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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Feb 6, 2022 10:15AM - edited Feb 9, 2022 04:42PM by anothernycgirl

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!


Dx 1998, DCIS, Stage 0 Surgery 3/18/1998 Lumpectomy; Lumpectomy (Left) Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/11/2000 Lumpectomy; Lumpectomy (Right); Lymph node removal; 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; Lymph node removal (Left); Lymph node removal (Right); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 5/2/2014 AC + T (Taxol) Surgery 11/20/2014 Reconstruction (Left); Reconstruction (Right) Surgery 1/14/2015 Reconstruction (Right): Tissue Expander 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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Feb 9, 2022 11:12AM - edited Feb 9, 2022 11:12AM by rebeccaa

Good morning,

I have gone through and am still going through many of the same things discussed here. After a Stage III diagnosis nine years ago, I was on Tamoxifen until 2020 when I had a second estrogen-positive breast cancer. Since then I have been on Letrozole. The effects are much worse than from Tamoxifen. I experienced thinning hair, increased joint pain, less energy, and lots more vaginal drying, itching and general discomfort. Miserable!

A year and a half in, things seem better, maybe. For the hair issue, which was my first concern, I bought an iRestore helmet after reading comments about it: I use it every other day unless I'm away from home. The increased hair shedding I had at the start of Letrozole has stopped, and I've noticed some hair regrowth. The results aren't dramatic, I've never had thick hair. But I no longer feel that I am looking older each day and wanting to hide away. The hair situation is not worsening, and that is a relief. I also use Viviscal every few months and take Biotin.

For the vaginal issues, I tried Replens recommended by my gynecologist. Last summer, I had a miserable time with dryness and itching. It was making me crazy, and I did not want to do anything with my husband for fear of becoming irritated down there. I finally talked to my oncologist, who prescribed Intrarosa. It took a couple of tries until my insurer approved it. It was not on the formulary. Even with approval, I still pay around $85. After reading different comments here and elsewhere, I became hesitant about using it. Instead, I stuck with Replens every two to three days and rub a little BioOil on the outside area after showering. I read about Reveree and tried that for about a month,but I did not notice any difference from using Replens. It was all still just meh.

I saw my oncologist recently and again discussed Intrarosa. He suggested that I give it a try and assured me that he would not prescribe something if he thought it might undo the progress I've made. So. I have started using it this week. So far, I have not had any problems with it. I read complaints people had about dripping, but it is no worse than when I used Replens or Reveree. In fact, that seems less of an issue with Intrarosa. That dry feeling seems a bit better so far. It is too early to know whether there will be any real improvement or whether I'll have side effects that make me quit using. Weight gain would be a deal breaker! I already struggle with my weight. I would appreciate hearing from anyone who has had a good experience with Intrarosa. I'll update on how it is going.

Here' s hoping for good days for us all







Dx 9/2013, IDC, 6cm+, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 9/25/2013 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Targeted Therapy 10/28/2013 Herceptin (trastuzumab) Chemotherapy 10/28/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/13/2014 Radiation Therapy 3DCRT: Breast, Lymph nodes
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May 5, 2022 11:17AM - edited May 5, 2022 11:19AM by indahood

Great thread girls,

I'm here because after 4 years of BC treatment and LETROZOLE which is an aromatase inhibitor, I have realised that I have sexual dysfunction. Why only now? Well because I am single and through the cancer treatment have not been sexually active. But a month ago, I got lucky, or so I thought at first since by the end, I didn't feel so lucky. The gentleman was a total gentleman but the sex was a disaster. for me, this was the first time I'd slept with a man in their 50s so that was a new learning curb then on my part...

There was NO way there would be any intercourse. It felt like there was a wall up in my Vagina and Sex was excruciatingly painful. We messed around a bit and while that was nice, It was really hard for me to feel aroused. I'm pretty sad about this. This encounter was a one night fling, but now I'm not sure I want to try that again for fear of a repeat with someone new and fear of disappointing sex. (don't read me wrong) I'm not out getting laid all the time, it's just before Cancer, this was an area where, even though sex was few and far between, when I did have a romantic interlude, it would be pleasurable, not painful and upsetting. Went , to the doctor and my vagina is a mess. My outer and inner labia have fused and I have rectocil prolapse pretty badly. Doctor said my vaginal skin was like rice paper and even just touching it made it bleed. Doctor does Mona Lisa treatments, (vaginal lazer rejuvination) but even the thought of that is really scary and it's expensive. Oncologist gave me permission to use estrogen supositories but really? I spent all this time eradicating estrogen, now I'm going to put it back in. He also took me off Letrozole and put me on Tamoxifen for my last year.

