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I WANT MY MOJO BACK!

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  • hikinglady
    hikinglady Member Posts: 625
    edited August 2020
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    LIFE1963 I use my Estradiol cream as directed on the Rx package and as directed by my OBGYN who prescribes it. 1g (measured in an applicator) 3x/week. I measure it carefully, and use some of that measured dose (a dab) outside my vagina. I use my finger to apply that dab to perineum, around anus, on vulva & clitoris, and then I use the applicator, or my finger, to apply the remaining part of the dose inside my vagina. When I first started using it, the instructions were to use daily for 2 weeks, then move to this dosage. I find that using it 2-3x a week keeps me comfortable. When my tissue is healthier, so is my libido, and arousal is again possible.

    RE: your other discomforts.... I have a lot of those, too. Haven't gained weight, but can't lose much. I have aches and pains, and I have hot-warm flashes. All of it is kind of a dull hum in my body and brain, not a roar. I stay active, wear layers to bed, have a little fan by my head in bed, get up and move a lot in the daytime, do 1 hour of exercise daily and drink a lot of water every day, and sometimes take an NSAID when joint aches are a challenge. All of this helps me. I'm pretty miserable when I skip exercise or don't drink enough water. I wrestle always with being grateful to have a good treatment plan BUT also feeling a bit resentful that I have to lose some QOL along the way. It's more of a Grrrr than a loud scream in my head. Sending you empathy.

  • life1963
    life1963 Member Posts: 364
    edited August 2020
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    Thank you ladies for answering my questions and helping alleviate some of my fears! I also noticed some of you said you take certain supplements for the side effects of anastrozole. If you wouldn't mind letting me know what those are that would be wonderful! Currently I am taking vitamin B, vitamin D and magnesium.

  • cindyny
    cindyny Member Posts: 1,177
    edited November 2020
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    No posts in a while, so I'm guessing everyone is good as could be. Or the pandemic has us focused on something besides mojo.

    I last saw my gyn in September as a follow up. She recommended coconut oil. She even gave me an applicator, showed how much (very small amount) to use, and said her other patients who have used it had great improvement. After showering, and before bed, was her suggested time for use.

    A few weeks later I bought a big jar of it, opened it and spooned some of it into a smaller pill bottle to put next to my bed. As a side note, I live in upstate NY and it had been cold. My upstairs, where the bedroom is, is colder than downstairs. My little pill bottle was solid as a rock. The first time I used it I had to scrape the applicator along the top...lol, it would not plunge in.

    Then my first time inserting it could have been a comedy act. I insert, plunge, remove it with the coconut oil/solid still hanging out of the applicator - a little softer but still intact. OK. Repeat. And whatever you do, don't touch any of it, as body temperature turns it into messy oil. (confession, yes I did end up rubbing my dry legs with my oily hands)

    It reminded me of the first time I tried to use a tampon and went through half a box before it was ok to sit with it in, w/o discomfort. I digress.

    Anyway, it's been over 2 weeks, some applications go easier than others. Most still make me question my sanity, but I'm still doing it so I must have hope. Mojo or no mojo, I could end up with really soft legs.

    Find the humor in it, and have a good laugh.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited November 2020
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    Cindy, - I can identify completely! Your description is so accurate! ;)

    I used coconut oil exclusively for a while, trying to form little suppository shaped inserts, keeping them in the fridge. They became too hard, and sometimes sharp (ouch!) so I keep a little jar by my bed. I, too, have smoother legs now ;)

    Thanks for the smiles!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited November 2020
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    Hi Everyone,


    Haven't posted here in a while. Haven't had intercourse in maybe 3 (?) years. Was using estradiol before my 2nd BC in early 2018. Found a new gyne here in GA (moved from IL) and while my onc isn't for it both last gyne and new gyne understand that vaginal atrophy is a real thing and for me the only solution has been the cream. I maintain at 1 dose/week. I'm actually able now (again) to insert a dildo/vibrator without too much discomfort. I've met a man who I'm interested in dating so I'm going to try to get my sex drive back! I'm still going through reconstruction (failed implant on one side) and am hopefully on the upside now. Its hard to want to date when you look all mutilated. I guess we all use what work for us as individuals. I'm on an AI and am not concerned about the small dose of estrogen in the cream.


    Jaybird ~

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited February 2021
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    So grateful for this thread. I am 4 years, 10 months into Letrozole treatment - two more months to go. My Onco already had a Breast Cancer Index test done and I won't benefit from continued use of Aromatase Inhibitors so come March 31, I'm done.

    My question(s):
    1. Will I get ANY sex drive back once I stop taking the AI? I'm in my mid 60's, widowed and didn't have a partner until about 2 years ago. We have intercourse but it is painful and unsatisfying. I really miss feeling sexy :( I use lubricant and vaginal moisturizer but still not because the urge just isn't there. Please - if anyone has stopped AI and is roughly my age, let me know if you 'got your mojo back'.!!

