I WANT MY MOJO BACK!
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mary625, I think that's an inexcusable response from your MO! These older male doctors can be so awful. They just see us as bodies, not as human beings. How would he like it if his wife could no longer stand to have intercourse?
Many women, even E+ women who've had invasive disease, have been prescribed vaginal estrogen. We've been talking here a lot about Estrace cream. I tried that and it didn't work for me and was awfully messy, but others have found it helpful. Personally I use Estring, a plastic ring that slowly infuses a tiny amount of topical estrogen in the vaginal walls. The difference in my life is night-and-day.
But to, the bottom line is that there's no excuse for such an insensitive and unhelpful response from your MO. My OB/GYN is the one who prescribed Estrace and Estring, but my MO agrees with the solution.0 -
My MO and GYN are also not on board for localized estrogen. If I demanded my MO would eventually give in, but I agreed to try alternative approaches before our next appointment.
He suggested a shea butter and cocoa nut oil suppositive I could get online, but I'm allergic to cocoa butter. He forgot. There are other such ones with palm oil and coconut oil. Can't do those because of coconut oil allergy too. So I made up my own shea butter and olive oil mixed 2:1. It helps with external dryness and somewhat vaginal dryness.
For vaginal atrophy I've only managed to improve a bit with a dilator. The rest can't seem to be corrected without estrogen. I just gave my new boyfriend the boot for his sake. No point making him go through these issues with me when I didn't think we were going to last. Now I'm not sure I want to even bother with dating unless sex is not painful.
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Thank you for all the advice. So far, I haven't had pain. I would be reluctant to use the Estrace or ring because I fear it would go into the blood stream even in small amounts. I think I will try ordering some of the moisturizing suppositories. I mainly feel my libido slipping away, which is why I wanted the scream cream. Should I try the testosterone? Thoughts on that appreciated greatly.
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I got the scream cream. I have a couple of questions. Does it really expire in a months' time? Is it something to be used every day or only when the mood strikes? My husband has started taking his Cialis every other day to try to get blood flow in that area after prostate removal. It has nothing to do with "being in the moment." My therapist is recommending some device for me that's used daily, again to make sure there's daily increased blood flow. Thus, I'm wondering if I should use this cream daily.
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i do believe that i am going to try the estring, because, it is messy to use the estrace. so, i decided to put some in when i was in the shower, and some dropped out into the water on the shower floor, and turned into what i can only describe as bubble gum with a strange texture. Creepy!
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Is anyone contemplating celibacy? It's a choice, I guess, in my situation.
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i have a boyfriend! we ARE celebate, since my dx! and we usedta be so BAAAD!!!
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I've been married for 31 years to my high-school sweetheart but we've been celibate for close to 6 months now......No estrogen and being dry as a bone leads to absolutely no desire on my part whatsoever to even try. He's been a dear about it though.
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I WANT HER MOJO BACK!
I'm the helpless husband of a wonderful woman who last year joined the breast cancer statistics. I was 29 and she was 31. This monster has completely wrecked our lives, not just our sex life, and sometimes I can't help but wonder if we'll ever truly pick up the pieces. She's in a such a deep depression, she only sees the worst of everything. I try to stay positive and give her hope, but sometimes I can't help but be overwhelmed by pessimism.
A not so little context/rant. She felt a lump in February 2013, and was soon diagnosed with triple negative breast cancer, grade 3, stage 2A, or stage 1.5 as I like to call it. Her tumor didn't spread to the nodes and was 2.1 centimeters in size. Had it been 2 millimeters smaller, it would have been classified as less scary stage 1. Given that stage 2 covers tumors from 2 to 5 centimeters, I like to think her prognosis is closer to the stage 1 average than to the stage 2 average. I have no idea if it really works like this, but it's a nice thought. She's also BRCA1 positive.
We've been together for 11 years, and married for 5. We've always been very much in love, and we're unbelievably attracted to each other. We've always had an amazing, wild and kinky (waaaaaaay before 50 Shades made it cool!). And then it was gone, just like that.
Her treatment was surgery, chemo and radiation. She had breast conserving surgery, and managed to conserve most of it. The whole thing was over in January, and since her tumor is triple negative, she's not taking anything, so technically it's been 4 months since treatment, and she has zero sex drive. She used to be a very lustful young woman, easily turned on and easy to orgasm. She once had an orgasm rubbing against my knee! And now it's gone.