The only issue I can see so far with the Tamoxifen is I've been all over the map with my moods. Totally lost it on my boss yesterday and stormed out of work. (not to worry, I have a highly protected job) but looks unprofessional to say the least.

Feeling pretty alone today.

Thanks for listening to my rant.

indahood

Dx 10/30/2017, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR-, HER2- Surgery 12/1/2017 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 2/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3DCRT Surgery Mastectomy; Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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May 5, 2022 02:03PM cardplayer wrote:

indahood - I was taken off estrace when I was diagnosed. I use a vaginal moisturize every other day, but having no estrogen in my body makes me feel like I’m fighting a loosing battle. I’m in my mid60s, so my sex drive waning. But still…

Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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May 5, 2022 08:10PM mle42 wrote:

Indiahood, I commented on the AI thread where you posted, but was going to go back there and direct you to THIS thread, so I'm glad you already found it! I'll repeat my suggestion here that you get referred for a pelvic floor physical therapist to help rehabilitate everything. If you're not crazy with your current moisturizers, I've found coconut oil/VitE suppositories really helpful for moisture (just pop one in when I go to bed at night). There is pretty good data about the topical/vaginal estrogen creams having little/no exposure in the rest of your body (which is where the risk would be after a hormone-receptor positive breast cancer), so if your oncologist is OK with it, you might consider it.

Dx 5/17/2021, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Surgery 10/25/2021 Lumpectomy (Right); Lymph node removal (Right): Sentinel Radiation Therapy 11/30/2021 Whole breast, Radiation boost: Right breast, Lymph nodes Hormonal Therapy 1/1/2022 Arimidex (anastrozole) Targeted Therapy 2/17/2022 Verzenio Chemotherapy AC + T (Taxol)
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May 5, 2022 08:27PM karen1956 wrote:

Indiahood - my oncologist prescribed vaginal estrogen for my and I was strongly ER/PR positive when diagnosed. It helps.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jul 18, 2022 03:06AM c-squared wrote:

Gosh, I'm really not sure where to post because I have multiple concerns! I am (celebrating) 10-year survival s/p Stage IIB ILC treated with Taxol followed by A/C (Adriomyacin); double mastectomy, reconstruction, and Letrozole x 5 years! I have undoubtedly experienced vaginal dryness & pain to the extent that my husband and I no longer have intercourse ( I am 58 and he is 67yo - there is no ED issue) I really used to enjoy intercourse and I don't know how to fix the dryness issues without the introduction of estrogen. I have tried all of the lubricants that have been suggested with little help. I ALSO underwent vaginal restoration via the JULIET procedure. It sounds like I need to have a conversation with my OB but that procedure is also painful! Thank you for your inspiration ladies! I COMPLETELY trust your experiences and I look forward to continued collaboration with you! It's been a long time since I've been active again and I look forward to reconnecting with my "sistas"!!!

Surgery 7/5/2012 Lymph node removal (Right); Mastectomy (Left); Mastectomy (Right); Prophylactic mastectomy (Right); Reconstruction (Right)
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Jul 18, 2022 08:03AM moderators wrote:

Dear c-squared,

Welcome to Breastcancer.org, and thank you sharing your experiences and reactivating this popular and helpful thread. We're sure you'll find it an incredibly supportive space!

If there's anything you need help with or have any comment for us, you can contact us at any time. We're always here!

Best wishes,

From the Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Jul 18, 2022 12:00PM cardplayer wrote:

Congratulations c-square on 10 years survival!

I had Mona Lisa Touch procedure after menopause ( before breast cancer). I didn’t find it very effective although the reviews indicate other women have had success. I have read about vaginal dilators and vaginal dilator therapy, but have not used it myself. Maybe your GYN is familiar with it.


Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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Aug 1, 2022 05:49PM defyfightwin wrote:

I am so glad to find this thread. I am a 9 year Thriver/Survivor and have not had intercourse with my husband in well over a year. I am estrogen depleted. I was on tamoxifen for 5 years and have been on Anastrozole for 4...the anastrozole is what dried me up. My GYN says you have no blood flow to your vaginal area...I guess due to lack of use. Hard to use when you aren't' aroused. I have tried multiple methods of lubricants with no success. I am grateful I have a husband who is 69 and who loves me no matter what. Funny, I try to get a pulse on my girlfriends and their sex lives...many are not very sexually active anymore, but very much in love. Cancer sucks, but I'm alive and loved. Still, would love to make love to my husband again, like the good ole' days. (winking emoji)


Jane

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