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Vaginal Atrophy solution that is working for me!

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  • Rosie24
    Rosie24 Member Posts: 1,026
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    Hi all, I’m new to this thread and glad to be able to learn from your experiences. I’ve tried one prescription product, Intrarosa and one otc product, Hyalogyn. Some improvement but nowhere near tolerable sex. And the Hyalogyn started giving me a burning sensation so I stopped using it. I just saw my MO today and she recommended Vagifem for a few months to see how it goes. The Letrozole (with Ibrance) is working great on my cancer but this side effect is a doozy. MO said eventually I should see a gyno to assess the extent of atrophy. I am hopeful for this new med but also realistic since it’s been a few years of desert dryness already

  • kksmom3
    kksmom3 Member Posts: 101
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    I do the exact same thing. It seems to be keeping the worst of it at bay for me as well.

  • sharon0706
    sharon0706 Member Posts: 80
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    Hi Rosie. I am right here with you in the Sahara. The only way I was able to have sex was after using hyalo-gyn internally every day for a couple of weeks, combined with lidocaine (prescribed by gyn) around the vaginal opening, combined with uberlube. Even with I'd say my pain was 4/10.

    Maybe you've already pursued something like this, but after some research I learned that the hospital where I had chemo has a vulvar clinic. My appointment (that I booked literally months ago) is next week. I can't imagine exactly what they will tell me but I am hopeful. Have you already pursued something like that?

    p.s. I also have an e-string. Not helpful for sex but helpful for everyday comfort.

  • Rosie24
    Rosie24 Member Posts: 1,026
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    Hi Sharon,

    I haven’t pursued anything more than a couple of products from my MO. I received the generic for Vagifem but now I’m afraid to use it due to the estrogen content and “serious warning” if using it while on Letrozole. Too much googling, ugh. I’m stage 4 but responding very well to treatment and don’t want to mess that up with adding something questionableinto the mix. I think I may go back to the HyaloGyn first and try it daily for a few weeks. I’ll be interested to hear what your appointment with the clinic brings!

  • asimetrica
    asimetrica Member Posts: 1
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    Hi! I'm glad I found this thread! Thank you :) I've been on the breast cancer thing since 2016 when I was 34. I started new medication this year because of a recurrence. All these years I've been dealing with vaginal pain during intercourse, dryness, tightness, etc. This year it's gotten worse, so now I know I have to face the issue with more consistency and I'm thinking about trying vaginal dilators... I heard about them from a PT that was treating me for lymphedema some years ago but I didn't purchase them then. Has anyone tried them? Sending love and patience to everyone!

  • mikamika
    mikamika Member Posts: 242
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    Yes, I tried vaginal dilators and they really made a difference!

    I am not a medical professional, but I feel like all women should be recommended to start using them immediately with Tamoxifen or Al. Unfortunately, I started using them only recently, when some damage was already done. But still, I am glad that I bought them!

  • sharon0706
    sharon0706 Member Posts: 80
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    hello. Has anyone done comparison trials of hyalogyn vs Neueve and, if so would be willing to report back

  • kbl
    kbl Member Posts: 2,729
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    I tried NeuEve. I got a bladder infection, which I'm prone to, and stopped after using it two times. I just got Hyalo-Gyn this past week. I've applied it two times so far. I have to say I like it as of right now. It doesn't drip like some do. I have the tube and syringes

  • sharon0706
    sharon0706 Member Posts: 80
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    Thanks for the information. I am experimenting with HyaloGyn right now. It sometimes stings for a second or two but that feeling goes away quickly. I like it better than Replens because HyaloGyn is a clear gel. (Replens is a white cream. I didn't like the way it felt or looked when the Replens dripped out the next day.) I am using HyaloGyn mostly daily but I'm not having sex enough yet to know if it's going to decrease pain. I am trying to get an appointment for pelvic floor therapy but everyone around me is booking out into November!

