Tamoxifen and Intimate Side Effects

Dawne.Hope
Dawne.Hope Member Posts: 823
edited March 2014 in Breast Cancer #1
Sorry about the intimate details, but I don't know who else to ask!

I've just started taking tamox. (about a week) and am experiencing really bad vaginal dryness. I've never had this problem before ... what can I get to help?

Also ... I'm premenopausal and I've always had my period like clockwork, every 25 days. I know that tamox. can mess with your period. I'm currently late (and no, I'm not pregant!) :) Will I still have periods? Or will they go away?

Again, sorry for the details, but I need you're wisdom and advice!

Thanks,
d.h.

Comments

  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #2
    Dawne Hope
    You can ask anything on here. That is what this site is for. We are all sisters here!

    I wish that I could help you with your questions, but, I am still in radiation treatments and am not on tamoxifen yet. And, I might not even take it when I finish rads. I am one of those "undecided" people.

    I hope that someone can help you out. Your gyn and oncologist would be the ones that could help you medically or with a prescription. But, I am sure the ladies here have some ideas or suggestions!

    Good luck to you!

    Sue :)
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #3
    Ritzy said:

    Dawne Hope
    You can ask anything on here. That is what this site is for. We are all sisters here!

    I wish that I could help you with your questions, but, I am still in radiation treatments and am not on tamoxifen yet. And, I might not even take it when I finish rads. I am one of those "undecided" people.

    I hope that someone can help you out. Your gyn and oncologist would be the ones that could help you medically or with a prescription. But, I am sure the ladies here have some ideas or suggestions!

    Good luck to you!

    Sue :)

    Thanks!
    I said that I would never take it. I went back and forth regarding the decision to take it for a few weeks. Because I'm so high risk because of genetics, I decided it was worth it. If the side-effects get to bad, I can always stop taking it. We'll see.

    Thanks again, Sue!
    d.h.
  • cruf
    cruf Member Posts: 908
    #4
    Dawne.Hope said:

    Thanks!
    I said that I would never take it. I went back and forth regarding the decision to take it for a few weeks. Because I'm so high risk because of genetics, I decided it was worth it. If the side-effects get to bad, I can always stop taking it. We'll see.

    Thanks again, Sue!
    d.h.

    Tamoxifen
    Tamoxifen does cause vaginal dryness sometimes. The only thing you can do is try some KY or other lubricant. Ask your MD what they recommend. Watch out for any estrogen in the lubricant. You don't want any as BC feeds off estrogen if you are ER+. I was 48 at DX and premenapausal and had Tamoxifen for the first time in Oct. and had my period that month and never again and that was in 2000. I'm older than you so I have to say, I don't mind that! Other than hot flashes,and some vaginal discharge, I really had no other problems with tamoxifen. Any other questions, please feel free to e-mail me here and I will try to help. HUGS!! Cathy
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #5
    Dawne.Hope said:

    Thanks!
    I said that I would never take it. I went back and forth regarding the decision to take it for a few weeks. Because I'm so high risk because of genetics, I decided it was worth it. If the side-effects get to bad, I can always stop taking it. We'll see.

    Thanks again, Sue!
    d.h.

    Definitely worth it
    DH
    I was on tamoxifen for 5 years...finished up 1 year ago. Started when I was 50 and was put on it as a preventive. Had pre cancerous cells in my breast but since there is a family history (mother) my surgeon decided to put me on it. Yes, I had the dryness...tried many lubricants...but be careful of the ones that contain estrogen. The hot flashes were the pits! I still get them.....but not as bad. My periods were already stopping when I went on it so I can't help you there. But in the long run, I think it was worth it.....I have been off of it for a year and all is well.
    Jane
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #6
    Dawn
    chemo can also screw up your menstrual cycle if you've had chemo.
    I would ask my onc about this if I were you-the rest of us only have our own experiences to go by...
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #7
    outdoorgirl said:

    Dawn
    chemo can also screw up your menstrual cycle if you've had chemo.
    I would ask my onc about this if I were you-the rest of us only have our own experiences to go by...

    Dawn, I hope your oncologist
    Dawn, I hope your oncologist can help you. I am not on tamoxifen yet, so, I don't know if that would be causing it or not. Is it suppose to be one of the side effects? Let us know if you find something to help you. Good luck to you!

