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

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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Jul 30, 2020 01:47AM jons_girl wrote:

runor:

Thank you for posting your comments. Lol. You made me laugh. But I agree and understand what your saying. Yes I have a choice. I agree. For now tho it’s not a choice I’m going to choose. I did find a product that’s hormone free that is a good option for now. Thank you tho for reminding us we are the ones ultimately that’s makes our life’s decisions

Have a great wwek

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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Jul 30, 2020 10:58PM jaybird627 wrote:

I may have posted this before but I use Estrace cream. First BC at age 44, 2nd BC at age 57. After my 1st BC and then having my ovaries out my vaginal dryness and subsequent atrophy was horrible. My gyne said the Estrace cream was okay as so little is absorbed. My then onc was opposed of course . As I wasn't sexually active for a few years I stopped using it but had terrible dryness/bleeding. My current onc is opposed but my current gyne is okay prescribing the Estrace (I've moved from one state to another) . It's a game changer (I hate that phrase - lol) and I only use it about 1x/week. I'm 60 and willing to take the chance. Previous tries of coconut oil, Vit. E oil, etc. never made a difference like Estrace does. We find our own paths with/after BC. Good Luck out there!


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; Reconstruction (Left): Silicone implant; Reconstruction (Right): Latissimus dorsi flap, Silicone implant
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Jul 31, 2020 01:19AM hikinglady wrote:

Jaybird—I’m similar. #1 bc was age 45, #2 age 60. Also got Rx from OBGYN for Estrace after atrophy while on Tamoxifen and then there was For Realmenopause. However, my MO has not ever objected, and feels that research doesn’t support thinking that it’s systemically absorbed. WHEW. My tissue is comfortable and healthier in every way, and I am scrupulous about not overdosing, since the amt I use is also what’s considered to be safe....

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; Lymph node removal (Right): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander 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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Jul 31, 2020 08:38PM jaybird627 wrote:

HikingLady, it's about my QOL. I can maintain 1x/week dose. I'n on Anastrozole so I really need this drug. Nothing 'natural' has ever worked for me. And everything I've read says it's not going to cause BC. We all find our own path after BC.

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; Reconstruction (Left): Silicone implant; Reconstruction (Right): Latissimus dorsi flap, Silicone implant
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Aug 2, 2020 03:50PM jons_girl wrote:

Good points. We all have to make our own decisions on what is right for each of us. Have a wonderful week everyone!

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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Aug 2, 2020 08:23PM hapa wrote:

Does anyone know how Estrace cream is made? I'm vegan so Premarin is a no-go for me.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2- Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Radiation Therapy 10/22/2018 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Aug 2, 2020 08:47PM moth wrote:

hapa, hey, fellow vegan, I looked this up a while ago. Estrace is made of estradiol which is made from yams & soy. See Table 1 on this page

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Aug 3, 2020 10:37PM hikinglady wrote:

I understand Estradiol to be produced from plants, as moth shared, hapa ---it might be something to ask your pharmacist about. They're good at explaining how chemicals/hormones are synthesized.

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; Lymph node removal (Right): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander 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 12, 2020 10:45PM - edited Aug 12, 2020 10:46PM by life1963

Hiking Lady and Jay Birds I too am taking Anastrozole and I'm having extreme issues with dryness. I can't even wear a thong anymore it's just too damned uncomfortable. SEX?! Boy I don't even know what that's like anymore. I have given up on that completely. No urge no nothing. Which is sad, miss it, but this is medication just really wipes you out. I have been taking it for about 2 years now and my joints are starting to hurt, the bottom of my feet hurt all the time, hot flashes at night when I'm trying to sleep, extreme dryness, and pure exhaustion and weight gain. My gynecologist also just gave me a box with estradiol cream. It says 1 gram vagina twice-weekly as directed. But honestly I need a little bit more guidance than that. Can you ladies let me know how much you use once a week? I decided I'm going to try and get past my fear and just go for it. I think I read somewhere, can't even remember which post. it was out here where somebody was talking about a broken vagina and can you really truly continue to deal with it and not be miserable. Sometimes you do just got to take chances. However hiking lady you said something about being very diligent on how much you use. I was wondering what that dose was? I too am tired of being uncomfortable!

Dx 12/28/2017, DCIS, Right, 3cm, Stage 0, Grade 3, 1/23 nodes, ER+/PR+, HER2- Surgery Lumpectomy; Lumpectomy (Right) Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Aug 13, 2020 12:03PM - edited Aug 13, 2020 12:08PM by jaybird627

Hi Life1963,


I think I started the cream daily for about a week, maybe 10 days, then was able to maintain on the once weekly dose. I had terrible atrophy and dryness/pain/bleeding. The cream does work for me. I occasionally do 2 doses in a week if I feel dryness/irritation. I think when I take Claritan D for allergies it makes me dry everywhere. lol.

The dose I use is about an inch into the applicator. Sex drive? Not much for me. Mostly because I'm still doing reconstruction - I have one foob

with capsular contracture (to be fixed maybe next year?) and one mostly flat non-boob (from Lat flap surgery). Don't feel sexy at all! :(

Getting new expander in October after 20 hyperbaric oxygen chamber sessions before the surgery to help with healing. Maybe when I look more 'normal' I'll feel better and want to date? One can hope!

Anyway, the cream works for me and without being graphic I can actually 'take' something inside me now. Before even a finger was irritating.


And as for joint pain and stiffness, I take a lot of supplements and stiffness only occurs when I sit with my knees bent for a while. I use Voltaren gel on my knees which may or may not work but it doesn't hurt. lol.

Good luck!

J~

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; Reconstruction (Left): Silicone implant; Reconstruction (Right): Latissimus dorsi flap, Silicone implant

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