Vaginal atrophy not listed as side effect from tamoxifen

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Runner81
Runner81 Member Posts: 33
edited March 2018 in Hormonal Therapy - Before, During, and After

I have been on tamoxifen for almost 2 years. I had NO IDEA about the problem of vaginal atrophy before I started experiencing it as a side effect of tamoxifen. What I want to know is why this is not listed in the information in the Hormonal Therapy sections of the breastcancer.org website? Women need to know about this potential side effect. I have a feeling there are many, many women out there suffering in silence who are embarrassed to bring up this problem. I am on a mission to come out of the closet and bring this problem to light so we can get help. At the very least it needs to be listed on here as a side effect of tamoxifen so women can be aware.

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  • cliff
    cliff Member Posts: 290
    edited March 2017

    that sounds awful, glad I wont have to experience that side effect.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Hi Runner,

    We're so sorry to hear you're dealing with this terrible side effect, and thank you for bringing this to our attention!

    We will pass your suggestion along to our Editorial Team. In the meantime, you may want to check out the main site's page on Vaginal Changes for information on how to manage this side effect.

    We'd suggest you continue to voice your experience here and invite others to do so as well, so that any future or current women taking tamoxifen who experience this side effect have a place to go for advice, tips, and words of wisdom.

    Thanks again!

    --The Mods

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  • Runner81
    Runner81 Member Posts: 33
    edited March 2017

    Thanks, Mods, for sending this request along to the editorial team. Vaginal atrophy definitely needs to be listed as a side effect of tamoxifen. I had no idea that women suffer from this as a result of menopause, and it's even worse with "forced menopause" as with tamoxifen. I had no idea what it was until I started suffering from it. When my oncologist put me on tamoxifen, she told me the only real side effect was hot flashes. Well, I have those, but the vaginal atrophy is terrible. I wished I had known about it. I am currently getting the new Mona Lisa Touch procedure done, and if it is successful in bringing me some relief I will be talking about it more. I think women suffer from this problem and don't talk about it because it's embarrassing. I want to bring it out of the closet so we can get help.

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  • dtad
    dtad Member Posts: 2,323
    edited March 2017

    I get where you are coming from but try to remember that the SEs of anti hormone therapy are caused by lack of estrogen. So you can have any SE that you get from natural menopause, sometimes worse! Good luck to all navigating this complicated disease.

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  • Runner81
    Runner81 Member Posts: 33
    edited March 2017

    Of course, I know that this is a side effect of menopause as well. I'm wondering why I never knew this was a SE of menopause? I guess because most women are typically older and perhaps not as sexually active when they naturally go through menopause, and perhaps because the process happens a lot more gradually it is not as devastating. With tamoxifen it happens so quickly, I think that is one reason it seems so extreme. Also, because it is premenopausal women who are put on tamoxifen, they are younger and more likely to be sexually active; therefore, the vaginal atrophy would affect them more. Regardless, women who are placed on tamoxifen need to be told about vaginal atrophy just as they are told about hot flashes, mood swings,or any other side effects from lack of estrogen. Like I said, I think women are suffering in silence from this because it is embarrassing, and I think it needs to come out of the closet. Perhaps something could be done to help those of us on tamoxifen and those going through normal menopause who have this symptom.

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  • Runner81
    Runner81 Member Posts: 33
    edited March 2017

    Actually, women going through natural menopause can be placed on hormone patch or use topical estrogen.Oncologists usually will not allow even the topical estrogen for breast cancer patients. So we have no treatment available. I am trying the Mona Lisa Touch procedure, the jury is still out on whether it will help me or not.

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  • Falconer
    Falconer Member Posts: 1,192
    edited March 2017
    Runner81, I agree with you. Women's sexuality issues are still downplayed. It's true that we ER+ patients are not at all the same as women who go through menopause naturally.
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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2017

    I pointed out this glaring omission long ago, when BCO did a survey about side effects of hormonal therapy. Vaginal problems had been left off the checklist on the survey. Really?!

    On the plus side, BCO has done several articles recently addressing sexual side effects of treatment, and has summarized suggestions from members on how to deal with these side effects.

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  • Runner81
    Runner81 Member Posts: 33
    edited March 2017

    Yes, I agree that you can find information on vaginal changes and vaginal atrophy in other sections of the BCO website but nothing related to tamoxifen or hormone therapy. I think people like us have to keep talking about it. I truly believe there are women out there suffering in silence because nobody wants to talk about it.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2017

    This page discusses vaginal changes and tamoxifen. Although the page does not use the term "atrophy", it addresses the thinning of tissues and related effects, and indicates endocrine therapy, including tamoxifen, as a possible cause:

    Main site: "Vaginal Dryness"

    http://www.breastcancer.org/treatment/side_effects/vaginal_dry

    I suspect that the many other pages and blog entries discussing vaginal problems and possible remedies do not focus on tamoxifen in particular, since the side effect may be caused by a number of different treatments.

    Perhaps other pages should link to it.

    BarredOwl


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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited March 2017

    I've had many BC treatments including Tamoxifen and AIs.I have no idea what contributed to the severity of my post menopausal symptoms but I agree that it is difficult to be slammed so quickly. Frankly I think it all started with chemo. My gynecologist recommended Replens every other night and more sex to toughen the thinning vaginal wall. I have to say it really has made a positive difference. We also changed lubricants to Wet Platinum instead of KY. Also, there is lots of communication. I'm not like I was when I was younger but I do expect we'll continue to have a decent sex life for a long time to come. This is a very common problem for post menopausal women. Talk to your doctor.

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  • Runner81
    Runner81 Member Posts: 33
    edited March 2017

    I agree that my problems started with chemo as well. I have talked to my doctors until I'm blue in the face, they are not responsive. My oncologist has nothing to say, my PCP told me to use Astroglide. I will look into the Wet Platinum you mention. As an afterthought at my last appointment, my oncologist gave me a brochure about the Mona Lisa Touch procedure. She tracked me down in the waiting room on my way out to give it to me, it didn't occur to her to give it to me while I was in her office. I think I am ignored because there isn't much they can do for me. So there's just nothing to say. The gynecologist who is doing the Mona Lisa Touch for me told me specifically NOT to use Replens. It is interesting to me how all these doctors have such differing opinions. As y'all can tell, this problem has been a big deal for me and has caused me quite a lot of emotional angst.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2017

    Here is a link to the topic "I Want My Mojo Back". It has a summary under the first post.

    https://community.breastcancer.org/forum/150/topic...


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  • Julia0804
    Julia0804 Member Posts: 10
    edited March 2018

    It should be listed as a side effect for all AI's. The vagina is not the only thing that shrinks! I wonder what else we are not being told.

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  • klvans
    klvans Member Posts: 258
    edited March 2018

    I thought some oncologists were ok with small amounts of topical estrogen as it isn't absorbed systemically.

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