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Vaginal Atrophy solution that is working for me!

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  • homemom
    homemom Member Posts: 830
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    Why do we need a vaginal dialator? I pushed three babies out of there!

  • kbl
    kbl Member Posts: 2,739
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    Hyalo-gyn is so expensive. I had my gynecologist prescribe the estrodial. I will be telling my onc, not keep it from them, but I want quality over quantity. I only put a pea-sized amount three times a week fornow and will drop to two times a week after that. The tube used to last me a year, not a month. I will be keeping a close eye on my blood numbers.

  • PoseyGirl
    PoseyGirl Member Posts: 298
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    Hi All,

    I'm really glad I found this thread. I'm in the same boat as you all - surprise, surprise. I'm 5 1/2 years out from dx, and the vaginal atrophy is setting in. Sex is painful. I have never found any lubricant that does any good whatsoever. I will admit I haven't done much vaginal moisturizing (I hate dripping all day).

    I went to see a gynaecologist again and he prescribed DHEA suppositories. Since I'm in Canada, Intrarosa isn't going to be released until January 2022. He gave me a compounded product. He told me that the main side effect can be discharge, but not everyone has an issue with it (famous last words as I immediately concluded I'd be one of the ones with lots of it). I took it once and was gushing for hours the next day. It was awful. Globs and incessant from about noon into the next day when I was standing or walking). It wasn't a bit of discharge...it was a ton.

    I just cannot imagine doing this every single day. So now I'm already backing away from this - highly disappointing. He does seem willing to prescribe estradiol cream for where it hurts (down low, just inside the entrance to the vagina). But I'm concerned now about the varying opinions of oncologists about this. I really don't want to take risks with estrogen levels. Even the DHEA suppositories - which supposedly are completely local, within the cell - have not been well studied in women with BC.

    So now I'm wondering about the hyalo-gyn I've been seeing mentioned here. Has anyone had some decent results from that besides the stinging you mentioned upon insertion (when I put in the DHEA suppository, when I sat down and wiped the next day, I had burning. I get burning easily).

    This is incredibly frustrating. I'm not a sex fiend, but it's depressing to think that at 52 (and this has been going on for a few years), I can't have sex due to the pain. I'm not asking for a miracle...I'm asking for the pain to stop.


  • kbl
    kbl Member Posts: 2,739
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    I tried the Hyalo-GYN. It worked the first few times but not great, and I found it very expensive. I am using the estrodial, but it’s not working yet. I’m trying to use the least amount possible. I don’t use the syringe it came with, just a pea-sized amount

  • Rosie24
    Rosie24 Member Posts: 1,026
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    Posey, I’ve used all three things you mentioned, currently on nothing. Intrarosa—some improvement in hydrating tissue but not enough to help with sex. I agree it was drippy but mostly during the night for me. Hyalogyn—not bad, not helpful enough. I developed the stinging or burning upon use and quit. Estradiol—onc prescribed inserts. Great results, we got very close to easy sex. Downside was some breast tenderness and swelling, then actual pain during a spa massage when I was lying face/breasts down. Scared the heck out of me and I stopped the next day at about 2 months in. (I have some fear about estradiol because I was taking it orally before my diagnosis and blame the drug and myself for landing me with MBC, whether it’s really the case or not.). So I’m thinking about recycling either Intrarosa or Hyalogyn but haven’t yet. Good luck, I know you feel. Imiss the intimacy and so does DH.

  • swivel2020
    swivel2020 Member Posts: 7
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    what is the dosage on the Omegas?

    Also I found Gynatrof it has hyaluronic acid and Vitamin E and it’s about $ 25. I’m trying it.

  • jons_girl
    jons_girl Member Posts: 444
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    I have been experiencing post menopausal stuff too. I tried the AhYes product but wasn’t happy with it. It doesn’t come with a applicator either overall wasn’t happy with that product

    This product works very well for moisture. https://goodcleanlove.com/collections/restore-moisturizing-vaginal-gel
    it comes with a applicator for the gel. And it doesn’t seem to drip out. I haven’t had trouble with that. But I use it at night so it has time to absorb. Also Astroglide Organix is a good natural product for sex.