  • kbl
    kbl Member Posts: 2,729
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    Yes, it stings for a few seconds for me too. I will report back after I’ve tried fir a month.

    It’s crazy how far out things are booking. I’m sorry to hear that.

  • emily_mh
    emily_mh Member Posts: 53
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    Hi Sharon, I'd love to know how your appointment went if you don't mind sharing.


    Also, anyone try Vagisan?

  • sharon0706
    sharon0706 Member Posts: 80
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    Hi Emily. The gyn was really thorough with her exam and very knowledgeable. She gave me a diagnosis of vulvodynia and I am going to start pelvic floor PT in the fall. Really long wait lists for pelvic floor PT in my zip code.

    Here's some of what I learned in the appointment:

    - We don't know why certain women are affected, but up to 5-15% of women will suffer from vulvar pain at some point in their life. This is a chronic pain condition and has no malignant potential, but often can be improved.

    - There are many medical options for treatment to help achieve improvement and in some women complete relief.

    - There is topical treatment as well as oral treatment. Gabapentin (titrating up to max of 4600 mg total daily), SSRIs, and tricyclic anti-depressants in the future as well as topical lidocaine.

    - Nortriptyline and Duloxetine are also options.

    - Hypertonic pelvic floor muscles are often a common finding in patients with vulvar pain, but often difficult to determine which came first: abnormal pelvic floor muscles vs vulvar pain. Regardless, this often results in contraction of the pelvic floor muscles, particularly those surrounding the vaginal introitus as a result of actual or anticipated pain. Pelvic floor therapy is a crucial component of treatment.

    - Treatment involves desensitization techniques in order to have control over muscle tonicity. The standard of care in treatment involves pelvic floor therapy. Often this involves incorporation of dilator therapy or pelvic wands to release pelvic floor knots or trigger points.

    - Recommended vulvar care: No vulvar soap. Use of fragrance-free dye-free detergent and body wash and not to be used on vulva or vagina. No panty liners. Underwear free at night time. And no over-the-counter products (she said the hyalogyn I've been using nightly is okay).

    Hope this is somewhat helpful. The idea of doing yet another ongoing activity to help my body heal is exhausting, but I know people who have been helped by pelvic floor PT, and I feel like I have to figure this out for my marriage, so I will add it to my to-do list after summer is over.

    Would love to hear how this matches or doesn't match what others have learned from their gyns.

  • emily_mh
    emily_mh Member Posts: 53
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    Sharon,

    Thank you so much for the detailed explanation. I think I will try Hyalogen and start looking for appointments. I ordered some Vagisan but am afraid to try it without talking to my doctor.

    thank you again!

    Emily


  • sharon0706
    sharon0706 Member Posts: 80
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    Good luck Emily!

    Would anyone who has had success with pelvic floor PT be willing to describe what the treatment included and exactly how it helped you? And what your advice is for someone about to start?

    Thanks!
  • mikamika
    mikamika Member Posts: 242
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    There are several issues that may be addressed to the pelvic therapist. I had treatment for prolapse (early stage). In your case treatment may be different.

  • jinx27
    jinx27 Member Posts: 119
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    Just dipping in here to see how everyone is...

    KBL, Im happy something is working for you!

    MikaMika you are so right, women should be educated about atrophy as soon as they take Tam or AI's.

  • kbl
    kbl Member Posts: 2,729
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    I went to the GYN last week. She just learned of my extensive cancer history. She said she would still prescribe Estrace if I wanted it, but I’m too hesitant. I would feel like I couldn’t tell my onc.

  • trishyla
    trishyla Member Posts: 698
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    Have your gynecologist talk to your oncologist, KBL. She's the best one to explain the current research on the use of Estrace in breast cancer patients.


  • kbl
    kbl Member Posts: 2,729
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    I’m too chicken to start it back up, but my onc definitely had said no in the beginning. Thankfully, I am feeling relief from the Hyalo-Gyn. It’s the first thing that’s helped besides the Estrace. Illimae told me about it.