    2. Will my hair grow back? I lost hair in my upper temple area and had overall thinning by about a year into AI treatment. When I stop taking AI, will I see any hair regrowth??

    Thanks to all who share their experiences here. When I went through breast cancer nearly 5 years ago, I was alone and had no one to share with except the wonderful ladies on these threads. What an amazing resource you all are!


  • miriandra
    miriandra Member Posts: 2,075
    edited February 2021
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    Congrats on graduating from AI, Sunnyone! I hope you see the improvements you're hoping for.

    I can't speak to question #1, but as for hair loss.... Following the advice of another lady in BCO, I started using a biotin shampoo. Almost immediately, I noticed a reduction in shedding. I haven't noticed my hair thickening yet, but that takes a few months for new hairs to grow long enough to make a difference.

  • karen1956
    karen1956 Member Posts: 4,520
    edited February 2021
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    Sunny - my hair thinned on AIs and yes, it thickened up went I stopped them.

    Miriandra - where are you in Denver?

  • miriandra
    miriandra Member Posts: 2,075
    edited February 2021
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    Hi Karen! I'm in SE Denver, just shy of the Aurora border.

  • karen1956
    karen1956 Member Posts: 4,520
    edited February 2021
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    I'm not too far from you - also SE Denver

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited February 2021
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    Karen and Mirianda - Many thanks for your replies and advice. I am grateful for having a treatment like AI that helps prevent recurrence and especially grateful that I've been able to mostly put breast cancer behind me and move on with life. It's these little reminders like the loss of hair and mojo that I hope will return, even if just partially, once AI's are behind me too.

    Sunnyone

  • kathabus
    kathabus Member Posts: 45
    edited February 2021
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    I just went to a gynecological appt with a new doctor (for me). She is part of the high risk breast clinic and deals only with menopausal patients. She highly recommended uberlube for intimacy. Click on the link below for her comments on it. Even though it's silicone based, it's pretty "clean" stuff. She said that she has found that water based products simply don't last for most people. Thought I would pass along the recommendation if anyone is looking for something.....

    https://www.uberlube.com/articles/2015/8/23/a-qa-with-dr-barb-depree

  • moderators
    moderators Posts: 8,067
    edited February 2021
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    Jumping in to let you know that HEAL magazine (part of CURE Media Group) is interested in interviewing people about the sexual side effects of cancer treatment,. The writer is on a tight deadline, so in case you may be interested in sharing your experiences, please email or call Katherine Malmo katherinemalmo.com/portfolio, Phone: 206-498-4783. Thanks!

  • miriandra
    miriandra Member Posts: 2,075
    edited March 2021
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    Dr. Lindsey Doe made a wonderful video about sex and cancer. Be warned - she speaks very frankly (but warmly) about sex and sexual options, including non-traditional and kink suggestions. She also lists quite a few resources for people with cancer who still want fulfilling sex lives.

    sexplanations - Sex and Cancer


  • Socat
    Socat Member Posts: 3
    edited May 2021
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    OMG THANK YOU THANK YOU THANK YOU!!!! I have been struggling with low libido since radiation and I am 3 years cancer free, taking 10mg of tamoxifen 2x daily (I had to split it because the 20mg once daily was giving me severe migraines). Not really any other side effects, except for I don't even think about sex and it is killing me, not to mention my poor hubby! I've looked up side effects of radiation and tamoxifen and low libido is usually way down on the list and barely mentioned, so when I saw this, OMG Thank you sooooooooo much! Let my research begin!

  • runor
    runor Member Posts: 1,613
    edited July 2021
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    I will write this and then delete it in horror and shame and fear that I will die and someone who matters will read this and feel terrible. Namely my husband. Because I do love him. I do. But oh dear god I do NOT want to have sex with him! 

    This thread is called I Want My Mojo Back. Maybe I shouldn't even be writing here because I do not want my mojo back. I used to remember what it was like to desire sex, to have actual desire, and I missed that. I missed that longing and tantalizing promise. Now? Uh...no. Now I want to be left utterly and completely alone. I do NOT want my mojo back. I do not want to be pawed, man-handled and pounced on. I do not want to be sweated on, messed up, only to have life go right back to its platonic sameness 25 seconds after the crushing, urgent need (his not mine) has been tended. 

    I resent it. I resent him when after months in a row of him kissing me goodnight the same way he kisses his mother when he sees her, then all of a sudden there is supposed to be some spark of passion when he rests his hand on my hip? And he makes that stupid face, wiggling his eyebrows up and down. I want to slug him. Oh my god . I have  fantasy flashes where I coil up and scream like a ninja then karate kick him in the throat. I want to scream, I was young and beautiful and firm once, and interested in you and all you wanted to do was give your attention to other things and now that I am old and sagging and flabby and hate myself every second of every day, now that my bones ache and legs cramp and tumble weeds fall out my vagina when I walk, NOW you suddenly want sex? At the snap of a finger and wiggle of an eyebrow? FUCK OFF WITH THAT SHIT!!!

