Fill Out Your Profile to share more about you. Learn more...

I WANT MY MOJO BACK!

Options
1140141143145146

Comments

  • cindyny
    cindyny Member Posts: 1,182
    edited April 2020
    Options

    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.

  • micmel
    micmel Member Posts: 9,920
    edited April 2020
    Options

    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 !

  • runor
    runor Member Posts: 1,613
    edited April 2020
    Options

    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!).


  • TWills
    TWills Member Posts: 509
    edited April 2020
    Options

    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...

  • miriandra
    miriandra Member Posts: 2,077
    edited April 2020
    Options

    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.

  • karen1956
    karen1956 Member Posts: 4,521
    edited April 2020
    Options

    Both my gyn, pcp and medical oncologist are fine with me using topical estrogen. I've been using Imvexxy for about a year and it is great.

  • TWills
    TWills Member Posts: 509
    edited April 2020
    Options

    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

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2020
    Options

    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.

  • TWills
    TWills Member Posts: 509
    edited April 2020
    Options

    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.

  • karen1956
    karen1956 Member Posts: 4,521
    edited April 2020
    Options

    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.

  • runor
    runor Member Posts: 1,613
    edited April 2020
    Options

    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!)

  • miriandra
    miriandra Member Posts: 2,077
    edited April 2020
    Options

    Nice sum up, runor. Our priorities will vary as widely as our conditions, and our solutions (or attempts at solutions) will be varied squared.

  • jons_girl
    jons_girl Member Posts: 444
    edited July 2020
    Options

    I wonder about the natural (bioidentical) estrogen cream? Or natural progesterone. My breast dr says no hormones....

  • karen1956
    karen1956 Member Posts: 4,521
    edited July 2020
    Options

    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.

  • hikinglady
    hikinglady Member Posts: 625
    edited July 2020
    Options

    karen1956 and Jons_girl

    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.


  • jons_girl
    jons_girl Member Posts: 444
    edited July 2020
    Options

    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.

  • karen1956
    karen1956 Member Posts: 4,521
    edited July 2020
    Options

    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.

  • jons_girl
    jons_girl Member Posts: 444
    edited July 2020
    Options

    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.

  • runor
    runor Member Posts: 1,613
    edited July 2020
    Options

    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!

  • jons_girl
    jons_girl Member Posts: 444
    edited July 2020
    Options

    runor:

    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

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited July 2020
    Options

    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!


    Jaybird

  • hikinglady
    hikinglady Member Posts: 625
    edited July 2020
    Options

    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....

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited August 2020
    Options

    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.

    Jaybird~

  • jons_girl
    jons_girl Member Posts: 444
    edited August 2020
    Options

    Good points. We all have to make our own decisions on what is right for each of us. Have a wonderful week everyone!

  • hapa
    hapa Member Posts: 613
    edited August 2020
    Options

    Does anyone know how Estrace cream is made? I'm vegan so Premarin is a no-go for me.

  • moth
    moth Member Posts: 3,293
    edited August 2020
    Options

    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

  • hikinglady
    hikinglady Member Posts: 625
    edited August 2020
    Options

    I understand Estradiol to be produced from plants, as moth shared, hapa ---it might be something to ask your pharmacist about. They're good at explaining how chemicals/hormones are synthesized.

  • life1963
    life1963 Member Posts: 364
    edited August 2020
    Options

    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!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited August 2020
    Options

    Hi Life1963,


    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.

    Good luck!

    J~

  • runor
    runor Member Posts: 1,613
    edited September 2020
    Options

    Life1963, I have often sung the woes of a broken vagina. They ain't no fun at all. I hear you about being worried about triggering a flare up of that old bitch cancer, but if you used to have a sex life and you used to like it and you want to get back to it...you're kind of between a rock and hard place. Well, someone's at a hard place, maybe not you (oh my god I can't believe I wrote that, so bad!)  If you feel safer squirting your little blob of magic kooch cream on your finger and rubbing it around all the mushy outside bits, you can do that too. You don't HAVE to stick that applicator up there and shoot up. I find that the occasional outside slather of Premarin keeps things tolerable. Start small, you can always trade up to internal application if you need/want. The vagina police will not arrest you if you don't follow the rules.