    I’m considering using estrogen cream tho too. My MO has been somewhat supportive of me using that and wrote rx.


  • kbl
    kbl Member Posts: 2,739
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    Rosie, I know I probably won’t ease your mind, but I was not on any hormones before cancer. I did take birth control when I was younger but shouldn’t have been because I have a blood clotting disorder that I didn’t know about back then. I have it everywhere in my bones and bone marrow from stem to stern and now in my stomach. I have no idea why. I’m not having issues yet with the estrodia, but I’ll post here if I do. The Hyalo-GYN is hyaluronic acid too.

  • jons_girl
    jons_girl Member Posts: 444
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    Thank you for sharing your experience kbl.I've worried about going on any estrogen cream too. My med onc stated there are studies it's safe to use. Supposedly doesn't go into the blood system. So I don't know what to think.


    My gma had breast cancer in her 60s then went off tamoxifen after 7 yrs (standard back in the 80s-90s I think) and begged her gyn to write rx for her hormone pills. She went on them. Cancer returned. That rocked my world. I loved my gmaso much. That's been etched in my brain. so I haven't gone on the cream. But I'm thinking about it.

  • kbl
    kbl Member Posts: 2,739
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    Jons_girl, I’m so sorry about your grandma. I totally understand. I can keep you posted on how I’m doing. I have been using it daily, about a pea-sized amount, for almost two weeks. After Sunday, I’m going to switch to twice a week. I definitely would not take a full plunger’s worth. The amount I’m using worked the first time around. I suspect I already had cancer then, since it’s been there since 2013. I will be having a lumbar/pelvis MRI in January, and that’s where they can see if there is more cancer or not.

  • jons_girl
    jons_girl Member Posts: 444
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    KBL: Thank you. I still miss her a lot. Thank you for this information. Yes please keep us updated. This is good info to know. Let us know how the MRI goes. Sending a hug to you.

  • kbl
    kbl Member Posts: 2,739
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    Thank you, Jons_girl. I'm hugging you right back. I do think about my grandson and when I'm gone. He's only a little over two years old, so when I go, he probably won't remember me. My father died when my daughter was just about to turn five, and she doesn't remember a whole lot. Sometimes I think it's better that way because then he won't hurt so much. I don't dwell on that, though, because I am enjoying him so much.

  • laughinggull
    laughinggull Member Posts: 512
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    KBL, my great-grandmother died when I was 6, and I remember her vividly and fondly; the love and the attention she poured on me have stayed with me all these years. Some of those memories are from I was like 3 years old. I remember her birthday gift at my third birthday. I even dream with her house now and then. I think of her when I do certain things with my kids. Genuine love lives forever. My guess is that he will remember. If he doesn't remember, that loving feeling will stay in his heart the rest of his life, even if he doesn't quite remember where it came from precisely.

  • kbl
    kbl Member Posts: 2,739
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    LaughingGull, this makes me so happy. I get the biggest kick out of my grandson. Whenever Mom brings him over and tries to stick around for a minute, he tells her repeatedly, “MOMMY, GOOOOO!!!" According to him, she interrupts our play time. He's done it to his dad as well. We are just too fun. My daughter says it's because she has rules. I have not had to really discipline him at all because we just play, play, play.

    I bought a hand casting kit for us to do for my daughter for Christmas. When I told my husband, he started crying. He hates the thought of me dying. I tell him he needs to know I feel good right now and we need to enjoy it. Poor guy. I feel really bad, but I think it will be a great memory.

    Thank you for sharing that you remember. I love that. I'll have to ask my daughter if she remembers anything about my dad. He used to take her to the dump because you could drive your truck right down into it and go over the hills. I'm pretty sure she remembers that. Lol


    Sorry to those on this thread for the deviation.

  • jons_girl
    jons_girl Member Posts: 444
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    KBL:

    I agree I think he will remember. Video is so important too. Kids love to watch family videos. And that keeps memories alive too in families.

