Apr 1, 2017 01:07PM Molly50 wrote:
Kdtheatreit sounds like a UTI.
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 11:45AM - edited Feb 9, 2016 11:04AM by Moderators
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.
****************************Addition from February 4, 2016***********************************
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
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)
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
Replens long-lasting moisturizer
Luvena vaginal moisturizer
Shea butter melted into olive oil at a 2:1 ratio
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 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
Posts 3661 - 3690 (3,800 total)
Apr 1, 2017 01:07PM Molly50 wrote:
Kdtheatreit sounds like a UTI.
Apr 2, 2017 05:45PM Trvler wrote:
I am confused. Why did the doctor prescribe Ritalin? I have some. My daughter has major ADD. Might try it but want to understand why this would work?
Apr 4, 2017 04:03PM Leigh3232 wrote:
Can you ladies recommend some quick and dirty erotica I can download onto my tablet? I think it might help me to focus.
I tried the Creme de la Femme that is advertised on Amazon and found it is a great lube-- just enough to get through the insertion and loosen up a bit, and not so much that I'm swimming in lube and can't feel anything.
Apr 6, 2017 10:08PM Smurfette26 wrote:
Leigh3232 are you looking for literature, pics or movies?
Apr 7, 2017 09:36AM amylsp wrote:
Tumblr is great for pictures. It requires searching around a bit to find blogs that you like though. Once you do find a blog or two that you like though, you can follow links from that blog to other blogs that might work for you. :)
Apr 7, 2017 11:37AM HoneyBeaw wrote:
Trying buying a Penthouse or another sort of magazine
Apr 7, 2017 05:41PM Janett2014 wrote:
Literotica is a pretty good site.
Apr 8, 2017 02:10AM Smurfette26 wrote:
I agree with Janett.
Apr 10, 2017 10:30PM Frizzylee wrote:
This is my first post to this site. It's encouraging to me that other women are as distressed as I am about the loss of libido that seems to accompany cancer treatment. My mojo had gone from full speed ahead to seriously slowing down when the bc diagnosis came down a year ago. Since then it's died totally, completely. I am now NED having finished with lumpectomy, radiation and chemo including herceptin, and am now on anastrozole. (I think of anastrozole as the chemical castration pill since it kills all estrogen.) There are so many reasons (loss of health, loss of friends, etc) to be depressed about at my age (72) but now that I contemplate life without any hope of sexual pleasure again, it seems like the last straw. Oddly enough, lack of lubrication has never and still isn't an issue. I don't get that, but it's true. The big O was easy for me and our sex life was one of our marriage's strong suites. My husband has been kind about all this, but there simply is no sex life anymore. Please know that I am 100% grateful and appreciative for my current NED status. That, above all, is the most important thing. I just wish the quality of life left held more allure.
Apr 11, 2017 07:57AM Trvler wrote:
Frizzy: You have no drive but do you still do it? You can't O?
Apr 11, 2017 11:05PM Frizzylee wrote:
Trvier: Yup to both questions. Not very often. I kept hoping things would improve, but with the addition of anastrozole that's not likely, I guess. One of my doctors said that when there is no estrogen it's hard for there to be any libido. Also said that men experience the same problem when testosterone levels drop low. Hmmmmmmm.. . . .
Apr 12, 2017 06:45AM Janett2014 wrote:
I have known three men who have unfortunately had prostate cancer. The treatment caused loss of libido and severe hot flashes and night sweats.
Apr 12, 2017 11:44AM Trvler wrote:
I guess prostate cancer is the male form of breast cancer. I think my brother in law had that surgery to remove his prostate. But from what I have heard, my sister and him didn't have much sex anyway. They are not removing them as often as they used to. Like BC, many of the cancers are slow growing. They often over treat.
Apr 12, 2017 11:54AM Frizzylee wrote:
Trvler and Janett2014 - You are both right about prostate cancer. My husband went through prostate cancer and resulting surgery years ago. Since his father died from prostate cancer my husband decided to have surgery and I was happy he did. It did have the predictable results re ED but I have always admired my husband's good natured response in that he uses viagra and a pump (the guy loves, loves, loves anything mechanical) and on we go. Then there's me who now has zero libido and no abiity to O. But I figure if he is willing to try I need to do the same.The difference is that he can climax, I can't. So very frustrating.
Apr 12, 2017 01:29PM Trvler wrote:
Oh, Frizzylee. That's so unfair! I admire you for trying.
Apr 12, 2017 09:55PM karen1956 wrote:
Frizzy, I about 10 years younger than you and 11 year since Dx. I have zip, zero, nadda interest in sex. Absolutely zero libido or interest in trying. My poor husband is so deprived. I've been off AI's since 2007, so I can't blame it on them. With time, it has gotten worse... I guess the saying , use it or loose it is true. I hope you find some resolve.
Apr 14, 2017 05:12AM Castigame wrote:
i am extremy frustrated, angry and more about this. ER PR 90% positive so it is going to get worse. About 25% thru chemo followed by radiation and oophrectomy right after is written on the wall. This is gonna get worse. First one was right before chemo started. It was more of thank you DH for accepting me. Next one was after first chemo w condom something we had done just once. Chemo port restricted activities somewhat. Still searching for the magic potion
Did a little experiment by looking at other men young and old cute and ugly. To my horror, I did not feel anything at all. Pray to god who showed me a lot of miracles.
