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Everything No One Tells You About Cancer and Your Sex Life



  • TessaW
    TessaW Member Posts: 148

    Thank you.

    I keep reading how tamoxifen doesn't cause weight gain.  After going on a tamox holiday I started taking them again and tracking my nutrition through my fitness pal.   I kept my calories under 1200 a day, sometimes 7-900.  I upped my activity as much as my body and exhaustion would allow.  I went shockingly from 155 to 159 in one week.  Normally I would've lost weight.  Not on tamoxifen.

    I've not had sex in a while.  It's just not there for me.  People can say tamoxifen doesn't affect your sex drive all they want, but they're probably not taking it.



  • Lily55
    Lily55 Member Posts: 1,748

    its change in hormone status that causes this more than chemo. There are vaginal moisturisers you can use, they help make tissuecstretchier, i did not have chemo but feel strange and dry below all the time, not had sex for three years

    NATSGSG Member Posts: 64

    Hello. Don't hv a partner so didn't hv to worry about sex yet... however here's some suggestion without You getting hurt so badly.  My gf,  who has mastectomy aside she And get husband agreed to given each other oral.  President cancer they Hardy engage in oral sex.  But realized it's one way of fulfilling their sexual appetite.  So they experimented and both are happy they wish they tried it sooner...  this way,  she didnt have to different through painful penetration And get to enjoy when it's her turn.  Goodbye luck

  • trvler
    trvler Member Posts: 931

    Thanks for all the posts. This is a big area of concern for me.

  • Suzanne351
    Suzanne351 Member Posts: 1

    I could have written your post. My husband always had a higher libido than I did, but now it is completely gone. Vaginal atrophy makes sex too painful. Think I may try vaginal simulator, don't know what else to do

    Good wishes to you


  • alaskafurrycat
    alaskafurrycat Member Posts: 5

    THANK YOU for posting the link to this book!!!!!!

    It actually made me laugh out loud....It's a brilliant booklet with practical info I'd never heard of before

    Thank you...Thank you...Thank you...Thank you...Thank you...Thank you...Thank you...

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188

    For me, sadly there has been ZERO return to my old self. I'm tired of putting on the happy positive face. Sex is dreadfully painful to the point of where I just can't have it and nothing helps. Cancer destroyed my life. Very sad for my wonderful man who loves me dearly - VERY.

  • april485
    april485 Member Posts: 1,983

    Amen. Pain from vaginal atrophy due to the AI is just too much to handle and add in low to no libido and that is a recipe for a monastic life in the bedroom and my poor husband deserves so much better. We both just remarried in 2007 and I am sure he did not sign on for this.

    Sex life dead at the age of 60? Not what I wanted to say about my sex life but there it is. At least I am not 40. I really really feel for the younger ladies and men. Ugh!!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694

    I hear you, April485. (I'm now 64.) We are still partners here, but even with the 12 1/2 years that have passed since completion of tx, the anger and sadness about the totally unanticipated losses hasn't changed. Tx was my health care provider's choice, NOT mine, thanks to a complete lack of even minimal counseling before and since.

    Those who are under 45 are more likely not to experience this, but I don't think there is much organized effort being made to collect data about it, or about whether it still hits sooner than it would have otherwise, when they age a bit more.

  • placid44
    placid44 Member Posts: 179

    I was 44 at diagnosis, 47 now, and my period has not come back. I had my hormone levels checked at onc's office - very low. I have no "interest"at all. I'm single. Fun!

  • Beachbum1023
    Beachbum1023 Member Posts: 364

    Placid, the things we do not get told about, it can be worse than all the stuff they do tell us!

  • placid44
    placid44 Member Posts: 179

    Thanks. Yeah, they had told me my period would come back and I could still have kids. Ha! Not that I was going to have kids at this point

  • cookiegal
    cookiegal Member Posts: 527

    It sucks. In my personal experience AI's had a much greater impact that Tamox.

    I think you have to do it all. Vagifem+replens+lube+dialators+vibrator+ anything else you can try or dream up. I don't think just one or two is enough.

    I will say switching to Tamox from AI's made it much better.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694


    I posted this in another thread in response to TessaW, and will post it here for you both:

    The weight gain hit me in 2003 the same way it hit you. It became a nightmare that has had no end. Every health care provider I saw about it was in denial about it.

    At age 52 when I was dx'd, I had no history of ever having gained weight that I was unable to lose just by eating less/exercising more. By that I mean, if I gained an extra 5 pounds, I could lose it within a week or so by just exercising 3 times a week for a half-hour and avoiding extra calories. My physical exam form at time of diagnosis lists my weight as 156 pounds, height 5' 7".

    Tx slowed my metabolism severely and it has been an endless struggle ever since. I am convinced that is what is preventing any recurrence for me -- the cause, whether it be the chemo plus the tamoxifen or just the tamoxifen, is uncertain. I believe that it is possible that the slowdown of the metabolism simply prevents cancer cells from dividing fast enough. At the same time, weight gain creates more fat, which then increases the risk for recurrence.