    Sending hugs to everyone. Hope you all had a wonderful thanksgiving. Have a wonderful week

  • kbl
    kbl Member Posts: 2,739
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    Jons_girl, that makes me very happy. Back when I was a kid, there weren’t many cameras, so you’re right. Now it can be right in a phone. :)

    You have a wonderful week as well

  • jons_girl
    jons_girl Member Posts: 444
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    kbl: thank you

  • kbl
    kbl Member Posts: 2,739
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    So I wanted to report on something. I had had enough of trying the OTC products. Nothing was helping me. I had talked to my gynecologist because I had been on Estrace before my diagnosis, and it was awesome. I was told not to use it now because of my Stage IV diagnosis. After three years being metastatic and married to my husband for 37 years, I was tired of it being so painful. He had told me if I needed to stop, he would. I decided that I wanted quality over quantity and have gone back on estrodial. I do not take as much as the package says. I used a pea-sized amount for two weeks straight and then a pea-sized amount twice a week. The tube will probably last me a year instead of a month. It's working. It's still a little painful but not bad at all. I am no longer a desert. I have had bloodwork since starting. I have been on Xeloda since September 27, after switching off Ibrance. My tumor markers are coming down at a good rate. I believe Xeloda is working and the estrodial is not having a negative effect at this time. I let my oncologist know that I am using it. No secrets. It's my choice.

  • meistere
    meistere Member Posts: 5
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    I have been on an AI plus Lupron for over 5 years now. The vaginal dryness and atrophy started right away so I started complaining right away! The lack of hormones has taken a toll on my marriage (maybe I'll write a book one day!) I've had my oncologist AND my OB both tell me that Estring was safe. I have used it for 5 years and while it doesn't help with desire, it DOES keep everything from drying up. It's a ring that you insert (kind of like a Nuvaring if you're familiar with that) and change out every 3 months. It secretes a SMALL amount of estrogen to the area where it's needed. I had my blood levels of estrogen tested constantly through the first year on it and then every 6 months and it has not raised my estrogen levels AT ALL. Creams are a pain/messy to deal with, plus I would be concerned about getting estrogen some place it shouldn't be. I don't understand why oncologists don't push it more.

    On top of that, I get Testosterone pellets every 3 months. This helps with desire AND the dryness. It changed my life! I HATE that it's slightly surgical to get them in (it's the same as inserting Zoladex so why can't we figure it out Pharma world??) but it kind of replaces what the estrogen used to do. Both my OB and oncologist are on board with it. I cautiously tried and tested my blood at the peak for 2 cycles and it was zilch! The concern for some people is that your body will take the testosterone and convert it to estrogen - but your aromatase inhibitor should be blocking that conversion. You can tailor your dose to whatever makes you feel alive and sexy (but not too much or you'll try to start a fight club 🤣)

  • kbl
    kbl Member Posts: 2,739
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    I should say I have a blood clotting disorder as well and shouldn’t be taking estrogen at all, so I do like that I control how much. I agree the other stuff is messy, but I put the pea amount on my finger and just rub it on. No mess. I’m glad the estring and testosterone are helping. My issue was the dryness. I feel I am a little more in the mood since it doesn’t hurt so freaking bad

  • jons_girl
    jons_girl Member Posts: 444
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    Meiestere:

    The testosterone pellets…do you get those from a compound pharmacy? My gyn is going to prescribe testosterone cream. But pellets would be less mess. And I tried cream before but maybe dose was too low. Not sure.

    KBL: I think choice on everything is really important! My MO and onco gyn both have stated going on estrodial is safe. Studies are showing this now. My gyn (from a large university hospital) said there are quite a few gyn's prescribing i for patients who have had cancer. So I'm wondering if drs are looking at this differently now??

    I will be having regular blood draws and we already got a baseline blood draw recently. So will see how this goes. I'm a little nervous but my onco team seems supportive

  • kbl
    kbl Member Posts: 2,739
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    Jons_girl, that makes me feel better that doctors are finding it’s not bad. I don’t ever use a full dose and still have 3/4 of the tube left. Please keep me posted on the testosterone. No one has offered that to me.

