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Help with Abbreviations

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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Posts 4171 - 4185 (4,185 total)

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Jun 15, 2019 03:11PM Pamela23 wrote:

For those who have been using estrogen cream, have you found an increase in pleasure? I've been using it for about 9 months and although the pain is gone, I don't feel sex at all. Which leads me to my next question--I was wondering if any of you ladies have trouble with the nerve endings in the clitoral area? I thought it was from chemo because I haven't felt my clitoris since fall of 2016 (I also haven't tasted anything since then so my QOL bucket is pretty empty!!) . Evidently I have clitoral atrophy--my GYN said to smear a little of my estrogen cream in that area for 3 weeks then go to twice/week. I'm at the 3 week mark now--NOT improving.

Then I ran across this when I came home to research it: "When a woman's level of testosterone drops, such as occurs with menopause or the use of hormonal birth control, she could experience a decrease in size, function, and sensitivity of the clitoris over time: a condition known as clitoral atrophy. The use of bio-identical testosterone in a cream, pill or injection can be helpful in restoring not only the size and sensitivity of the clitoris, but a woman's sense of well-being, sexual libido, and vital energy. Within this category, we suggest warming lubricants and stimulating gels to encourage bloodflow and sensitivity to the clitoris. The use of a vibrating device that focuses sensation on the clitoral area can help provide stimulation and make an otherwise frustrating experience, more relaxing and enjoyable." I have no idea about testosterone creams but I have read the testosterone can convert into estrogen.

During my research I this---The University of Chicago Medicine's Program in Integrative Sexual Medicine (PRISM) for Women and Girls with Cancer is designed to identify, prevent and treat sexual health problems in female cancer patients and survivors. We help women and girls learn about, prepare for, and cope with sexual health concerns related to cancer symptoms or treatment. I'm less than an hour away. I plan to make an appointment.

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Jun 15, 2019 03:26PM - edited Jun 15, 2019 03:28PM by jaycee49

Pamela, my gyn prescribed a testosterone cream a few years back. I never used it because I have a whole set of issues that I was dealing with at the time. This gyn was one of the good ones, really smart and compassionate. Of course, she has since retired. I might give it a try. I remember thinking it was just weird at the time. It is probably too old from sitting around to use now.

Whoever said to sleep without undies is a genius. The above mentioned gyn also told me that. Also a genius.

Found it. Shetland. Thank you.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jun 15, 2019 05:09PM ShetlandPony wrote:

Jaycee, I really hope your new gyn will look at the big picture and devise a good plan for you. I hope it includes medical approaches as well as complementary and lifestyle approaches to give you the best chance at vaginal health, and to stop having to suffer like this. I suggest you take a typed, bullet-point summary or timeline with you, something to help her grasp the whole picture without getting lost in too many words and details. And notes about how your own particular case has been unique. Perhaps you already have prepared this.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jun 19, 2019 03:03PM jaycee49 wrote:

Thanks, Shetland. I've been meaning to get back to you. I've been dealing with various aspects of this issue for YEARS and it's hard to put together info for a new doctor. I still have the new patient forms here that I have to fill out. I'll see how much info can be given there and add more, depending on what is going on that week. I'll certainly include my big spreadsheet of the vaginal moisturizers I use. I've been taking fluconazole every other day for about two weeks. The yeast has substantially subsided but when I try to use a moisturizer, which I know I need, I get new discharge and slight burning. Last night, I had to almost PRY open my labia to insert a moisturizer, I was so dry. Definitely created a tiny cut somewhere. There is just so much to tell this new doctor, I dread the process. I've been putting it off but the appointment is approaching so I need to get on it. I also have this dread that she will not be able to do anything, which I already know, and I'll be disappointed. Very deja vu for me.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jun 19, 2019 04:26PM corky60 wrote:

Any time I take an antibiotic I get a vaginal yeast infection. My naturopath recommended that I take SF 722 by Thorne Research. Take 5 twice per day. She says I have yeast living in my body. She recommends that I take it for at least 3 months, preferably 6 months. I just ordered it from Amazon. I will report back after 3 months.

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Jun 20, 2019 05:57PM - edited Jun 20, 2019 06:22PM by tangandchris

This Post was deleted by tangandchris.
My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Chemotherapy 2/12/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 12/30/2015 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jun 29, 2019 09:53AM Pamela23 wrote:

Update on using Premarin for my clitoral atrophy (NOT vaginal atrophy--it worked on dealing with the pain but still no pleasure). I emailed my GYN and told her the the estrogen cream wasn't working and sent her 2 articles that said its TESTOSTERONE cream that is used to treat clitoral atrophy, not estrogen. Guess what? She's prescribing a testosterone cream and the compounding pharmacy will call me next week and send it to my house. Be your own advocate!! :)

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Jun 29, 2019 02:37PM ShetlandPony wrote:

How can doctors go to school for so long and for so much money and not even know basic things? I mean this is a gynecologist!

