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Vaginal Atrophy solution that is working for me!

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Comments

  • cardplayer
    cardplayer Member Posts: 2,051

    Jons_girl - I was using estrace cream. Since my BC was triple positive, GYN won’t prescribe for me.

  • homemom
    homemom Member Posts: 842

    Has anyone used the NewEve that Jinx27 started using? I'm not sure if she came back and updated how it worked for her

  • laughinggull
    laughinggull Member Posts: 522

    I gave the NeuEve a good try. It provides moisture that feels very natural. However, in my experience, it does not help with atrophy, i.e. the loss of elasticity, the shrinkage down there. And it is pretty pricey, and they don't disclose the ingredients. So, a rip-off, if you ask me. Maybe helps if your only problem is lack of moisture.

    I am using the dilators and they seem to help a bit. I would like to hear any experience others have with the dilators. Can you really dilate ie make room if you use them consistently? Somebody mentioned pelvic therapy and I would also like to hear how it helped.

  • kbl
    kbl Member Posts: 3,010

    HomeMom, I tried NueEve once or twice. I had a little bit of a reaction, so I stopped. I think it was burning, but now I don’t remember what the reaction was.

  • lillyishere
    lillyishere Member Posts: 789

    I am not sure if I should write this in public but I hope it will be helpful. My MO recommended using Good Clean Love Restore as a moisturizer, 2xday for 2 weeks. Also, as lubricant to use Good clean love: almost naked organic lubricant.

    Have any of you have used them? What do you think?

  • kksmom3
    kksmom3 Member Posts: 101

    I tried the Neueve and it didn't help me at all, plus $$$. Good Clean Love burns me. Now I am trying a product called Gynetrof, which contain hylauronic acid, which I believe is the key ingredient for me. Unfortunately, it is always out of stock on Amazon. I also use a compounded estriol product my gyn ordered for me. I have tried so many OTC things. I am to the point where QOL matters, I can't enjoy life feeling like I have a constant nasty UTI.

  • kbl
    kbl Member Posts: 3,010

    kksmom3, that is where I was at when I decided in using the estrodiol. I want quality of life.

  • trinigirl50
    trinigirl50 Member Posts: 158

    Laughinggirl

    I used dilators from smallest going up in size to biggest for about two months. I was unable to have a pap smear before the dilators, too small too painful, but was able to have one after I had used them. So yes they work. Use plenty of lubricant, I also used Lidocaine at the opening of the vagina to numb any pain (which was considerable) in the beginning.

    I use VIT E capsules as suppositories every evening. I just pop them up there.

    I also use Premarin once a week because the atrophy was causing serious issues (I had to pee constantly - and it wasn't due to UTIs). It's not ideal because I was 100% E+ but I was getting no sleep at night. It has definitely improved things, so worth the risk, to my mind.

    Anyway, yes to the dilators. Really helped me.

  • jons_girl
    jons_girl Member Posts: 461

    thanks for sharing that info nsbrown. I’m going on testosterone first as my gyn says that this works well for vaginal and libido help. So I’m going to try it. It’s different than I used prior as this will go in the vagina. So I will let you all know how it goes. I am trying it for 3 mo to start with.

    Has anyone gone on testosterone cream here? She says it helps a lot of women. And supposedly safe for women like me who have had cancer. I trust her. We will of course still check my blood in 3 mo too.

  • jons_girl
    jons_girl Member Posts: 461

    Lilly:

    I use good clean love cream. And it works pretty well. They have a product too with hylauronic acid ithink. I think that's what one of the products has in it anyway.
    For me it works best if I use it more than once a wk. two times a day tho is a lot!! Using it like once a day at night I think would be plenty? We use astroglide organic oil too. Both of those products work pretty well. my gyn had a list she shared with me with all kinds of products listed.
    My libido is what I'm taking hormones for mainly. I'm not on hormone blocker but I've been through menopause. So have issues with post menopausal stuff too. I'm considering estrogen cream if the testosterone cream doesn't work. But will revisit that conversation with my gyn in May.

  • jons_girl
    jons_girl Member Posts: 461

    kksmom:

    Good clean love has a product with hylauronic acidhttps://goodcleanlove.com/products/bionourish-moisturizing-vaginal-gel-with-hyaluronic-acid?variant=40054465560760&currency=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=EAIaIQobChMI2NLHhO7n9QIV8j2tBh1kOQtlEAQYBCABEgI-pfD_BwE

  • homemom
    homemom Member Posts: 842

    Thanks everyone for the responses. I don't have pain when I get a pap smear, just during sex. No UTI's either.

  • LisaEllen
    LisaEllen Member Posts: 8

    This problem is huge. I am a 15 year survivor and suffered for many years before finding a solution that works.