  • Mexhay
    Mexhay Member Posts: 24
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    Hi all - I'm here because my onc just prescribed Estrace for me and I'm debating whether or not to use it. I'm 44 and not prepared to deal with SO MUCH DISCOMFORT, but I also want to do everything possible to be around for my lovely husband and our two young kids. So I guess my question for you, KBL - since you're both metastatic and currently using the cream - do you plan to have your estradiol levels checked regularly while you're using it? Have you had them checked since you went back on? You've given me a bit of courage to go ahead and try a very small amount to see if I can ward off the atrophy that seems so common.

  • kbl
    kbl Member Posts: 2,739
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    Mexhay, I have not had my levels checked. I’m really not worried about using it anymore. I’m more about quality of life at this point. I do keep an eye on my tumor markers, which are pretty accurate for me. They are still coming down since starting Xeloda. What I do and did is put a pea size amount every day for two weeks, and now twice a week a pea-sized amount. It should last a really long time that way. It does help.

  • kksmom3
    kksmom3 Member Posts: 101
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    It's the ONLY thing that has helped me. I can't even miss a day or I'm right back to misery. Thank God, this is an option.

  • laughinggull
    laughinggull Member Posts: 512
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    My oncologist and gynecologist (major cancer center both) both told me, very recently, that estrogen cream is not safe. Not proven to be safe. That there is evidence that it is absorbed in your system in small amounts, circulates in your body. That the short answer is that it is a risk, and it is a no. Now, if I want to take that risk, it is up to me, and they would prescribe it if I sign a disclaimer that I accept and understand that there is a risk. So I am puzzled by this very different story you ladies heard from your MOs (Jons_girl, meistere) that there is evidence that it is safe. Can you please share what that evidence is? Can someone point me to it? I would really appreciate some help with this.

    kksmom3, what is that thing that helped? Several remedies are mentioned in this page and you don't say.

  • kbl
    kbl Member Posts: 2,739
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    I have been using the Estrace for a few months. If it was circulating in my blood, I wouldn’t think my tumor markers would drop. I may be totally mistaken, but the one has dropped 225 points since September. It didn’t do that the whole time I was on Ibrance. I do understand the risk, but I am to the point of quality of life over quantity.

  • laughinggull
    laughinggull Member Posts: 512
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    Thank you KBL. I totally understand your comment about quality of life and accepting some risk. Awesome that your cancer markers are going down. I wish you prolonged stability with the best quality of life, until some better treatment comes around.

    What surprises me are the comments about MOs and OB-GYNs saying that is safe, that it has been proven safe, that there is new evidence showing that is safe, doctors are now prescribing it for breast cancer patients....that is not at all what I am hearing from my own doctors. What I am hearing from my doctors is this: there is no direct evidence that it causes the cancer to return, however there is evidence that a small amount of the estrogen in topical cream is absorbed into your system. So, as a general rule, for someone like me (strongly estrogen positive cancer) who is trying by all possible means to lower the level of estrogen (I removed my ovaries and I am taking an AI), the answer is a no. Unless I am willing to accept the risk that my cancer can return as a result of using this cream. And that would be an unknown amount of risk, probably small, but not really quantifiable.

  • lillyishere
    lillyishere Member Posts: 773
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    In my case, I am strong estrogen positive and my MO from a large cancer center told me it is safe to use estrogen cream while GYN from a small clinic told me not to use it because letrozole will kill it anyway. I guess there is no guideline and each doctor inteprets his/her own way.

  • Mexhay
    Mexhay Member Posts: 24
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    LilyIsHere - the comment from your small clinic's gyn is what gives me a bit of courage to try it. My University of Chicago onc said there's not enough understanding of how much of the estrogen in the cream is absorbed beyond the vaginal tissue into blood stream. But for whatever would go into the system, I've been curious if the AI would help 'neutralize' it. My onc went ahead and prescribed it for me without me pushing her to do so. I have a follow up conversation scheduled with her to see if/how often we can test estradiol levels after starting.