May 18, 2017 03:24PM Molly50 wrote:
Great news, Zinny!
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 10:45AM - edited Feb 9, 2016 10:04AM by Moderators
You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).
If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).
Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).
I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.
I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.
I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.
Thanks for letting me vent. God Bless.
****************************Addition from February 4, 2016***********************************
We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.
Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!
Member suggestions for helping the libido:
Watch romantic movie or soft-porn on Netflix
Watch porn or visit short videos on Tumblr, YouTube, or other internet site
A little wine, or other substance to help relax (e.g. medical marijuana)
Massage and massage oils
Literotica: Erotic/sexual stories as an alternative to images
Super sexy lingerie or fun clothing
Have partner practice foreplay and/or oral sex
Practice masturbation on a regular basis
Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars
Member suggestions to improve vaginal moisture:
Coconut oil works best as a moisturizer (freeze small balls to make suppositories)
Vitamin E suppositories
Replens long-lasting moisturizer
Luvena vaginal moisturizer
Shea butter melted into olive oil at a 2:1 ratio
DHEA vaginal suppositories
Tip to use an applicator to insert moisturizers and apply a few times a week.
Member suggestion for lubrication during sexual activity:
Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)
Slippery Stuff (free from glycerin and parabens)
K-Y warming Jelly
K-Y Sensual Silk Liquid (paraben-free)
K-Y UltraGel (paraben-free)
Astroglide, X (silicone-based)
Platinum Wet (silicone-based)
Replens silky smooth lubricant (silicone-based)
Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)
Additional member suggestion to reduce pain:
Topical Lidocaine solution for use at the entrance of the vagina
Member suggestion for sex toys:
Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)
Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles
Member suggestion for estrogen or hormone-based treatments
(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)
Vagifem® (estradiol vaginal tablets) inserts
Testosterone patch or gel
ESTRING® (estradiol vaginal ring)
ESTRACE® CREAM (estradiol vaginal cream)
Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)
Other member suggestions:
Kegel exercises to strengthen pelvic muscles
Pelvic physical therapy
Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax
Observe which antidepressant you take, and make necessary changes
MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.
Easier if she "goes first".
Regular activity is important.
Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.
Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.
Take a look at this resource: https://sexualityresources.com
Posts 3721 - 3746 (3,746 total)
May 18, 2017 03:24PM Molly50 wrote:
Great news, Zinny!
May 23, 2017 04:06PM Pamela23 wrote:
-I'm new here but have been reading posts for a few weeks and have gotten some great tips. I was just prescribed Estrace. My GYN suggested it after an exam and I told her how awful the sex is even using lubricants. I'm now using coconut oil externally which has helped with outside dryness. But the inside...Anyway. my GYN suggested I give my MO this article about breast cancer survivors and vaginal estrogen cream. My MO said she was for it as long as I was being monitored by my GYN:
Zinney--I was directed to use Estrace twice a week and only a pea sized amount. The packaging says daily for 1-2 weeks then cut down on frequency. I see my GYN next week for a follow up after getting a polyp removed from my uterus last week. It was found when I requested a baseline of my uterine lining before I start Tamoxifen. I'll ask her about that if I don;t feel this twice weekly is working fast enough. Can't have sex until after my follow up so no hurry!
May 23, 2017 07:16PM Falconer wrote:
thank you for sharing this article. I'm supposed to get coconut oil/ vitamin e suppositories. No rush as my DIEP Flap is next week, so sex will be nada for a while..
May 25, 2017 11:04PM zinny wrote:Thanks for that article link. The most important line….
May 26, 2017 12:15AM runor wrote:
I have not started chemo yet, but this aspect of treatment has terrified me.
I had a brief meeting with the oncologist, I had to go to his office to sign papers for my oncotype test and he said there was no point discussing anything until we had the test back (which will be June 13th, next meeting). But when I was there signing papers I told him it was very important that my vagina not become a useless piece of beef jerky, all dried up and crispy.
Perhaps this was a bit abrupt as the poor guy wasn't sure what to say. But I thought, I'm going to lay my cards on the table and if this guy can't roll with the punches, then I better find out now because I will need a new oncologist.
I also asked him if he had the statistical translation skills to tell me what my prognosis is, from the Oncotype test, if we assume I do NOT take Tamoxifen for 5 years. Again, I think he was there to discuss cancer and not statistical analysis and interpretation (gee, fella, get with the program!)
