I WANT MY MOJO BACK!
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I've had toys . . . it's just the favorite one died after a ten year run. I know, what lasts that long these days?? Especially a little cheapy thing like that! I don't even remember where I managed to find that thing. I've considered breaking down and buying one of those high powered gadgets, but DBF I know would rather "get the job done" himself, especially when 90 days ago there wasn't a problem. (And he's very, very, VERY good, which makes this so unfair and heartbreaking and frustrating.) He's been through a wife with menopause, so this stuff shouldn't be a surprise, I think it's going from everything to nothing that seems so unfair.
As far as what's been suggested - I started doing the exercises like Kegels in middle school when I read about them in Cosmo. I can feel those sensations. I've thought about getting those weight lifting sets just to see if they help. My shrink knows better than to give me an anti-d with that side effect. If I don't already know about it killing my ability to errrr - you know - I'll know soon enough and I plain won't take it.I've thought about estring, estrace.... I don't know how it compares at all to the low dose pill, I got to be on that for a few heavenly months and I can't tell you how great the sex was. Then comes along LCIS and they shove a stupid IUD in me. It was still great, but wow, just that little bit with the pill. I hadn't been on the pill in 20 years.
I've been through the "I don't want to do it" thing, too. I've had two relationships like that. I thought it was me. I don't want to be like that ever again. I iust went through 7 years of it. No. Not with this man.
Maybe when the chemo crap works its way out? But the MO is trying to shove that hormone crap down me.
Does the Mojo come back? Does Stella get her groove back? Or does she just turn into a prune that can't have good sex?
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This was a god send for me! I started having trouble having an orgasm a year before diagnosis when I was 51, so in my case i think part of it was due to peri menopause. After chemo and treatment, it became almost impossible to orgasm on my own or with my husband. The downside of this vibrator is that you can become dependent on that level of stimulation and it is a bit noisy. But orgasms are now guaranteed for me without all the struggle and frustration. Maybe you could try mixing it up with your husband, switching back and forth between a vibrator and him.
I've definitely been able to get my groove back. I've just had to accept that it takes more planning and prep now, and is not as 'intense' as it used to be. Have fun experimenting!
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amylsp: Thank you! This looks like what I was thinking about ordering, except for a lot less!!!! My little pocket one was sooooooo loud, I didn't care, it worked when I needed it to...I just didnt physically require it. But maybe with a little time, things will fall back in place more too. I see the gync onc next Thurs, so I'm going to talk to her about all of this and see what she says
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It definitely takes time after chemo ends for things to get more back to 'normal'. Chemo kills the fast growing cells that line the vaginal canal, and generally make things a lot more unpleasant down there. I found things definitely improved once I was a few months out from chemo ending.
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I think that in 7 years it's the first time I'm posting on this thread. I will touch a few points (pun not intended *mischievious grin*)
1. I want first to debate (gasp!) the OP. I quote "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".Unfortunately this is not really true. Prostate cancer treatment, from what I was able to realize after days of internet research, has actually way more harmful effect on the sex life of patients, and - because men are men - on their mental and emotional well-being. Sure, early stages are "a breeze" - radiation and hormone therapy - the radiation damages surrounding tissue and blood vessels and nerves, they get estrogen and gain weight and grow boobs and lack libido and have ED. But that slowly gets better. But if it's a more advanced stage, they sometimes live with life-long horrible side effects - in some cases with an artificial opening in their abdomen for urinating and a urine bag strapped to their leg. Yes, there's Viagra and the like but it doesn't always work, and even when it does, guess what? They too, can't achieve orgasm. My BF is a prostate cancer survivor. That is why I got to know so much about it. Luckily his was caught in early stages, but the side effects from radiation and hormonal therapy are still lingering. Nevertheless, we're both on a healthy eating and exercising life-style and we DO have a wonderful life between sheets. And the fact that we both had to deal with cancer, and not only that, but with a type of cancer that influences the sex life tremendously, was a bonus. We didn't have to deal with a partner who could only imagine what is going on with us, but with a partner who actually DOES understand perfectly. We helped each other in ways that probably wouldn't be really possible in a couple with only one cancer survivor. I guess that is the silver lining. The down part is that we have double the scares when it comes the time for the 6 months/annual check ups. And here's another pro, we can talk about it openly knowing that the other understands perfectly what we mean and want and is able to support our decision.
2. I think that the worst for me was actually losing the breasts. I guess I was one of those unfortunate women for which half of the arousal came from the breast area so once that was gone, there were long years in which I had forgotten what an orgasm was. Breaking up with my old boyfriend, changing lifestyle, getting off the AIs, meeting my new boyfriend - in the end healing came and knew knowledge and understanding of how to make the best of what I still have left. I think that the major thing though was when I started losing weight and started to exercise, slowly in the beginning and then, as I was shedding pounds, more and more. I started being again proud of my body, and the foobs, that until then were just some kind of weight added to my chest, started actually adding to the package. It's one thing when your overbust measurement is 40" and your waist is 48" and another thing when your overbust measurement is 40" but your waist is 29". I went from a 40C bra size to a 32DDD. Huge change. Huge image change. One day I was able to fit again in my sexy lingerie that has been forgotten in a drawer. and when I saw myself in the mirror, I felt again sexy. I can say very honestly that my libido is directly proportional to my self-image. Call me vain, call me narcissistic if you want, but this is the truth: if I don't look good, and I know I don't look good, I don't even want to go there. there is no desire. It was a long time in which I felt like I was dead inside. I had decided that that was it, that that part of my life was over. The Fates wanted it to not be so.