Apr 15, 2017 10:45PM PoseyGirl wrote:
Before cancer I was very average on the sex drive continuum. So now that I've been through it all, I am worse. I do the quickie thing for my husband so he doesn't go without, but I definitely don't want to do it much. I know that we are going to have to make some changes so that we can stay close to one another. It's hard to feel like everything has changed - a port scar, no breast, short hair, incontinence, dry vagina, libido, etc.
Anyhow, last night I had a dream and I was in some kind of a store and there were these fitting rooms. I whispered to my husband "I am actually wet right now so we should do it". He said 'ok' casually, because as Seinfeld once said in one of the episodes, men are like firefighters...always ready to put a fire out. So I went into this fitting room with him and we were starting to do it. Today I told my husband this dream, as I think it's my third sex dream in about a year. So somewhere inside of me there must be a little kernel of spark...but it's so hard to find given all of the hits from this year. It's not just physical for me; it's hugely psychological too. Add to that that I'm raising two young children (10 and 7) and the house is pretty chaotic with them.
Sorry to vent...it just absolutely sucks that it hurts when I try to do it. I'll try the coconut oil I read about above.
Happy Easter, ladies...
Apr 16, 2017 03:40AM kdtheatre wrote:
Posey...no apologies! Your venting is exactly how I feel!
Apr 16, 2017 08:15AM Falconer wrote:Posey, the coconut oil works!!
Apr 16, 2017 07:33PM PoseyGirl wrote:
Thanks, girls...I will give it a try. I do have coconut oil here so that's easy enough. So I can smell like a nice dish while I'm trying to lube. Nice :).
Apr 17, 2017 12:05PM Trvler wrote:
Posey: I think having sex dreams is a really good sign. Please also try Astroglide if the coconut oil doesn't work. I tried coconut oil but I like Astroglide better. Also, someone posted an erotic literature site a few pages back and I have started checking it out.
Apr 18, 2017 10:50AM Frizzylee wrote:
This post is for all the ladies who have replied, in one way or another to my original post a couple of weeks ago (I'm not sure about the date):
As I read these very honest, very touching replies I feel so sad. I feel like crying, really. That's one half of my feelings. The other half of me feels incredible rage. Rage because I think this issue has never been given the dignity, consideration, empathy, determination to find a solution it deserves. Many of my friends have never had interest in sex so if their libido disappears they don't mind. I get that and, so long as they are happy with things are they are, I am good with it for them, too.
But that isn't my story, as you all know. As the years have rolled by there have been so many losses. . . . .deaths of family and friends, health issues, inability to do physical things like walking as long and as far as I wanted, etc. You all could add to that list, I know. But now that I have totally lost my libido, it seems like the last straw. It's absolutely infuriating that the medical/science fields rush to solve problems men might have regarding sex, but women's problems are all but ignored. Granted viagra solves a physical problem (the way I understand it) for men, whereas, I need both mental/physical problems addressed. They are linked. And that is a more difficult fix perhaps. But it's the attitude that infurates me. As though my feelings don't count, my opinions don't matter on this topic. So there is no advancement in solving this on the part of the medical community.
Excuse my rant, too, as others have said. The only thing I think I can do is tell my oncologist. I am going to do so next appointment. He needs to hear that most of my adult life I had a healthy, functioning libido. And while it's been waning over the past years, it truly 100% died over the past year. And now with anastrozole taken daily for the next 5 years I wonder if it accurate to declare it RIP. My oncologist has been wonderful through the breast cancer treatment, but I've never brought this up. It's time to at least declare my total unhappiness with the current situation.
Apr 22, 2017 08:34PM ChemicalWorld wrote:
(wasn't sure where else to post this)
Has anyone else ever heard of / tried this?
Apr 24, 2017 02:27PM Pamela23 wrote:
Hi, I'm new to this post but SO HAPPY I found it, I went back through the forum about 6 months to catch up. I am so glad I am not alone with this issue. I am 14 weeks PFC and before I start tamoxifen I figured I'd get a baseline of my uterine lining. My GYN mentioned how atrophied I looked and had problems inserting the cathetor through my cervix for my hystosonogram which prompted her to ask how my sex life was. When I explained it, she said that if my MO clears it, she'd prescribe the vaginal estrogen cream. She said I should show my MO this article: http://www.acog.org/Resources-And-Publications/Com... By the way, she found a polyp I have to get removed in a couple weeks!
I'm intrigued by the coconut oil. So no safety issues with it being used internally? I think I've learned the hard way that if you don't use it, you lose it. I really appreciate all the tips on stimulation to bring the blood flow back. I almost was wondering if it was neuropathy!! Any of you from the fall have updates after switching products or trying any other suggestions? What worked for you in the end?
Apr 24, 2017 06:43PM Falconer wrote:I haven't had any issues with coconut oil, oh, except once I was trying to scoop it out with my hand and some got caught under my fingernail and scratched underneath it. I use a spoon now. I actually tried sex without it and it just felt raw and uncomfortable. I'm seeing my gynecologist in a few weeks (also recently treated for BC herself), so I'll be asking her opinion. Hadn't heard about the atrophy measurements- that's good info to have. Good luck!
Apr 24, 2017 09:15PM Logang wrote:
I get along great with using coconut oil twice a day. Haven't had any issues. I add in a store bought lubricant when we get intimate.
Apr 24, 2017 09:25PM Pamela23 wrote:
Falconer--my hystosonogram was to baseline the lining of my uterus before tamoxifen thickens the lining or gives me fibrous/polyps, not to measure any atrophy. That was just a side observation from her!!
Apr 25, 2017 10:50PM Molly50 wrote:
chemical world, that looks like it might be helpful but ordering from Canada can get expensive. I might try it though.