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I WANT MY MOJO BACK!

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  • jaycee49
    jaycee49 Member Posts: 1,264
    edited June 2019
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    Pamela, my gyn prescribed a testosterone cream a few years back. I never used it because I have a whole set of issues that I was dealing with at the time. This gyn was one of the good ones, really smart and compassionate. Of course, she has since retired. I might give it a try. I remember thinking it was just weird at the time. It is probably too old from sitting around to use now.

    Whoever said to sleep without undies is a genius. The above mentioned gyn also told me that. Also a genius.

    Found it. Shetland. Thank you.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2019
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    Jaycee, I really hope your new gyn will look at the big picture and devise a good plan for you. I hope it includes medical approaches as well as complementary and lifestyle approaches to give you the best chance at vaginal health, and to stop having to suffer like this. I suggest you take a typed, bullet-point summary or timeline with you, something to help her grasp the whole picture without getting lost in too many words and details. And notes about how your own particular case has been unique. Perhaps you already have prepared this.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited June 2019
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    Thanks, Shetland. I've been meaning to get back to you. I've been dealing with various aspects of this issue for YEARS and it's hard to put together info for a new doctor. I still have the new patient forms here that I have to fill out. I'll see how much info can be given there and add more, depending on what is going on that week. I'll certainly include my big spreadsheet of the vaginal moisturizers I use. I've been taking fluconazole every other day for about two weeks. The yeast has substantially subsided but when I try to use a moisturizer, which I know I need, I get new discharge and slight burning. Last night, I had to almost PRY open my labia to insert a moisturizer, I was so dry. Definitely created a tiny cut somewhere. There is just so much to tell this new doctor, I dread the process. I've been putting it off but the appointment is approaching so I need to get on it. I also have this dread that she will not be able to do anything, which I already know, and I'll be disappointed. Very deja vu for me.

  • corky60
    corky60 Member Posts: 453
    edited June 2019
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    Any time I take an antibiotic I get a vaginal yeast infection. My naturopath recommended that I take SF 722 by Thorne Research. Take 5 twice per day. She says I have yeast living in my body. She recommends that I take it for at least 3 months, preferably 6 months. I just ordered it from Amazon. I will report back after 3 months.

  • tangandchris
    tangandchris Member Posts: 934
    edited June 2019
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    I'm on a fast approach to crazy town and I need help. I don't post much anymore, but today is one of those days.


    I woke up this morning with some serious pain around my Coccyx. It feels bruised and achey, if I turn a certain way when sitting or shifting it is God awful. It came out of the blue. No trauma to the area. It hasn't gotten better and I'm considering a stop at the ER on my way home from work.

    Of course my head goes to cancer. The mere fact this came on so suddenly has me freaked out. The pain is quite intense.

    I'm venting, I know no one can give me answers. Just need to get It off my chest. What are the chances this is mets?😭😭😭😭

  • Pamela23
    Pamela23 Member Posts: 394
    edited June 2019
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    Update on using Premarin for my clitoral atrophy (NOT vaginal atrophy--it worked on dealing with the pain but still no pleasure). I emailed my GYN and told her the the estrogen cream wasn't working and sent her 2 articles that said its TESTOSTERONE cream that is used to treat clitoral atrophy, not estrogen. Guess what? She's prescribing a testosterone cream and the compounding pharmacy will call me next week and send it to my house. Be your own advocate!! :)

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2019
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    How can doctors go to school for so long and for so much money and not even know basic things? I mean this is a gynecologist!

  • runor
    runor Member Posts: 1,613
    edited June 2019
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    Good for you Pamela! It boggles the mind when you have to learn this stuff and then teach your doc. Fingers crossed for good results. Let us know!

