Apr 13, 2020 07:28PM CindyNY wrote:
I've blocked Ms. Betty & her Johnson. In this day and age w COVID issues on top of breast cancer, you'd think it/they/him could find something better to do.
Click on the name; scroll down, you too can block it.
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 09:45AM - edited Feb 9, 2016 09:04AM 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 4261 - 4290 (4,308 total)
Apr 13, 2020 07:28PM CindyNY wrote:
I've blocked Ms. Betty & her Johnson. In this day and age w COVID issues on top of breast cancer, you'd think it/they/him could find something better to do.
Click on the name; scroll down, you too can block it.
Apr 13, 2020 07:29PM - edited Apr 13, 2020 07:29PM by CindyNY
Apr 13, 2020 10:35PM Micmel wrote:
Funny word Mojo. I had it once long ago. I feel like I'm Reading from A storybook it's been so long since Ive felt like saying the word sex. No less doing it. It hurts. Oh my yes it does. I just don't get into it. I feel blown apart physically and don't want to be physical with anyone ever again and I wouldn't care. The problem Is I adore and love my husband. I want him happy and satisfied. But deep inside of myself l, I know that tigress he once had went out to pasture. I literally have no drive. LikeNone. He wants me to talk to him during and I'm Watching the clock, he wants to take our time. I want to pop my Adderall to desperately feel some energy or normalcy. I don't want to be touched, even if it's by accident. I don't like my new mushed and pushed body. He's amazing and deserves to happily have a sex Life. It's not fair to anyone of us. I just know in my Heart of hearts. Those days are long gone. I just wish he would wake up one day soon and think hmmmm I don't think I need sex anymore. I would be a lot more steady within myself because I can't offer what he needs that way anymore. We've been married this year 17 years. He's my best friend. What I want now really is just the companion ship of being friends and always having each other.
I watch programs and I hate the sex parts because I feel inadequate and wrong for not doing more on my part. It's just gone Hormones rolled away with my desires. I feel nothing physically, the pain isn't worth it So I try to Take care of him. But even that takes a pep Talk Inside myself. I can't hide my expressions sometimes. I know he said realizes it's hard for me to let go of something I again lost. With the cancer diagnosis. But damn he's got 5 years on me. How long will It be before he doesn't even. Care about it anymore?. I keep waiting. Sigh for us all !
Apr 13, 2020 11:08PM - edited Apr 14, 2020 12:32PM by runor
CindyNY, "Betty and her Johnson".. BA HA HA! I peed a little I laughed so hard.
Jaycee, so glad you're agreeing with me. We can't have anyone NOT agreeing with me!
Micmel, this business of sex and getting older and cancer and all that shit. It's too much! I know what you mean about sex on tv, as if sex in real life was EVER like it is on tv! I now use those moments to refill my glass of wine or make some microwave popcorn. Yet...the day your husband has lost interest in you, as much as it might be a relief on one hand, it's one more step toward that invisibility that middle aged women experience. It has been YEARS since a man, any man, has looked at me with interest. Now if a strange man approaches me it's usually in the grocery store to ask me where the chocolate chips are. Apparently I look like I eat a lot of chocolate chips. (wrong, it's microwave popcorn that made me fat!).
Apr 14, 2020 10:35AM - edited Apr 15, 2020 12:34PM by TWills
Do any of you know if the use of any of the E creams or suppositories and maybe even the topical testosterone creams are ok'd more my Drs when you're on an AI as opposed to Tamoxifen?I'm wording that terribly but I'm wondering if it matters what med you're on. I see AI in most studies saying that absorption is not systemic and safe bu I'm on Tamoxifen. Although my ONC actually prescribed me Vagifem I never used it because I just wasn't ready or comfortable. I am ready now and I have an appt next month(maybe) and I'm gathering info, terms and names of different options so I know what to ask for and hopefully understand the options she gives me. I know I want something for Atrophy and also something for stimulation/blood flow like a compounded cream containing Testosterone, like Scream Cream, I absolutely hate that name!! I use Revaree now for moistur and it work great but it's time for the next steps. I hate the fragile feeling of the tissue down there and I hate the dead feeling as well. I need something to jump start what's left lol. I think I'm dealing with some neuropathy actually, I have it from the top of my head to the tip of my toes so why not there as well. I can still “O" but I lack the feeling of blood flowing in that area that's gives me that urge to want sex or to “O". Anyway...
