Forum: Sex & Relationship Matters — A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Oct 17, 2004 12:45PM - edited Feb 9, 2016 12:04PM by moderators

Posted on: Oct 17, 2004 12:45PM - edited Feb 9, 2016 12:04PM by moderators

Mena wrote:

Hey girls,

You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.


****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!

Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars

Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.

Member suggestion for lubrication during sexual activity:

Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)

Slippery Stuff (free from glycerin and parabens)

K-Y warming Jelly

K-Y Sensual Silk Liquid (paraben-free)

K-Y Liquibeads

K-Y UltraGel (paraben-free)

Astroglide, X (silicone-based)

Platinum Wet (silicone-based)

Replens silky smooth lubricant (silicone-based)

Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)

Additional member suggestion to reduce pain:

Topical Lidocaine solution for use at the entrance of the vagina

Member suggestion for sex toys:

Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles

Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)

Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Observe which antidepressant you take, and make necessary changes

MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.

Easier if she "goes first".

Regular activity is important.

Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.

Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.

Take a look at this resource:

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Jan 12, 2022 07:24PM pi-xi wrote:

Got my mojo back! I completed five years of tamoxifen at the beginning of November. I’m happy and terrified as that means estrogen is coursing through my body.

Oncotype 12 Dx 4/7/2016, DCIS, Left, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 7/11/2016 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Dx 8/3/2016, DCIS/IDC/IDC: Papillary, Left, 1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 9/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2022 12:10AM miriandra wrote:

Congratulations Pi-Xi! I hope you and your partner are thoroughly enjoying each other.

But on a very different note....

Runor, of late, I'm seriously seeing myself leaning toward asexual. Now that I have a major excuse to not have sex, I've found some distance to think about my relationship with my sexuality. When I was younger I had a reputation as a "fun girl". But looking back, I'm honestly not sure how much was what I wanted to do, and how much was what I thought I was supposed to want to do. My identity and feelings of self-worth were deeply tied to my sexuality, and I equated my personal value with whether people desired me. My wit, my intelligence, my talents, my looks were all geared toward making myself desirable sexually. If I went out intending to hook up, and I didn't, I felt like a failure - like there was something wrong with me. Even though I genuinely enjoyed sex, it was kind of a toxic mindset.

Now that I don't have to perform sexually, I can ask myself what I want and what I like. And honestly, I'll take my vibrator over my man most days. I have full control over my sensations and can steer myself to climax much more easily. (I have always had a difficult time maintaining the plateau stage of the sexual cycle unless I'm stimulated in very precise ways. And after a while, it just ain't happening.) Plus, there's a lot less mess to deal with. (I love my husband deeply, but semen is such a chore to deal with.) For now, at least, I'm happier without intercourse. We cuddle, caress each other, wink and smile at each other, and share many affections from a broader definition of sex.

All this said, I'm still very sex-positive. Sex and intercourse is a wonderful way of sharing yourself with a person, and it can be loads of fun. I am not going to tell anyone that they shouldn't pursue healthy sex if they want to. But in my little piece of the world, I think I'm better off without it for now.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
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Jan 13, 2022 04:57PM - edited Jan 13, 2022 04:59PM by runor

Pi-Xi -   I hear you! I resisted tamoxifen tooth and nail. I put that first pill in my mouth with tears streaming down my face. It has been an UNpleasant 4 years. I still have about 9 or 10 months yet to go. I will not miss the limbs that feel like wood and joints that creak or the girl parts that are like desiccated sawdust. BUt when I take that last pill I know I will feel as vulnerable as a lamb under circling eagles. Had chat yesterday with Oncologist who said they do know 10 years is better than 5, but he feels with my specs that he would be comfortable if I stopped at 5. The question is now, how comfortable will I be? He also pointed out that my uterus is not happy with tamoxifen, having exploded once into horror movie level bleeding and now ultrasound says, uh-oh, things are looking bad in there again. So knowing that tamoxifen IS affecting the old uterus, he feels that might weigh into my decision to end it at 5 years. But I do know what you mean. Please to report back if your sex life resumes at 20 year old performance levels. Here's hoping!  (I am Onctoype 11).

