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I WANT MY MOJO BACK!

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Comments

  • rgiuff
    rgiuff Member Posts: 339
    edited July 2015

    Fourminor, being you were early stage, could you be switched to tamoxifen without the ovarian suppression? And all Doctors seem to have different opinions on things.  My Oncologist was very agreeable to the vaginal estrogen as a quality of life issue, and it definitely helps.

  • lago
    lago Member Posts: 11,653
    edited July 2015

    My oncologists hates Tamoxifen. When I was having issues with Anastrozole and asked about Tamoxifen she said "Well it's better than nothing." I'm on Exemestane now. The AIs do work better than Tamoxifen. Tamoxifen isn't without some serious risks so be sure you check into those.

  • Fourminor
    Fourminor Member Posts: 118
    edited July 2015

    I won't quit AI since I think what's going on down under is presumably also happening to any residual cancer cells in my body.

    MO says keep going with Hyalo-GYN and give it more time. But I'm also thinking of using some of the applicators to make homemade coconut oil suppositories and alternating. On my face I like to layer an oil on top of a water based serum.

    Maintenance gets more involved as you age!

  • lago
    lago Member Posts: 11,653
    edited July 2015

    " involved as you age!"

    No kidding. I think that's why women retire (and their kids grow up and move out). They need more time just to do maintenance.

  • Momine
    Momine Member Posts: 2,845
    edited July 2015

    Ladies, I hope you don't mind a slightly hit-and-run, tongue-in-cheek (NO pun intended) post here. Somebody posted this article elsewhere a few days ago, and since many of us are also amputees, I thought it might help the collective mojo: http://www.dailymail.co.uk/femail/article-3165402/Photographer-captures-amputee-war-veterans-posing-naked-proudly-revealing-injuries-powerful-picture-series.html#comments


  • littleblueflowers
    littleblueflowers Member Posts: 391
    edited July 2015

    Oh...there's my MOJO lol. Thanks Momine!

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited July 2015

    Hot damn, Momine!

  • Fourminor
    Fourminor Member Posts: 118
    edited July 2015

    http://www.eurekalert.org/pub_releases/2015-07/ohs...

    Saw this this morning about a study using Lidocaine...

  • amylsp
    amylsp Member Posts: 96
    edited July 2015

    I've been using a small dab of 2.5% Lidocaine (I have for my port) at the entrance to the vaginal canal right before sex. That, in addition to my other routines, definitely makes a difference with the pain of penetration. I might ask my Gyn about this liquid Lidocaine. :)

  • helphope
    helphope Member Posts: 2
    edited August 2015

    I've had 2 mastectomies and reconstructions and been on tamoxifen off and on for 4 months. I had a very good libido prior to my mastectomies and now I have none. I'm only 7 weeks post op on my 2nd mastectomy/reconstruction so perhaps that is a factor but i feel numb as far as libido goes.

    I refuse to believe that my drive will never return because I'm willing to make sure it does.

  • moderators
    moderators Posts: 8,741
    edited August 2015

    Hi Helphope-

    We just wanted to welcome you to our community here at BCO! We hope you find this to be a place of support and encouragement as you continue your healing process!

    The Mods

  • Momine
    Momine Member Posts: 2,845
    edited August 2015

    helphope, I think it is normal to feel numb in all kinds of ways after such an ordeal. Our bodies have been messed with surgically and chemically. What I found most helpful after treatment was to get back intouch with my own body. Solo in other words. You have to get to know yourself all over again and wake up the various bits,maybe find new bits etc. Also, 3 years out, I finally have a lot of feeling back in my chest, but it took ages and ages and it is, of course, different than it was (for one thing, I have no recon, so no boobs at all), but different is not necessarily bad. Try to keep an open mind and explore

  • helphope
    helphope Member Posts: 2
    edited August 2015

    Thank you Momine!!!

    I have saline now so no nerves yet either but it's good to be reminded that even though I appreciate my life like never before, my body has been literally cut, poked, prodded, and you know the rest, I forget what I've gone through.

    Thanks for the reminder. This isn't exactly a conversation I can have with non-breast cancer patients..lol..

  • Momine
    Momine Member Posts: 2,845
    edited August 2015

    Helphope, tell me about it! Certain things are really best discussed with the BTDT crowd ;) Just remember that hope dies last, and that it is absolutely amazing how your body can recover and regroup.

