I WANT MY MOJO BACK!
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
sylvie Member Posts: 5Mena, I feel the same way you do about it. I really mourn the loss of libido and the difficulty with having sex even from a mechanical point of view. But I have to tell you, if you don't already know, that prostate cancer treatment does something very similar to men. Prostate cancer is fed by testosterone, so they give men shots of Lupron to shut down the testosterone production, aiming for zero testosterone in the body. The results are not pretty.
I think that the medical establishment is focused on saving people's lives (and who can blame them for that?) and all the researchers want to find a way to prolong lives rather than keep them sexy.0
Hey darlin' give yourself a break! Remember you have just come through a war. This whole experience is so similar to Vietnam, they actually refer to us as Post Traumatic Stress Syndrome sufferers.
Now, that means the body takes a lot of time to readjust to the carefree days of yore. You will most definitely get there, just not quickly. The mind, however much you are in control, decides when it is ready to let you have your libido back, when it is good and ready.
Remember, your mind has a loooong memory when scared, and will not let you let down your guard enough for the explosive climaxes just yet. Your mind feels you have to be on guard a little longer. Silly, huh? But true.
This will take patience. Just keep on keeping on. Don't let anything come between you and your sex life. The explosions will come back, you can be sure of that.
I expect a full report when they do. hee hee, just kidding.
Know you are loved and this is a legitimate complaint. But just for a time.
Gentle hugs, Shirlann0
kyle Member Posts: 1Yes Mena, I know what you are saying. I was always the "horndog" in my relationship and have lost all desire since bc.I used to consider myself a young 42 year old.I am so eager to sleep for one thing. I have been married 14 years and have one little boy who I adore but zaps all my energy. I was pretty tough during treatment but now 6 months out I find myself so unstable at times. I use Xanax at 3AM quite often when the creepy thoughts (reoccurance?) slip into my mind. I feel like my good times are now in the past.
Shirlanns post made me cry-which I don't do easily- I really hope we get "it" back. Lets just keep encouraging each other. Okay, sis? Kyle0
Oh my dear sisters, YOU WILL< YOU WILL!!!
I GUARANTEE IT!!!!
Bless both of your hearts, this is such a mess, but the hardest part is over and you will begin to not think of this nasty beast all the damn time!
My mom's best friend is 92, 46 years post double mastectomy. She lives alone and is a contract bridge player. (I don't know about her sex life, hee hee)
Anyway, if things don't pick up, try anti-depressants for a time. They do, however, affect the libido, so maybe if you can just get on a real good B complex and lots of C and E, that will help. I get all mine at Costco, vitamins are cheaper there
You two wonderful gals will be just fine. You just have to hang on and keep on truckin'
Love you, Shirlann0
Michelle31 Member Posts: 1I know how you feel and it's good to get this off your chest... How about just a little wine? (hehehe)!0
Check this out: My husband and I are still up and the TV in the bedroom just kicked the bucket about an hour a go. I couldn't make this stuff up. How timely. And I'm so anxious for tips that I'm checkin' in already.
Thanks for your replies. I'm listening to what everyone has to say. FYI Shirlann, In August I was dx with lung mets after almost 5 years cancer free, so the beast is already back and already back on my mind big time. Also, I just started an antidepressant last week that's supposed to have low risk of sexual side effects. So I've got that covered. As far as having patience, it sounds simple, and I am trying.
Kyle, thanks for identifying; I'm here for you, too. Keep reading for advice on our dilemma. You sound like your kinda down..... And Sylvie, I appreciate you pointing out the other side to me.
It just really bums me out because it's always been that one thing in the world that exists only between me and my husband. To lose it is freaky and disconcerting.
Gotta get it back!
Thanks for your input; I got my poison, but it ain't red wine lol. Red wine doesn't do anything but make me a real attractive puker, which is the last thing I need for my sex life, huh?
It's not like I have nervous jitters, anxiety or self consciousness when it comes to this. My first bc treatment (surg.,chemo,rads) was almost 5 yrs. ago. Now I have mets. I don't look sick. Sex is something I want to do, and it's so aggravating to not feel like it like I used to or respond to it like I have in the past. I guess I gotta let go a little. Sorry to ramble.
Just one more thing to bring to God.......
Solly Member Posts: 9Mena
I hear you girl. I was int he same position (no pun intended) you are. Sex was a high priority in our marriage. Now I'm luckyif I muddle thru it once a week.
One thing that helped me. Hubby had some sex movie on HBO and I watched it with him, it helped turn me on. Now I'm not a pervert but I am desparate. I'm hoping this gets better with time.8 months after dx.0
Dearest sister Mena, I am so sorry if I sounded like a "PollyAnna". I didn't know you were dealing with mets.
Sh*t! NOT FAIR!! Enough is enouth!
This damnable disease!
Please forgive me if I sounded patronizing!