    I use Coconut oil in shower on all skin and even a heaping tsp. inserted vaginally with fingers. Easy to apply because it is a solid. Surprisingly, my OB suggested this. After many years of not suggesting it? So easy and cheap

    I also switched from a water based KY to a silicone based KY for intercourse. It works better and is worth every penny. It lasts longer and has a more natural feel. This can be applied to either partner.

    Finally, I started an estrogen cream. It's an estradiol 0.1 mg per ML applied with a plastic tube to vagina and vulva 2 or 3 x week as needed.

    I avoided the cream for many years because I was scared of it. But my OB and my oncologist said it was ok despite my medical history and diagnosis. This has given me back my libido and helps my body heal vaginally. Before, I was actually getting sores after intercourse.

    Used all together, problem solved.

  • laughinggull
    laughinggull Member Posts: 522

    Hi LisaEllen. Thanks for chiming in and sharing your experience. Taking note of everything you say

  • jons_girl
    jons_girl Member Posts: 461

    Lisa Ellen: thank you for sharing what's helping you. I'm assuming if your over 50 that the libido was only helped by the estrogen cream. My libido is gone…..I'm hoping it returns. I've been using just testosterone cream for about a month right now. I have the other stuff like oil and moisture cream for vag. But those won't bring back my libido. I'm hoping eventually it will return. They say it can take like 3 or more months for libido to return with testosterone. I've never heard of estrogen helping libido. So this is interesting to me. How long did you use the estrogen cream for your libido to return? Thank you for sharing.

    On a side note, some of the testosterone cream does convert to estrogen when you use it.

    Also another thing, I noticed almost immediately after starting testosterone cream that my vagina was so much better dry wise.

  • sunshinegal
    sunshinegal Member Posts: 68

    Question for all of you: I'm experiencing deep pain with intimacy -- as though my vagina is less deep (long?) than it once was, only I haven't had a hysterectomy or any other gynecological surgery. Do the various remedies in this thread address that kind of pain?

  • jons_girl
    jons_girl Member Posts: 461

    sunshinegal: I will just say in my experience I’ve had pain deeper inside vag I think but it’s dryness. The testosterone cream has helped me a lot with dryness. Hopefully others here will respond to your question about shrinkage of vag.

  • ddil
    ddil Member Posts: 92

    I was reading the posts on this site and some of the dates, now that everyone has used some of the recommended products for some time, Can you recommend a few I can try. I am on my second month of Ibrance and Letrozole. I really want my intimacy back with my husband. Thank you all.

  • ddil
    ddil Member Posts: 92

    Another Question, Has anyone heard that you need to use a condom if you a re on Ibrance and Letrozole

  • barsco1963
    barsco1963 Member Posts: 879

    Thanks to everyone for sharing their experiences. I have been absent from BCO for quite a while but I knew that I could rely on the forum to help me out with the issue of painful intercourse, vaginal dryness etc. I have recently been in discussion with a gyn who offered me only two options. One an estrogen cream which my MO says no to and the Mona Lisa touch which as noted is quite expensive (even when offered at 1/2 price due to bc). I was stage 4 from the get go, NED for the past few years, but still hesitant to go with an estrogen cream. I am so happy to lean that there are so many other options that are available. Being in Canada some of them are not available to me but at least I now have a starting point.

    I do have one question - has anyone's partner had any adverse effects to any of the creams etc?

  • poseygirl
    poseygirl Member Posts: 298

    Hi all,

    Once in awhile I check in on this topic to see if there is anything 'new' to report. I am in Canada and have seen a well known gynaecologist in this area. He tried to give me a compounded product similar to DHEA. An estrogen gets created locally within the cells in the vagina but doesn't at all circulate. I tried the product, but the the discharge was absolutely horrific. Apparently discharge is a common and central side effect, but it was literally intolerable. He said that I have to wait to try DHEA which is approved now in Canada but taking time to get out onto the market.

    It is pretty much my last hope to try this product. He was pretty blunt about the fact that lubes do very little for women with atrophy. It is the lack of estrogen. Most lubes burn me. And the ones that don't burn still have such a limited effect. I find it highly frustrating. It's hard to want to have sex when it hurts. Gee, go figure. I've been having 'the other' type of sex because it hurts less. This is not how I pictured being 53. I'm not a person who requires a ton of sex, but it is truly unfortunate that we have to struggle so much to find something that works for us when we've been through so much. And since I too am triple positive (as someone else mentioned here), they won't want to give me the estradiol cream. I went into menopause when I went into treatment at 47, and after a few years on Letrozole, things got worse and worse.

    Here's hoping there are developments in this regard. Because our options are truly few. I appreciate following this thread! Thank you for sharing.