Miriandra  -  oh my god woman! Talk about opening a can of worms. I LOVE IT! I wonder how many women are free to admit that they are so done with sex. Just done. I think I am done, but see things for myself somewhat differently. 

I look at myself now and ...yuck! I'm gross. So  gross. I can't look at myself naked. I avert my eyes getting in and out of the tub walking past the mirror. The thigh wobble, the upper arm flab like wings of a gull. The sagging ass and pendulous boobs, one with a scar and pucker and they don't quite match anymore. Chin hairs that only make themselves visible as you are checking your face in the car mirror before going into a social gathering and THEN that massive chin hair the size of a toothpick becomes obvious. My hair in the front is thinning and my bangs do annoying, funky shit they never did before as they try to cover what I swear is a receding hairline. My gut. Oh my god, my gut. It's a thing. It needs its own seat in the truck. I have grown another person just around my middle. I can walk around here all day hungry, refusing to eat and that rotten gut does not budge. There are very few photos of me in existence and that is on purpose. I avoid a camera like a vampire avoids sunlight. It's a shame. I should have pics of me and my daughter or me and Hub. No. They don't exist. When I am dead no one should have to be reminded of my ugly face. All this puts a real damper on feeling sexy. 

Then there is the Hub and his problems. He cannot maintain an erection. Mid sex he loses it. Now, on one level I know this is an age / health problem.  But I gotta be honest and say it's  really a blow when a guy, in the middle of screwing you, goes soft. Nothing about that makes you walk away feeling sexy, desirable or anything. Men used to look at me. Not for years. I am invisible. I am old and I show it. I think tamoxifen has even accelerated the deterioration of my skin. I feel sad and shriveled and non-existent and I just want to be left alone. Mostly I am. Every now and then Hub gets the idea that we 'should' have sex. Like we should rotate tires.  He suggests it, I resist and avoid, he insists and gets miserable, I give in, he can't complete the act and we both go away miserable, bitter and resentful. The whole thing could not be more negative, be more damaging, if we tried. 

I love my husband. I think. In all honesty I don't know anymore. There is a hole there where a feeling used to be. Like a tooth has been pulled and I keep poking around to see if that feeling of love is still there. I have really been thinking that I need some time away. Some time to see how I feel. We have been together 40 years. We have drifted apart. We live in separate worlds. Like all we share is an address. We do things for each other as always, but I don't think we see each other. We have become like furniture to each other and our routines are rote habits. Wow. I am really sucking at life right now. Blah. If someone said that I could either spend the rest of my life with sex but no coffee, or coffee but no for the win! I get more excited about coffee than sex. 

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 7/5/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2022 06:00PM Drcharlottetottman wrote:

Hi there,

My name is Dr Charlotte Tottman. I am a Clinical Psychologist specialising in cancer-related distress. I also have my own lived experience of breast cancer.

We launched my 10-episode podcast series, Upfront About Breast Cancer: What You Don't Know Until You Do with Dr Charlotte Tottman in October, 2021 with Breast Cancer Network Australia. 🤗

Episode 8: Learning New Dance Steps, tackles sexuality and intimacy in a breast cancer context. Feedback from listeners says it’s raw and it’s real.

If you'd like to have a listen or share it with someone you know, the series is available wherever you get your podcasts (Apple Podcasts, Spotify, Soundcloud etc.) by searching Upfront About Breast Cancer, or Charlotte Tottman. 😍

Stay safe,

Charlotte :)

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Jan 13, 2022 08:00PM miriandra wrote:

One thing that can help with having more sex is opening your definition of sex. DH and I may not be inserting tab A into slot B very often, but we do lots of other things to make each other feel loved and desired. Sex can be secretly holding hands in a public place, or rubbing each other's feet. And these cozy activities don't have to lead to intercourse to be sexual.

Many men have ED challenges due to health and age, as runor mentioned. If intercourse isn't the only way to have a sexual experience with your partner, then the performance pressure on him is greatly reduced. This can be a win-win if winning doesn't have to include a climax.

