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Vaginal Atrophy solution that is working for me!

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  • sharon0706
    sharon0706 Member Posts: 80
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    Hi LaughingGull.

    I might be repeating something that someone else has already said here. My oncologist says the same thing as yours about estrogen creams, but mine does feel comfortable prescribing me the Estring. It's a plastic (?) vaginal ring, not a cream. You stick it in and it stays there for three months, then you replace it. It helps with daily comfort but I still also use hyalo-gyn.

    My anatomy is shaped in such a way that although I can insert the ring, I cannot get it out by myself. I go to the gyn every three months and she takes it out for me. Small inconvenience for the improvement in comfort. Hope this is helpful.

  • laughinggull
    laughinggull Member Posts: 516
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    Thank you ladies, this is useful

  • kbl
    kbl Member Posts: 2,772
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    LaughingGull, I totally see where you’re coming from. I am Stage IV and have been for eight years. My time is limited as far as I know, I could have a year, could have many more. I just don’t know. I think my being Stage IV contributes to my quality vs quantity feelings. I’ve had pain from intercourse since my partial hysterectomy in 2012. I was done feeling the pain and am willing to risk it a little bit. I’m also not supposed to be on estrogen because I have a blood clotting disorder. I use such a minute amount, pea-sized, two times a week. I can only hope it won’t create more issues

  • lillyishere
    lillyishere Member Posts: 773
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    KBL, ask your GYN if you can use lidocaine cream. I was suggested by pelvic PT but I haven't checked with GYN yet. It should numb the area so you won't feel pain.

  • kbl
    kbl Member Posts: 2,772
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    LillyIsHere, I had gone to the emergency room for an allergic reaction to some wipes I had used. The itching was intense. They gave me lidocaine. One day months later I tried it. During sex it was awesome. I had no pain. Right after I had intense burning. That was that

  • laughinggull
    laughinggull Member Posts: 516
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    Hi y'all

    Thanks again KBL for sharing your perspective. I bet the pea amount you are using is safe. I root for you and for all other Stage IV patients, and fervently hope for more and more breakthrough treatments that tame this odious cancer beast, either little by little or at once. In my case, the MO told me to ask myself the question: if I use the estrogen cream, and my cancer comes back (even if it's impossible to attribute the recurrence to the estrogen cream), am I going to second-guess myself, regret the decision, and wish I hadn't done it? The honest answer is yes, I think I would. If my cancer returns, I want to know I did everything in my power to prevent it. So I chicken out -no estrogen cream for me.

    Thanks Sharon0706. My MO also will prescribe it -as long as I ask myself these questions and sign a paper saying that I understand the risk. My problem is not the prescription, I actually have the estrogen cream at home, which I bought abroad on a trip, where I was you didnt need a prescription. My problem is the recurrence panic and guilt. For now fear and guilt win.

    Have a great weekend, everyone,

    LaughingGull

  • lillyishere
    lillyishere Member Posts: 773
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    KBL, thank you for sharing your experience. It is good to know that lidocaine is only a temporary solution with lots of burning after. Oh boy! I don't know how to keep a healthy marriage and deal with cancer treatments.

    LaughingGull, I wonder if estrogen cream is like antibiotic oinment that it works locally and doesn't go in bloodstream.


  • kbl
    kbl Member Posts: 2,772
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    LaughingGull, I would definitely think just like you if I wasn’t Stage IV. I totally understand. It did take me three years of pain to finally say I was going on. I also feel a little guilty, but I am going ahead. I want you to know I would think exactly like you otherwise.

    LillyIsHere, it may not affect you like that. I’d give it a try to see.

  • mikamika
    mikamika Member Posts: 242
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    In my former cancer center ladies who were using estrogen cream got their hormonal levels tested on a regular basis. So you can easily know how this cream affects you (or not).

    It's also interesting, we all have different amount of the fat tissue (which produces estrogen) but take same dosage of the pills. In this case MOs do not care that someone gets not enough of estrogen blockers.