    Wow. Where did that come from? That was pretty hostile. His request or mere suggestion of sex makes me hostile. And I wonder, is this the tamoxifen? Can tamoxifen be used as an excuse for homicide? I think yes and if not it should be. 

    I am sexless. But let's be honest, I have been pretty much sexless for a very long time. Hub is dear and sweet and kind. He is also pre-occupied, married to his job and very used to leaving me behind to pursue anything  that is more important, and that is pretty much everything and everyone. Tamoxifen has taken the dull blade of benign neglect and put a keen, sharp, killer edge on it. I have, in the past, been present for sex.  In attendance but not what you'd call an enthusiastic participant. Resentment grew. It grew teeth. Like a rattlesnake. I can no longer tolerate what I used to. Wait. No. That is a lie. I have said a lie. I REFUSE TO TOLERATE ANY LONGER that which makes me want to commit murder. And the way I feel after these encounters makes me hate him and hate myself and now I just say no. Then feel guilt. Wait. No. Lied again. I fucking do not. I feel justified and seething and like a coiled spring with a ninja scream barely contained.  I fear there is no help for me. 

  • Suz-Q
    Suz-Q Member Posts: 110
    edited August 2021
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    my gyro prescribed testosterone cream 1 gram of cream 3 times per week for libido and 1/2 gram of estrogen 3 times a week for vaginal dryness. It’s perfect! It works! Its the one two punch combo that works for me.

  • jons_girl
    jons_girl Member Posts: 444
    edited November 2021
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    Suzyq: thank you for sharing this info. I'm going to chat with my cancer gyn in dec about this. I tried testosterone cream but I think I need estrogen too.

    I don't want to go on Premarin. But my insurance for some reason won't pay for estradiol cream which I think is more natural!

    ive been using this: https://goodcleanlove.com/products/restore-moisturizing-vaginal-gel-3-pack?variant=31909570248740&currency=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=EAIaIQobChMIuNLm6em49AIVMQV9Ch0-lAdTEAQYASABEgKtqvD_BwE

    The cream works well and comes with applicator

    But being post menopausal I need my drive back which that cream doesn't give of course.

  • runor
    runor Member Posts: 1,613
    edited January 2022
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    I have not been here in a while. 
    I feel ...... numb.

    I know I should want my mojo back. I don't. I just don't. I try to remember what it was like to have desire. Desire. Desire. Hmm, what IS desire? What does it feel like? It's like trying to remember a poem you used to know well and now all the words are gone. I watch shows with two people getting all romantic and I think, aww, isn't that sweet, but I know it's fiction. Made up. Pretend. Because my romantic gene is dead. 

    Sex for a long time has been something I avoided as much as I could. But at least it never hurt. Then it started to hurt! It's hard to get into it when it feels like someone has hooked their finger inside your cheek and is trying to rip your face off. Along with pain, my predisposition to intense bladder infections seems to be back and a few months ago I was actually peeing blood, all thanks to some crappy sex I didn't really feel like having. 

    I don't need mojo. I need a lightning bolt to the head. This is so past mojo. Ugh. (falling on face and laying there, limply)

  • pi-xi
    pi-xi Member Posts: 177
    edited January 2022
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    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.

  • miriandra
    miriandra Member Posts: 2,075
    edited January 2022
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    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.

  • runor
    runor Member Posts: 1,613
    edited January 2022
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    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 sex...coffee for the win! I get more excited about coffee than sex. 

  • Drcharlottetottman
    Drcharlottetottman Member Posts: 2
    edited January 2022
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    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 :)

  • miriandra
    miriandra Member Posts: 2,075
    edited January 2022
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    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

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35
    edited January 2022
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    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.

  • kbl
    kbl Member Posts: 2,733
    edited January 2022
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    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.

  • runor
    runor Member Posts: 1,613
    edited January 2022
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    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!

  • miriandra
    miriandra Member Posts: 2,075
    edited January 2022
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    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!

    BC.org forum - Discovering Asexuality

  • lovemyrhodesian
    lovemyrhodesian Member Posts: 4
    edited January 2022
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    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

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2022
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    Lovemyrhod,

    I'm so sorry that you are feeling that way.

    I think you should do what ever makes YOU happy, - dye your hair, diet or dont diet, make YOURSELF feel good! It is not for your husband to decide!! When I started chemo, there was a 'Look Good, Feel Better' Class. https://lookgoodfeelbetter.org/about/about-the-pro... Maybe they can offer some ideas to make you feel better about yourself! You've been through so much, take care of YOU now!!

    I, too, look in the mirror and cant believe its me. I did have reconstruction, but with many issues, so the final result looks better with clothes on than no clothes! Also, my hair did not fully return, and is so thin on top that I need a hair piece or hat to look ok. My husband has been wonderful throughout, and is very accepting of changes in me, but I am self conscious nevertheless, so I understand.

    Be well and do what ever is best for yourself!