Sex After BC???

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pixelpup
pixelpup Member Posts: 49
edited June 2014 in Stage I Breast Cancer

Hi Everyone,

And what about sex after BC?  Any ideas for the atrophic vaginitis that occurs with no estrogen?  My urethral lining also became so thin that 8 weeks ago I needed surgery to remove an urethral carunkle (seriously!  I had never heard of this before and it was SO painful!)  My male GYN said "You've been dealt the worst hand possible" (basically meaning that sex was either going to be very painful or a thing of the past... I mean how much good can Astroglide do in our situation?)  However, I went to a female GYN and she was much more understanding.  She prescribed Vagifem ( the lower 10 mg dosage) and said it delivers only a small dose locally to the vaginal area.  She is the first one to address this quality of life issue with me. Any other ideas for the absolute misery down there?  Alison

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  • suzwes
    suzwes Member Posts: 1,740
    edited December 2010

    Hi Alison,

    Sex after BC for me was also very painful (although I was fortunate not to have the complications you had).  My Onc nurse gave me replens and that worked very well.  I used it before sex and, for me it wasn't messy.  I was fortunate that I only needed the replens about 3 or 4 times and I've been good to go since then (used it in the spring and haven't needed it since).  It hasn't helped the libido but at least it is tons more comfortable for both my hubby and I.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Hi Alison,

    I had issues with painful sex and bleeding afterwards due to vaginal atrophy.  It was really frustraing for me because of the lack of desire also.  But DH and I have always had a great sexual relationship over the years, and once you've enjoyed it you really know what you're missing. I have resolved a lot of the issues with Vagifem, replens, a little pocket rocket sex toy, and talking openly with my Onc and Gyno.  Over on the stage III forum I had the topic 

    discussed under Chemo Brain Ok, BUT CHEMO VAGINA? HELP!!!!  There were a lot of girls going thru this and a lot of suggestions.  I also discussed this topic regarding my oncs phylosophy and sexual health.  You are not alone with this issue and there are things you can do to remedy it.  The Vagifem, even tho my onc and gyno disagree, has taken care of the vaginal atrophy as well as helping the tissues to plump up a little along with the replense.  I've learned that you have to be faithful about applying it during the week even with no sex.  This helps to keep the tissues supple. The issue of no libido is kind of taken care of once DH gets me going with the pocket rocket, and we've found that even orgasm is acheivable.  I hope this helps.

    image

    Barb

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  • pixelpup
    pixelpup Member Posts: 49
    edited December 2010

    Hi Barb,

    Yes, my Onc would be quite upset if he knew I got the Vagifem.  I'm not even going to tell him!  Thanks for the lead to the other discussion. You have given me hope :)  Alison

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  • carrolmcc
    carrolmcc Member Posts: 14
    edited January 2011

    My gyno just confirmed what I already knew:  Vaginal atrophy.  He recommended Premarin cream, 0.625 mg.  The packet warns not to use if I've had BC or a stroke (both of which I've had).  My onc is no help, I have to call him every 6 months just to get a mmamo.  I'm not taking the Arimidex that was prescribed.  Astroglide/Replens did not help.  What do I do?

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  • susand
    susand Member Posts: 226
    edited January 2011

    carrolmcc: Please check out the tread that shannagirl suggested called "chemo brain ok, but chemo vagina help!!!" it is in the stage 3 forum.  Also check out the "Mojo" Thread on the Moving beyond cancer forum.  They have a lot of suggestions.  dont give up.  My gyn suggested estriol cream to me...when I asked my Oncologist and Primary they both said "Absolutely NOT"! So I am doing the best I can with exercises (kegels, dialator) and moisturizers.  Things have gotten much better.  Please check out the other threads they have a lot of information.  With a little work it gets a lot better!

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited January 2011

    Since the vagina is a mucous membrane, any estrogen you put down there will get into your body.   I am no doctor, but it seems contradictory to me if you are ER+ to use any cream that contains hormones.    

    Yes,Pixel, I think your onc would be upset.     I heard coconut oil is good for this, but haven't tried it yet.

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  • kathleenm
    kathleenm Member Posts: 17
    edited February 2011
    I've been using Vitamin E suppositories. I am single but dating, not sexually active yet. I suggest getting a vibrator and lubricant (KY or Astroglide) and build your tolerance gradually. Embarassed
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  • pixelpup
    pixelpup Member Posts: 49
    edited February 2011

    Does anyone know how a compounded estriol cream (or suppositories) would compare to using Vagifem for vaginal atrophy?  I know that neither should be used for ER+ in a perfect world, but I'm not willing to give up that part of my life just yet!  I'm still using Vagifem (new lower dosage...10 mcg) and not even once a week, but wondered if estriol might be safer.  Thanks. Alison

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited February 2011

    Allison, you may want to post your question on the Natural Girls Forum.  Some of the members there have had experience with Estriol.

