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Scared thick uterus lining

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Hi everyone!


Went in today for a vaginal US which shows very thick uterine lining. No polyps or fibroids.

My last two periods have been very heavy and painful and last longer than usual.

The Dr said this could be caused by the tamoxifen but that I need a biopsy.

I'm obviously scared, and sad. Just hearing the word biopsy, again. And knowing this is my life, I will always need tests and tests and tests. Will I ever stop feeling scared?


Any of you experienced thickening of the uterus with tamoxifen

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Comments

  • veeder14
    veeder14 Member Posts: 272
    edited February 2022
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    Hi living in paradise,

    My uterus lining went from 2mm before starting Tamoxifen to 17 mm 4 months later. My situation is probably different from yours because I’m post menopausal, no periods to remove the extra thick lining. Had a hysterectomy to solve the issue and continue on Tamoxifen.


    Do you know how thick your lining is? Good no polyps or fibroids. I hope you get answers. Hopefully someone else with more information will write in


  • waves2stars
    waves2stars Member Posts: 126
    edited February 2022
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    “Very thick” doesn’t seem very specific. And thick doesn’t always mean something terrible. Mine was 16mm thick a year ago, and after a biopsy and ultrasound this month, it was found to be the same size. My gyn said it was stable so to leave it alone. Nothing bad on pathology. I did have a benign polyp that was removed, lightening my periods. Thinking of a possibility of going through cancer again was the worst part of it. But you may just need a D&C or to change meds, so try not to worry.

  • ladyc2020
    ladyc2020 Member Posts: 87
    edited March 2022
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    I was on tamoxifen for about 6-8 weeks and noticed uterine pain very quickly.Had ultrasound showed 18mm thick. Did the gene test at the same time and turns out I don’t metabolise tamoxifen. Had d&c and biopsy and got the all clear. Apparently it’s not rare for this to happen so try not worry too much.

  • salamandra
    salamandra Member Posts: 745
    edited March 2022
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    I was having irregular periods and I had some irregular bleeding. One doc explained it due to nabothian cysts, but the other one said that due to my hormonal treatment he wanted a hysteroscopy and biopsy.

    He made it pretty clear that it was out of an abundance of caution, and I have been able to not be worried about it. I got sedated for the procedure and it was very quick and easy. I'm waiting on the results now. I also took advantage of the situation to get a new hormonal IUD put in, and it was the most painless insertion ever :)

    Hang in there and good luck!

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2022
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    Tamoxifen can definitely impact your uterus and more often than not does make the lining thicken. I had the "biblical" period after starting Tamoxifen - 40 days and 40 nights ha. Triggered the whole biopsy effort etc. I haven't had an issue since, but my Gyn says to report any bleeding since I am now post menopausal. It is frustrating and exhausting to have concerns about the side effects of the meds you take. Hope all goes well with the procedure and Salamandra I hope you have benign results.

  • angieb92
    angieb92 Member Posts: 291
    edited April 2022
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    I just had a period after 1.7 years of not having one and 2 years on Tamoxifen. This past Tuesday I went in for a biopsy and ultrasound and my lining was 25mm! I’m scheduled for a D&C on May10. I read about her forum where a lady got a D&C every year for three years because of Tamoxifen. Try not to worry about this. I think this is really expected when on Tamoxifen

  • beach2beach
    beach2beach Member Posts: 245
    edited April 2022
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    Year 4 of tamoxifen I had a thickened lining.at 10mm I was getting an ultrasound every 6months. Went in for a quick d & c was found to have an endometrial polyp and everything was benign. My gyno and onco said many women have thickened lining while on tamoxifen. They both said they just need to be kept an eye on. I opted for a d/c rather than watchful waiting. That was last August. Just had my ultrasound last month and normal lining.

  • pinger2474
    pinger2474 Member Posts: 15
    edited April 2022
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    My periods went from fairly regular to just 7 periods since July 2020 after I started Tamoxifen. My last period was last August. But after my Pap smear last week in which my doctor discovered a 1.5cm polyp on my cervix, I had light spotting for 2 days which is fairly typical but then for the last 2 days, I am having light bleeding. I don't know if this is a period or not; it doesn't have the same flow and consistency that I usually have.

    I had a pelvic ultrasound late last week and there were quite a few small fibroids. What is concerning is my endometrium is 14mm. Can that be causing this bleeding? I'm very worried. I'm scheduled to see a gynocology oncologist in a week to figure out what to do with the polyp and the thick endometrium, but was wondering if this is typical for someone takingTamoxifen. I'm only taking 5 mg a day.