    At first I went to my cancer center's dietitian for help. My breath was analyzed and a daily caloric intake established for me. I received dietary and exercise information that I already knew, that would have worked fine for my pre-tx condition but did not work for post-tx. The dietitian was otherwise very good, but simply had no awareness at all that applied to menopausal slowdown of metabolism.

    Then I saw my NP and got a referral to see an endocrinologist. However, endocrinologists are very busy helping people with thyroid problems and diabetes, and although I was seeking help for this in the big city of Seattle, none of the endocrinologists would see me. At this time I was walking 4 miles a day, alternating with jumping rope 30 minutes a day, with no weight loss. I finally booked with one who very reluctantly agreed to see me. Although I had sent him in advance my records (including recent thorough labs, physicals, my dietitian's notes, and my NP's notes from my annual physical), he retested me with labs. I met with him and he indicated that the dietary intake as shown by labs was ideal. His recommendation was that I should devote 2 full hours every day 7 days a week to exercise such as weight training, while maintaining the diet I was doing (vegetables, some fruits, whole grains, etc.)

    Does that sound like the life we can successfully lead, day in and day out?

    I had researched the information about using metformin (which is in trials for several cancers including breast cancer, to see if it helps prevent recurrences by helping with weight management). I asked the endocrinologist for a prescription for it, and got it. I take a very low dose of it by my own preference, which doesn't help much and would probably help more if I took more of it.

    The problem remains a nightmare for me, over a decade since bc tx. To me it is inhumane for health care providers not to provide thorough advance and post-tx counseling about this, as well as for the extreme change in sensuality and sexuality.


  • RaiderGirl
    RaiderGirl Member Posts: 235


    I am estrogen positive too but the MO told me that estrogen vaginal cream is safe to use because its localized and very little is absorbed into the bloodstream. My PCP said he would Rx it without concern.

    So far I have not needed it the e-cream. I use coconut oil. Its suppose to be anti-yeast, and is not an issue as with other oils. Plus it tastes good (blushing) Its been about 6 months and the hoochie is still ok .

    We should not be asked to give up everything. And its true.MO treat the cancer not the whole person.

  • TeriMP
    TeriMP Member Posts: 10

    Hi raider girl,

    I have heard a lot of women talk about using coconut oil to assist with dryness and I have a big tub it organic coconut oil sitting in my kitchen. ;-)

    Please forgive my ignorance with this question...but do you insert the oil into your vagina, put it only on the outer entrance or on your husband before insertion?



  • farmerjo
    farmerjo Member Posts: 239

    Teri - I asked RaiderGirl the same question a while back and she said to swipe a little around yourself (inside). I think you do it daily to maintain the moisture.

  • Dogsneverlie
    Dogsneverlie Member Posts: 164


    I know I have posted this before out here but truly, with everything - biopsies, lumpectomies, radiation, reconstruction....I think this vaginal atrophy from AIs takes the cake.  I had never even heard of this - shortly after starting the AI, I was OK and then one day it felt like I was being ripped apart.  When you don't know about this side effect, it is very scary.

    My oncology hematology doctor gave me a script for Estring.  I was nervous at first, the estrogen level is very low, that isn't what I was nervous about - it was inserting something and leaving it in there for 90 days!!!!  LOL (I am so old fashioned....typically used maxi pads and only a tampon if swimming.....raised by my dad so........).

    Any way, the Estring IS AMAZING.  Took about three days but after that, I didn't need lubricant for the first 45 days; then I really didn't "need it" but it just felt better with a little lube.  I tried the Replens but to have to use it every three days and I really didn't think it was nearly as good as the Estring.  I am waiting for my Estring script because I didn't order it in time so I will use the Replens that I bought until it comes in.

    COCONUT OIL:  What a phenomenal gift from the Gods!  I have to do breast massage to soften up tissue after the reconstruction and I use it for that and I have also used it for the lube.  Don't be afraid of it!

    I just wish our doctors would tell us about this side effect........we have all been through so much and we understand that we don't all have the same side effects but man, it would not have been as scary for me if I knew about this.

  • doxie
    doxie Member Posts: 700

    I used coconut oil for a while to keep my vaginal and outer area comfortable. Had extreme dryness and bleeding w/o any sexual activity. I'd make little suppositories and keep them in the refrigerator. Worked great, then I became allergic to it. Happened with cocoa butter also. Allergic to both now, also whenever I eat anything with coconut or chocolate. Sad

    So I switched to a mix of 2:1 shea butter and olive oil. Have to melt the shea butter, blend in the olive oil and store it in the fridge. I scoop out 1/8 - 1/4 teaspoon and insert and spread everywhere. No allergic reaction for over 6 months and I'm comfortable down there.

    I've tried replens, but dislike the wasteful packaging. I suspect I'd become allergic to something in it and it would be difficult to tease out what. It's on reserve for when I travel and the shea/olive oil combo is too inconvenient.

