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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.

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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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Sep 14, 2022 12:14AM trinigirl50 wrote:

HRT definitely increases the chance of developing Lobular breast cancer. I am a text book case. However ILC is fairly uncommon, so for most women HRT will be safe - until you fall into the "fairly uncommon" stats.

Vaginal estrogen creams do not increase your chances of developing cancer (there has been no statistical evidence to my knowledge) and are safe to use. I am not an Oncologist nor a gynecologist but I think I have ready every article (in medical and scientific sites) - well... enough to have an informed opinion.



trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal; Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right) Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole breast: Breast, Lymph nodes
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Nov 11, 2022 08:55PM gailmary wrote:

Runor,

You made some great arguments. My dr talks to me like treatment is always my choice. But I've seen him not to happy when one doesn't follow his advice.

did you ever get a script for estrogen cream? I talked with a new gynecologist the other day for lichens sclerosis. She said it's still a no- no for stage 4. But if quality of life were an issue then could get some if I sign some informed consent paper. It would be a suppository for a low precise dose. But only after I try both the steroid cream for the lichens sclerosus and hylauronic acid suppositories. And lube with sex. It is getting better.

First time in 47 yrs DH is showing less interest but knowing him he just doesn't want to hurt me. Funny that didn't matter years ago. Cancer changed that. Hope to get back to it regularly again.

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)
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Nov 12, 2022 08:01AM kbl wrote:

I’ve been using the estrodial for over six months now, probably longer. My tumor markers are accurate for me and are still dropping. I only use a pea-sized amount twice a week, I don’t use the full dose. Mine was a quality issue, and my GYN didn’t hesitate to prescribe it, thankfully.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Nov 12, 2022 10:42PM runor wrote:

Gailmary - I have never heard of lichens sclerosis. I had to go look it up. Ewww! This raises the question, is LS the same as vaginal atrophy caused by too few hormones to the lady parts? Is it the same thing by two different names? I guess not since men and children can get it too. Men and children are not suffering menopause, thankfully!

Since writing my above, ranty posts I have NOT gotten a new prescrip for vaginal estrogen cream. I still have bouts of miserable vagina.   At times the attack of itch or burn is so intense it makes me drop whatever I have in my hand, grip my crotch while yelling, OH MY GOD!  As if a wayward piece of hay has found its way into my gonch and is attacking me. Anyone who has ever had a loose piece of hay assault their vagina will know exactly what I mean. Anyhoo ... after looking up many articles on ways to moisturize one's vagina and reading over and over that one should never use Vaseline on their vagina, I used Vaseline on my vagina. Guess what? It works!

I know that when my daughter was in diapers I would slather her from one end to the other with Vaseline to prevent diaper rash. She suffered no ill effects. So, in desperation I spread a small amount on the itchy bits that were dry and sticking to my underwear. Guess what? Sweet relief! Stopped the itching! Has it solved the painful sex issue? No. But it has stopped the immediate muff misery though. Took a few days of applying to get the upper hand. Now, immediately after bath I rub a bit on the pee flaps because soap is KILLER and I rarely use soap down there because I suffer for it. The only downside that I think of with Vaseline is it seems to create a bit more of a raunchy odour. But if that's because of the Vaseline or because my vagina is slowly decomposing, I am not clear. Try it. It's cheap like dirt . Don't go shoving a wad of it up your vagina, this is just for 'chapped lips'. No kidding!

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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Nov 13, 2022 02:51PM cardplayer wrote:

runor - I was diagnosed with LS shortly after my BC diagnosis. I was having awful symptoms from what I thought was vaginal atrophy and went to see my GYN, who diagnosed me (biopsy and sight). LS is different than vaginal atrophy. It’s a skin condition and external to the vagina. I have steroid ointment and other OTC stuff that I use externally to help manage symptoms. I use a vaginal lubricant for the vaginal dryness.

Have you tried warm water sitz baths to cool your symptoms? Have you tried any of the vaginal lubricants? Sorry your dealing with discomfort

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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Nov 13, 2022 03:20PM miriandra wrote:

This just came across my feed, and it was too appropriate not to share. 😆😂🤣

https://www.facebook.com/100000726944934/videos/602613618087826/

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
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Nov 14, 2022 06:12PM gailmary wrote:

runor, you are correct LS is not the same as atrophy. I described my symptoms to gynecologist on a video visit and she said she had to look. Symptoms didn't match atrophy.

1. Pain with sex.

Feels like papercuts,burning pain. Actually skin is cracking. Could bleed.

2. Itch. Not as intense as I've had, but still, yes itch. Particularly at clitoris.

3. Take a mirror and flashlight and check your crotch! Really Can be a minor areas of white patches or larger areas. Mine was just white clitoris.

Areas of inner labia can shrink and fuse in weird ways too.

Good luck

Gailmary


Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)

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