  • rah2464
    rah2464 Member Posts: 1,192
    edited April 2022
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    Pinger you don't mention whether you are close to menopausal age which could definitely have an impact on what you are experiencing. That being said I think you are taking the right course and doing further investigation especially with known fibroid issues as well as a small cervical polyp. It is very common for tamoxifen to cause an increase in your uterine lining. My gyno has always told me things are fine but to watch for unusual bleeding . But that is when you are post menopausal. Things are a little bit trickier to monitor premenopause. Sorry for the stress and worry, hope everything checks out benign for you.

  • eauclaire
    eauclaire Member Posts: 7
    edited May 2022
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    just wondering if anyone yas been taken off tamoxifen due to increased endometrial thickness? I'm postmenopausal, 71, been on Tamoxifen 11 months. Had pelvic US 2 years ago for another issue; lining has increased by 4.5 mm since; it's now 6.5 mm. Also have small uterine fibroid, about 1 cm. Comments here indicate some increased thickness is common, and that 6 5mm is pretty minor. I'll see my oncologist in 2 weeks to see if she recommends a biopsy. My GP recommended it.

    Would appreciate feedback.

  • veeder14
    veeder14 Member Posts: 272
    edited May 2022
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    Hi eauclaire

    My uterine lining was 2mm when I started Tamoxifen and 17 mm 4 months later. I wasn’t taken off of Tamoxifen but had a hysterectomy so I could continue taking it. I was 61 and post menopausal at that time. I didn’t want to switch to AL medication instead.


    sounds like your lining is getting thicker but no where near how quickly mine did. I just know my lining thickness was out of control. Why would you need a biopsy? Are you having bleeding? Let us know what your Oncologist recommends


  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    Eauclaire that is the plan with me but that means going to an AI and that gets complicated with my bones. My lining has thickened to 8.7 and I have had some bleeding. So off for a procedure for me. You should have a biopsy just to make sure - but what a pain. Your oncologist should refer you to an oncological gyno for care. In fact, I would think they would refer you without even having to see you just to get the ball rolling. That is what my oncologist office does but everyone different. Nothing about this is easy is it?

  • rain88
    rain88 Member Posts: 160
    edited May 2022
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    I was peri-menopausal before starting on Tamoxifen, and after 15 months on it, I had a massive bleeding. The vaginal US showed a 24 mm thickened uterus, but in turned out it was a large - benign PHEW! - endometrial polyp. My MO did take me off Tamoxifen though, and advised to stay off it.

  • ladyc2020
    ladyc2020 Member Posts: 87
    edited May 2022
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    livinginparadise-

    I was taking Tamoxifen for less than 2 months and developed thickened lining - 18mm. Had the biopsy and hysterscopy and d/c. All benign. Stopped tamoxifen right away and did the gene test - I don’t metabolize tamoxifen so all side effects and no benefit. Fingers crossed for you.

  • pinger2474
    pinger2474 Member Posts: 15
    edited May 2022
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    Thanks Rah for your well wishes. Since the ultrasound which uncovered 14mm lining, I ended up getting a very heavy period after not having a period in 8 months and another period the following month. So even though I'm going to be 56 this year I am clearly not going into menopause. Would having a period decrease the lining?

    I did end up getting a uterine biopsy which was interesting because the gynecology oncologist couldn't see the cervical polyp that my regular gynecologist mentioned. Maybe it detached with the heavy period? They did find a benign endometrial polyp which I am planning to have removed soon. Rain, I did ask about whether I should stop my Tamoxifen usage which is only 5mg a day but both. MO and GO said no. Are you on something else? Hope you are doing well. We have the same type of BC, mucinous.

    Hope everyone is staying safe and healthy.

  • rain88
    rain88 Member Posts: 160
    edited May 2022
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    Pinger, I am doing all right, thanks. I am not on anything else. I was on 10mg of Tamoxifen, as I couldn't tolerate well the 20mg dose. On 10 mg, I still had lots if side effects, but tolerable. After the episode of heavy bleeding we discussed switching to an AI, but my MO pointed out that I would most likely have another plethora of side effects. He then suggested to stay off estrogen blockers all together, since the benefit from them in my case would be in the range of 1 to 3%. Our type of cancer, as you most likely know, is also less aggressive, so I took that into account when I made the decision. All the best and lots of positive vibes going forward. ♥️

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    Pinger - the heavy period should shed the uterine lining but I would plan on a follow up pelvic ultrasound since you had a clean biopsy and you are continuing on the tamoxifen. I would think your GO would have that it the plan as an annual check.