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jun 29, 2019 09:41PM runor wrote:

Good for you Pamela! It boggles the mind when you have to learn this stuff and then teach your doc. Fingers crossed for good results. Let us know!

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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Jun 30, 2019 06:44PM - edited Jun 30, 2019 06:51PM by thecargirl

To help gain back those "sexual feelings" after taking Arimidex, I tried the "O-Shot and Testosterone cream. The O-Shot is made up of your own Platelet Rich Plasma or PRP. The 20 minute procedure is not painful, the doctor injects your PRP all around your vaginal area. Taking your 90 ccs of blood and spinning it down to get your platelets takes longer. The Testosterone Cream is used every other night in the same areas. My doctor also has me taking 2 Ristela daily, I get it from Bonafide. I think the PRP and cream have really worked and pretty sure the Ristela has helped, that one takes about a month to notice the real difference. I just thought I would share my experience, it does feel good to have that "feeling " again!

9/16 lumpectomy/radiation, Arimidex (2 years) 7mm, pure mucinous, grade 1, stage 1


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Jul 1, 2019 07:41AM TWills wrote:


Thecargirl, My ONC is open to almost anything, even gave me low dose hormones to use vaginally. Last week she gave me samples of the moisturizer Reveree from that same company that makes Ristela, Bonafide, but expressed concerns about a plant based libido helping option of which I think she was talking about Ristela, but maybe not. When I saw her last week I was still complaining about labido and getting something that was just approved by the FDA but won’t be available until at least September, I jokingly said I would get it “bootlegged” until then. She said “fine as long as it doesn’t have or affect hormones” she then mentioned the plant based options that are hormone free but indicated that she felt it would affect hormones too much. Maybe she wasn’t talking about Ristela but I’m going to double check with her on that though. When you read the info on it, sure seems like it should be fine.

As far as getting the other option “bootlegged”, I already did but still haven’t tried it. Not sure why, I guess I’m waiting until ourneighbors are out of town or something just in case it works great. Lol

Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/12/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/9/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/30/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/1/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jul 2, 2019 04:51PM 2002chickadee wrote:

Pamela and thecargirl, what is the difference between using testosterone and estrogen? Estrogen helps with dryness and atrophy, and testosterone helps with .... ? Do those of us with ER+PR+ have to worry about using testosterone? Thanks for your insights!

DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 2, 2019 11:09PM thecargirl wrote:

2002 chickadee……...Testosterone in women helps with a a lot of things, like bone strength but it also helps with an overall sense of well being. It is best know for its role in a women's sex drive or libido (from a print out).Testosterone is a primary sex hormone of women made by the ovaries and adrenals. Estrogen plays a large part in the normal sexual and reproductive development in women, along with a lot of other benefits. I think the Testosterone Cream is more of a sexual stimulant when used on the clitoris. My GYN prescribed the Testosterone and my MO was ok with it.

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Jul 28, 2019 10:53PM Pamela23 wrote:

2002 chick...---I know I have clitoral atrophy from my symptoms so when I googled it, I found this articles:

https://www.healthline.com/health/womens-health/cl...


and also more articles like this:

The clitoris is made up of spongy erectile tissue that fills with blood during sexual arousal. This spongy tissue is maintained by the hormone testosterone and is dependent on good blood flow. When a woman's level of testosterone drops significantly, such as with menopause or the use of hormonal birth control, she could experience a decrease in size, function, and sensitivity of the clitoris over time, also known as clitoral atrophy.
All the tissues of the body depend on good blood flow for their nurishment and functioning. Because of this, having regular sexual activity or some form of clitoral stimulation along with arousal will continue to provide those tissues with the blood they need. Engaging in regular exercise helps by both increasing general blood flow as well as by increasing and maintaining the production of testosterone. Some women also may benefit from having their testosterone supplemented after menopause in order to prevent clitoral atrophy.

My GYN knows about my history and I haven't come across anything saying I cannot use it as a BC survivor.

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Aug 10, 2019 02:31AM - edited Aug 12, 2019 01:56AM by macb04

I started on vaginal Testosterone Cream. Applying in vagina and on Clit for the past 2 wks. Because of my work schedule, I haven't had a chance to " try it out" yet. Still doing Vagifem (Estradiol) twice her week too.

I will let you all know if things go from a badly flickering lighter to something approaching a real flame. I have hopes!

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