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Vaginal Atrophy solution that is working for me!

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  • cah21
    cah21 Member Posts: 9
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    KBL,

    I'm glad a found your thread. I thought I was going crazy! I am having that very problem right now. I have always been prone to UTIs. Even before my BC, I had problems with painful intercourse. Shortly after my marriage I got diagnosed iwth vaginismus. I was told to use 1% Hydrocortizone twice a day for a while and it made things somewhat better for many years. After my BC, I also had my ovaries removed and caused extreme atrophy. Unlike some of the women here, I don't have uncomfort anytime except when trying to have intercourse. My OBGYN told me to try Replens. After two doses, I got a UTI. I stopped for a few months and tried again. I got another UTI. So about a month ago on this thread I found the NeuEve. I purchased the silk. Well, after two doses here I am with burning and some frequency. The quick test came back negative, but I am waiting on the results of the culture to come back. I read that the burning could be from my atrophy being so severe. The physicians don't know anything about these products because they aren't prescriptions. I'm at my wits end. I can't even stand to have my husband touch me down there. If you find anything that works, please let me know!

  • jinx27
    jinx27 Member Posts: 119
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    @cah21

    Thank you for posting here, when I created this thread I remember reading that some patients have different levels of atrophy. I didnt even know what atrophy was until I was dry and had pain.

    Some people discover it when its beyond mild and in need of other attention besides OTC suppositories.

    Im truly sorry you are having a hard time finding something that help ease your atrophy. Severe atrophy requires a different approach. I hope you dont give up! I like to research this stuff online and will post here.

    Because of you Im thinking of finding an vaginal atrophy chart...maybe I post it in here so that the various "levels" are in one spot.

  • kbl
    kbl Member Posts: 2,729
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    cah21, I know UTIs are so distressing. I haven’t found anything really to stop the pain with sex, but I don’t think mine is as bad as some. I hope you find relief soon.

  • JustG22
    JustG22 Member Posts: 18
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    Does anyone have anything to add of the subject of a spouse that does not understand that sex in really painful and with things slow to heal after tearing the risk of infection is concerning. Also, I feel that my husband, by not taking care of himself is not is a state to understand or be a caregiver if I need him to be.

  • jinx27
    jinx27 Member Posts: 119
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    @JustG22

    I wasn't in a relationship when I was diagnosed nor am I in one now. But I can say for sure maybe trying a new approach to your new normal..

    - Maybe having a conversation about how things are different, and therefore your needs will be too. Do you need different things to help you stimulate your self. Redefine pleasure for yourself...maybe its not intercourse just yet...maybe its just sexual touch.Im hoping your husband can meet you where you are.

    - Im not afraid to share that I was very nervous about approaching pleasure for myself as a patient...my therapist is also a sex therapist. She encouraged me to explore self pleasure and after I was able to maintain my atrophy I began a health habit of self pleasure. I invested in a very nice self pleasure tool and its help me keep my vagina and the rest of my body healthy. Vaginal dilators also help too!

    Maybe some other folks can chime in...

    Please explore this specific forum!

    Wishing you well!

  • sharon0706
    sharon0706 Member Posts: 80
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    Hi all. Glad to find this thread. I finished TC last week and am wiped out. Today I had my second Lupron shot and started taking letrozole. My oncologist prescribed Estring when I told her sex was painful. About to go pick it up at the pharmacy. Does anyone who has used it have any tips?

  • moderators
    moderators Posts: 8,055
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    Jumping in to let you know that HEAL magazine (part of CURE Media Group) is interested in interviewing people about the sexual side effects of cancer treatment,. The writer is on a tight deadline, so in case you may be interested in sharing your experiences, please email or call Katherine Malmo katherinemalmo.com/portfolio, Phone: 206-498-4783

    Thanks!

  • sharon0706
    sharon0706 Member Posts: 80
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    I installed Estring last night and am feeling hopeful. I was also advised by an oncologist friend to try Hyalogyn. Does anyone have any experience with that moisturizer?

  • jinx27
    jinx27 Member Posts: 119
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    sharon0706 Ive never heard of Estring before, I hope it works out for you. Do you mind posting here and letting us know?