Apr 14, 2020 10:43AM - edited Apr 14, 2020 10:49AM by Miriandra
It's mind-blowing for some, but there is so much more to sex than penis-in-vagina penetrative sex. There are other parts of the body, there are toys, there are words. Women face different levels of their sex drive shutting down. Some women feel the drive but it hurts - don't do it if it hurts. Some have no drive at all. For others, even casual touch is unwelcome. These are daunting barriers to caring for our loved ones sexually and loving what our bodies have become. But the idea that, "If my body cannot love, I cannot be loved" is false. You absolutely can be loved.
Not all of these options will work for everyone, but I hope it may work for some. It will also be a matter of encouraging your partner to shift their definition of sex into new territory.
Warning: NSFW verbiage going forward.......
* Different positions - If man on top, pounding into your pelvis isn't fun, see if you can manage woman on top. This gives us more control over pressure, depth, and angles to keep things happy. When my uterus was prolapsing, this was the only penetrative position that was comfortable for me. When DH was on top, it felt like he was going to burst out of my belly button! Not exactly fun.
* Hand jobs, blow jobs, pearl necklaces, cheeky monkeys (this one is NOT anal sex - if vaginal sex hurts, anal isn't likely to be fun either) - There are other ways to stimulate a penis and have fun with bodies. Many of these can be as active or as passive as you like. If it hurts or gets uncomfortable for you, please speak up and try to find ways to adjust to make it comfortable for you. You aren't just a receptacle to endure body parts on you.
* Words - Sexologists love to say that our most powerful sexual organ is our brain. What if your partner can only touch their own body, and only under your direction? What if you tell them a sexy story (blindfold them to help them imagine the visuals) while they bring themselves off? Hear me out on this next one: Modern BDSM is big into scenarios and sensation, but does NOT have to involve pain or sex. It can be all about the encounter and interplay. If you want to explore this further to find ways to have mind-sex, two recommended books are "The Heart of Dominance" and "The Dominance Playbook" by Anton Fulman. You can read and use these books without being part of the BDSM scene. These specific books focus on consensual bedroom dynamics for any couple to play with.
* Toys - If your vagina can't handle a penis, a Fleshlight can. If a penis or finger is too abrasive on your vulva, try a steel or glass dildo. Now try it after it's been in the freezer for a while (with lube!!!). Le Wand and similar big-head vibrators are designed to rumble on the vulva and labia, not go inside; so these may be more comfortable to play with than an insertable toy.
These ideas are not silver bullets and will need some paradigm shifting to embrace. It will take some work for both you and your partner. If your drive to do anything at all is taxed, it will be a hurdle to get over to put forth the effort. But if you can find new things to do that your partner enjoys and that are less unpleasant for you, that will hopefully make it easier to offer those things. And you may find something new that you truly enjoy!
The days of just rolling over and initiating sex may be gone; but if you and your lover are willing to plan ahead and bring in new elements, you may find ways to give them - and yourself - some of the joy and physical connection you used to share.
Apr 16, 2020 08:22AM TWills wrote:
Karen, if you case you are replying to my post, are you on an AI or Tamoxifen? My ONC is ok with it too but mostly wondering if the Med we’re on makes a difference. Thanks
Apr 16, 2020 09:47AM jaycee49 wrote:
Marianda, thank you again for the informative and thoughtful post. People really appreciate it, even if they don't say so.
Twills, runor uses topical estrogen and she takes Tamoxifen. I use topical estrogen and I take an AI (Letrozole). Does that help? Probably not. It certainly doesn't answer your question. The two kinds of drugs do work differently and I see that might mean estrogen would act differently. I'm almost positive that a doctor would not be able to answer your very astute question. They might say a bunch of meaningless words trying to make you think they know. A rare doctor might say that they don't know. It's still a good question.
Apr 16, 2020 10:26AM TWills wrote:
Jaycee, I know there’s not a real answer to my question but mostly taking a poll I suppose lol
My ONC wants me to switch to an AI but testing to see if I’m in menopause has proven to be confusing. My numbers don’t quite say. More tests are pending. Either way I’m trying one of the “E’s” and Testosterone as well.
Apr 16, 2020 08:43PM karen1956 wrote:
Twills - I stopped AIs in 2010 due to side effects. But even when I was on them. onc was okay with vaginal estrogen cream. He says very little if any circulates in the blood stream.
Apr 17, 2020 09:45AM runor wrote:
Twills, Jaycee is correct. I am on tamoxifen. I use estrogen cream (Premarin) AND I run with scissors so...pretty high risk living all around.