  • kbl
    kbl Member Posts: 3,010

    poseygirl, I'm so sorry it didn't work for you. I will tell you I'm HR+, Her2-, and they don't recommend estrodiol for me, but I was at my whit's end and would rather have quality of life. I make a tube last me for about a year, but I've been using it quite a while, and my tumor markers are still dropping. I'm not at allregretting my decision.

  • poseygirl
    poseygirl Member Posts: 298

    Thanks KBL, I appreciate it. I’m glad you are able to take it and not be experiencing any issues. I see my oncologist in June and will ask her about it. The gynaecologist mentioned it, but said he’d never prescribe it without discussing with her first. Abs admittedly, I will not want to take the chance if she’s hesitant yet willing to let me try. We will see. Thank you so much!!

  • kbl
    kbl Member Posts: 3,010

    poseygirl, I totally understand. We all have to do what we’re comfortable with, but I just couldn’t take that much pain anymore. It still hurts a little because I only use a pea-sized amount twice a week, but I’ll take it. Please let me know what they say

  • jons_girl
    jons_girl Member Posts: 461

    I use testosterone cream. I started using 1 ml daily for two weeks, then three times a week. I do not really need any lube at all anymore. And what I do is use it before I go to bed.

    I plan to add estrodiol cream. I'm assuming it will be one cream I use with testosterone and estrodiol ingredients in the cream. Both my MO and my onco gyn are fine with me using estrodiol. They watch my blood levels for estrogen and testosterone. I have been using the Testosterone cream I think 3 mo now. And my estrogen levels aren't going up tons.

    I will continue with my scans every 6 mo and blood tests periodically too

    I am both PR/ER+ and Her2- But they are fine with me using only cream vaginally....

    I had my bilateral breast ultrasound today. May 20.all is clear. this is my 5th yr post cancer dx. Very thankful all is still ok.


  • swivel2020
    swivel2020 Member Posts: 7

    so after two different gyn said small amounts of the estradiol cream wouldn't hurt me I've started using it. The other gels and vitamins did not help me. I'm 75 and have severe vaginal atrophy with a very unpleasant discharge. The estrogen cream is definitely helping! But guess what else it's helping…. My bladder leaking and urgency!!! I did some research and found that there have been studies that show the atrophy and incontinence (?) are linked to estrogen. Also perhaps vaginal prolapse. now I wonder why not one of my doctors mentioned this. Just thought I'd let you know it's been helping me with both.

  • cardplayer
    cardplayer Member Posts: 2,051

    My BS and GYN both said no to using estrace, which I stopped when I was diagnosed. Vaginal moisturize provide very temporary relief, so I get uncomfortable on days I don’t use it. I’m post menopausal so I doubt my body is producing much estrogen. Taking anastrozole to block estrogen doesn’t help much either. 😣 Wish there were better options

  • kbl
    kbl Member Posts: 3,010

    swivel2020, so glad it’s helping both issues.

    Cardolayer, I was told no in the beginning as well, but I made the choice to use it. We all have to do what’s right for us and weigh the risks. I hope you can find something that works for you.

  • Runner70
    Runner70 Member Posts: 177

    i haven’t visited this site in years but I’m suffering from horrible dryness and thought I would check in and see what others like me are using. I went into menopause 6 years ago at 45 with chemo. It was like jumping off a cliff when the side effects immediately began. My cycles and hormone levels were completely normal prior to chemo. Anyway, I’ve finally adjusted and I rarely have hot flashes anymore. The vaginal dryness over the past year has been unbearable. It feels like I have a yeast infection all the time. I’m not married and haven’t had a boyfriend since cancer treatment and it’s partly because I’m scared of having sex and that it will hurt really bad now that I’m fully in menopause. I’ve tried every lubricant/potions/creams under the sun! You should see the cabinet above my toilet. It’s filled with products. The only thing that has helped has been an estring. I got one from my Gyn back in July and it helped so much! Since I removed it my symptoms are back. The itching and burning are so bad that I’ve been using sunburn spray on my vagina to numb it up! Isn’t that crazy?! I decided today to get another estring and to use it just for a month until the atrophy resolves then switch back to estriol cream twice a week. I’ve tried estriol cream to get rid of the symptoms but I think my problem is so severe I require a constant low dose estradiol product until I get relief. I don’t want to get a recurrence but my lady parts are so miserable it’s affecting my job and my sleep! It makes me mad! Isn’t having cancer bad enough and now we have to get thrown into menopause early and have to risk getting cancer again because our vaginas are making us miserable? Nobody understands except people here. So thank you for allowing me to rant! 😂

  • kbl
    kbl Member Posts: 3,010

    Runner70, that sounds so miserable. I don’t blame you for wanting quality. I would do the same thing. I’ve been on estrodiol for a few months because I just couldn’t handle the burning, stabbing pain during sex. I hope you can feel better soon.

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