  • aliciah
    aliciah Member Posts: 3
    edited August 2015

    I am having the same issues. I was first diagnosing 2010 with stage 3c bc. Even then had lost my mojo. Just wasn't interested anymore. It has been that way since. It came back, this time on the outside of my bladder and now stage 4. I have completed chemo, done surgery now waiting for a checkup from my oncologist for that miracle drug that is supposed to suppress the cancer cells. It's been harder on me this go around. I've fallen into a deep depression and still no mojo but of course, I can't for 6 weeks because of my surgery. I was thinking that was my ticket out of intimacy. Prior to my 2nd diagnosis we were intimate once a week. I was just doing it to make him happy. Well it's been almost 5 months my husband has come up empty and I really feel for him. I'd love to get my mojo back and would love to get my head out of this funk. Sad.

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Awww…Aliciah. I am sorry. I know how you feel. I feel guilty I can't take care of my husband. I mean, I guess I could…but not in that way.

    You need to take care of you now. I am sure your hubby will understand. Are you taking depression meds? They can kill your drive. Also, are you taking Tamoxifen?

  • aliciah
    aliciah Member Posts: 3
    edited August 2015

    Thanks for the response. I was on Tamoxifen for 5 years. My cancer returned. I did a second opinion at the Mayo. She was opposed of the Tamoxifin. Wished I had known that 5 years ago. Things may have been different. Before my surgery, when we would attempt sex, it was painful. We had tried different lubricants and olive oil, recommended by my gyro. Still painful. So we gave up. Bought the Astroglide right before my surgery but I was in too much abdominal pain to try it.

    I am currently on Bupropion XL 300 mg, Lorazepam for the anxiety, but still doesn't seem to be working. I can't help to think of time that I'm running out of and just start balling.

    I need to hear of some success stories of stage 4 matastic breast cancer. I need some reassurance that this is not a death sentence. I know eventually it will be, but I'm praying for a medication that will come along and be my saving grace. 😥

  • moderators
    moderators Posts: 8,741
    edited August 2015

    Hi all! Wanted to jump in here with some exciting news:

    Flibanserin for Low Desire Has Been FDA-Approved for Premenopausal Women, August 19, 2015

  • PainAwayPlease
    PainAwayPlease Member Posts: 2
    edited October 2015

    I am in tears reading everyone's horror story. I am a 10 year BC survivor plus mine was caught early so my treatments and issues do not compare to what some of you are going through and for this I know I am Blessed; however, I too am depressed by the way my body feels after all the BS treatments I went through. I had horrible side effects from Tamoxifen! Here is my story: My husband had a stroke in 2004 right before I was diagnosed so sex wasn't an issue because his sex drive changed at that time too. We divorced after 35 years, not because of sex, in 2012. This past December I decided to start dating and found a wonderful understanding lovable man. Sex was great at first and he brought back feelings I had forgotten about. Then 6 months later the sex began to hurt unbelievably. It felt like something inside was stopping penetration. After my 3rd visit to my gyno, asking why it was ok at first, he got aggravated and said "I am not a miracle worker" which was very depressing. I started researching and found a product that I am going to try..... REPLENS Moisturizer that you insert continually to deal with all pain whether sex related or not, and it helps the muscles that are dry inside and do not want to stretch, get relaxed and become moist again; and, REPLENS Lubricant that you use right before sex to help make the outside area smooth; and, the use of a DILATOR to stretch the vaginal tissue and keep the vagina enlarged which is supposed to keep that dry muscle relaxed and under control also. The research I have done on Replens seems to be one of the safer ones and worth a try. My BC was High Estrogen based and some of the products are scary. I certainly do not want my cancer to come back. However, at 60, starting over with a wonderful man, I am willing to take a chance just to be happy again, even if it's only for a while. All my Love and Prayers for us all to find that product(s) that helps us get our Sexy Mojo Groove back. God Bless...Karen

  • trvler
    trvler Member Posts: 931
    edited October 2015

    If you have satellite radio, you can listen to Women's sexual health. Here it is on Mondays around noon. They talk a lot about menopause issues, which of course are similar. She recommends dilators and mentions a brand called Soul Search. You get progressively larger dilators and use the to stretch yourself out. I have yet to purchase them. I was hoping it wasn't going to be a problem but I think it is. We haven't tried for a while. I also bought the Replens and tried it for the first time Thursday. (not for sex) So far, it hasn't been all that great but I am not sure if all of it went in. Sorry for TMI. I am going to keep trying. I am not even on Tamoxifen yet.

  • trvler
    trvler Member Posts: 931
    edited October 2015

    Just to add, I have spoken with two MO's about topical estrogen and both of them were ok with it. I know other people's doctors said no. Mine said it is a quality of life issue.

  • PainAwayPlease
    PainAwayPlease Member Posts: 2
    edited October 2015

    Trvler, what's the name of the topical estrogen you are going to try?

    Karen

  • moderators
    moderators Posts: 8,741
    edited October 2015

    Ladies,

    Don't forget the main Breastcancer.org site has a whole section about Treatments for Vaginal Dryness and Irritation, including suggestions for moisturizers, lubricants, and estrogen.