Love you, Shirlann0
Not to worry; I didn't feel patronized at all, sister. But that's what I was trying to convey: enough is enough. Dammit already! Don't take great sex away from me, too! Aw phewy!
But I was thinking about what you said earlier. Maybe the news of mets is just too much for my mind. I just found out in August. I'm doing way better emotionally than I was a month ago. Thanks in a major part to bc.org.
Of course, now due to the tx, I am fully menopausal, which is new to me (I did the chemopause and things returned to normal after a year). Well, you know, our kinda "normal".
So please don't feel bad for trying to help me out, OK?
I appreciate everyone's help. In fact, I'm even gonna take Solly up on her advice......never thought I'd partake in that. Well, first time for everything and hey, the worst thing that could happen is that it could work!
Oh Mena, is just doesn't seem fair. But you know another trick that works well for me is to go to a nice hotel in Vegas or anywhere and rent their sex videos.
Somehow it makes you feel like a Hollywood starlet or something. And with nothing to remind you of home or any of the other crap, it works!
Anyway, dear sister, I know you are trying everything. You do know that the anti-deeps take from 3 weeks to 3 months to work? Kinda funny, but a lot of docs don't tell their patients and they get discouraged.
You are precious to me and your heartfelt post just hit me hard. Seems so damn unfair. It is. Just unfair. With all the other crap that goes with all of this you should at least have the basic things to enjoy.
Sigghh, Well hugs and kisses to you and I will think of you till we post again.
Go for it Tiger! Shirlann0
I totally understand your post and how dang unfair it seems that so MANY parts of our lives are affected by this dang disease. We seemed to do ok w/ this issue until about 1/2 way thru chemo, and then I guess the hormone hit and the issue with being dry (if you know what I mean), made this less fun, at least for me.
I agree w/ the advice about videos, etc; seems like maybe a more mental "help" makes a difference. I found a cool book, which is not at all prurient, called "Your Long Romantic Weekend" (can't remember authors, but they lead a very well-regarded and apparently expensive retreat at a hotel in AZ for couples looking for recharge in the sheets, so to speak). Anyway, its not for dysfunction, just suggestions on how to connect better. We've done part of the book, saving the rest for a long weekend in Miami. I think it is actually pretty good.
I'm rooting for less TV and more mojo for you dear thing! And for conquering that mx.
Yeah, I hear ya, girl! One of the things that I found that is a problem, is the Decadron they give us. It has steroids in it, and THAT will totally zap your "moisture" and desire for sex. I know this through having spinal injections for four months, and took ONE YEAR to get going again...only to immediatly start on Decadron for BC. When I asked my Chemo. Onc. about this, she said that EFFEXOR might help -- which is an anti-depressant, where I had been taking Zoloft. So far, doesn't seem to do too much -- but, maybe it has. Possibly, a lot of it is, indeed, in our "heads" -- if we do not feel whole, then we don't think we are sensual. I know I feel like I'm ugly with one side of me missing, and all lumpy and bumpy from a terrible surgeon who did my mast. I use different types of lubricant: Astroglide, "Wet" (which comes in flavors); and KY -- they now have one that heats up, so that might help. Have not tried it, yet. For me, the problem mostly is I'm the "Sahara Desert" and dry as a bone. And, yeah, I don't really FEEL like having sex / intercourse, cause right now I'm in pain. I do, however, assist my hubby in his needs, which usually helps me feel like we're still partners in bed. He, also, has been extremeley considerate of my feelings, and does not press the issue -- and that is also part of our very free relationship -- I know he has needs, and I have no problem with him taking care of them by himself.
IMHO, once the steroids are out of your body, which can/ will take MONTHS, then you will start to secrete your own lubrication again, and it won't hurt (which it does, for me). Another thing we do is read "hustler" stories to each other -- can't remember the name of them, small booklets, short stories, and that helps.
For me, however, the greatest disappointment is, that I only discovered what an orgasm was 8 yrs. ago (I'm now 40), and found out it is directly tied into my nipples. That has become a REAL problem now, to say the least! ;-)
So, don't have a wiz/bang answer for your rant, dear, but maybe some helpful tips.....
Good luck in your endeavors,
Ah, Connie you're on your way! Yes, the KY warming liquid is good. We started using that when we first saw the commercial lol! I think spending less time on here would be a start....lol0
Yes, I want my MOJO back, too!
We used to have a fantastic sex life, not any more. I've been through with treatment since 7/2 (chemo and rads) and am now on Arimidex. Just got off of Aranesp shots two weeks ago. My one year anniversary is coming up 11/19.
Like Connie, I'm the Sahara desert and Gyne has me on Vagifem vaginal inserts to help. Vagifem helps relieve the dryness and thinning of the vagina. Estrogen stays in this area and doesn't give any relief from any other menopause symtoms. Oncologist has okayed its use for me. I use it once a week and by the end of the week, I can tell it's time for my next dose.