This cancer crash is so awful on so many levels that you can't imagine when you're not there. First is the terror and an up close conversation with yourself about mortality. That was an ugly talk! Then you end up with a boob that is new to you, or no boob at all, and you try to make personal and private adjustments for how to live with that. My left breast is angry, a different colour, has a weird, squishy goose egg rising out of the armpit side, the nipple is pissed off and won't look at me anymore. One boob is plain old boob and other boob is an angry stranger with a bump on her head and looks like she's packed her bags and is leaving in a huff. Well !
Now add to that that I will be expected to take treatments that are NOT guaranteed to save my life but are pretty much guaranteed to turn my hoohoo into shoe leather, but no matter, I won't be wanting sex anyway. Oh joy.
I am furiously making notes of things to try and what worked because forewarned is forearmed and I want to go into this ready for battle. I appreciate the honesty and frank talk that all you ladies have shared. Thank you.
May 26, 2017 12:29AM ShetlandPony wrote:
A word of encouragement. Personally I did not find that tamoxifen caused bad vaginal problems. From the first day I started Tam, I always always without fail used generous lubricant. The idea was to not even start a pain/fear cycle. For me that worked. I had to get to know my body again and what was too much, just right, not enough. But I did not feel all dried up.
May 26, 2017 06:26AM Trvler wrote:
A cocktail or 6 might also help the first few times. It helps to be relaxed. I am going to my first OB visit since all this nonsense on Tuesday to get an Est-ring or whatever it's called. I will report back. I have not had a lot of issues with dried up vagina but it doesn't FEEL as good. I can still O so I am very thankful for that.
May 26, 2017 09:48AM - edited May 27, 2017 09:39PM by karen1956
I've been using Gyntrof for the past several weeks with great success. My husband buys it when he goes to Canada on business trips. It is well worth trying. Kar
Jun 5, 2017 06:28AM Suz-Q wrote:
I had my second Thermiva treatment a week ago and vaginal dryness is improving. We use a lubricant, but made it through without reapplying which was a miracle. I have one more treatment to go in a month. I'm determined not to let the AI side effects rob me of my sex life. My gyno started using this in his practice and I was lucky enough to catch a sale price of $1,000 for three treatments. I'm hoping to avoid estrogen therapy, but I'm not opposed to estrogen replacement now that the The American College of Obstetricians and Gynecologists approve it for estrogen dependent BC. I use the Gynatrof too and I like it
Jun 11, 2017 10:52AM Luckynumber47 wrote:
I just watched the funniest show - Grace and Frankie on Netflix, Season 3 episode 3. It was all about vibrators. Such a hoot
Jun 12, 2017 09:32AM Mominator wrote:
Luckynumber: all three seasons of Grace and Frankie are funny. Part of the first season is Frankie trying to market her lube.
Jun 12, 2017 10:08AM Luckynumber47 wrote:
Yam lube! That doesn't seem so far fetched since we all talk about coconut oil
Jun 12, 2017 10:29AM TarheelMichelle wrote:
hey everybody, I'm responding a couple of months late to people who asked me about Ritalin. (I hadn't marked this discussion for notifications and had forgotten I posted.) It might still be of interest.
My doctor prescribed Ritalin to help with my fatigue issues brought on by Femara, and an unexpected side effect was more lubrication (that I produced) and just better sex all around. Oncologists know that fatigue is crushing so many of us. I wasn't new to ADD medicines. After my son was born, my doctor prescribed it to help me focus at work. It's definitely something to consider.
I'm on Wellbutrin now, and off Ritalin, hoping that will help my sex life too. I considered myself pretty damned sexy but went down to 0 sexy thoughts on these damned AIs. I've used it before. It's helping.
Thanks everyone, for sharing. I hope everyone has a better day today than yesterday.
Jun 12, 2017 10:40PM zinny wrote:
TarheelMichelle - OOOh. I have been trying to get the courage to ask my doc about Ritalin! I feel like I just barely held it together with undiagnosed ADHD, but post chemo, I am not holding it together. Yet another benefit?