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I'm the same, Marie. I can't get or hold a sexual thought for it to become a desire. I am 56 and have a very loving husband. I miss "us".
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Amylsp: That's good to hear. I just had no trouble during Taxol. But Taxol was Taxol, and FAC is a different story. It's been a week and a day since my last treatment, so I guess I should be a more patient patient. Lol!
Seachain: I love your post. "If I don't look good, and I know I don't look good, I don't even want to go there. there is no desire." Yup. Cancer has just killed my self-image. I think since I lost my hair 8 months ago, I've been looked at like a woman (besides DBF) about 3 times. He still wants me to wear lingerie and I'm like . . . ok . . . I can't wait until I don't look lopsided. But we were still having good sex (and prolly really good) till FAC. That's the only change I can think of. The day I don't look like a cancer patient anymore - without a ton of effort and a wig - will be a very good day.
I just don't want my orgasms to be taken away. Take the boobs and give me foobs, take my hair, lashes, eyelashes (the worst), fingernails (next worst), but not my hoo haa. I have to draw the line somewhere.
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Dear Frill....things will get better. I cant tell you from my own experience because I have not had a partner for sex these past five years but i wanted to give you encouragement from another stage III ILC survivor. Most importantly, we have to do what it takes to survive, including the aromatase inhibitors. But I am here disease free 5 Years later when I was only given a 50 percent chance of that. I really dont know if the AI or the anti depressant has taken away my ability to "get there" quickly. Potential partner does not really understand the conversations that need to be had and that accessories may be necessary. I am very hopeful though. I think your body will do a lot of healing after chemo. I had a different regiman, but I know it takes time.
Btw, Lexapro...is there one that would be easier on the libido?
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Here's what my gyn offered:
1) Use coconut oil for dryness and lubrication. Put it way up inside during the day, everyday.
2) Have sex as often as possible, and gently. Get a vibrator and use it a lot when your partner isn't around.
I have a referral scheduled with the sexual disorders doc who works in one of the top cancer centers. I will let you all know if I learn anything useful.
((Hugs))
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Garden gypsy - sexual disorders doctor...I wonder if my cancer center has one. They have a "fatigue doctor," why not this? I just added it to my list of questions.
I have coconut . . . but it's not oil, never mind. Lol, I just went and got the jar. It's oil, it's just solid. 100% organic, so it seems perfect for the ladybits. I never thought of just doing it as a matter of course. Now I can use it for oil pulling that I've been meaning to start AND this!
The sex part is covered, I'm just having problems with bleeding, which I suspect is partly my IUD. (I've discussed this a lot in another thread, so I won't go into tons of detail here.) Appointment with the GYN onc on Thursday, so that will get figured out then.
And I got a great vibrator referral for my poor vibrator, my it rest it peace. 8 long years (at least!) of good service.
I agree about the alone time. That's how I figured out there had to be something really amiss. If I can't get myself there, when I have been, something is wrong. Plus it's just helpful (to me) to, idk retrain, or refigure things out if something is changing, figure out how to do something different. It's different from the "I can't have an orgasm on an anti-depressant" feeling. It's like I get right there and it just goes away, like those times you sort of miss the boat, only this is every single time. (Sorry y'all if this is TMI, I have no one to talk to about this and I'm kind of working it out to tell the doctor, too, so I can be clear.).
Thank you so much for the additional information!!!
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Frill, I think I know what you mean about getting close and then it just goes away or barely there. I now realize that problem no longer happens. So there is hope. Maybe just more time passing after chemo helped. I know that my tissue was less irritated once I had been off taxol for a while. And I think there is a process of getting to know yourself again when your body has been affected by these drugs. Also, the psychological part is important, as in focusing attention on the right things. Music helps me. In my case chemopause was permanent and I am on an aromatase inhibitor now. I won't lie, moisturizer and lubricant are essential, as is a more careful approach to things, and I think more time. But, I still get there! And hmm, how do I say this, it can last longer now instead of being too much. So there is hope.
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Frill and Shetlandpon ~ You sound as if you are patient and respectful of all that has gone on. Important to be gentle with yourself. Will let you know what I learn from the sex doc, but appointment isn't till October! Guess there are more of us out there!!
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kateink~ I have had low sexual desire, and am 54 years old. Two things have helped me. First, I have to keep trying to have sex, even when I am not quite in the mood. The more I do it, the better it feels. I REALLY think our bodies need to rewire/renew/regenerate, both physically and mentally.
