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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.

Posted on: Oct 17, 2004 05:45PM - edited Feb 9, 2016 05:04PM 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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Oct 24, 2004 10:44AM Anonymous wrote:

your posts are great!i think this one is so spot on- i had a really hot hot hot
sexual relationship before this-i mean living out every fantasy you can think of and with a guy who was like a one way ticket to the land of sexual taboos-i saw him a few months ago when i was back in paris and had no desire for sex with him anymore-i think it is a mind thing-it is harder to let go after going thru this-
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Oct 24, 2004 02:27PM Mena wrote:

Hey Incognito --

Why I oughtta hunt you down and plant a big wet one right smack on your lips for your honesty lol (even if you are a big chicken for hiding in the shadows)....My husband likes you, too and just loves your advice. Geez....I dunno how to thank you for that. It would be a helluva lot easier if you'd come out come out wherever you are....
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 24, 2004 07:31PM JanetT52 wrote:

Yes, Mena we are lucky for having such great men in our lives. I couldn't believe it when I read about the woman with triplets - what a loser she had.

We've tried the KY jelly, it didn't work. I'll look for the other one you mentioned.

I saw something on TV about the testosterone patch - can't get here fast enough for me. I've never heard of the gel, but I'm sure going to ask about it.

I hate being like this so much that I would go back on my old hormones (which did have a little testosterone in them).

I'd try what Incognito said - but I don't even have enough desire to try that! Hubby would probably love it, too!!

Janet
Janet
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Oct 25, 2004 03:56AM JoanofArdmore wrote:

I'm tellin'ya, that's what I was complaining about! No more exciting than touching my arm or toe.
But you guys might fare better. You are just having your estrogen deleted.
Mine is already gone w/menopause. So the aromatase inhibitor takes the teeny bit of estrogen we make in our adrenal glands, and in our fat, away.
Nothing.Zilch.
I was doing fine before the A.I.
You will too, once you get used to the estrogen drop. The body DOES make supplementary estrogen, not a lot, but enough for sex fun!
Good luck, old 95 y.O. arthritic granny.
Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall . Paul Simon
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Oct 25, 2004 12:12PM JanieMarie wrote:

Question: So what about birth control for we pre-meno, HER2++ gals. Pills are completely out of the question and Condoms (what my ob suggested) are not a big hit at my house!Yikes!!Any suggestions?? Janie
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Oct 25, 2004 02:04PM Mena wrote:

Joan,

I was literally "shot" into menopause overnight with Zoladex and am kept there purposefully with these injections every 3 months and daily with Femara (for the adrenal gland) as tx for my lung mets. So there's no estrogen here, my friend. None that does anything to speak of anyway.

I'm only 43 and last night I left the bedroom in tears because things got so painful. Today my mood is sucky sucky sucky and now I'm crying again because it's just so *&^%$%&^ sucky. Talk about quality of life. I can't even defer to humor right now. I'm just too discouraged.
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 25, 2004 10:23PM blueiris wrote:

Janie I am in the same boat as you. I bought some spermicidal sheets but haven't used them yet. They are supposed to be less messy than foam or gel. You could see about getting a diaphram, I might do that in the future, once my weight is at a point were I am happier and not trying to lose. My cousin has a non hormonal IUD she got preg one time on the pill and another time while taking the depo shot. Her youngest is 4 1/2 now, so it worked for her. They are supposed to be pretty safe. I am taking chemo now and only have one ovary, so I am just watching the timing for now. My periods haven't stopped yet, but I expect them to. There is no way condoms would work in our house either! Yuck! Thank god for monogamy!

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Oct 25, 2004 10:48PM dwhit205 wrote:

Mena - is your husband easy to talk to about this and willing to try to help you? I'm 56, post-menopausal and have lost a lot of desire too, but husband is so great through all of this I've tried for his benefit and actually end up having some good experiences. The old techniques don't work any more though and thankfully husband is understanding about that. I love the closeness, back-rubs, etc. and that often helps me if we start with that. Also, if it's possible with your kids around, try in the shower or tub. Also, if intercourse is uncomfortable, try other types of sex.

You're right - this is one thing you shouldn't have taken from you!
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Oct 26, 2004 12:11AM Mena wrote:

Hi Diane,

Yes, I am blessed to have a wonderful, caring, compassionate, understanding, patient, loving husband. We talked this morning. I made an appointment to see my gyno on Wednesday (Thank God!) since my onc doesn't want to do any prescribing in this area.

My husband has a great sense of humor also and was right beside me five years ago with my first dx. The news of my mets hit him hard but he really keeps me going. I love him so much which makes this problem all the more difficult.

