team for one or the other of them. Maybe I just need to switch teams Smile. I am a little better on the spotting today but I still just don't feel right. Eldri...I hope it is horses!!!

    I sure appreciate all your thoughts and your willingess to share your stories!!!!

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Insist on D&C

    My advice to you is find a Gyn/Oncologist and get that D&C to be absolutely sure. I pray you have a good outcome. My endometrial biopsy they did in the office came out negative too, but indeed I had Stage 3 cancer. 

  • Noelle2016
    Noelle2016 Member Posts: 18
    On to a D&C

     This completey reinforces my belief that I need the D&C. Thank you so much for this post! I am very grateful you shared it. I am so sorry to hear that your biopsy missed your cancer. I am praying there was not a long lapse in between that biopsy and your actual diagnosis. That is just not right!!

    I want to believe and will try to continue to believe that my pathology results are negative until I hear anything different. This will keep me sane while I try and get scheduled for a D&C!!!  I wonder if I need a referral for a Gyn/Oncologist. I doubt I will get one from the Nurse Practitioner who did the biopsy but, if need be, I can insist she does the referral.

    Can you see a Gyn/Oncologist if you had a negative biopsy result and have not been diagnosed with pre cancer or cancer cells? Does anyone know if I can just call one and ask for an appointment without a referral . Still not feeling well 2 weeks post endometrial biopsy. Still looking for anyone from the Boise, ID area who can reccomend a trusted Gyn/Oncologist.

    Warmly,

     

     

     

  • Nellasing
    Nellasing Member Posts: 528
    edited December 2016 #21
    Lou Ann's Daughter lives in Boise

    Did you see her post re Billings Clinic?  Maybe if that is too far for you you could call and ask them for the name of someone closer to you??  I imagine your insurance will be the guide to if you need a referral to see a gyn/onc but I second everyone saying you probably want to see one just for the peace of mind it will give you.  My gyn/onc was also my surgeon so that was huge to be able to have that comfort that she knew ALL about it. 

    I think it's great to keep a positive attitude and we'll surely be here right along with you!  (((HUGS)))  <3<3