  • swivel2020
    swivel2020 Member Posts: 7
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    I’m glad to find this discussion. I have been having problems with vaginal discharge w/o odor or itchingfor several months now. My gynecologist finally diagnosed me with extreme vaginal atrophy and prescribed an estrogen cream. My oncologist called me up and said absolutely not on the estrogen cream because I take Arimidex to prevent estrogen absorption. In addition to those issues I also have a bladder leakage issue which requires that I wear a bladder incontinence pad 24 seven. I’ve had swabs taken I’ve been treated for yeast which I didn’t have I’ve been treated for STD which I didn’t have and recently I’ve been given another vaginal cream to insert for vaginal bacteria.None of these treatments have helped me whatsoever. I am not sexually active right now but I’m sure it would be painful if I were.

    So I’m wondering if anyone out there has had this combination of issues that I have and particularly the vaginal discharge. Since my oncologist doesn’t want me to use the estrogen cream I’m going to try some things that are I’ve seen on this forum particularly the Hyalogyn and Omega3 and Omega 7.

  • cardplayer
    cardplayer Member Posts: 2,051
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    I don’t have any discharge, just the atrophy. I’ve been using Luvena Vaginal Lubricant for several months. It’s paraffin free and seems to work on my vaginal dryness. There are other OTC products on the market that might be able to help with your dryness.

  • kbl
    kbl Member Posts: 2,729
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    Well, I’ve tried a few vaginal lubricants, and I have finally gone ahead and ordered the estrodial vaginal cream. I was on.it many years ago before I was diagnosed. The tube lasted me a whole year. I would just put a pea-sized amount at the opening about twice a week. It was just what I needed. I just can’t do the other stuff when I know how good this works. I’m scared, but I want to enjoy sex and not have it feel like a thousand cuts. I’m emotional because I want to do it for me, but I’m scared as well. I feel a little selfish. I have to say I’m always caring about everyone else, but this is something I want to do for me. Oy, it’s hard.

  • swivel2020
    swivel2020 Member Posts: 7
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    thank you for your reply. My ONC had a fit when I told him I have the estradiol cream. He finally relented a bit and said it was up to me to make an informed decision but offered no alternative.

    I’m going to try an otc cream and Omega vitamins as suggested in this thread. I’m primarily wanting to know about the discharge if any one has that too.

  • kbl
    kbl Member Posts: 2,729
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    Swivel, I'm sure my onc won't be happy, but I think I can use it very sparingly. I used it when I didn't even know I was full of cancer already. I will keep an eye on my tumor markers and MRI scan of my lumbar in January to see how it's doing.

    I’m sorry, I can’t help with the discharge question.

  • sharon0706
    sharon0706 Member Posts: 80
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    Hi all. I just started pelvic floor PT last week and even though it is a very strange experience, the therapist is kind and gentle and extremely experienced. I have hope that it's going to be a game-changer for my sex life. (Right now I'm unable to have penetrative sex without pain, even though I have an e-string and use Hyalo-Gyn daily.)

    Two other resources: As much as I love to hate Facebook, there's a private group on there called Sex After Breast Cancer that, like this website, makes me feel less alone.

    Also wanted to share this helpful link, which has more information than I ever got from my very seasoned female oncologist (who I really like but did not prepare me for the vaginal atrophy stuff).



    Improving Your Vulvovaginal Health

    https://www.mskcc.org/cancer-care/patient-educatio...

  • sbelizabeth
    sbelizabeth Member Posts: 955
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    I've been urged by both my gyn AND my urologist to use vaginal estrogen cream, if only to prevent the frequent UTI's that occur because my lady bits think they're a hundred years old. I have staunchly resisted because I'm convinced my breast cancer was caused by the hormone replacement patches I used to ease the symptoms of menopause. I will do whatever it takes to prevent the cancer monster from returning, or to keep any rogue cancer cells in my bones or brain or liver solidly asleep. But it's no fun. I would love to give vaginal estrogen a try, but I don't want to look back with regrets, like I did with the hormone patches.