  • thecargirl
    thecargirl Member Posts: 66
    edited June 2019
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    To help gain back those "sexual feelings" after taking Arimidex, I tried the "O-Shot and Testosterone cream. The O-Shot is made up of your own Platelet Rich Plasma or PRP. The 20 minute procedure is not painful, the doctor injects your PRP all around your vaginal area. Taking your 90 ccs of blood and spinning it down to get your platelets takes longer. The Testosterone Cream is used every other night in the same areas. My doctor also has me taking 2 Ristela daily, I get it from Bonafide. I think the PRP and cream have really worked and pretty sure the Ristela has helped, that one takes about a month to notice the real difference. I just thought I would share my experience, it does feel good to have that "feeling " again!

    9/16 lumpectomy/radiation, Arimidex (2 years) 7mm, pure mucinous, grade 1, stage 1


  • TWills
    TWills Member Posts: 509
    edited July 2019
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    Thecargirl, My ONC is open to almost anything, even gave me low dose hormones to use vaginally. Last week she gave me samples of the moisturizer Reveree from that same company that makes Ristela, Bonafide, but expressed concerns about a plant based libido helping option of which I think she was talking about Ristela, but maybe not. When I saw her last week I was still complaining about labido and getting something that was just approved by the FDA but won’t be available until at least September, I jokingly said I would get it “bootlegged” until then. She said “fine as long as it doesn’t have or affect hormones” she then mentioned the plant based options that are hormone free but indicated that she felt it would affect hormones too much. Maybe she wasn’t talking about Ristela but I’m going to double check with her on that though. When you read the info on it, sure seems like it should be fine.

    As far as getting the other option “bootlegged”, I already did but still haven’t tried it. Not sure why, I guess I’m waiting until ourneighbors are out of town or something just in case it works great. Lol

  • 2002chickadee
    2002chickadee Member Posts: 79
    edited July 2019
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    Pamela and thecargirl, what is the difference between using testosterone and estrogen? Estrogen helps with dryness and atrophy, and testosterone helps with .... ? Do those of us with ER+PR+ have to worry about using testosterone? Thanks for your insights!

  • thecargirl
    thecargirl Member Posts: 66
    edited July 2019
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    2002 chickadee……...Testosterone in women helps with a a lot of things, like bone strength but it also helps with an overall sense of well being. It is best know for its role in a women's sex drive or libido (from a print out).Testosterone is a primary sex hormone of women made by the ovaries and adrenals. Estrogen plays a large part in the normal sexual and reproductive development in women, along with a lot of other benefits. I think the Testosterone Cream is more of a sexual stimulant when used on the clitoris. My GYN prescribed the Testosterone and my MO was ok with it.

  • Pamela23
    Pamela23 Member Posts: 394
    edited July 2019
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    2002 chick...---I know I have clitoral atrophy from my symptoms so when I googled it, I found this articles:

    https://www.healthline.com/health/womens-health/cl...


    and also more articles like this:

    The clitoris is made up of spongy erectile tissue that fills with blood during sexual arousal. This spongy tissue is maintained by the hormone testosterone and is dependent on good blood flow. When a woman's level of testosterone drops significantly, such as with menopause or the use of hormonal birth control, she could experience a decrease in size, function, and sensitivity of the clitoris over time, also known as clitoral atrophy.
    All the tissues of the body depend on good blood flow for their nurishment and functioning. Because of this, having regular sexual activity or some form of clitoral stimulation along with arousal will continue to provide those tissues with the blood they need. Engaging in regular exercise helps by both increasing general blood flow as well as by increasing and maintaining the production of testosterone. Some women also may benefit from having their testosterone supplemented after menopause in order to prevent clitoral atrophy.

    My GYN knows about my history and I haven't come across anything saying I cannot use it as a BC survivor.

  • macb04
    macb04 Member Posts: 756
    edited August 2019
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    I started on vaginal Testosterone Cream. Applying in vagina and on Clit for the past 2 wks. Because of my work schedule, I haven't had a chance to " try it out" yet. Still doing Vagifem (Estradiol) twice her week too.

    I will let you all know if things go from a badly flickering lighter to something approaching a real flame. I have hopes!