    We hope this helps!

    --The Mods

  • trvler
    trvler Member Posts: 931
    edited November 2015

    Thanks, Mods! I will note that.

    I don't know what the topical estrogen is. I think there is probably more than one kind. I think since I am going to be finishing rads soon and will need to see MO to get Tamoxifen started, I will ask about it then. I was hoping I wouldn't need it.

  • radgal
    radgal Member Posts: 23
    edited November 2015

    Testosterone directly affects libido in women. I will be using testosterone cream combined with Anastrozole until I know how much testosterone feels right, then eventually may get the testosterone pellets combined with anastrozole. The anastrozole will prevent the testosterone from aromatizing into estrogen. My doctor ordered .1 mg anastrozole instead of 1 mg as I am terrified of the side effects. Google Nancy Lebowitz, MD and an OB-GYN, click on "Testosterone treastment" and watch her video specifically for breast cancer survivors.



  • moderators
    moderators Posts: 8,741
    edited December 2015

    Hello All,

    We are interested in hearing your experiences on issues related to your diagnosis and/or treatment,such as sexual matters, weight gain/loss, chemo brain/chemo fog, bone and heart health, exercise and nutrition issues, menopausal concerns, lymphedema, infertility, neuropathy, joint pain, skin/hair changes, relationship changes, work and career hurdles, and emotional issues including fear of recurrence. Please don't feel that you need to address each of these issues. We are listing these as suggestions. Your stories will complement a new, upcoming section on the main Breastcancer.org site on Survivorship issues.

    Some things to think about for your story: Have you gained a new perspective on this other side of treatment? What life lessons have you learned? What advice would you give your newly-diagnosed self or other person just starting the journey? How does your "old" self compare to your "new" self? Is there a difference? What impact has your breast cancer diagnosis made on your life? If you've become a Breast Cancer Advocate, what is your mission and how are you fulfilling it?

    If you're willing to share your perspective of your life after diagnosis and treatment, or your life on active, maintenance or on-going treatment we'd love to hear from you! Please send your story via PM to the Mods along with a picture of yourself or something that represents you, and a note about how long since you've been diagnosed. Seeing these stories will surely inspire our new members, along with members just going through treatment now, to see that you CAN get through active treatment and get to a new normal on the other side, even if that includes maintenance or ongoing, lifelong treatment.

    Your story will be included with the other Members Stories photos on the main site (http://www.breastcancer.org/community/acknowledgin...), in our December Newsletter and may also be used in part throughout the website and/or in fundraising or event materials.

    Thank you for considering!

    --The Mods

  • ggtexs
    ggtexs Member Posts: 5
    edited November 2015

    Wow, what a fantastic group of ladies. I don't know how I have missed this thread for so long!!!!! I am desperate and sad but I feel better after reading so many stories here!!!!!

    I had ok libido before my ovaries were removed and much of my physical response was tied to my breasts (double mastectomy, DIEP flap recon on both sides) and now.....N O T H I N G. My husband is a gem and does not even mention it ....but I am so sad about this. I went to a regular OBGYN and I mentioned my lack of libido. He suggested the testosterone 2% gel but to talk to my ONC doc first. I talked to my ONC and he just said no. No reasons....he just said...no ....it is a hormone. That is it! I asked...what about quality of life I am 39?!?!?! and pretty much told me to do whatever I thought best but he was against it. I am floored because I feel like this is the end of the road. I went to a psych doctor at MD Anderson and she recommended books and a dilator. It just all hurts so much and reading the books really does nothing for me....sigh. I am not sure what else to do or if I am being reckless and risking recurrence by trying the testosterone gel......

  • lago
    lago Member Posts: 11,653
    edited November 2015

    I'm sure your MO is concerned because of your young age. Are you high risk for recurrence? I know my oncologist feels I am and if I asked her I'm pretty sure she would say no. I managed to get it back but it took lots of time. I started with Replens every other day for a month, the as directed till I didn't need it anymore. I'm not like before but it doesn't hurt and I can get the big O, eventually

  • trvler
    trvler Member Posts: 931
    edited November 2015

    Lago: You used replens for sex? My MO says I can use topical estrogen if I need to. She says it's a QOL issue. I am 52. I kind of think there are many women who don't care if they can't have sex any more but I am not one of them. After I finish rads and heal up, I am going to leave no stone unturned to get it back. It might not work but I am committed to trying.

  • lago
    lago Member Posts: 11,653
    edited November 2015

    Replens I used as mentioned but for lube I used Atroglide. I'm currently 54. There are plenty of women who care about sex. That's why this thread exists.

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