Stage IV ladies..need help..ref: Sex :(

NicoleRod
NicoleRod Member Posts: 2,906
edited August 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi ladies...my husband actually asked me to post this...

So we have not been alone together for a month. I began treatment, well Letrozole and Lupron on April 30th Faslodex 3 weeks ago or so and Ibrance about 15 days ago. We finally had a weekend alone and were able to have sex and It hurt so bad I wanted to cry. I used a lot of KY Water Based lube it was definitely lubed enough I hate to have too much TMI here but I need advice it was so tight and painful. The first night I thought it might be because it had been 4 weeks since sex, but the 2nd night same thing is this something to do with the meds/menupause? What can I do if anything??

I thought that would be the one thing that would make me stil feel normal. The one time I could feel like the old me before Stage IV. I went in the shower after and cried (sorry to sound like a baby).

I welcome any advice you all have .

Nicole

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited June 2019

    Hi Nicole, I think it is a common effect from Letrozole, an estrogen blocker. I'm on that too and just asked my MO what I can try for vaginal dryness. I thought I knew about dryness with menopause but that was nothing compared to now!

    There's a very good thread here called “I Want My Mojo Back". Good discussions about what people are doing for intimacy difficulties. Sorry, I don't know how to link you to that or I would. My MO is prescribing me Intrarosa but I haven't received it yet. You'll see that mentioned in the discussions along with other things. Good luck, not like we need another issue!

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Rosie omgosh where you said "like we need another issue"...exactly. I will check out that thread. Thank you for telling me about that.

    Ok I just checked that thread briefly I will check better tomorrow..but one of the reasons I put this here was because I see a lot of them using estrogen creams ...there is no way I can use that so that's why I wanted to see what Stage IV women (mostly hormone positive specifically) are using. I will look at it again tomorrow though. :)

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited June 2019

    Hi nicole,

    Two quick suggestions - water based lube won’t cut it. Silicone is where it is at. I went into a women’s health sex shop in Portland, OR called She Bop and told them my (very common) issue and this is what they recommended. It is fantastic.image

    Second, I also told my MO right away and they prescribed me Premarin. I tried it for a couple days and got sick from it.

    I spoke to my ND who specializes in oncology and she told me she hates Premarin and to ask for Estriol. It is much safer and it is a different estrogen metabolite (there’s three major estrogens: Estrone, estradiol and Estriol.

    Estriol is the weakest and when using in/on the vagina barely if at all contributed to any free floating estrogens in the body. I’ve been on it for 2 years now and doing great.

    It is a specialty pharmacy compound and I need to get it a separate pharmacy than CVS. The folks at the pharmacy I go to for the Estriol creameven told me how evil Premarin is and not to use.

    People on these threads will tell you coconut oil for your vagina. This may help daily externally to combat dryness, but it won’t help internally and can throw off vagina pH even more.

    Good luck! I know it sucks and is quite upsetting. I had a similar experience with my lover. I bled and it hurt. I cried too. But my vagina feels sooo much happier now with the Estriol. I am so grateful for it!!!

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  • illimae
    illimae Member Posts: 5,710
    edited June 2019

    My recommendation is this and practice. It’s actually a vaginal moisturizer and it’s taken about a year but we’ve finally reached a point where sex is totally pain free.

    image

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Thanks ladies. I will definitely ask my MO or actually I go to a new Gyno here in Long Island next week.

    LovefromPhi do I specifically ask the doctor for a script for "Estriol creameven" is that the actual name of it? In the meantime I will look on line for the Sliquid Silver .

    I don't know how often we can "practice" as we are staying in our sons 1bdrm apartment on his couch for the next 2 -3 months till my first scan :(

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited June 2019

    hi nicole,

    Yes yes ask for a prescription for Estriol vaginal cream. Here’s a pic of my container of it in case you want to show it to your doctor. They should know what it is though!

    image

    image

    Also, one thing you can do to help your vaginal tissues since you can’t have too much sex in your sons apartment is to use the lube and gently massage and pinch the inside tissues of your vagina to help increase blood flow and circulation.

    I also bought a vagina dilator set at the same women’s sex shop which has varying sized dilators/vibrators to use on one’s vagina. You gently ease your way up from small to larger to help increase blood flow and elasticity of the vagina wall tissues.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Thanks Lovefromphili !

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Ok so my doctor prescribed Estradiol today. So I hope it helps. I welcome any advice. LoveFromPhilly she didn't say I needed a special script from a compounding pharmacy... does that mean it's not the same as what you have?

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  • Moominmamma
    Moominmamma Member Posts: 40
    edited June 2019

    my doc prescribed a dab of estrace cream 2x a week inside lower edge of vagina for pain and extreme dryness. Also use OTC Aloe-cadabra natural aloe lotion pre-intercourse. Both make a huge difference!

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  • Moominmamma
    Moominmamma Member Posts: 40
    edited June 2019

    my doc prescribed a dab of estrace cream 2x a week inside lower edge of vagina for pain and extreme dryness. Also use OTC Aloe-cadabra natural aloe lotion pre-intercourse. Both make a huge difference!

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Thank you!

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited June 2019

    My insurance denied the Intrarosa because I hadn’t tried other formularies first, one was estradiol cream, I believe. I haven’t contacted my MO’s office yet. Moomim, I plan to look for your OTC aloe product, not anxious to use any estrogen product and doc seemed to feel the same way. Ugh

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited August 2019

    Ok so I didn't get to tell you ladies...I had to stop the Estroil Suppositories because after about 5 days of it my hot flashes stopped and I spotted. That was about a month ago. After stopping 4 days later my hot flashes resumed. So I guess my body is VERY sensitive to estrogen :(:(

    Lovefromphilly I just ordered the Sliquid you showed I got it on amazon.

    My GYN gave me samples of a product called Reveree...it works soooo good you put the suppository in once every few days. The only CON....it's like $60.00 for 10!!!!!

    Does anyone know another suppository that might work well like that, that has no estrogen and is cheaper??


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