    Effects of sea buckthorn oil intake on vaginal atrophy in postmenopausal women: A randomized, double-blind, placebo-controlled study


    https://www.maturitas.org/article/S0378-5122(14)00239-4/fulltext


  • sbelizabeth
    sbelizabeth Member Posts: 955
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    Estring is a product that provides estrogen locally to the urogenital tract. It works fabulously for many women, but it also comes with a boxed warning about using it with a history of breast cancer. For some women, the risk of waking up sleeping cancer cells isn't worth the benefit. For others, their symptoms of vaginal atrophy are intolerable, and to them, using this product is worth the risk.

    https://www.estring.com/?source=google&HBX_PK=s_estring&skwid=43700054283704470&gclid=CjwKCAiAp4KCBhB6EiwAxRxbpL8qZ0iU56yzn4AGC-dNm566okxEzRYeqKPheHkAG7c8o6_SyXFHYhoCWy4QAvD_BwE&gclsrc=aw.ds

  • momand2kids
    momand2kids Member Posts: 118
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    Interested in this Neu Eve product-is its something that your dr approved? I have vaginal shortening that has been very painful- able to do a little bit of vagifem weekly but the atrophy is tough-- not sure that this product helps with that? would love to hear about success stories on this--- I am really frustrated with my lack of progress in this area.


  • Laketartan
    Laketartan Member Posts: 2
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    I've tried the Ah Yes and love it, but I'm finding it hard to get now. Everything is short dated and appears unavailable to order. Is anyone else having this problem? Are there any alternatives

  • laughinggull
    laughinggull Member Posts: 512
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    Hi momand2kids,

    I have significant atrophy too unfortunately, and I gave the NeuEve a good try. The moisture and lubrication that it provides feels very similar to the natural thing. The ingredients are mysterious, you need to take at face value the description of the seller that it has no estrogen. It unfortunately did NOT help with atrophy in my experience. Moisture yes, elasticity nope. I am out to see the gyn to get some estrogen-based solution with the permission of my MO.

    Hope this helps,

    LaughingGull

  • jinx27
    jinx27 Member Posts: 119
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    Im so happy this thread is being used as a place to express our experiences with vaginal atrophy, thank you soo much for posting everyone, this is not always discussed amongst women. HeartKeep in mind everyone's severity of atrophy may be different so experiences may vary greatly.

    momand2kids

    I explained the product to my MO at Penn Med and she was completely fine with it. After doing alot of learning about how vaginal atrophy happens, the levels of severity etc, I made the decision to purchase this over doing a medical procedure (Mona Lisa Touch) or using and low dose estrogen based products. Im a young high risk bc patient (family history, genetics) so I stay away from estrogen based vaginal products.

    From your post, I understand that you are experiencing vaginal shortening which is a bit different than atrophy, however the website has an excellent customer service service where you can email with any questions and get a response. I think doing this along with consulting with your MO and GYN would be a nice first step. I hope everything works out for you.

    Feel free to explore the FAQ page, a link to the email address is at the bottom of the FAG page.

    https://neueve.reamaze.com

    LaughingGull

    I hope your search for a permanent solution goes well, I know it can be frustrating to find a solution to all of this. One last thing, it is mentioned on the website that Omega 7 and 3 should be taken orally also when using the suppository. These fatty acids actually help improve elasticity internally, the suppository alone won't do that.

    Best wishes with your search!

    Laketartan

    Ive heard of AH Yes! before and just visited the website, I absolutely love it and will give it a try. Before I found NeuEve, I used Good Clean Love its found at Target. Try a detailed google search too maybe you can find some alternatives. Let us know what you have found!

  • InnaB2018
    InnaB2018 Member Posts: 766
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    Here’s my routine approved by my oncologist and gynecologist: Luvena every other day, Key-E suppository on alternate days. Aloe Cadabra moisturizer for intimacy. All estrogen free

  • wallycat
    wallycat Member Posts: 1,273
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    Many oncologists say vaginal estrogen is safe. The black-box warnings are for HRT but because these inserts contain estrogen, they are mandated to label it with the scary warnings.

    I started using vag. estrogen not because of atrophy but because of my bladder. It was unreal...never had UTIs but the frequency was ungodly. We make choices based on quality of life. This issue cropped up during a tremendous amount of stress and estrogen was the only thing that worked.

  • Christmascarol
    Christmascarol Member Posts: 19
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    agree with wallycat! Same here, poor bladder. I use a wee bit of estrogen plus repagyn. Helps the bladder and tissue. GL ladies!

  • cardplayer
    cardplayer Member Posts: 2,051
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    I asked my GYN about vaginal estrogen (like estrace) usage. She said would not prescribe or recommend since I have triple positive BC.

    Does anyone else feel like they are more uncomfortable for a week or so after chemo? I felt like I had been doing well with Luvena every other day, but am very uncomfortable a week after my HP treatment.

  • wallycat
    wallycat Member Posts: 1,273
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    My onco would also NOT rx any hormonal cream. The dose is too high and most women have a hard time dosing less. The vagifem (or generic), imvexxy or estring is 10 mcg. MICROgrams. She's fine with that.


  • cah21
    cah21 Member Posts: 9
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    InnaB2018 does this routine with the products work for you?

  • jinx27
    jinx27 Member Posts: 119
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    Just dropping a line to say hello ladies!