  • ddfair
    ddfair Member Posts: 65
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    KBL

    You mention having had a "partial hysterectomy". I'm confused. Exactly what was removed? What was left behind? Did the surgeon only remove part of your uterus? Why would they not remove all of the uterus and the cervix?

  • jons_girl
    jons_girl Member Posts: 444
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    Sorry I've been MIA for a bit. Will respond to some of the other posts another time. But this was a interesting article I thought.

    https://www.acog.org/news/news-releases/2016/02/acog-supports-the-use-of-estrogen-for-breast-cancer-survivors

    interesting clinical trial. Not exactly sure I understand why they are using estradiol I. This study. But interehttps://clinicaltrials.gov/ct2/show/NCT03941730

    This is a study with estring and estrogen levels. It's completed but I would think results might be on the internet somewhere. https://www.clinicaltrials.gov/ct2/show/NCT01923298

    Also a article here on thissite:https://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk

    Another good article. I didn’t read it all. But good info in it I think. My gyn doesn’t think Premarin in any form should be used….and it is listed in the article I wouldn’t use that But there are other options it gives in this article https://consultqd.clevelandclinic.org/genitourinary-syndrome-of-menopause-in-breast-cancer-survivors/amp/

    I’m not a scholar. But I trust my gyn. She is a scholar. We will regularly test my blood levels. And I’m being cautious about all this. But nothing is working for my libido. Testosterone is supposed to help with that

  • kbl
    kbl Member Posts: 2,772
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    ddfair, my partial left my ovaries. I did not have them removed.

    Jons_girl, thank you for the articles. It makes me feel a little better about my decision.

  • laughinggull
    laughinggull Member Posts: 516
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    Thanks a lot jon_girl!

    Looking at all those links now

  • kksmom3
    kksmom3 Member Posts: 101
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    LaughingGull, sorry, I wasn't at all clear, I meant that I was using the estradiol cream, my 3 doctors have told me it was ok. I hurt even just gently wiping after using the bathroom, I had gotten so bad that I felt like I was being stabbed with knives down there, I had to do something. I wish there was a clear answer, but, it seems as in all things cancer, there is usually never a clear answer, is there?

  • jons_girl
    jons_girl Member Posts: 444
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    laughing gull and kbl:

    You're welcome! I will hopefully get more time to post today. Life has been pretty busy on the farm.

    One more thing tho I wanted to mention. My gyn told me something I wanted to share. She said essentially that drs give pills to men to give them erections. And there are all these women with sexual problems with no options. She told me there is a failed depression drug that in the trials of the drug for depression I guess women were saying well it's not working for depression but it's working for…apparently libido? So she said I think the drug was called Allie? Or ally? Something like that. So thought I'd mention that. She said it is fda approved I think too? I'm not a dr. But this is what she told me. So thought I'd share that too.

  • sharon0706
    sharon0706 Member Posts: 80
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    that med is https://addyi.com/

    My pcp said I couldn’t try it because I already have low blood pressure. I’m going to try the vyleesi injections instead. (!

  • jons_girl
    jons_girl Member Posts: 444
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    Sharon

    thanks for sharing the website for addi and the info on the other med! I'd never heard of vylessi. That’s cool! However women who are already post menopausal cannot use that drug according to the website. https://www.vyleesi.com/?gclid=EAIaIQobChMIyruVp47I9QIVExLnCh1gJAlfEAAYASAAEgJkJvD_BwE
    That might be why my gyn didn’t tell me about it. This drug won’t help many of us here because many of us are post menopausal. That's great tho for premenopausal women! Thanks for sharing this info!!

  • sharon0706
    sharon0706 Member Posts: 80
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    I’m in menopause but my doctor suggested trying it anyway. Maybe I’ll get a little placebo effect

  • jons_girl
    jons_girl Member Posts: 444
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    interesting! Thanks for letting us know! keep us posted on what you think of that med

    I'm probably just going with the estrodial and testosterone route…my gyn and MO supportme as long as I keep getting blood work. So I'm great with trying that option!