Even with using Vagifem, I still have problems with intercourse. Plus, the desire just isn't there since I know I'm going to have problems. We're having sex (not as often as before) because I don't want to let my hubby down, but I want to enjoy it like I use to. We haven't yet found a lubricant that we like, but will keep trying.
Will try the movies the next time we go to a hotel. Step-daughter and granddaughter live with us, so don't think it would be too good an idea to do it at home!!!
Mena, you have a double whammy here. Praying that everything will go well with you.0
JoanofArdmore Member Posts: 19I want mine back too
Listen, this is how bad it is: nothing.ABSOLUTELY nothing.
I'm old, and stuff, but I aint dead.
I never FELT dead in that department before.
I'm post menopausal, and am single again. Still, I could always become interested, and aroused .
Now-fuggedaboudit. Nothing.It feels exactly like my arm, my toe.Noithing.
Six months of aromasin, not a drop of secondary estrogen, and I have learned all the great stuff the estrogen we make in our adrenals does: it makes us be able to remember stuff, it keeps us from having old lady arthritis-in our FINGERS? it makes us feel peppy at night,it--uhhhhhh,what are we talking about?
Oh, yeah. It makes us susecptible to sex. NOT that sex is great or something-not since they took my HRT away,while I was on THAT I was a tiger.
It's very scarey.Nothing.
I'd rather be sleeping.
So at least you young women have your suplimental estrogen! Me-the aromasin inhibitor will go on for another 4 and1/2 more years.
THEN, my onc says, I can make suplimental estrogen again.
Glad I'm not married, must be hard.
Sadly, even us "younger women" have problems. I'm 40, dx at 39, am ER/PR negative -- which means ZERO hormones for me, and chemo threw me into early menopause.
Now, hey, I don't mind not having my period anymore and the horrible pain with that (yeah, I was one of those types -- screaming at the moon!) -- but I can't take anything estrogen based / hormonal based to balance me out -- except Soy Milk.
No idea how long this will last, either. ONCE in the last year, I actually had my OWN lubrication -- but it must have been a fluke, cause it hasn't happened again. I basically "fake it" for my hubby, so he can feel satisfied that he's "taken care of me" -- which is his first concern (gotta love a man like that!) -- so that he can have his pleasure, too.
But, yeah, I'd LOVE TO HAVE MY MOJO back! The thought of 40 years without it is NOT a pleasant thought. I can only pray that once all the treatments are done, and everything is out of my system, that I might be able to "get in the groove" again.
Hope you get YOUR mojo back, too, Joan!
Y'all check out the thread on "Brevail" above. It looks like it not only works to block excess estrogen, but might also help w/ some of the beneficial parts of estrogen (like the moisture issue).
I only quickly scanned the brevail website but I noticed that it is derived from lignans, similar to flax I believe. fwiw, I've been taking flax seed(just the seeds from my organic grocer) for about 9 days and I actually had a little return of libodo this week. Don't know if they are connected. I'll be discussing this w/ my oncologist when I see her in a couple of weeks0
Wow! If my body would only respond as quickly and as enthusiastically as you guys, there'd be dents in the ceiling and I be bowlegged again !
Flaxseed, huh?.....OK! Whatever....I will give it a shot; I was going to add that to my repetoire of immune boosting supplements anyway. Thanks for the tip. I will also check out Brevail. And Joan, you are too funny. Yes, sleep is definitely becoming a preferred pasttime....Keep 'em coming. Well, uh, keep trying lol.0
Hello Ladies, Gents....
I have just been doing a little research in my "new" library of books -- cancer-related books -- and found one that MIGHT be of some help for our MOJO.
The book is entitles: COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.
In there is a HUGE section on getting that old mojo back again!
I don't remember whether I got this from the ACS free or if my friend who works in a medical store sent it to me. The cost, on the back, is $18.95 US$
You may be able to ask your local ACS folks if they could send you a copy free of charge, or know of someplace you can get a second hand copy, if the $20 is too much (and yeah, I DO know that at this point, every penny counts -- I'm there, too....).
Hope this helps a little on the "mental" aspect of getting our mojo back!
love to all us beautiful women!
Yes, I did check out the Brevail website, and I gotta tell ya, it just looks too much like estrogen for me to be comfortable with it, with my cancer being er+ and all. I mentioned it to my onc yesterday and she just looked at me and . Also, the site doesn't address use by women with er+ breast cancers.....so, I personally wouldn't touch it. But that's just my opinion. Also, I trust my onc implicitly. She's been treating me for five years now and she has no problem with any other natural supplement I'm taking (CoQ10; flaxseed; vitamins, etc.). Personal choice, I guess, but not for me. Too much like estrogen. Too scary at this point w/my mets....0
How did something that was so beautiful and wonderful become so painful, both physically and mentally? It just isn't fair.
