Vaginal Atrophy solution that is working for me!
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Runner70, you are definitely not alone. I've been frustrated since a pelvic PT basically told me that for me all products except estrogen would be useless, and was dead set that estrogen was safe for me. She seemed surprised that I wouldn't embrace it. I was surprised that she still thought that after I explained how this cancer works. I broke down and used it out of desperation, but then had recurrence. Now on exemestane I'm quite wary of doing anything to raise levels. On tamoxifen, at least, there was the possibility of increasing estrogen being blocked at the receptor level. I don't think aromatase inhibitors work the same way. I think the idea is that the meds bring your estrogen down to nil.
So I suffer. I mean, is she right that nothing else will touch it? I use VMagic occasionally but it doesn't really helped. I've tried other things that didn't really help. Coconut oil was ok but ruined my underwear. I'm prone to rashing so I don't want to use pantyliners every day.
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I use a vaginal lubricant every other night. My MO and GYN said no to any estrogen, so this is the best that I can do. Wish there were other options.
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There is another option. Testosterone cream. It may raise estrogen but mine hasn't gone up much at all. Some testosterone does converts to estrogen. It has helped my dryness a lot. I'm pretty much back to normal as far as moisture goes I think.
So that would be a option for those who don't want to go on estrogen. I don't use very much. Just use it three times a wk now.
I am going to talk to my gyn tho about estrogen cream too. I get a compounded testosterone cream. And I thought they could combine them. Just adding a little estrogen.
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Runr70 - I hadn't had sex in 6 years (husband was sicker than I was when I was diagnosed and died shortly thereafter). Having been in menopause pre-cancer I wasn't really thinking about vaginal atrophy. Met a man this spring and am having sex again. Initially painful but I found a caring man who did as much research as I had been doing. I talked to my doctor as well. PCP suggested estrogen cream if the oncologist was OK with it. My oncologist was OK but I did a little more looking around and have been using Replens vaginal moisturizer twice a week. Between Replens and frequent intercourse, the vagina is coming back and sex is pain free. Possibly the hormone free moisturizer will provide some relief for you.
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Popping in to say I was just on a webinar with Dr. Gupta by Living Beyond Breast Cancer, and someone asked a question about sex. He said the old way of thinking was to not use an estrogen cream, but they are starting to realize that it is okay to use. I’ve been using estrodiol for at least four months, and it has not had any effect on my tumor markers or progression. I just wanted to let anyone who’s on the fence about using estrodiol know to talk with your doctor and gynecologist. It has helped me. I chose to use it because I felt it was more about quality of life than quantity.
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kbl:
Thanks for letting us know how things are going for you. I’ve added estrogen cream too. And I will have blood drawn in Oct. but I believe the data out there. My gyn is confident all will be fine with the studies showing this is ok for breast cancer survivors. My medical oncologist is ok with me using this cream too. I’m sure there are more than two of us here on this. I’m anxious to see how this goes. I think I’ve been on it less than a month
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jons_girl, please keep me posted on your bloodwork. I hope it’s helping you. It definitely is helping me. I sometimes forget to use it. I try two times per week to make sure I use some.
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kbl:
I will definitely post here after my blood work results. The cream I have comes in a real cool container where the applicator fits tightly on top of the container. Then I turn the container for “4 clicks”. Studies show according to my gyn that I can use this dose three times a week safely. She told me she doesn’t want me on any higher of a dose. So three times I week I switched to. I had been using it twice a week. Will see how I do on this dose. I wasn’t noticing a ton of difference but I’ve only been using it a few wks now I think. October will be three months I think. So I’m hoping to definitely notice a difference by then. I’m slightly noticing a difference overall I think. It defines helps tho vaginally. No doubt about that!
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I believe I used it every day for the first two weeks and then went to two times per week. I’ve never seen the container you’re talking about. Interesting.
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This is what the container looks like and applicator then attaches to top and you turn the bottom however many 'clicks' the doctor prescribes. It is a cool container and is way better than anything I have seen as far as disbursement of the cream. It is called Versacream (estrodiol). I think this container is a 60 or 90 day supply as I recall.
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That’s really cool. Mine just comes in a tube. I will look for that next time.
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That looks like a Topi Click Perl! Those are cool because you know for sure how much you are getting, where a tube is less specific. I had compounded estrogen in that once. Didn't use the applicator since I was using a very small amount.
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Thank you, gb2115.
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I use premarin cream. I use my fingers as I find the applicator irritates the entrance. I now use the premarin about once a week. The improvement has been amazing. I could barely insert one finger without pain. I could not have a pap smear without lidocaine, and two months of dilator usage (I had three separate attempts at the pap smear)
After just 3 months of sporadic use of the premarin (I was scared to use it as prescribed- 3 times a week - because I was so highly estrogen positive) I was able to tolerate a pap smear, and I can get 2 fingers inserted comfortably. I can even feel the difference inside.
My oncologist and gynecologist have no issues with me using it once I remain taking Letrozole.
It's a game changer.