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  • lago
    lago Member Posts: 17,186
    edited February 2011

    I just had this discussion with my NP yesterday. Astroglide just wasn't cutting it for me. (Love the name of that stuff. Sounds like something Jane Jestson would use).

    Anyway she told me to use Replens every day for 30 days then 2x a week after that. If that doesn't work I will be talking to my gyn but no estrogen products for me.

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  • pixelpup
    pixelpup Member Posts: 49
    edited February 2011

    We use Astroglide too.  You're right...what a name!  I've tried the Replens and also Vitamin E.  It seems that a small dose of estrogen is the only thing that works for me.  You may be fine with Replens.  I know that my vaginal and urethral atrophy is so bad that I actually neded surgery once taken off all estrogen.  Love Mrs. Jetson!!!  She probably never had any hormone issues :)

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  • lago
    lago Member Posts: 17,186
    edited February 2011

    Well they do say women who haven't have vaginal births are more likely to suffer from vaginal atrophy after menopause. Ms. Jetson probably had at least on vaginal birth.

    pixelpup have you discussed using low does estrogen with your onc/gyn? I'm so sorry this is happening to you.

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  • pixelpup
    pixelpup Member Posts: 49
    edited February 2011

    Yes, I just talked to my Onc yesterday.  He says he'll give me the Vagifem back if I start taking Tamoxifen... I just got my saliva test results this morning and my estrogen level is only  0.5 (range is 0.5-1.7 for postmenopausal women.)  It seems to me that the side effects would outweigh the benefits of taking Tomax when my estrogen level is already so low.  Does that make sense?  Of course, he is adament about me taking it. He just doesn't get the concept of QOL!

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited February 2011

    Never heard that before Lago about the vaginal births.  How do vaginal births protect us from atrophy? 

    Pixelpup, your Onc sounds like a tyrant.  Maybe you'd be better off switching to someone else.  Are you currently taking an aromotase inhibitor?  On tamoxifen, even if there is a lot of estrogen floating around your system, the tamoxifen will block it from the breast cancer cells.  But if on the AIs, even though they drive estrogen down to almost 0, I guess your Onc is thinking, whatever is there will go to the BC cells?  But there are studies out there showing that starting vaginal estrogens initially causes an estrogen spike, but later once the local tissue plumps up, much less of it gets into the circulation.

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  • pixelpup
    pixelpup Member Posts: 49
    edited February 2011

    Hi Rose,

    Yes, I agree that I need a different Onc.  Unfortunately, I'm with Kaiser Insurance and I think that any of them would share similar opinions.  My Onc has not allowed any estrogen from the beginning and I understand that. However,  I had to have surgery to have a urethral caruncle removed 4 months ago because the treatment would have been a few weeks on Vagifem and he would NOT allow it...pretty extreme I think.  I believe that  having major surgery was more of a hit to my body than a few weeks of Vagifem!  Anyway,  there's no talking to him.  I may have to go out of network to get any other opinions. 

    He will give me the Vagifem if I get on Tamoxifen.  I guess he feels it will be blocked. I tried the AIs and the side effects were intolerable, but my Onc is just so adament that I be taking a drug for 5 years.  I really don't feel that's the way to go anymore...at least for me.  I have a 76% chance of no relapse without the drugs (according to the Oncotype Dx)  and I think all the lifestyle changes I've made will increase that. When it comes right down to it, I think the treatment we choose should be OUR decision.  I'm just not willing to give up all QOL to be so miserable on those meds for 5 years!  Unfortunately, my family and some friends don't agree with my decision.  I wish this was easier...

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  • lago
    lago Member Posts: 17,186
    edited February 2011
    rgiuff I read it here on the Mayo Clinic site:
    http://www.mayoclinic.com/health/vaginal-atrophy/DS00770/DSECTION=risk-factors  
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  • york
    york Member Posts: 6
    edited April 2011

    I need to talk with someone about this. I am a survivor 62 years old and 14 years cancer free.

    But my oncologist would not want me to use estrogen. I have vaginal athrophy, pain

    and bleeding with sex.  Now my husband is sick and has parkinson and we are intimate

    but not like before.  Neither him or i CARE, WE CAN satisfy ourselves in other ways

    and I don't want to treat the vaginal athrophy. If I did I would use the vagifem.  I used it before

    but came off of it.  Is it terrile if I don't treat the problem, does anything say you have to

    treat the problem?

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  • lago
    lago Member Posts: 17,186
    edited April 2011
    York I think you can discuss this with your doctor but if it doesn't cause any other issues and you and your husband have other ways to be intimate, and you're satisfied with that I doubt it's an issue.
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