  • Pamela23
    Pamela23 Member Posts: 394
    edited September 2019
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    macb04--updates??


  • FaithsMama
    FaithsMama Member Posts: 74
    edited September 2019
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    I am 54 and feel your pain. I have given up on ever having a sex life again. I am very very sad about that. But, am resigned that this is my life, for better or worse.

  • miriandra
    miriandra Member Posts: 2,077
    edited September 2019
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    Hi Y'all! Thank you for such wonderful frank and supportive information on this topic. If I may add... (this may be old news to some of you)

    There has been a lot of new medical information about the clitoris and women's reproductive anatomy in general. The clitoris isn't just the little nub above the urethra. It also has two long legs of erectile tissue that run to either side of the vestibule that can also be stimulated.

    Please don't be afraid to try toys. Even if the toy isn't what brings you to climax, it can help get things started. Sometimes cooler temperatures can wake up nerve endings that are too warm from hot flashes. New textures can surprise your nociceptors into responding. (Be sure to invest in good quality toys that can be thoroughly cleaned, won't harbor pockets of bacteria, and are durable for use. Be safe while you're being sexy.)

    A good friend of mine has severe vaginismus, and she and her husband don't have traditional sex any more; but they have found a million other ways of enjoying intimacy in bed with genitals. Sometimes we can find fun out of our "box". ;)

    I hope this helps at least a few of you find some new ideas to try. You deserve to be happy.

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    Hi All. So update on using Testosterone Cream Vaginally. BIG difference for me in terms of arousal and climax. I felt like my husband would get a hand cramp just trying to get me close to orgasm, my clitoris was basically nearly insensate.

    Now, since being on the Testosterone, much more sensation. Much more voom that makes me jump around a bit. I worried it was all permanently dead, but after some days of Testosterone use its much more enjoyable to have sex. I am on DIM ( a natural AI) to counterbalance the potential conversion of some of the vaginal Testosterone into Estradiol which can occur in small amounts. I just ordered a refill of the Testosterone, and also on oral Troches, that taste like candy of Oxytocin to have just before sex. Seems to make everything more enjoyable and intense, closer to normal than its been since the bc industry neutered me.

  • miriandra
    miriandra Member Posts: 2,077
    edited September 2019
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    Has your husband noticed any effects from the testosterone cream? Does the vaginal lining absorb all of the hormone, or can your partner be exposed during penetration? I can see how you would receive the lion's share via mucous membranes, but I wonder if there's enough residue for a barrier to be recommended.

    Congrats on your returned fun!

  • april1964
    april1964 Member Posts: 153
    edited September 2019
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    is that over the counter or prescription?


  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    I am getting the Testosterone Cream as a specially Compounded Prescription written by my Naturopath.

    Most guys probably wouldn't even notice the very small residual amount of Testosterone to be found remaining in the vaginal area during sex. The amount that a woman would use is considerably lower than men's normal Testosterone levels, even that of an older guy like my 60 yo husband.

    I don't think he has even noticed I am using the cream.

  • divinemrsm
    divinemrsm Member Posts: 6,089
    edited October 2019
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    I don't think you move forward with the same mojo you had before a breast cancer diagnosis. Bc changes you, and you approach sex from a different perspective.

    I've grown much as a woman since bc. Far less people pleasing. Trying to feel less guilt about putting me first instead of dead last. Sticking up for myself. Placing value on my contributions and insisting others do, too. Challenging the ways I've been conditioned as a female to see the world through the eyes of men.

    I miss my old sex life. But life moves forward. My husband and I have had to adapt to my limitations. I hate bc, but I would not want to go back to my old way of thinking. I used to listen to what my husband told me about my body. Now I'm like, uh, you don't know anything about being in a woman's body, I am the expert on mine.