The second thing that's helped is to change the time of day. I am so exhausted at bedtime and more relaxed in the morning. I got sick of, "Oh, it's 9 o'clock PM and that means I have to get horny."
I'll do it when I damn well want to!
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PS - Forgot to mention this everyone~ The other day, my partner said that he feels I am sometimes not very affectionate,
This made me drop my jaw.
Can it be that we shut ourselves off? A reaction to all the invasions that our bodies have experienced? Our bodies forget how to feel good! The lack of Esteogen is probably a factor, as well.
So I am working on affection. More handholding, kissing, caressing, etc.
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Mary625, have you tried using coconut oil as a moisturizer. In the shower, I use my finger to insert extra virgin olive oil vaginally and then rub it on the outside areas before I finish my shower. I do this every other day. If I need to, I use coconut oil (just on the outside with toilet paper) after my morning poo. Sorry if this is TMI. I have vaginal atrophy but I have had no bleeding and no pain (so far). I wouldn't even know i had it if they did not tell me. I'm 9-1/2 years out from cancer and way past menopause.
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Now that gardengypsy mentions it, I remember that things improved for hubby and me when we started making plans for daytime rendezvous. Too tired=not going to happen.
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Just makes me sad and want to sob. Nothing works. Let's face it. Chemo destroyed everything. I am 8 years out and still devastated for the A bomb that is BC. The A bomb that is chemo. Doc Rx Vagifem. Not only did it terrify me to use, in fear of recurrence, but it caused an offensive vaginal odor. Went to a natural hormone replacement MD and she would not prescribe anything unless I got the OK from my Onc, GYN and general practice docs. They all said NO! I can't even remember when I last enjoyed sex. I hate so much that men can F$@* till their last dying breath, and we dry up and die! Then there is breast cancer and the mutilation. The chemo and the rotting of the vagina. And if these aren't enough, menopause! Believe me ladies I have tried EVERYTHING out there. Nothing helps. I lie. I have not tried medical MJ. That is next. Sorry, but just tired of it all.
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gardengypsy, I think we do close ourselves off. I know I have.
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Me too sorry I tried a lot too and it still hurts so frankly sad to say I have not had sex in 6 months.. I want to very bad I just either hurt down there or no desire THIS was NEVER an issue with my husband or I before the cancer. if anything cancer took away my youth , love life, body image and so much more. P,S used a vibrator , coconut oil, doc prescribed creams still nothing just so disappointed that my sex life was robbed to early in life. YES I'm a live very true but NOW feel old and a prude. Way before 50 years old too ...
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Gardencontessa and ang~~
You are way too young to give up. Don't let cancer take this joy from you.
Here are two things I am doing for my psyche:
1) I am seeing a therapist who specializes in oncology.
2) I have an appointment in the Sexual Health Program for Cancer Patients and Survivors at my hospital.
Intimacy is one of the things that cancer patients struggle with MOST. Sexuality and relationships are two of the things all human beings, in general, struggle with greatly.
You can work through this. Be gentle with yourself.
Love to all.
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I agree with gardengypsy. It may take some research and networking, but finding a therapist who has experience working with cancer patients, and a sex therapist and/or gynecologist who specializes in helping cancer patients could be extremely helpful.
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Hi Ladies, can you please tell me more about coconut oil how to use it? What is it helping with?
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viktoryak~ Coconut oil was reccomended to me by my gynecologist for both moisture and slipperiness. She said to put it as far up your vagina as possible. It's easier if it is cold/solid. Several times a day, if symptoms are serious
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Keep the coconut oil in the refrig to keep it solid. Then you can scoop out a small amount and insert with your fingers as far up in the vagina as possible. I use every night, before sex, and as needed to moisturize area. It's completely safe to use and has a nice nutty odor as well.
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Lol what a difference a comma can make. I first read that as "every night before sex."
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LOL! I didn't realize that while writing the post. I can clearly say no amount of coconut oil could ever make sex 'every night' a likely scenario.
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Just reposting this here. It is in the original post, but in case you missed it:
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
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Thank you for that, Moderators.
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Having my second Mona Lisa treatment on Friday. I'll keep you all posted on any improvements.
Stefanie
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I too, have lost all desire for sex. In fact, I hate it. Makes me so sad when I remember a day way back that I loved sex and could not get enough. That girl is gone. She died. I don't believe she is ever coming back. I know we can talk about anything here, so here goes. Before the A-bomb that is BC and chemo, I used to have these amazing sex dreams. I tell you the orgasms were earth-shattering. Maybe because I was at my most relaxed state of mind. Now I start to have one of those great dreams and in them I am the mutilated person of the present and nothing happens. So even my dreams are now dysfunctional. I am married. And, sadly, the desire for sex never seems to go away for men. Scares me that my sexual dysfunction might give cause for him to find "it" elsewhere. He has told me many times that it does not matter, but PLEASE, I know it does. I really don't know what to do anymore. I would love some opinions on this from anyone. It just seems that I am falling deeper and deeper in the black hole that is profound sadness.
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