    Hugs, Diane ♥
  • ColoradoGal
    ColoradoGal Member Posts: 14
    #8
    I read that Vitamin E capules might help
    I start Tamoxifin tomorrow - ick. Not looking forward to the physical side effects.
    The one that grosses me out and freaks me out the most is the risk of the lining of my vagina collapsing! So, what does that render me forever unable to have sex? All this XXX just gets more and more frustrating. Somedays I'd rather just XXX die that to live like a dried up, mutilated, ticking time bomb. I'm trying to stay upbeat, but what is upbeat about losing ones ability to have an orgamsm, or lose quality of life in other areas? Am I just supposed to be grateful that I am alive? Does this actually count as being "alive" - cause sometimes the side effects from all these treatments sound more like a chemical version of being hooked up to life support after the body is brain dead. Yeah, my heart might be beating, but what good is it, if nothing else works?!

    Sorry - I'm normally a positive person. I'm just in a realy bad mood and not looking forward to taking this XXX for 5 years. But I managed to dodge chemo, so that's something positive.

    I also found the site (link below) which had some good information, but by far, the best tip I received from a couple of other women, well into their treatment (tamoxifin) was to place a couple of vitamin e capsules into the vagina to help counter the dryness. I was told 2-3 times a weeks was enough.

    http://www.hisandherhealth.com/voxant/voxant/four-steps-to-non-hormonal-treatment-of-vaginal-dryness.html

    Here I go into premature menoXXpause - I feel about as positive and joyful as a lamb to the slaughter.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #9
    ColoradoGal said:

    I read that Vitamin E capules might help
    I start Tamoxifin tomorrow - ick. Not looking forward to the physical side effects.
    The one that grosses me out and freaks me out the most is the risk of the lining of my vagina collapsing! So, what does that render me forever unable to have sex? All this XXX just gets more and more frustrating. Somedays I'd rather just XXX die that to live like a dried up, mutilated, ticking time bomb. I'm trying to stay upbeat, but what is upbeat about losing ones ability to have an orgamsm, or lose quality of life in other areas? Am I just supposed to be grateful that I am alive? Does this actually count as being "alive" - cause sometimes the side effects from all these treatments sound more like a chemical version of being hooked up to life support after the body is brain dead. Yeah, my heart might be beating, but what good is it, if nothing else works?!

    Sorry - I'm normally a positive person. I'm just in a realy bad mood and not looking forward to taking this XXX for 5 years. But I managed to dodge chemo, so that's something positive.

    I also found the site (link below) which had some good information, but by far, the best tip I received from a couple of other women, well into their treatment (tamoxifin) was to place a couple of vitamin e capsules into the vagina to help counter the dryness. I was told 2-3 times a weeks was enough.

    http://www.hisandherhealth.com/voxant/voxant/four-steps-to-non-hormonal-treatment-of-vaginal-dryness.html

    Here I go into premature menoXXpause - I feel about as positive and joyful as a lamb to the slaughter.

    I know ...
    Colorado,

    I hadn't heard about the collapsing vagina side effect. ewwwwwwww!

    The way I'm trying to handle things is just take it one day at a time. Before bc I was a worrier about everything. And now that I have something really serious to worry about I've realized that worrying does absolutely nothing but raise my blood pressure and depress my immune system. I'm trying to focus on just today and not worry about tomorrow. What if this, what if this, what if this ... it never ends! And it is literally driving me crazy! Lock me up, throw away the key ... I'm a mad woman. It's not worth it! I have today. Tomorrow I could get shot in the head, run over by a car, smash my car into a tree, have a massive heart attack ... it could all be over in an instant. I'm trying (sometimes not so successfully) to just live in the moment and focus on today.

    I'm so sorry that you're in a bad mood. I sat and cried Friday afternoon, I mean boo-hoo crying for two hours. I'm not like that! So ... I know. There are good days and bad days. I've taken the Tamox. for about a week now. I know it sucks having to go into premature menopause. I'm 39. It totally sucks! I had a good lament, journaled it out - my worries, my fears about taking it. If we get on it and it is unbearable, we can just stop.

    I paroused the feminine product aisle in Wal-Mart this afternoon and found some possibilities. I hadn't heard about the Vitamin E. Thank you!!!

    Hang in there, Colorado! And I'm trying to not worry about the what-ifs ....

    thank you for everyone for your advice! BTW ... at this point, I haven't had chemo so it has to be the tamox. that's causing me to be late.

    Trying to take it one day at a time,
    d.h.
  • ColoradoGal
    ColoradoGal Member Posts: 14
    #10
    Dawne.Hope said:

    I know ...
    Colorado,

    I hadn't heard about the collapsing vagina side effect. ewwwwwwww!