    My D&C is Wednesday will be so glad to get it done and determine if I have an issue or not. My MO has already pulled me off the Tamoxifen. I will get my original tumor tested early (at four years not five) to see if I need to try an AI.

  • ladyc2020
    ladyc2020 Member Posts: 87
    edited June 2022
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    rah - I hope you’re feeling well after the d/c yesterday. Fingers crossed for you.

  • rah2464
    rah2464 Member Posts: 1,192
    edited June 2022
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    Thank you so much ladyc2020 ! My results posted late yesterday and thankfully all benign. I was anticipating some dysplasia but all clear whew! Thankful it won't be a hysterectomy summer.

    It will be interesting to see where my post op discussion goes given the level of irritation in my uterus.


  • salamandra
    salamandra Member Posts: 745
    edited June 2022
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    Yay!!

  • melania
    melania Member Posts: 12
    edited October 2022
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    Hello sisters!

    Please help i freaked out. I was diagnosed in 2010

    When i was 38. I had dmx and chemo and radiation and i had hormon blockers for total of 10 years( 5 years Arimidex 5 years Tamoxifen) cancer free since then. I stopped Tamoxifen last year. I never had my period since chemo and the meds put me on chemical menopause. I am 50 now.

    On Saturday I started having a period which felt like my regular periods but it got very heavy the next day. Yesterday I met the gyno they did an ultrasound and my uterus lining was thick(8 mm) they said might b polyp but since tamoxifen is a risk factor can b something else😬😬😬 so they did a biopsy and im waiting for results😭😭.

  • rain88
    rain88 Member Posts: 160
    edited October 2022
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    Melania, I hope you'll get benign results. Like you, I had heavy bleeding while on Tamoxifen. A pelvic scan showed I had a 22mm thick endometrium, which had me worried until I finally had polypectomy with benign findings. ♥️

  • melania
    melania Member Posts: 12
    edited October 2022
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    thank you rain88

    I hope the same. But I was done with my tamoxifen since last year. So hope its polyp or smtg .


    thank yo

  • ab45
    ab45 Member Posts: 153
    edited December 2022
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    Hi,

    I went to the gyno today and had an enlarged uterus. Been on tamoxifen for about a year. Has anyone experienced uterine fibroids or enlarged uterus while on tamoxifen?

    Thank you!

  • ab45
    ab45 Member Posts: 153
    edited December 2022
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    Should i post this on a different forum?

  • rah2464
    rah2464 Member Posts: 1,192
    edited December 2022
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    AB45 yes, a thickened uteral lining is pretty common if you are taking Tamoxifen. You will want to be monitored yearly via pelvic ultrasound and if the lining goes beyond a threshold thickness ( I believe its 8mm?) then you will need a biopsy just to make sure all is ok.

    I am sorry you are experiencing this, it is stressful I know. I have been on Tamoxifen for 4 1/2 years now and just went through a random bleeding event which triggered the biopsy process. All benign but stressful to go through.

  • rain88
    rain88 Member Posts: 160
    edited December 2022
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    ab45, I had an enlarged uterus (22mm) after 15m on Tamoxifen, + heavy bleeding. It turned out it was polyps, but, as rah2464 said, it was very stressful! I hope all is benign changes in your case as well. My MO asked me to stop taking Tamoxifen until I had the results from the biopsy. He then would have considered switching me to an AI. All the best! ♥️

  • ab45
    ab45 Member Posts: 153
    edited December 2022
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    Thanks, did either of you have to have surgery? I am premenopausal so I am not sure what treatments are needed..I get so confused if fibroids and uterine lining thickening are the same thing? My gyno said my uterus feels like I am 12 weeks pregnant. Not sure if that is considered really large? My ultrasound is not for another 2.5 weeks so I'm still taking tamoxifen...

  • rain88
    rain88 Member Posts: 160
    edited December 2022
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    ab45, I would check with my MO, the main care specialist in our case, and seek their input re. Tamoxifen. The ultrasound will be able to provide more specifics as to why your uterus is enlarged. In my case, I initially had a transvaginal ultrasound, which determined the thickness of my endometrium. It was then followed by another to provide an inside (literally) view of the endometrium, when it was established that I had large polyps. Once they know what causes the enlarged uterus they will be able to determine treatment. All throughout this, the dominant thinking was that I would need my uterus removed and they assured me that it was a fairly straight-forward procedure. Luckily, it didn't get that far, so it might very well be your case too. Waiting and incertitude is hard...😟 Hang in there. You got this!

  • ab45
    ab45 Member Posts: 153
    edited December 2022
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    Thanks, waiting is the hard part! I appreciate your response..Hopefully, I will have answers after my ultrasound..and hoping for benign!!