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gb2115: Yes I think you must be right. The top/lid looks like a shell so sounds like pearl. lol. Yes it works great! You get exact amount you are supposed to use, whatever the medical provider states, the number of 'clicks'. It is pretty cool!
trinigirl50: That is good the premarin cream is helping you. I just wanted to share something with you that my gyn PA shared with me. She said premarin comes from pregnant horses urine. She told me I should not use it. The cream I use comes from a compound pharmacy. It is from wild yam as the source it comes from. So it is plant based estrogen. I just wanted to share that in case you didn't know there were other options for estrogen cream.
Hope you all are having a wonderful week! It is beautiful weather out here in the PNW!
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Thank you all for sharing this info. I am trying to navigate what to do next because I am losing my mind! I try to discuss with my MO, but she is young, having babies, and says "just take Replens and vitamin E". When I am able to use the Replens regularly it helps, but I can tell being on Letrozole (almost a year now) how it has worsened over time. I am trying to gather my ducks with info/articles/studies, but it is still so confusing.
I don't have a gyn, I have an internist as my PCP. I am considering seeing a Urogynecologist, but not sure if I need to go that far. Just trying to figure out how I get some of the estroidal cream, is it prescribed? I've see the OTC ones, but am all wary of certain ingredients.
I need to do something though, I don't want it to get worse, I would rather reverse the course of action sooner than later.
Does anyone have any experience or info, can dilators be covered by insurance also? They are so expensive.
Thanks for the info!
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btw stars
You could ask your pcp to a referral to gyn. I use Estrace cream and my MO orders it, it is a prescription. I use it very sparingly though like once every other month
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I'm still using estrodial cream made at a compounding pharmacy. It's made out of natural wild yam sources. So far all is well. It does take away dryness. Works for me. My MO and gyn support this decision. I use it three times per week. My estrogen levels are ok.just had my blood work done recently.
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jons_girl, I’m so glad it’s helping. I am still taking estrodial from the pharmacy. I don’t have my hormone levels checked, but since starting it and being on Xeloda and Faslodex, my tumor markers keep coming down. In September of last year, my 27-29 was 374. It’s now at 94. That’s quite the drop, and they’re still dropping monthly. I’m so glad I made the decision for quality.
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kbl that is great all is going well for you too with the estrodial! That is so great the tumor markers are dropping alot! I hope you have a wonderful weekend!
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Thank you, jons_girl. You too.
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hi ladies. I've been reading this thread with interest. Last several pages so far. I had a hysterectomy at 27 due to endometriosis. Used testosterone cream. 1 month. Made me stink, pimply back, greasy skin and hairy face. Never again.
Breast cancer 2008. Survived letrezole the first time. Again in 2017. Now on faslodex. I've dried up like a raisin. But apparently atrophy isn't the only problem. Also lichens sclerosus. The papercut feeling is characteristic. Itching common.A steroid cream is in order.
As for the atrophy my gyn recommends hylauronic acid. Your body makes it and it's in face cream to minimize wrinkles. Makes your tissue plump up apparently. There's suppositories and some moisturizers that have it. I'm not totally convinced I'll be feeling better. Too soon. But they said. So hopeful.
Yes last resort is estradiol suppositories I think she said. Must take certain amount and timing. I wonder though if it matters without ovaries or uterus. Must sign for informed consent. Ugh.
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hi gailmary:
I used a natural product that had h acid in it. It worked sorta ok. But estrodial has worked so much better I think. I used testosterone cream for awhile too. I didn’t have much in the way of side affects but it just didn’t work as well for me. I’m testing my estrogen periodically to check my estrogen levels. I am post menopausal now. My estrogen levels seem fine after using it for 3 mo I believe now. My MO and gyn are both ok with this use as I’m sure you’ve read above. I’m not sure why some MO’s and gyn’s don’t support the use of estrodial and others do. My MO stated studies are showing it’s safe at certain levels. Everyone has to choose tho what’s right for them. I wish you the best. Have a wonderful week
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Hi gailmary - I also have lichen sclerosis, diagnosed after my BC diagnosis. I was using estrace after menopause, but breast surgeon said I couldn't use it any more due to triple positive diagnosis. I tried a hyaluronic acid product but it was uncomfortable for me. Hope it works for you. I use small amounts of the steroid cream and a vaginal lubricant other days. My GYN won't prescribe estrace, so this will have to do.
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jons_girl. I think perhaps some Dr's will and some won't is that they will for early stage breast cancer but they won't foe advanced. I've got advanced- Mets to the bone. First product I tried from Good Clean Love seemed to give me a UTI. The next, a supository, didn't. Doc said to see which ones work for me. Of course! With lichens sclerosus I will need each a moisturizer with hylauronic acid, a lubricant for sex and a steroidal cream.
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poseygirl, I'm like you -I like to check in here every once in awhile to see what's new. This vaginal atrophy is so awful. I am 51 and don't want any estrogen products but am going to look at the DHEA you mentioned. If anyone has any ideas please keep us informed.
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