    The way I'm trying to handle things is just take it one day at a time. Before bc I was a worrier about everything. And now that I have something really serious to worry about I've realized that worrying does absolutely nothing but raise my blood pressure and depress my immune system. I'm trying to focus on just today and not worry about tomorrow. What if this, what if this, what if this ... it never ends! And it is literally driving me crazy! Lock me up, throw away the key ... I'm a mad woman. It's not worth it! I have today. Tomorrow I could get shot in the head, run over by a car, smash my car into a tree, have a massive heart attack ... it could all be over in an instant. I'm trying (sometimes not so successfully) to just live in the moment and focus on today.

    I'm so sorry that you're in a bad mood. I sat and cried Friday afternoon, I mean boo-hoo crying for two hours. I'm not like that! So ... I know. There are good days and bad days. I've taken the Tamox. for about a week now. I know it sucks having to go into premature menopause. I'm 39. It totally sucks! I had a good lament, journaled it out - my worries, my fears about taking it. If we get on it and it is unbearable, we can just stop.

    I paroused the feminine product aisle in Wal-Mart this afternoon and found some possibilities. I hadn't heard about the Vitamin E. Thank you!!!

    Hang in there, Colorado! And I'm trying to not worry about the what-ifs ....

    thank you for everyone for your advice! BTW ... at this point, I haven't had chemo so it has to be the tamox. that's causing me to be late.

    Trying to take it one day at a time,
    d.h.

    Trying to regain my composure..
    Dear DH,

    I'm still greiving the loss of my life BC and trying to adjust to the new me. Actually some of these changes are positive. I get more sleep now, am more attentive to my diet and get out at least 3times a week to hike/walk and am looking forward to ski season so I can ride my new snowboard!! So, it's not all bad. I'm (was) a control freak and can't stand that I have very little control over this disease.

    So, I allow myself the freedome to rant, to grieve and to vent. Eventually, after an hour or so, I tend to feel better and start focusing on the positives again. Yes, I'm with you: If I get on it and I can't deal with it, then I will have to have a heart to heart with my oncologist.

    I'm sorry for both of us, this sucks, but let's just hang in there.
  • Piggies
    Piggies Member Posts: 26
    #11
    No Problems Here With Tamoxifen
    Hi, I've been taking Tamoxifen for almost a year, (November 1st will be one year) I was diagnosed with Stage 1 breast cancer in July 2008, had a lumpectomy no chemo and six weeks radiation. Right after the radiation, I began taking the Tamoxifen. I'm 45 now so obviously, I was 44 when I began taking it. Premenopause. My periods have never been regular but I must say that since the Tamoxifen, I get my period every month between 28 and 30 days like clockwork. My period has never been so regular. I haven't had any other side effects, only a few night sweats and the occassional charlie horse. I'm too young for menopause and from what I understand if you have a hot flash you'll know it. No vaginal dryness but I guess KY and other products similiar to that should help. I hope I've been of some help to you. I wish you all the best!
  • RoseG
    RoseG Member Posts: 1
    #12
    Tamoxifen and intimate side effects
    Dawn, I've been on tamoxifen for about 10 months. While I was perimenopausal and having some vaginal dryness at the time I started, I have to say that with the tamox, I've had vaginal discharge as a side effect. So dryness is definitely not a problem. The biggest problem I have had though, is difficulty reaching orgasm. Anyone else have this?
    And I had already gone several months without a period at the time I started tamoxifen, and then months later did get periods back for about 3 months, only to have them disappear again for now going on 6 months. Women who are solidly premenopausal usually don't lose their periods however, while on tamoxifen. Because it's effect is supposed to be just to block estrogen from getting into the breast cancer cells.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #13
    RoseG said:

    Tamoxifen and intimate side effects
    Dawn, I've been on tamoxifen for about 10 months. While I was perimenopausal and having some vaginal dryness at the time I started, I have to say that with the tamox, I've had vaginal discharge as a side effect. So dryness is definitely not a problem. The biggest problem I have had though, is difficulty reaching orgasm. Anyone else have this?
    And I had already gone several months without a period at the time I started tamoxifen, and then months later did get periods back for about 3 months, only to have them disappear again for now going on 6 months. Women who are solidly premenopausal usually don't lose their periods however, while on tamoxifen. Because it's effect is supposed to be just to block estrogen from getting into the breast cancer cells.

    I am not on tamoxifen yet.
    I am not on tamoxifen yet. It is good read that some aren't having too bad of side effects. I hope that something helps you with your dryness. I have never heard of the Vitamin E, but, it might work.

    HUGS

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