  • rozem
    rozem Member Posts: 749

    i was 42 when diagnosed and I experienced (and still experiencing everything you gals are talking about)  During chemopause, not bad.  Start tamox, not bad.  Add in OS - wowza bad - switch to an AI - WORST.  The AI + OS has been the absolute worst thing for me "down there"  - 47 years old and feel like Im 90.  I think Ive complained on every thread but this one so I had to post :)

  • bc101
    bc101 Member Posts: 923

    When I finally spoke up about atrophy I was promptly told that there are many things they can do to fix it. I had atrophy before, but the AI's have made it so much worse. To start, they prescribed DHEA vaginal suppositories. I'm told it doesn't get absorbed through your bloodstream, but I am still afraid to take it. There aren't any studies out there that I can find. I know my team just wants to help me, but they can't guarantee that it's 100% safe, of course. So, meanwhile the RX is sitting in my frig while I'm debating.

    Other things - they set me up with PT and a sex therapist. They recommended some wonderful moisturizers and lubricants. I hope to attempt sex at some point, but just an exam is painful at this point. Baby steps....

  • TeriMP
    TeriMP Member Posts: 10

    thanks Jilly59!!

  • GoodConstitution
    GoodConstitution Member Posts: 11

    Were you forced to mastectomy due to margins? Are you in any discomfort now?

  • GoodConstitution
    GoodConstitution Member Posts: 11

    I have DCIS, have had 3 lumpectomies with a close margin of .5mm. Debating whether to go ahead with radiation or try to get a larger margin or a mastectomy. To get a better margin will impact me cosmetically says my surgeon. And she believes i may have chronic pain after radiation. ??!I am on the smaller side. It sounds like hormone therapy is in my future but I have osteoporosis and history of stoke. Any thoughts?

  • Standbyme
    Standbyme Member Posts: 1

    I really appreciated the info in the booklet. I was just told that I am high risk and my dr wants me to seriously consider tamoxifen. After reading info about it, I noticed that it said that others should not come into contact with my bodily fluids while taking it. I have read a lot of posts that talks about how to deal with sexual intimacy issues while dealing with the side effects, but according to the precautions, most sexual activity would be off limits including kissing, touching of genitals, oral sex amd unprotected penetration. Before I talk to my husband about this, I want to make sure I have my facts straight. For those of you who take tamoxifen or arimidex, is what I said about the precautions true? If so, how do you deal with this with your partner? Thank you so much in advance!

  • trvler
    trvler Member Posts: 931

    Yikes. I never heard any of that. I am interested to hear.

  • cheesequake
    cheesequake Member Posts: 68

    I saw Standbyme's post and immediately thought, "AW HELL NO!!!" I started researching and found the following, about both Tamox and chemo in general:

    Tamoxifen: This medicine can pass into body fluids (including urine, feces, vomit, semen, vaginal fluid). Patients and caregivers should wear rubber gloves while cleaning up body fluids, handling contaminated trash or laundry or changing diapers. Wash hands before and after removing gloves. Wash soiled clothing and linens separately from other laundry.

    Body fluids should not be handled by a woman who is pregnant or who may become pregnant. Use condoms during sexual activity to avoid exposure to body fluids.

    Chemotherapy: In most cases, chemotherapy is excreted in the body fluids for up to 48 hours after treatment, although some agents can be found in excrement for up to 7 days. This includes urine, stool, vomit, semen, and vaginal fluid. If a person has to clean up any patient body fluids during the 7 days after treatment, it is recommended that he or she wear gloves (household gloves would be fine) and clean the area thoroughly with a cleaning solution. Contaminated linens should be washed separately, and one should consider keeping the toilet lid closed if pets or children are likely to drink or play in the water. Some groups recommend double flushing the toilet, although this has not been proven beneficial. Despite all of these recommendations, there is little data as to what danger this limited exposure causes to family members and friends. This is really a cautious approach with little data to back it up. There IS data to show that chronic exposure, as in pharmacists or nurses, may lead to problems with reproductive health (i.e. increased rates of stillbirths, miscarriages, and malformations). As for semen and vaginal fluids, condoms should be used for any sexual activity within the 7- day time frame to avoid exposure. Protection should also be used while on treatment to prevent a pregnancy, as there is risk of mutation and damage to the sperm and egg from chemotherapy.

    I hate this shit.

  • vettegirl
    vettegirl Member Posts: 136

    OMG-I have never heard that before either.  All I can say is Wow....this just keeps getting better and better-NOT!!

  • trvler
    trvler Member Posts: 931

    Nothing in that post really scared me. It said bodily fluids could have the chemical but it didn't say what exposure to those chemicals would do to anyone.

  • jjontario
    jjontario Member Posts: 156

    I just went and googled this and all I could find was one blurb that Cheesequake found. If there was a real risk of exposure from body fluids from tamoxifen you would think there would be more out there about it?? I'm not even going to mention this to my DH. We are still trying to find our groove again after losing 2nd base. This just so sucks. After my breast augmentation I was one of the "lucky" ones who still had nipple sensitivity only to lose it 10 months later to BC. I feel bad for my DH as it now seems to take so much longerto get me there..