Hubby and I both ended up crying tonight after we tried again. He's being so great about all of this. Tells me as long as he has me, that's all that matters. How did I get so lucky to have such a man? The problem is - I want more, the cancer took enough.0
Aw, Janet ....Just keep trying....Sounds to me like we've both got great husbands. That's more than a lot of women here! You're in my prayers hon. Thanks for posting. Get some flaxseed. Seems to help. Even if it's all in the mind. Who cares at this point?
Also, Janet, I forgot to add, have you tried KY Warming Liquid? My husband and I really like this as a lubricant....It actually does warm up....Neat.....And AstroGlide is really good too. You see, it's not like I'm not doing my homework, here lol. Now, if I could just get rid of the kids; bidding starts at, uh, FREE!0
scorpiox55 Member Posts: 10This is what I am saying! My doctor said that if she could come up with something in this area, she'd be rich! I am in this same boat with you all and I am very unhappy with the way things are going. My husband isn't interested if I don't have any feeling! OMG! What am I supposed to do? I desperately want my mojo back! The only way to get it back is through estrogen? Testosterone? Gawd, this stinks! Sincerely, the Sahara Desert!0
geeta75 Member Posts: 8Hey ladies!! There may be hope for us yet!!! First of all, I relate totally with all that everyone has said. I could care less if I EVER had sex again. How pathetic is that?? I'M ONLY 29!!!!!!!!!!!!!!!! My husband, too, is wonderful. He's happy I'm here, but I know he misses our intimacy. Only 6 times or so this entire year. Yeah, it sucks. I really want to want it, like I used to. I get Lupron to shut down my ovaries, I've basically gone through menopause. (did I mention I'm only 29?!?!)
So I shared my lack of (or, compete absence of) libido to my onc last month. He said there is a "testosterone patch" that is being reviewed by the FDA as we speak. It is meant for post menopausal women who are having problems with sex drive, but I'm sure once it's approved, which it will be in about 5-6 months, your docs will perscribe it for you, too.
I asked my onc if I would grow a beard....he said, no, but I may take an extra interest in NASCAR and Monster trucks....he's a funny man. But the testosterone is such a small amount, just enough to increase your sex drive, but not enough to drop your voice an octave or two...hee hee. Think about it....men think of sex 40 times a day, or something like that. And what do they have pumping through their veins???? TESTOSTERONE!!! Yeah, I don't know if it's linked, but what the hell...I'll try anything.
And there's no increased estrogen in your body from this at all, so for us er+ women, this is good news!!
I'm going to be getting it when it's approved, I'll let you all know how it works!!
Hugs to you all!!
Hey all you dear gals, I just have to tell you about the WORST husband I have ever run into on posts. This was from the AOL site at work. Anyway this gal has 3 year old triplets (they got them with intense in vitro stuff). So she came home from the doctor and tells her husband she has breast cancer,I AM NOT MAKING THIS UP!
Without a word he goes upstairs packs a bag and leaves her for good.
Now, that just beats all. What a jackass. We all tried to console her but truly, I was speechless and that doesn't happen to me very often and you all well know!
Anyway, I hope he gets hit by a truck, or better yet, Lorena Bobbitt!
Love you all, Shirlann0
Well, mojo is the least of her worries. Poor thing. I'll tell ya, when I was first dx, my onc told me that most men leave their wives when bc enters their lives. I was absolutely appalled. My mind couldn't even comprehend that. That's why I was telling Janet that we are so fortunate to recognize that we have phenomenal husbands. Our Mojo will be what it will be. Que sera, sera....
But I won't get complacent about this. LOL, maybe I"ve finally found my life's calling......I'll spend the rest of my life looking to cure loss of libido lol . Like a bc Dr. Ruth. Hmmmmmmm......
As for that extremely unfortunate women, I will keep her in my prayers and hope she legally claims "abandonment" and gets child support from that heartless loser ASAP.
Love to all.....Mena0
incognito Member Posts: 2Ok...I'm really sorry for the fakey name but I'd die of embarassment for the reply I am about to write!
My solution to mojo problems throughtout treatment and chemopause...daily masterbation. Every single day. I think consistency is the key. I've virtually eliminated the moisture problem and it's relaxing. Doing it so often keeps the mojo in constant standby mode. I use my fingers and sometimes a small clitoris stimulating vibrator. My guy gets a kick out of the whole playing with yourself thing...so that's a bonus, too.
Try for a week...I've had pretty great results!
(Sorry if it's a bit on the graphic side but hey...what are you gonna do?)0
Karen66 Member Posts: 5
Earlier this year my oncologist gave me testosterone gel to increase my libido. It worked and I don't remember any significant side effects. It helped with my mood and energy level also. I've been off of it for 3 months now and am going to ask oncologist if I can go back on it again.0