Jun 13, 2017 07:11AM Trvler wrote:
My daughter takes Ritalin for her ADD. Maybe I will give one a try. I tried a few things different drugs back in the day but for some reason, stimulants kind of scare me. Maybe I can get my house cleaned all the way, too. :)
Jun 13, 2017 03:41PM TarheelMichelle wrote:
As my doctor points out, stimulants work for just about anyone, ADHD or no ADHD. You are more alert, productive, etc. The big issue is, at what cost? I can't take stimulants for a long time. They make me moody. Had I stayed on them, I probably would have tried to take them when needed, not every day. But it's hard to not want to be that alert and productive EVERY day. I miss the old me
Jun 14, 2017 10:01AM Trvler wrote:
I am wondering can anyone who is doing topical estrogen tell me what your dosage is? My doctor put me on .5 mg and it doesn't even register on the tube. I am not sure it is enough to do anything. I just started and haven't had sex yet since I had surgery in early May.
Jun 15, 2017 09:06PM - edited Jun 18, 2017 10:10PM by Pamela23
Trvler--my dr.'s written orders on my box read ".pea sized amount twice a week". According to the Estrace instructions: 2-4g every day for 1-2 weeks then gradually reduce to half the initial dose for a similar period. Then maintenance dosage of 1g 1-3x/week. after restoration of the mucosa has been achieved. I read the article from ACOG who approved this cream for women w/ BC and it stated the same directions. I'm thinking a pea sized amount twice a week will take MONTHS to get the mucosa I desire (LOL--never thought I'd say that phrase!) so I took it upon myself to use 1g every other night for the last 3 weeks and I'm seeing improved results!! I will do this 1 more week and then go to the pea sized amount twice a week to maintain. This is TOTALLY my opinion though. Please ask your doctor, if you have questions.
Jun 15, 2017 11:15PM runor wrote:
I had a vaginal issue (prior to knowing I had breast cancer which at that time I most certainly had it, and didn't know it). I was told to use .5 of Premarin until symptoms resolved. I used it three times over the course of two weeks and a problem that had plagued me for months was gone. That stuff is like magic! So I think yes it is very possible for those tiny amounts to be very effective.
Jun 18, 2017 10:13PM Pamela23 wrote:
Runor-- I have definitely seen, felt improvement. Intercourse has gone from painful to just uncomfortable. I will switch to a pea size amount twice a eek this week ad hope things continue to improve. I still feel like the lack of sensitivity in that area is problematic when it comes to physical arousal. Will that ever come back?
Jun 23, 2017 07:53AM - edited Jun 23, 2017 07:59AM by MamaOz
I used to use etrace and it worked wonders for vaginal area and kept me from getting the horrendous bladder infections however once diagnosed with estrogen pos cancer I was told to stop back in dec
And of course symptoms have returned
I am seeing my ob/ gyn , who both he and my onc suggest ,about mona lisa touch
Its a vaginal laser treatment.
Jun 23, 2017 02:13PM Trvler wrote:
Yes, we have talked about Mona Lisa a lot in here. Reviews over all have been pretty good. Can you tell me your Estrace dose?
Jun 24, 2017 08:43AM MargoChanning wrote:
There is an ASCO statement on the use of estrogen for ER+ breast cancer patients that basically approves use of vaginal estrogen after other non-hormonal methods have failed: https://www.acog.org/Resources-And-Publications/Co...
You may want to show to your MO; mine approved use of vaginal estrogen and I'm so relieved because I was prone to UTI's after menopause so this was a big issue for me in terms of life quality. I can't imagine working the hours I do and dealing with chronic pain from infections, in addition to the other side effects I'm dealing with.
Best to you and everyone.
8 hours ago Trvler wrote:
Does it mean the dosage it is saying on there is 'low' or is that the normal dosage? My doctor has me on .5 twice a week and it seems like it's too low. Or maybe not?
6 hours ago Pamela23 wrote:
Trvler--mine said the same thing but the study didn't manipulate from the instructions which are :2-4g daily for 1-2 weeks then gradually reduce to half the initial dose for a similar period. Maintenance dose of 1g 1-3x/week. I took it upon myself to do 1g every other day for 4 weeks and this week I'm doing .5 g twice a week. It seems per directions you need to build up then maintain. i just can;t see that happening on .5g twice a week. So doing had to a quarter dose for half the time suggested was a comfortable decision I made for myself. It really improved, but I wonder how great it would have been to even do it every day. Better safe than sorry!