    Still, I told my gyn and urologist that I'd ask my onc about it. Today was my yearly check-in. He said "NO."

    But everyone's different. For those of us who make a different decision, that's absolutely ok.

  • lillyishere
    lillyishere Member Posts: 770
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    Sharon, I am going for pelvic floor PT starting next week at BWH. I have no idea what to expect. How is the first visit? Do you feel is helping you?

  • sharon0706
    sharon0706 Member Posts: 80
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    Hi! Here's what I posted in the Sex After Breast Cancer facebook group after my first appointment:

    -------

    Yesterday I had my first appointment with a pelvic floor therapist (who is also trained as a sex therapist) and for the first time I feel hope that someday I might be able to have sex without pain.

    She was lovely. She took a careful history. I was nervous and didn't know what to expect. After we talked for a while, she asked how I felt about being examined. I told her I was anxious and felt nervous about her looking at my parts. I told her I was worried that I was going to look weird and smell bad. I asked her to remind me of how many vaginas she's examined, and that she has probably seen it all. She kindheartedly assured me that she sees hundreds of vaginas every year and has for years and years.

    So I let her examine me and it was one of the best decisions I've made. She helped narrow down exactly which areas felt the most pain, and pushed and pressed on areas to see if anything helped (which is did actually). I even got comfortable enough to use the mirror that she offered to watch what she was doing. I won't say that it ever felt normal, but I will tell you that by the end of the hour I was just chatting with this woman who was between my legs teaching me things about my body that NO ONE has ever taught me before. Did I mention that I am 50?

    I'm curious if those of you who have done pelvic floor PT learned what I learned:

    • Being constipated can contribute to pain during sex. She recommended Miralax and discouraged me from using the sennakot I take every night.
    • She said that I should continue using Hylao-gyn and apply it to the entrance of the vagina in addition to inserting it internally. She also said that hyalo-gyn is safe.
    • She said the coconut oil I've been using externally isn't helpful in the same way as a hyaluronic acid product. She said that cocoa butter/beeswax products I asked her about are not helpful for the kind of pain I've been experiencing. They are a barrier but they do not plump up the skin.
    • She told me which dilators to order and explained that using the dilators is basically exposure therapy for the vagina. She asked me to ask my husband to measure the circumference of his erect penis so that we know what my goal is!

    Would love to hear other people's pelvic floor PT experiences.

    --------

    I had my second appointment today. She is trying to help me learn how to relax the muscles down there. This is harder than I thought! She says it can take four sessions for women to learn how to do this. She was trying to get me to relax and even said, "If you fart, you win!" I tried to explain that I've spent my whole life trying not to fart in front of others, and it was going to take more than two appointments to get comfortable enough to basically fart in her face. She laughed and said, "I get fart at all the time!"

  • laughinggull
    laughinggull Member Posts: 512
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    sharon0706 thanks for sharing, your post really cracked me up.

    I went to the ob-gyn to discuss estradiol cream. She suggested a plan of attack, consisting on vaginal dilators and daily hyalo-gyn for a couple of months, and then another visit where we see where we are and maybe she will prescribe the estradiol cream in the lowest possible dosage.

    I ordered the Intimate Rose dilators, which my ob-gyn recommended. Do you mind sharing which dilators you discussed with your PT therapist?

  • sharon0706
    sharon0706 Member Posts: 80
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    The pelvic floor therapist recommended that same brand to me. I can't remember if I already shared here that my oncologist prescribed the e-string to me. (I can get it in but I can't get it, so I have to see the gyn every three months.) My onc won't prescribe any creams for me. It's so confusing because everyone's oncologists seem to have different feelings about what's safe. I look forward to hearing about your successes!