    I plan to read this best selling book published 4 years ago. Maybe it can offer more insight:

    “Come as You Are: The Surprising New Science that Will Transform Your Sex Life" by Emily Nagoski-Ph-D

    A little about the book from Amazon.com:

    The first lesson in this essential, transformative book by Dr. Emily Nagoski is that every woman has her own unique sexuality, like a fingerprint, and that women vary more than men in our anatomy, our sexual response mechanisms, and the way our bodies respond to the sexual world. So we never need to judge ourselves based on others' experiences. Because women vary, and that's normal.

    Second lesson: sex happens in a context. And all the complications of everyday life influence the context surrounding a woman's arousal, desire, and orgasm.

    Cutting-edge research across multiple disciplines tells us that the most important factor for women in creating and sustaining a fulfilling sex life, is not what you do in bed or how you do it, but how you feel about it. Which means that stress, mood, trust, and body image are not peripheral factors in a woman's sexual wellbeing; they are central to it. Once you understand these factors, and how to influence them, you can create for yourself better sex and more profound pleasure than you ever thought possible.

  • Lamp
    Lamp Member Posts: 15
    edited October 2019
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    Thank you DivineMrsM 😃beautifully said!

    Looking forward to reading your suggestion!

    Keep well!


  • Rocket
    Rocket Member Posts: 910
    edited October 2019
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    Hello Ladies,

    I just need to vent! I was diagnosed at age 49, with highly ER positive and mildly PR positive breast cancer ten years ago. I have been taking anastrozole for that long. I have also not had intercourse with my husband of 40 years for almost 10 years. I never had a natural childbirth because both of my children were born via cesarean section. After three injections of Zoladex, I had a severe allergic reaction to it, so I had a complete hysterectomy/oophorectomy.

    I have tried so many different moisturizers, etc. my gynecologist even recommended using candle tapers of various sizes to stretch the vagina. Yeah, that was ridiculously painful. I am not willing to try the Mona Lisa therapy as I have heard too many mixed reviews.

    I have thought about vaginal estrogen, but I am just too scared to use it. I had three sizable tumors in one breast, all highly estrogen positive and if mixed types of cancer, both IDC and lobular carcinoma. I had a bilateral mastectomy without reconstruction, and a lot of nerve damage. I am in pain every day. I talk freely with my doctors about all the issues I’m dealing with, but other than recommending vaginal estrogen for the vaginal atrophy, they really don’t have any other suggestions. I think my vagina has shrunk to the size of a drinking straw. I can’t even insert vaginal suppositories because it is so painful and causes bleeding.

    I feel so alone with this. I know there are other women out there who are suffering, but they all seem to at least have sex once in a while. My husband is supportive, but I know the loss of our sex life has been very difficult for him. I feel broken. Is there anyone else out there who has not been able to have sex at all?


  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited October 2019
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    Rocket,

    I understand your vaginal issues, and I am sure many others do, too.

    Sad

    I, too, was 49 when first diagnosed, and 10 years of tamoxifin/femara took its toll on me.

    At one point I was so uncomfortable that even walking was sometimes painful, so I tried vagifem, when my gyn and onc agreed that it was ok. I did not find that it helped , so I stopped use after a while. (At first even inserting the applicator was difficult, but moisturizers on it helped that part at least).

    From suggestions on these boards I started using coconut oil, and it did indeed help. Also the hyalogyn and more recently, reveree. My gyn has suggested pelvic floor exercises and vaginal dilators, but I havent yet purchased them.

    Many couples work around their limitations and find ways to keep the marriage satisfying to both partners. Intercourse can return, but it takes time and effort, but in the mean time, - keep things 'alive' and dont let go of the intimacy between you and your husband!

  • hikinglady
    hikinglady Member Posts: 625
    edited October 2019
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    I just had an annual pelvic exam this morning. My OB/GYN wanted to hear about my sexual health challenges, and we discussed my use of Estradiol cream. It helped me after menopause, and I still use it. My MO continues to say that it's absorbed topically and not much systemically. Today, my OB/GYN specifically said that yes, a SMALL amount of estrogen is indeed getting in systemically when I use the cream. We discussed how sometimes a small risk is a reasonable quality of life decision. Honestly, I do not have any idea what the 'small' risk actually is, in percentage of elevated risk. Probably should ask MO that question....