For me the answer is that there is a debate about this in the medical community. Debate means there is no definitive, black or white answer. Lacking this, it comes down to your doc's personal preferences and philosophy. If his main concern is not being sued if your cancer comes back and you blame him for it for allowing you to use vag estro cream, then he is going to say no. If your doc is treating you as a whole person and realizes that a broken vagina is a serious impediment to a fun life and feels it is his obligation to mitigate misery where he can, he might say yup, do it, a little dab'll do ya. Where does this leave you? I think it leaves you making the judgement call for yourself. The absolute guidance you want does not exist. Like Jaycee says, you would be lucky to get honest disclosure which is, we don't really know the answer to that question.
It comes down to you. What do you want? If you want absolute assurance that you have done everything in your power to avoid more cancer, then refusing vag cream and living with a miserable hoohoo is the choice you make. There is no other way to feel you've done everything in your power to ward off cancer. But if you feel that you have X long to live and you'll be damned if you're going to have tumbleweed growing in your panties during that time, then you might have to go toe to toe with your doc for quality of life.
Having said that, I use estrogen cream very sparingly and very intermittently and for the most part this seems to be a working protocol that keeps my vag from dropping right out in the produce section of the grocery store. (I live in fear that I'll be squeezing tomoatoes one day when my uterus just falls right out, right there, in the fruits and vegetables!)
Apr 17, 2020 09:52AM Miriandra wrote:
Nice sum up, runor. Our priorities will vary as widely as our conditions, and our solutions (or attempts at solutions) will be varied squared.
Jul 22, 2020 10:34PM Jons_girl wrote:
I wonder about the natural (bioidentical) estrogen cream? Or natural progesterone. My breast dr says no hormones....
Jul 23, 2020 05:42AM - edited Jul 23, 2020 07:32AM by karen1956
Jons_girl I'm 14 year since Dx. My oncologist has always permitted vaginal estrogen creams - I've used estrace, e-string and currently using Imvexxy which is a little vaginal "bean" of estrace used weekly for two week, then twice weekly. Oncologist says that the vaginal estrogen creams do not circulate in the blood stream and are very low dose. My gyn and pcp also support the use. All the best to you.
Jul 23, 2020 06:00AM HikingLady wrote:
Same here--My MO is comfortable with my using Estradiol cream, and he thinks that research shows that it's safe and doesn't raise systemic estrogen levels when used locally, as prescribed.
Jul 24, 2020 06:56AM Jons_girl wrote:
Hi Karen and Hiking lady:
Thank you for responding to my post. I’m very hesitant about hormones. My maternal grandmother (whom I loved very much) had breast cancer twice. Second time happened after she had been on tamoxifen the amount of time the drs said she needed to be on it (7 yrs). After she went off it apparently she was feeling awful. Wanted her hormones again. Begged her gyn. Dr told her he wouldn’t recommend. She pushed anyway to be put on them. Cancer came back with vengeance and Mets and she passed within about a year I believe after being put on them. I don’t know what kind she was put on but think it was Premarin
So even with my menopause crud I’m dealing with, I’m not sure I should ask for any hormones. Not even bioidentical ones. It scares me.
Jul 26, 2020 09:19PM karen1956 wrote:
Jons_girl - I hear your concern. I would never take HRT. Vaginal estrogen cream is not the same as hormone replacement therapy. According to my oncologist the vaginal cream is not absorbed into the body. I believe that we have to listen to our hearts and do what is best for ourselves. Trust your heart and gut. All the best to you. Wishing you many, many years dancing with NED.
Jul 28, 2020 11:01PM Jons_girl wrote:
thank you Karen. Yeah hormones in any form just isn’t something my onco dr would approve of.
I do eat natural estrogens tho like flax seed whizzed in coffee grinder. And tofu...flax seeds is very high in natural isoflavinoids.
Jul 29, 2020 07:34PM runor wrote:
Jons girl, you do know your onc is your guide and not your boss. He can't actually boss you around. You are an autonomous individual paying taxes and able to vote. If you want vag cream, get vag cream, and if he says no, tell him to pound sand. As I have said in previous posts I use a small amount of Premarin a couple times a year and that has worked to keep things from falling apart. I did not ASK my onc if this was alright (although I did ask his opinion, but not his permission). I felt it was a risk worth taking because what's the point of being here and alive if your hoohoo makes creaking sounds when you walk and makes you miserable? A broken vagina is no fun!