Nevertheless, I am committed to finding a solution that will satisfy both of us and hopefully offer help to the rest of my bc sisters out there. Thanks for sharing. I will keep your advice in mind and at hand.....
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 26, 2004 01:56AM richmondnan wrote:

Mena,
I'm not taking the brevail now; just was interested that it seemed to be based on lignans (which are in flax seed).
I DO take flax seed and I have noticed some additional interest since I've been taking it....fwiw!
I bought some of the other lubricants and I'll have to experiment to see if they work! We have a long weekend planned in FL in a few weeks so I'll report back whether these work! We find that the condoms don't help w/ the moisture issue--but we still need the birth control for now despite no periods since July.

I see my oncologist next week and I'll be asking her about the brevail then

Nan
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Oct 26, 2004 01:12PM JanieMarie wrote:

blueiris - I didn't know they made non hormonal IUDs. Something to think about. I may also need to consider the diaphram when I am done with treatment. There are not a lot of great choices! I think I have my MOJO! Finding adequate protection and lubricant stinks! Janie
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Oct 26, 2004 01:21PM filmfestgirl wrote:

Ain't it the truth! When are they going to come up with a MALE birth control pill???

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Oct 26, 2004 10:27PM connierc wrote:

Hey hey,

Another thought....I believe there is a "cervical cap" that can be used for birth control. My friend was part of a study, oh, 20 years ago, in CA. Whether it was approved or not, I'm not sure, as I was on the pill for many years, then abstinance for way too many years, then condoms, and then marriage! Oh, but did use "the sponge" (with some comical results, albeit, also frustrating!), but they have taken that off the market -- probably becauese too many women were going to th ER to get the darn things taken out!

GOOD LUCK!

Connie
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Oct 26, 2004 10:28PM connierc wrote:

They have -- it's called VASECTOMY!!!!

Connie
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Oct 28, 2004 08:26AM connierc wrote:

I have a "natural" store that I go to now, and tho their prices are a bit OUT THERE for some of their items, he at least KNEW what I was talking about when I asked if he had any Testoterone Cream. He said, "You mean Estrogen?"

"Nope," says I, "Testosterone. Supposed to help with menopausal symptons."

So, he's going to order some in for me, and when I next go to see my shrink, will stop by and see how much it costs. If it's OUTRAGEOUS, I'll ask my PCP or ONC. to write a scipt (IF they think I should use it), and get it for FAR LESS on our insurance plan.

Too bad the Vit. E and Flax Seed Oil aren't prescriptions! Those two came to almost $30! Well, got the receipt, and will put it in with all my other "medical bills" for tax purposes. Hey, it can't hurt, right?

Good luck with the patch, for all of us!

With gently hugs,
Connie
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Oct 28, 2004 09:44PM Mena wrote:

Here's my mojo update: I went to my ob/gyn yesterday hoping to come home with a shopping bag full of samples and a handful of scrips. What a bust. I got three tubes of Replens and a scrip for 5 Cialis pills. Yes, I actually asked for Viagra, but for some reason (a hot sales rep I'm sure) I got Cialis and yes, I took it last night.

I feel asleep.

I woke up with a migraine. I still have it.

So much for that.

I asked the ob/gyn about testosterone cream or pills or whatever (at this point he probably thinks I'm an extremely busy hooker). He wouldn't give me a scrip without my onc's consent. AAAAAAAAACK!!! So I called her.

She called today and will not give me testosterone because she thinks my situation will get better and because I'm doing so well....lol....it's my husband that's having the problem, she said. I told her "don't even go there" and told her to come here and read. Seriously, I did. Anyway, since I was plunged into menopause literally overnight with the meds for the mets (little alliteration for levity) she feels I will improve over time. Gag me. Time?
I said, "Yeah, well, in the interim, could you host a seminar on the subject cause there are a lot of us out here......"

So, I took it upon myself to pick up some OTC gel called Vigel, "a topical pleasure gel for women" lol. Makes me giggle to type it. But damn if it doesn't make me all tingly. And no hormones! I'm telling ya, I've found my life's work here, ladies.

Oh, and I am by no means done. How does that saying go? I've not yet begun to fight? Who said that anyway? And why? First correct response gets a tube of Vigel complements of me lol......Mena
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 29, 2004 12:29AM scorpiox55 wrote:

Ok Mena, Where did you get it? lol I'll try it for sure! Thanks for the update on what the dr. said. I think most of them are scratching their heads on this one.

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Oct 29, 2004 06:07AM connierc wrote:

Mena, et al,

I found that my local "natural store" carries testosterone cream ... no need for script. Of cours, I'm going to check with Onc. jus to be sure I can use it ...

Let us know how Cialis goes, afer you give it a little longer of a try. Keep in mind that it may take a while for it to "kick in" properly.

Viagra, hhhmmm. Never thought of that....not that Alfred needs it in the least, but if it would do the same for women.....what a great thought.