    I use the dosage applicator amount, and I put a small bit of the cream around my whole vulvar area, urethra, etc in addition to in my vagina. It has helped all that skin be less fragile, and my vaginal atrophy has reversed. It's a very important quality of life solution for me. It also reduces the occasional 'urinary urgency' moments that I used to have--this must be as a result of more elasticity in my tissue everywhere.

    Intercourse is NOT like when I was young, but with care, it's possible. DH is patient and kind. OB/GYN has also prescribed Lidocaine gel---numbing the entrance in the most painful area is a solution that I'm working with. Intercourse is RARE for us, but we're working on figuring out how to succeed again! Other lubrication is also necessary, like coconut oil or OTC lubes.

    In one month, I'll see my MO again for a check-up (before my every-six-months Zometa infusion for bone health while on an AI), and I'll ask him, again, to clarify what he sees as the risks of continuing Estradiol. So far, he's been clear about thinking it was a very reasonable thing for me to do.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited October 2019
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    Hikinglady,

    I was put on vagifem years ago for similar 'quality of life' reasons, but the vagifem wasnt helping much, if at all.

    I was just prescribed Estradiol, due to the fact that there is a tight band at my cervix making exams difficult. I've had 2 colposcopies recently, and there is concern that if not able to get a good look, it may not be accurate check up. So, I was was advised to use 1/4 of the applicator , twice a week, and insert as high up as I can. I'm hoping that this will make future exams clearer. Is that the dose that others here have been using?

    As for intercourse, it is still 'a work in progress' and although much improved, things are not at all what they once were. Understanding and kind partner helps a great deal!

  • Rocket
    Rocket Member Posts: 910
    edited October 2019
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    Thank you Ladies for your open and frank discussion of this issue. Where can I get the hyalogyn and reveree? I have never heard of those products. In February I will see a new gynecologist. Hopefully she will give me some answers. I will ask about low dose estrogen cream. I have read conflicting research. My husband and I have both been reluctant to try it. I did try the lidocaine, but it numbed my husband and things didn’t work if you know what I mean. Using a condom would hurt way too much. I make sure to relieve him as frequently as he desires, but it hurts too much for him to touch me. I also was having difficulty walking without pain, but finally I used a tiny bit of hemorrhoid cream on the area and that helped greatly. I cleared it with my doctor first.

    We had a wonderful and satisfying sex life prior to BC. I miss those days!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited October 2019
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    https://www.hyalogyn.com/ This was suggested by my onc, who also suggested that i use Aquaphor at the vaginal opening after each shower/bath as an external moisturizer. I was able to get a free sample from the company when I explained that I am super sensitive and reluctant to invest in a product that might be uncomfortable.

    https://hellobonafide.com/products/revaree My gyn said this is easier (it is) and she had samples in her office.

    I hope you are able to find some relief with one of these! It is surely worth a try.

    PS Even with the above products, it is not 'like the old days', - I know what you mean about missing those days!


  • hikinglady
    hikinglady Member Posts: 625
    edited October 2019
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    My initial Estradiol dose was 5 g daily for 1 or 2 weeks, then maintenance dose has been 5 g, 2-3 x a week. That's about a teaspoon size amount. The applicator holds maybe 4 such doses, but it's possible to measure, with the applicator, exactly my dose. My type is a cream in a small tube. The applicator is like a tampon applicator, with an outer sleeve and inner pusher. I choose to use the cream type, (rather than the capsules that are pre-measured that you insert) because I can use a few drops of it each time to lubricate my perineal area, and this has helped with that tissue's fragility. Before I started on Estradiol, my skin down there would sometimes be abraded by just wiping with normal toilet paper, so it was awfully fragile. Estradiol has solved that.