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 09:45AM - edited Feb 9, 2016 10:04AM by moderators

Posted on: Oct 17, 2004 09:45AM - edited Feb 9, 2016 10:04AM 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+
Log in to post a reply

Page 428 of 435 (4,347 results)

Log in to post a reply

Apr 16, 2020 08:43PM karen1956 wrote:

Twills - I stopped AIs in 2010 due to side effects. But even when I was on them. onc was okay with vaginal estrogen cream. He says very little if any circulates in the blood stream.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

Apr 17, 2020 09:45AM runor wrote:

Twills, Jaycee is correct. I am on tamoxifen. I use estrogen cream (Premarin) AND I run with scissors so...pretty high risk living all around. 

For me the answer is that there is a debate about this in the medical community. Debate means there is no definitive, black or white answer. Lacking this, it comes down to your doc's personal preferences and philosophy. If his main concern is not being sued if your cancer comes back and you blame him for it for allowing you to use vag estro cream, then he is going to say no.   If your doc is treating you as a whole person and realizes that a broken vagina is a serious impediment to a fun life and feels it is his obligation to mitigate misery where he can, he might say yup, do it, a little dab'll do ya. Where does this leave you? I think it leaves you making the judgement call for yourself. The absolute guidance you want does not exist. Like Jaycee says, you would be lucky to get honest disclosure  which is, we don't really know the answer to that question.

It comes down to you. What do you want? If you want absolute assurance that you have done everything in your power to avoid more cancer, then refusing vag cream and living with a miserable hoohoo is the choice you make. There is no other way to feel you've done everything in your power to ward off cancer. But if you feel that you have X long to live and you'll be damned if you're going to have tumbleweed growing in your panties during that time, then you might have to go toe to toe with your doc for quality of life. 

Having said that, I use estrogen cream very sparingly and very intermittently and for the most part this seems to be a working protocol that keeps my vag from dropping right out in the produce section of the grocery store. (I live in fear that I'll be squeezing tomoatoes one day when my uterus just falls right out, right there, in the fruits and vegetables!)

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 7/4/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Apr 17, 2020 09:52AM miriandra wrote:

Nice sum up, runor. Our priorities will vary as widely as our conditions, and our solutions (or attempts at solutions) will be varied squared.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
Log in to post a reply

Jul 22, 2020 10:34PM jons_girl wrote:

I wonder about the natural (bioidentical) estrogen cream? Or natural progesterone. My breast dr says no hormones....

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
Log in to post a reply

Jul 23, 2020 05:42AM - edited Jul 23, 2020 07:32AM by karen1956

Jons_girl I'm 14 year since Dx. My oncologist has always permitted vaginal estrogen creams - I've used estrace, e-string and currently using Imvexxy which is a little vaginal "bean" of estrace used weekly for two week, then twice weekly. Oncologist says that the vaginal estrogen creams do not circulate in the blood stream and are very low dose. My gyn and pcp also support the use. All the best to you.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

Jul 23, 2020 06:00AM hikinglady wrote:

karen1956 and Jons_girl

Same here--My MO is comfortable with my using Estradiol cream, and he thinks that research shows that it's safe and doesn't raise systemic estrogen levels when used locally, as prescribed.


Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/8/2003 Lumpectomy Radiation Therapy 6/9/2003 3DCRT: Breast Hormonal Therapy 8/7/2003 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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant
Log in to post a reply

Jul 24, 2020 06:56AM jons_girl wrote:

Hi Karen and Hiking lady:

Thank you for responding to my post. I’m very hesitant about hormones. My maternal grandmother (whom I loved very much) had breast cancer twice. Second time happened after she had been on tamoxifen the amount of time the drs said she needed to be on it (7 yrs). After she went off it apparently she was feeling awful. Wanted her hormones again. Begged her gyn. Dr told her he wouldn’t recommend. She pushed anyway to be put on them. Cancer came back with vengeance and Mets and she passed within about a year I believe after being put on them. I don’t know what kind she was put on but think it was Premarin

So even with my menopause crud I’m dealing with, I’m not sure I should ask for any hormones. Not even bioidentical ones. It scares me.

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
Log in to post a reply

Jul 26, 2020 09:19PM karen1956 wrote:

Jons_girl - I hear your concern. I would never take HRT. Vaginal estrogen cream is not the same as hormone replacement therapy. According to my oncologist the vaginal cream is not absorbed into the body. I believe that we have to listen to our hearts and do what is best for ourselves. Trust your heart and gut. All the best to you. Wishing you many, many years dancing with NED.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

Jul 28, 2020 11:01PM jons_girl wrote:

thank you Karen. Yeah hormones in any form just isn’t something my onco dr would approve of.

I do eat natural estrogens tho like flax seed whizzed in coffee grinder. And tofu...flax seeds is very high in natural isoflavinoids.

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
Log in to post a reply

Jul 29, 2020 07:34PM runor wrote:

Jons girl, you do know your onc is your guide and not your boss. He can't actually boss you around. You are an autonomous individual paying taxes and able to vote. If you want vag cream, get vag cream, and if he says no, tell him to pound sand. As I have said in previous posts I use a small amount of Premarin a couple times a year and that has worked to keep things from falling apart. I did not ASK my onc if this was alright (although I did ask his opinion, but not his permission).   I felt it was a risk worth taking because what's the point of being here and alive if your hoohoo makes creaking sounds when you walk and makes you miserable? A broken vagina is no fun!

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 7/4/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

Page 428 of 435 (4,347 results)

Scroll to top button