Like I mentioned above, I'm trying to remain upbeat, and I know we have good reasons to be, but it's really difficult sometimes. She's absolutely convinced her life's over, and I have no idea how to help her see the upside, if anything sometimes she's the one who convinces me.
We've had sex a few times over the last 15 months, and all is not lost (I hope). She has zero drive or desire, but when we try sex with penetration, she's not uncomfortable and even feels a little good, but it's a very far cry from how turned on she used to get. She also manged to have an orgasm several months ago with oral sex, but again, she seemed very frustrated that "it wasn't nearly as good as before". I try to see it as an encouraging sign that, if orgasm was possible, even if only once, even before treatment was over, this bodes well for her future, but all she sees is how it was "before". Everything is about "before". I try to help her look forward and stop looking to the past, but I'm completely helpless. It's so infuriating.
We've been apart for the last two months, we live abroad and she's spending time with her parents, she gets back next month, and we'll see if there's been any improvement. She says she still has zero drive, but her menopausal symptoms are better. Still no period, but the hot flashes are gone and her vagina is less dry, though still a bit dry. Sometimes on the phone, she tells me naughty stories based on our sex escapades, and she says that when we do that she gets "a bit excited, but not like before". I'm starting to really hate the world "before", lol. I want this word purged from our vocabulary, the constant comparisons with the way things were before (quite possibly romanticized to the point she now remembers them as better than they actually were) are acting like a massive anchor on her head and making things way worse than they could be, but she's not quite ready yet.
There's also the looming shadow of the BRCA mutation, which means in a few years she'll remove her breasts and most likely her ovaries. Instant menopause. She was freaked out that she wouldn't even be able to get hormone replacements and would be "completely dead", but I'm not sure that's the case. I wonder if her cancer being triple negative and thus not feeding on estrogen might make HRT less risky. The research I've found is either inconclusive or suggests an increased but small risk, and if the added risk is small, it's something to be considered if her quality of life becomes really terrible. The extra mutation risk and near certainty of removing her breasts, ovaries and going into menopause at such a young age is making her (and me) that much more stressed.
As you've probably surmised, I also have a strong sex drive, and mine is still intact, but that hasn't been such a problem. I miss it of course and it's frustrating at times, but this cancer situation is still fairly recent and it's still occupying most of my attention, so it's okay that sex has been nearly non-existent this past year and I'm doing my best to make her feel desired but not pressured, it's the future that scares me.
I'm sorry if it's selfish that I'm concerned about my sex needs when she's going through so much, but I'm not a saint, I'm just a guy doing his best, and my best is often not enough, unfortunately. I'm also not naive, there's no marriage without sex, and no happy marriage without good sex. I'm also not religious or conservative, I don't believe marriage is a duty or a burden you have to bear no matter what, it's a choice that should make you happy. Eventually, cancer will (hopefully) become just another aspect of life we have to deal with instead of consuming our every waking thought, and when life starts settling into its (new) normal, we'll both demand more than just survival, we'll demand a life. And my life includes sex. I hope with all my heart that sex can be with her, but sometimes I'm terrified that it won't happen.
She feels both incredibly frustrated about losing something that brought her so much joy and guilty for "letting me down", as if it's her fault. She says it's not fair to me and even told me that, as long as I practiced safe sex and she didn't know about it, I could sleep with other women. I thought she was joking, but she said it several times until I was finally convinced she actually meant it, but I don't want other women, I want her. Hell, I've never even had sex with another woman, she was my first, and only. I don't want to sneak around, to lie (even if it's "sanctioned", I still have to make things up), and most importantly I don't want one of those bizarre marriages where the wife is less than a woman, she's just a mother or whatever role she fills, and the husband barely has any sex with her and never does anything interesting because "that's the mouth that kisses my kids goodnight", or because he "respects her" (the implication being that women who like sex aren't worthy of respect), or because whatever, and he only has "real sex" with "real women" outside. No, I want a wife that's the whole package. It feels like yesterday I had it all, and today it simply vanished into thin air.
In case it wasn't absolutely clear: I'm not about to leave her because of sex or anything else, the very thought pains me, it's the potential long term strains on our relationship that worry me.