Jul 29, 2020 10:47PM Jons_girl wrote:
Thank you for posting your comments. Lol. You made me laugh. But I agree and understand what your saying. Yes I have a choice. I agree. For now tho it’s not a choice I’m going to choose. I did find a product that’s hormone free that is a good option for now. Thank you tho for reminding us we are the ones ultimately that’s makes our life’s decisions
Have a great wwek
Jul 30, 2020 07:58PM Jaybird627 wrote:
I may have posted this before but I use Estrace cream. First BC at age 44, 2nd BC at age 57. After my 1st BC and then having my ovaries out my vaginal dryness and subsequent atrophy was horrible. My gyne said the Estrace cream was okay as so little is absorbed. My then onc was opposed of course . As I wasn't sexually active for a few years I stopped using it but had terrible dryness/bleeding. My current onc is opposed but my current gyne is okay prescribing the Estrace (I've moved from one state to another) . It's a game changer (I hate that phrase - lol) and I only use it about 1x/week. I'm 60 and willing to take the chance. Previous tries of coconut oil, Vit. E oil, etc. never made a difference like Estrace does. We find our own paths with/after BC. Good Luck out there!
Jul 30, 2020 10:19PM HikingLady wrote:
Jaybird—I’m similar. #1 bc was age 45, #2 age 60. Also got Rx from OBGYN for Estrace after atrophy while on Tamoxifen and then there was For Realmenopause. However, my MO has not ever objected, and feels that research doesn’t support thinking that it’s systemically absorbed. WHEW. My tissue is comfortable and healthier in every way, and I am scrupulous about not overdosing, since the amt I use is also what’s considered to be safe....
Jul 31, 2020 05:38PM Jaybird627 wrote:
HikingLady, it's about my QOL. I can maintain 1x/week dose. I'n on Anastrozole so I really need this drug. Nothing 'natural' has ever worked for me. And everything I've read says it's not going to cause BC. We all find our own path after BC.
Aug 2, 2020 12:50PM Jons_girl wrote:
Good points. We all have to make our own decisions on what is right for each of us. Have a wonderful week everyone!
Aug 2, 2020 05:23PM hapa wrote:
Does anyone know how Estrace cream is made? I'm vegan so Premarin is a no-go for me.
Aug 2, 2020 05:47PM moth wrote:
hapa, hey, fellow vegan, I looked this up a while ago. Estrace is made of estradiol which is made from yams & soy. See Table 1 on this page
Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the OddsDx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
Aug 3, 2020 07:37PM HikingLady wrote:
Aug 12, 2020 07:45PM - edited Aug 12, 2020 07:46PM by LIFE1963
Hiking Lady and Jay Birds I too am taking Anastrozole and I'm having extreme issues with dryness. I can't even wear a thong anymore it's just too damned uncomfortable. SEX?! Boy I don't even know what that's like anymore. I have given up on that completely. No urge no nothing. Which is sad, miss it, but this is medication just really wipes you out. I have been taking it for about 2 years now and my joints are starting to hurt, the bottom of my feet hurt all the time, hot flashes at night when I'm trying to sleep, extreme dryness, and pure exhaustion and weight gain. My gynecologist also just gave me a box with estradiol cream. It says 1 gram vagina twice-weekly as directed. But honestly I need a little bit more guidance than that. Can you ladies let me know how much you use once a week? I decided I'm going to try and get past my fear and just go for it. I think I read somewhere, can't even remember which post. it was out here where somebody was talking about a broken vagina and can you really truly continue to deal with it and not be miserable. Sometimes you do just got to take chances. However hiking lady you said something about being very diligent on how much you use. I was wondering what that dose was? I too am tired of being uncomfortable!
Aug 13, 2020 09:03AM - edited Aug 13, 2020 09:08AM by Jaybird627
I think I started the cream daily for about a week, maybe 10 days, then was able to maintain on the once weekly dose. I had terrible atrophy and dryness/pain/bleeding. The cream does work for me. I occasionally do 2 doses in a week if I feel dryness/irritation. I think when I take Claritan D for allergies it makes me dry everywhere. lol.
The dose I use is about an inch into the applicator. Sex drive? Not much for me. Mostly because I'm still doing reconstruction - I have one foob
with capsular contracture (to be fixed maybe next year?) and one mostly flat non-boob (from Lat flap surgery). Don't feel sexy at all! :(
Getting new expander in October after 20 hyperbaric oxygen chamber sessions before the surgery to help with healing. Maybe when I look more 'normal' I'll feel better and want to date? One can hope!
Anyway, the cream works for me and without being graphic I can actually 'take' something inside me now. Before even a finger was irritating.
And as for joint pain and stiffness, I take a lot of supplements and stiffness only occurs when I sit with my knees bent for a while. I use Voltaren gel on my knees which may or may not work but it doesn't hurt. lol.