I love Dr. Lindsey Doe's YouTube channel. She's a clinical sexologist and has some amazing videos on all kinds of sexual topics. Here are some of hers that try to open the realm of sex, so those who have issues with "sex" sex can still embrace sex. (Heads up - she speaks very frankly and comfortably about sexual acts and variations.)

Sexplanations - Definition of Sex

Sexplanations - Sex and Cancer

Sexplanations - Asexuality

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
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Jan 19, 2022 07:51AM twoforonespecial wrote:

Runor, We have this amazing new "Nespresso" machine at work. Coffee is the highlight of my day now...

And I agree with most of the other shit you say too.

I don't even want my mojo back anymore. I have had sex once (literally, once) since my dx in August 2020, and at this point I'm thinking maybe I'm just done with it. I'm not sure if my husband even knows I had to get my IUD removed. Contraception doesn't matter if you don't have sex anyways...

Unfortunately, I don't even want the cuddling anymore. I'm in the "if you touch me I might hit you" phase (but I pretend I'm not, since I don't want him to feel that he's the problem... even if he partly is).

I used to fantasize about ditching the husband after the kids leave for college and dating and fooling around with every good looking guy I could think of... now I fantasize about ditching the husband after the kids leave for college and watching all the Netflix I want while eating cereal for dinner.

I think I may have lost more than my mojo, but perhaps that's a conversation for a different thread.

Diagnosis received the day after I turned 50. Happy birthday to me! Dx 8/26/2020, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/21/2020 Lumpectomy; Lumpectomy (Right) Radiation Therapy 12/3/2020 Whole breast
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Jan 19, 2022 12:17PM kbl wrote:

Hi, all! I have not lost my total desire, I just don’t want it to hurt. I am back on Estrace, and it is helping a little.

Charlotte, thank you for the podcast information. I’ll check it out.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jan 24, 2022 12:46PM runor wrote:

TwoForOne ..... Yes! Netflix, cereal for dinner and no guy pawing you and moping around making mess, laundry, wanting to be fed all the time and when not in the above states, sleeping on the sofa at 2:30 in the afternoon. I also fantasize about being on my own. With another man? Oh hell no!! I want a zone FREE of men and what they entail. I might have a man in my life, but not in my personal space. Not in my house. He would be a thing I do when I feel like it, instead of the central axis of my life around which everything revolves.  

I think The Golden Girls seemed like an ideal situation. I want to be Bea Arthur!!  Dorothy Zbornak!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 7/5/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 24, 2022 11:52PM - edited Jan 24, 2022 11:53PM by miriandra

Hi Ladies! I've started a Discovering Asexuality topic thread. Everyone is welcome, of course, regardless of whether you welcome or dread a loss of sex drive. If you have fears, perhaps someone can help normalize it for you and give you confidence. If you have insights in how to maintain a loving relationship without sex, please come and share. See y'all there! forum - Discovering Asexuality

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
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Jan 31, 2022 07:05AM - edited Jan 31, 2022 07:05AM by lovemyrhodesian

I WANT MY MOJO BACK TOO! I used to walk across streets and was noticed, men jumped to open doors, and clothes fit without effort. Now I have short grey hair, 50 pounds of flab, no breasts anymore (mastectomy), dull skin, bags under my eyes, and I feel like a nightmare. Family is nonexistent. Friends and family look at me with blame- why don't you just lose the weight, why aren't you taking care of yourself, why are you so ugly now, why don't you look like you did in 2017? and I look at them look at me and take that morning's AI (exemestane). At least your hub wants to have sex. Mine doesn't come near me. I cannot remember the last hug. After I was diagnosed, he disappeared. His body is still here going to work and coming home but he is gone. The only thing he is definite on is that he doesn't want me to dye my hair and I am beginning to wonder why. I am grateful to be alive and I knew my life would not be the same but I did not realize I would not recognize the person in the mirror anymore.

stage IIIC, chemo, rads, mastectomy

dx: Nov 2017, stage IIIC, grade III

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