Like the Rogaine for women who have thinning hair (non-chemo induced!!!). That is a bit of a problem in my family line, very thin hair -- and I am BUMBED that my hair has NOT grown in any differently than it was before BC tx! I was SSSOOO looking forward to wavy / curly / different colored hair. Sigh. oh, well, guess I'll just have to have fun with temporary hair dyes, just to have some fun!

After so many months of having different colored wigs, I really got to liking having "color" to my hair. Would be fun to find a non-perm. hair coloring system to change all the time.....

Thanks for keeping us updated on the ventures of MOJOing!

love,
Connie
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Oct 29, 2004 09:25AM Mena wrote:

Hi Scorpio -- I picked Vigel up at a local Rite-Aid Drug Store. There's a web address on the tube: www.vigelusa.com. I haven't been to the site yet, so I'll go now and check it out. Lemme know if you find the Vigel. If not, I'll pick one up and send it to you..........Mena
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 29, 2004 02:48PM nancymarie wrote:

Hi,

I haven't had any treatments since 2003 and sex still does not feel like what it used to be - it still is kinda painful (even with good lubricrating creams) - I am only 46 but never got my menstrual cycle back after chemo.

The KY warming lubricant is good though - me and my husband both enjoy it, but I still wish having sex was like it used to be before BC, chemo, radiation, chemopause, etc.

-Nancy
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Oct 29, 2004 09:16PM sylvie wrote:

Mena, "I have not yet begun to fight" was said by John Paul Jones during the Revolutionary War. But I have to admit that I had to look it up. Do I still get the reward??

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Oct 29, 2004 11:04PM Shirlann wrote:

Hey I like Incognito's advice, sounds like good sense to me. USE IT OR LOSE IT! Hummm, never thought about that.

Good for you darlin'!

Hugs, Shirlann
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Oct 29, 2004 11:51PM Mena wrote:

Sylvie LOLLOL -- you get the reward and then some if you answer the ENTIRE question, dear....Why did he say it? Look up the answer (that's permitted) and PM me your address. I will happily definitely keep my word lol. For anyone else who's interested in Vigel, go to www.vigelusa.com and get a free 7-day sample. But you do have to pay $2.95 for shipping and handling. And you, too, can feel all tingly........Mena
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 30, 2004 12:25PM sylvie wrote:

Again, I had to look it up, but here is the story: Jones was the captain of an American ship, the Bon Homme Richard (it had a French name because the ship was a gift from the French king to the "rebels" in the colonies). Jones set sail on 14 August 1779 to raid English shipping.

On 23 September 1779, his ship engaged the English ship, Serapis, in the North Sea. The Bon Homme Richard was blasted in the initial attack, losing much of her firepower and many of her gunners. Captain Richard Pearson, commanding the Serapis, called out to Jones, asking if he surrendered. Jones' reply: "I have not yet begun to fight!"

This is actually a pretty good motto for those living with breast cancer and all the side effects of medication, IMHO.

Never mind the reward! The reward for all of us should be to get our mojo back, and to have some fun learning about new stuff.
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Oct 30, 2004 12:40PM Mena wrote:

Ah, Sylvie, how enlightening! Are you sure about your reward? You certainly earned it. I'm heading down there right now for a scrip and some H'ween candy. I'm picking up the Vigel anyway so I have it. It's yours if you want it. Just pm me your address, seriously. I'm good for my word. Don't you wanna feel tingly, too? Or is all this history stuff doin' it for ya? lol.........Mena
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Oct 30, 2004 01:52PM scorpiox55 wrote:

Thanks Mena, I am heading to the drugstore!!!!!!! I am on a mission! JoAnne (Lookin' for my mojo)
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Oct 30, 2004 02:36PM - edited Nov 30, 2010 03:03PM by denisa

..

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Oct 30, 2004 02:42PM filmfestgirl wrote:

Denisa -- very cool! Equity in contraception might be around the corner.
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Oct 30, 2004 08:24PM iodine wrote:

When I had severe vag.dryness my onc gave me a script for Estring. It's a gel ring placed in the vagina and emits a tiny amount of estrogen that is unlikely to go to the rest of the body. It last 3 mos.
It was a huge help!!
I'm Er+.
BTW, I only had to use for 6 mos.
Dotti---BE NOT AFRAID, Pope John Paul
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Nov 1, 2004 11:00AM Mena wrote:

Hi Iodine,

Thanks. I wish it were that easy. I wouldn't even look at estrogen under a microscope let alone put it in my body at this point. Not being er+ w/recurrence and mets. No way. I'm taking drugs that keep my body totally free of estrogen. And so far, my tumors have not grown.

But for hormone receptor negative women, or if your onc says it's ok, that's great! Enjoy! You're a lucky girl
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+

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