  • chicagoan
    chicagoan Member Posts: 972
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    Hi Jinx-Thank you so much for tending to this thread. A few years ago I went for a pap smear-it was so painful but my PCP didn't even suggest any vaginal atrophy solutions despite knowing I'm on cancer treatments. I started New Eve-it's really a big help. It's just nice to feel a little more normal and healthier.

  • sharon0706
    sharon0706 Member Posts: 80
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    I am about two months into my first estring. It has improved my personal comfort but not enough to have successful sex, even with lube.

    I am currently auditioning two vaginal moisturizers, hyalo-gyn and replens. So far I like hyalo-gyn better.

    The instructions are to insert the moisturizer twice a week or so, but at that frequency, sex was still not possible for me. My NP says some women have more success when they use it daily. So now I'm inserting moisturizer every freaking night before bed, and I use lidocaine (script from gyn) on the vaginal entrance before sex.

    I would say that the pain with sex is a 4 out of 10 but it's tolerable, and I'm hoping with time it will get easier.

    My NP also had these two other ideas:
    - daily coconut oil, inside and outside
    - Albolene, the old-school face cream

    A pelvic floor PT also recommended Revaree.

    I found out that my hospital has a Sexual Health Program. It is booking out months in advance but I got an appointment and am hoping to get more information.

    Would love to hear what is working for others!



  • jinx27
    jinx27 Member Posts: 119
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    Im thinking about finding a chart that shows the varying degrees of atrophy and posting it here. Its soo important to to know that atrophy has stages.

  • kksmom3
    kksmom3 Member Posts: 101
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    I'd like to see a chart to know where I'm at in this nasty process. Thank you

  • jennyjo20
    jennyjo20 Member Posts: 28
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    I have only been on OS+AI for about 9 months, so I'm well aware I will eventually need stronger tools in my arsenal. However, for now I am doing pretty well using coconut oil internally and externally twice a day. Externally, I also use a product called VMagic by Medicine Mama. It is a vulvar balm made of natural organic ingredients (olive oil, avocado oil, beeswax, and sea buckthorn oil). I cannot recommend this product highly enough. I am trying to stave off the vaginal effects of an early menopause for as long as possible, but I will certainly be keeping my eye on this thread if my challenges intensify. So far, these two products have allowed me to continue having pain-free sex. If and when I need it, I will probably add estring. My oncologist and gynecologist both feel that it is safe to use and reassured me that the estradiol was a very low dose that acts locally and will not raise systemic levels, which my oncologist monitors when I get my monthly Lupron shot.

    Also, a friend of mine recommended a product called V Fit. It uses infra red light and heat to stimulate moisture and collagen production in the vaginal canal. I have not used it myself, but it has hundreds of positive reviews and the friend who recommended it swears it was a life saver. It's expensive (about $500). I'm thinking about purchasing it in the future and will be back to give a review if I do.

  • jinx27
    jinx27 Member Posts: 119
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    Just dropping in to say thank you and welcome to new posts, any contribution is good!

    I thought I would share something.... most recently I decided to stop all of my supplements and observe how I feel with just the Lupron + Arimidex. I was taking Omega 7 w/ (Sea Buckthorn) and Omega 3 everyday to keep my vaginal lubrication and tissue from dropping / thinning too far. Since I have not taken it in one week, Im SUPER dry, like complete sandpaper. The last time I was this dry was before I starting using the suppositories and oral supplements.

    This is how I know the Omega 7 and 3 are going to stay in my diet, taking this along with the suppositories every 5 days seems to be whats working. Fatty acids help vaginal tissue to grow hence the maintenance of lubrication.

    Im still working on getting a nice visual chart to help describe the different stages of atrophy, hold tight.

  • mikamika
    mikamika Member Posts: 242
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    Hi Jinx27,

    Thank you so much for sharing your experience and helping others!

    Could you tell how long did you take all these supplements, please? Did they affect in any way your blood tests?

  • Lamp
    Lamp Member Posts: 15
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    Hi jinx27, I truly admire you for your openness and honesty! Thank you! I do suffer with vaginal atrophy, as well as shortening and shrinking vag. I can not insert any oil products as I get extremely red and raw, possibly an allergic reaction. Trial and error! I am taking vagifem. Seems to keep things at bay, not much success with intercourse though!
    Keep strong ladies! We do need to be our own advocates!

  • chicagoan
    chicagoan Member Posts: 972
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    I tried New Eve and liked it but $50/month is a little pricey for me so I bought a huge container of cocoanut oil at Costco for $13. I have put some in smaller jars and keep it refrigerated when it is hot. I am finding it works as well as New Eve for me and since it is so much cheaper I can put some in every night. I am also using as face cream-seems just as effective as my more pricey ones.