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Topic: I WANT MY MOJO BACK!

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

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.

Mena

****************************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: https://sexualityresources.com

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Aug 13, 2020 06:50PM - edited Sep 10, 2020 03:46PM by runor

Life1963, I have often sung the woes of a broken vagina. They ain't no fun at all. I hear you about being worried about triggering a flare up of that old bitch cancer, but if you used to have a sex life and you used to like it and you want to get back to it...you're kind of between a rock and hard place. Well, someone's at a hard place, maybe not you (oh my god I can't believe I wrote that, so bad!)  If you feel safer squirting your little blob of magic kooch cream on your finger and rubbing it around all the mushy outside bits, you can do that too. You don't HAVE to stick that applicator up there and shoot up. I find that the occasional outside slather of Premarin keeps things tolerable. Start small, you can always trade up to internal application if you need/want. The vagina police will not arrest you if you don't follow the rules. 

 

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 15, 2020 10:27AM HikingLady wrote:

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.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 16, 2020 11:07AM LIFE1963 wrote:

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.

Dx 12/28/2017, DCIS, Right, 3cm, Stage 0, Grade 3, 1/23 nodes, ER+/PR+, HER2- (DUAL) Surgery Lumpectomy: Right Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Nov 15, 2020 01:14AM CindyNY wrote:

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.

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Nov 15, 2020 10:46AM anotherNYCGirl wrote:

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!

Dx 1998, DCIS, Stage 0 Surgery 3/18/1998 Lumpectomy: Left Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/1/2000 CMF Hormonal Therapy 2/11/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/12/2001 Breast Hormonal Therapy 2/12/2006 Femara (letrozole) Dx 2/2014, ILC, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 3/25/2014 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/2/2014 AC + T (Taxol) Surgery 11/20/2014 Reconstruction (left); Reconstruction (right) Surgery 1/14/2015 Reconstruction (right): Tissue expander placement Surgery 5/28/2015 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 2/22/2016 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Nov 15, 2020 10:55AM Jaybird627 wrote:

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 ~

Jaybird. My hopes are not always realized, but I always hope - Ovid. Dx 3/5/2005, IDC, Right, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 3/5/2005 Lumpectomy; Lymph node removal; Mastectomy; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant
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Feb 4, 2021 08:07PM Sunnyone22 wrote:

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!


Carpe Diem Dx 1/15/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/14/2016 Whole-breast: Breast Hormonal Therapy 4/1/2016 Femara (letrozole)
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Feb 4, 2021 08:47PM Miriandra wrote:

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.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Feb 4, 2021 11:58PM karen1956 wrote:

Sunny - my hair thinned on AIs and yes, it thickened up went I stopped them.

Miriandra - where are you in Denver?

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 5, 2021 07:43PM Miriandra wrote:

Hi Karen! I'm in SE Denver, just shy of the Aurora border.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Feb 6, 2021 10:20PM karen1956 wrote:

I'm not too far from you - also SE Denver

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 8, 2021 02:07AM Sunnyone22 wrote:

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

Carpe Diem Dx 1/15/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/14/2016 Whole-breast: Breast Hormonal Therapy 4/1/2016 Femara (letrozole)
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Feb 11, 2021 10:57AM kathabus wrote:

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

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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Feb 23, 2021 11:52AM Moderators wrote:

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!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 1, 2021 03:24PM Miriandra wrote:

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


Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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May 10, 2021 06:33AM Socat wrote:

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!

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Jul 10, 2021 01:39AM - edited Jul 10, 2021 01:06PM by runor

This Post was deleted by runor.
Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 20, 2021 11:30PM Suz-Q wrote:

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.

56 at diagnosis. Oncotype DX 10 Dx 9/17/2015, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 11/3/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/14/2015 Whole-breast: Breast Hormonal Therapy 1/21/2016 Arimidex (anastrozole) Surgery 8/4/2016 Reconstruction (right): Fat grafting Hormonal Therapy 10/7/2017 Aromasin (exemestane)

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