  • cardplayer
    cardplayer Member Posts: 2,051
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    I was using estrace when I was diagnosed. My breast surgeon said to immediately discontinue it since I was triple positive. When I started having vaginal dryness issues, I discussed with my GYN. She also said no to estrace and suggested we find alternatives. I wish there were more studies that provided one way or another.

  • homemom
    homemom Member Posts: 830
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    My just told me to use Replense ---- pfffft.

  • kbl
    kbl Member Posts: 2,772
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    That did nothing for me.

  • jons_girl
    jons_girl Member Posts: 444
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    nsbrown thank you for sharing that. Did you use it in pill or cream form?

    There are studies….see what I posted quite a few posts back above. That's just a bit of info. My MO and my gyn are fine with me using it. Maybe it's because we will be very vigilant about blood testing. And maybe it's because my tumor was grade 1 stage 1 and very small? Could be factors like that as to why they are ok with me using only the cream.

    My MO and gyn would not be ok with me using any hormone internally in pill form. That's not good.

    Estrodial cream is being studied more too I believe as well as what they've already studied. But as in everything else in life, there will always be drs who don't agree.

  • Mexhay
    Mexhay Member Posts: 24
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    Just adding my oncologist and gyn's perspective (they work together at a large research hospital). They agree that I can use it and it shouldn't raise my estradiol levels. I requested blood draws to check for raised levels and they say it isn't necessary. I still haven't decided. So much conflicting information with stakes that seem so high. Jons_girl, thanks for the links - I'll read through them now.

  • kbl
    kbl Member Posts: 2,772
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    Mexhay, I totally understand where you’re coming from. I am over eight years into my diagnosis and had used it before I knew. Then I stopped. I’m older and have had it longer, so I’m willing to try it now. I can keep everyone posted on how I’m doing.

  • jons_girl
    jons_girl Member Posts: 444
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    mexhay you're welcome. I'm not a scholar. But that is some links I found. I'm sure probably there are more links.

    Yeah if I go on hormones I will be checking my blood quite a bit throughout the year. I can always stop using the cream if I want to.

    Thanks for sharing your experience tookbl. Yes definitely keep us posted. I know I would appreciate that. I think I plan to start the creams rxtoo.

  • homemom
    homemom Member Posts: 830
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    Has anyone tried Kindra? I've seen it advertised lately. It is hormone free.

  • jons_girl
    jons_girl Member Posts: 444
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    I’ve never heard of that.

  • gb2115
    gb2115 Member Posts: 553
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    In response to a previous comment, topical antibiotic cream does indeed get into the blood and circulate. I have Clindamycin gel and it mentions it in the package insert. Topical administration is less, but it's not a zero. I don't believe that vaginal topical agents don't absorb. I was prescribed vaginal valium for severe pelvic tension, being told it wouldn't absorb, and I turned into an absolute zombie for a few days until I stopped using it. Now, does circulating estradiol increases from topical estrogen make or break cancer recurrence prevention? I think that's what they don't know. But to say it doesn't absorb at all, I don't believe that for a second.

  • jons_girl
    jons_girl Member Posts: 444
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    gb: yes some of it may absorb. I think there is still a lot of clinical studies going on in this realm. I might be wrong. But that's one reason my dr and I are testing my blood often. If levels rise we will watch it. I can always stop taking it.

    I'm not sure if I said it didn't absorb but I do agree that I'm sure there is some that absorbs. I'm not a expert on this subject at all. Just trusting my gyn who is a specialized gyn who sees only post cancer pts for the most part.

    But this is a individual decision in regards to this as others on this thread have stated. Just like we all choose what our path forward is regarding treatment for cancer and choosing what's best for each one of us.

    Hope everyone has had a wonderful day.