So, if any of you ladies have positive stories of happy lives after cancer filled with joy and orgasms, I'd love to hear them if you're willing to share. If you've had both breasts and ovaries removed, either due to the BRCA mutation or actual cancer, and still kept the flame alive, that would be even more encouraging. I'm slowly reading through this thread, but it's huuuuuuuge, and sometimes a few words of comfort and encouragement, even from complete strangers on the Internet, can make all the difference in a particularly tough moment.
Thank you for taking the time to read this.
Signed,
Scared/confused/angry/guilty/worried/helpless husband.
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Ahem. I am sure that you would love to hear them, but instead, why don't you tell your wife about this website, and see if she will come here and get to know us.
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Tiago,
You aren't going to get much sympathy here on this thread. We understand where you are coming from, somewhat. But your wife has had her womanhood destroyed by cancer. She is also facing death like never before and must be terrified for and of her future. At her age this is worse for her than for someone decades older.
I agree with kathec that it would be helpful if she found these boards. She may find the support to tackle her depression, fear, and other problems. It may help you to find counseling so you can find better ways to support her. There is also a forum on this board for loved ones of theses with BC. You may find more support there. I've not been on that forum.
edited to add https://community.breastcancer.org/forum/16
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Wait a momet... did you think I wanted to hear details of people's sex lives?
God no, and I'm really sorry if it came across that way. What I was looking for was just something along the lines of "yes, I beat this thing and I got my life back, including my sex life".I hhesitated a little to write that post, I wasn't sure if you ladies would be comfortable with a man, especially one who's not a patient and thus, try as he might, can never truly understand what you're going through, barging in on a sex thread, a subject that's still difficult for many women despite the suposed progressiveness of the year 2014.
Maybe I did make some of you uncomfortable. I don't want that, and i'll gladly leave if that's the case.
I'd love if my wife came to this site, but she won't, not yet. I've shown her a few support sites, to no avail. She's so depressed even getting help is difficult, I've been trying to drag her to therapy for months, and only now does it look like she'll finally do it. Once she's ready to truly look for support, I'll gladly show her this website, and I hope she can be welcome and make many friends here.
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I see a therapist, I already did even before anyways.
I hadn't seen the board for loved ones, thank you for letting me know. Point taken, I'll leave this thread to the ladies. I used to think of myself as a mature young man, but now I feel like an immature, helpless kid blundering and fumbling his way around this. I'm truly sorry if I distressed anyone.
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I think Tiago was sincerely asking for help. Yes maybe a bit TMI on the details for most folks here but lets face it men are a bit different when it comes to talking about that stuff. I mean he wasn't talking in a pornographic way. I'm sure Tiago would say the same things when discussing with the MDs.
Tiago I sent you a PM.
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Tiago--i have no problem with anything you said. In fact, I think you represented her thoughts and feelings to the extent she's shared them with you. I think it was helpful, at least to me. I simply don't have anything to say to answer your question in the affirmative--that I've recovered and am back to a great sex life. It simply is not the case. However, I was 49 when diagnosed, so this thing threw me into permanent menopause, and I lost all of both breasts. I think it's possible that your wife's situation may be different. It's probably just too soon all around, not only for the physical body to heal and head where it's going to go, but also the mind which has been under a lot of stress.
I think that if your wife doesn't want to come to the forums yet, that's okay because she may run into distressing information here. As you said, you have to wait until she is ready. Sharing info with strangers is hard, so sometimes a good start is just reading posts and having a ha! moments.
Regarding therapy, I am working with a therapist who has been trained in a hospital setting in a therapy called Acceptance and Commitment Therapy (ACT). The name does not really describe it well. It's foundation is mindfulness training, similar to meditation. This is a scientifically proven, beneficial therapy. You might want to look for someone with this training and background. The therapy is great at relieving stress and anxiety. My therapist also has training with sexual issues in a medical setting and told me that there are prescriptions (local and non-estrogenic) and devices to help bring back more blood flow to the area, similar to what Viagra does to a man. I'm trying to make the choice of how much of my time and effort I want to put into this right now, especially since my husband is recovering from prostate cancer surgery and is waiting to see what, if anything, happens as a result of his ongoing Cialis therapy. Sometimes there are just too many blows, which is why I posted last week about the thought of embracing or accepting celibacy as an option.
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i stand by what i said. him telling us here, about what he thinks she feels, is second-hand, and may not reflect her true feelings. this topic isnt titled, 'i want her mojo back! believe me, i aint no prude.
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Men are from Mars and Women are from Venus. I don't know about other women here, but being diagnosed, treated, and living my life afterward...there are MANY problems moving forward physically and mentally. I am almost 5 years out. There is return to a NEW normal, however, there can still be many lingering issues and for some sex may be the LEAST of them.
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Tiago, I think the point is that the women posting on this thread can't give you what you want.
You said:
"What I was looking for was just something along the lines of "yes, I
beat this thing and I got my life back, including my sex life"."So, if any of you ladies have positive stories of happy lives after cancer filled with joy and orgasms, I'd love to hear them."
Yes we beat "this thing." Yes we get our lives back, but I doubt if any of us get our sex lives back exactly as they were before. Happy lives filled with joy? Absolutely! Lives filled with orgasms? Not likely. The title of this thread tells you that much. This is a place for women to share their struggles and try to help each other adjust to a new normal.
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Thank you AnnieLane. Well said.
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Yes I got my life back, yes I got my orgasms back. Is it the same as before? Not quite. In some ways they are more intense, but less frequent. But I am 56, had already faced hot flashes and the change. I am not BRCA, I had a lumpectomy, I have had my kids. She is going through a lot more. There were/are some issues with the vagina changing, the suggestion I found on here about coconut oil suppositories helped me heal from some of it. A good lube is essential for awhile too.
The best thing is to be spooned and held and given the comfort and support to work through it. There is a new normal and it can be good.
But we aren't going through exactly what she is. Good luck.
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Question from anyone for Estrace do you just use it just before sex ? Never used it before and my doctor never told me.
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"for Estrace do you just use it just before sex ?"
No. It is not a lubricant. You must use it regularly for it to have an effect. It should reduce vaginal atrophy and restore the vaginal lining if used regularly. It won't do anything at all for you if you only use it before intercourse. It's a waste of money to use it this way.
There should be a patient insert with the product that will explain its use. If not, call the pharmacy for more info.0 -
Thank you.0 -
Omg My insurance does not cover most of it. It will cost me 186.00 for 1 tube I can never afford that what the heck am I going to do???? I am only in my 40s I WANT SEX YET..... AND there is no compounding pharmacy's around me for scream cream.0 -
ang7894, if you do a little research you may be able to find a way to get it discounted. Don't expect the first thing you try to work, but with some effort you might have success. Here's one:
http://freedrugcard.us/estrace-coupon.html
Do some googling, using "estrace," "discount," "rebate," and other similar words. If you work at it you may be able to save quite a bit.
BTW, you can probably get scream cream compounded by mail -- there needn't be a pharmacy near you. However, in my experience compounding is expensive and I don't believe it's ever covered by insurance.0 -
I got my scream cream covered by insurance. I was very surprised. However, I have not been all that ecstatic about it.
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Tiago, not sure if you are still on this board, but here is my story. I am 60 years old. Went through menopause before breast cancer. I still have sex about 5 times a week. My husband would want it 2 times a day. I enjoy sex somewhat, not nearly as much as when I was younger. I just don't have the desire any more. I go along with it because he wants it, and I don't really mind. It isn't painful, as long as we are lubricated enough, either with saliva or lube. I orgasm as much as previously. My big change is that I no longer want my breasts touched, at all. He hates this. Oh well. My guess is that in your wife's case, her problem is more mental than physical. But, when she gets her ovaries removed, it will be increasingly physical. My husband has had changes too - is takes him a lot longer to get hard, and often doesn't get as hard as he used to. It is more work, work he apparently enjoys. I'd prefer it if it was quicker and easier..... good luck to you.
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Hi ladies! Just dropping in here to point out to you the recent Breastcancer.org podcast called Sexuality and Breast Cancer: From Diagnosis to Survivorship. This podcast introduces Dr. Michael Krychman, our newest medical adviser on all things sex!
Dr. Krychman will also be writing a NEW monthly column for Breastcancer.org called Sex Matters! Read the first column here: Introducing the Sex Matters Column on Breastcancer.org
We hope you find this helpful!!
--The Mods
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yeah, i saw that! thanks!
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Yeah I want to want my mojo back....make sense?0
