I WANT MY MOJO BACK!
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Hi all. Just back from meeting with my doctor, who is the head of an accredited breast cancer center in my area. She says there is no evidence that use of topical estrogen creams increases risk, but also no solid evidence that it is harmless. Meanwhile, doctors do know it is absorbed by the body. So in her opinion, since my ER + score is 95 percent, and I've only been on Tamoxifen since January, it is no estrogen cream for me. She did add that for other women she has been ok with some estrogen cream "every once in awhile" if non-hormonal creams/lubricants aren't cutting it, even tho her MOs are more conservative. Her recommendation was that I start with Replens. Thoughts?
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I tried replens and still use it- but I also suffered from some vaginal atrophy-did alot of pelvic floor therapy and try to stay on top of it... I just use replens to keep myself lubricated, but I did not find it enough lubrication for intercourse. I think it is a good place to start- see how you do.
good luck
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Thank you!
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Georgia1
I think I'm going to be in the same situation as you, same % er+. As I understand it, the Tamoxifen blocks the receptors then using the hormone cream wouldn't even work anyways? I wonder if there is a way to test how much hormone from the cream is getting into the body and whether it's going systemic? Today was my first meeting with the MO and she didn't say anything to me about stopping the Estrace. If there's no evidence topical estrogen increases the risk then I wonder if the doctors are going over board with restricting topicals? I'm new to this stuff, only thinking about it since my app't today.
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BTW, another lube that is good is Uber Lube, you can get in at amazon. Highly recommend it. It doesn't stain, isn't messy at all and i've also used is on my inner thighs when wearing a dress with no tights/hose
I hate it when they rub together in the summer.....
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Georgia1, I like that your doctor admits to not knowing if estrogen is good or bad. That's right, they don't. Why do testing on something so cheap where making big bucks is not an option. My problem with Replens is that it contains glycerin. That encourages yeast for me. Some people can use it and not have a problem with yeast. I need to have something with an acid once in a while to balance pH.
The idea of topical estrogen "once in a while" is not going to work. When I was first dx with vaginal atrophy, I used Vagifem for four months before noticing a change. It needs to be used consistently over time to work.
My new gyn had a few suggestions. Something called Wet Platinum Premium Lube which she says she also uses on her skin. I haven't looked it up yet. I make a distinction between moisturizers and lubricants. I want moisturizers. I'll check it out, though. She also gave me info on RepHresh Pro-B Probiotic capsules. I've heard of these before. I don't usually like oral supplements because my stomach reacts badly to everything. I will check these out, too. I take oral probiotics for my GI system so why not. The info she gave me on RepHresh showed $27.99 for 30 capsules. No price info on the lube.
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Someone in the Ibrance thread just posted this hilariously funny and useful article.
https://www.curetoday.com/publications/cure/2009/fall2009/prince-and-the-gun-oil
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Yes, very funny and useful article
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loved that! I needed a chuckle. and good info.
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I use the Wet Platinum for lube, not sticky, doesn’t dry up. Too much can make it too slick. Luckily my gyn and MO are on the same page so I use Estrace cream a couple of times a week. I do not know if I could be having sex without pain without it. I was 98% ER+. And I moisturize daily with coconut oil. But I want to continue a fairly active sex life for many more years
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Prince and the gun oil is absolutely hilarious, I have tears streaming down my face from laughing...thanks for sharing!!
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Has anyone tried Hyalo Gyn? My MO suggested it when I told her I was somewhat uncomfortable during sex. She said she would prescribe Vagifem as well but I told her I’d like to try other things first so she suggested Hyalo Gyn. It’s a bit pricey at $25 for a 30 day supply, it would definetly be worth it if it works though.
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TWills, - I have been using HyaloGyn for months and find it to be very good. I posted about it a few times (maybe on another board?) , since it was suggested by my onc for the same reasons. It is used every 3 days, and I use coconut oil on the other days.
My previous onc was ok with my using vagifem, which was also expensive, in addition to being risky for bc patients. After using it for years, I gave up because it wasnt helping much at all. I'm staying with HyaloGyn and coconut oil.
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Thanks AnotherNYCGirl:)
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one thing i do not see in this long, great list is a vaginal probiotic. it was prescribed to me by my ob/gyn in france and it has made a huge difference. i highly recommend it.
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What's in the probiotic, Stephanie? What is the product called? OTC or prescription? You could ask the mods to add it to the list at the top.
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Shetland, my MO suggested a vaginal probiotic called RepHresh with
- Ingredients : L. rhamnosus GR-1, L. reuteri RC-14, Dextrose Anhydrate, Gelatin, Potato Starch, Microcrystalline Cellulose, Magnesium Stearate, Titanium Dioxide and contains milk
I ordered some from Amazon. $20.49 for 30 capsules. Yes, it is oral. I don't understand how something oral works in your vagina but I'm gonna try it.I also ordered some suppositories by Femallay (also Amazon). I got the plain flavor but they come in other flavors like peach, strawberry, vanilla and chocolate. Hmmmm.
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my probiotic is called gynophilus but it's a french product and it's not available here. according to the manufacturer, it combines probiotics naturally present in the vagina (Lactobacillus casei and rhamnosus) and prebiotics. it comes in gel caps that you insert directly into the vagina.
a more healthful vaginal ecosystem means more moisture and fewer UTIs.
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Stephanie, that is really interesting and sounds like a great idea.
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i am sorry i am recommending a product that is not available in this country, but i am sure there are equivalents. maybe ask your ob/gyns? here is some research on the vaginal microbiota:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26623...
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Stephanie, it is available through Amazon.
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Amazon is out of stock. eBay has a 2 pack (2 suppositories) for $39.99. Yikes.
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I found another one on eBay for $18.49 but did not investigate the shipping. There are several eBay offers of this product.
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I suspect you could use almost any good probiotic as a suppository? Thats what I started doing with buying supplements of coconut oil/vitamin e and using as suppositories. Huge cost savings. I think you could do the same with a probiotic (and if you used it with the vitamin e or coconut oiI would think it would get good coverage? I can't tell from the ingredients that there is anything special about the suppository version.
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I had 3 Mona Lisa treatments and it only helped me so, so. I have been using Prescription Compounded Estradiol Vaginal Suppositories for 14 days in a row, then 3 times a week with Estriol suppositories thereafter. I am also on daily Compounded Bioidentical Progesterone capsules. That seems to work better, although maybe getting the Mona Lisa first might have helped, hard to say.
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Thanks for the information about probiotics, Jaycee and Stephanie. I just had to use an antibiotic for bacterial vaginosis and was wondering if I should use probiotics next. That journal article was very helpful. It says probiotics augment the antibiotic treatment. The bottom line seems to be that restoring lactobacilli, in particular L. Rhamnosus and L reuteri, is important. Both oral and vaginal administration probably work. Also lowering pH is important. My gynecologist told me to use RepHresh after sex. The box for the one I bought says the gel maintains healthy pH, but it is full of parabens which I dont want. I wonder if there is a “home remedy” to use instead. I see that same company sells a RepHresh probiotic supplement that Jaycee mentions. The depletion of lactobacilli and the elevation of pH happens more after menopause and contributes to VB. Gee, do ya think cancer treatment plays a role here? I need to clarify with my gyn and also do some shopping at the health food store.
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The RepHresh gel also has glycerin. Not good. I just started taking the oral. We'll see.
After four months UTI free and in no pain, I have something causing burning, etc. BV, yeast or UTI? Symptoms pretty much the same for me but this doesn't seem like a UTI. I hate that we are on our own trying to figure out how much of what we should use. I've been using a vaginal moisturizer every night since mid Dec. Too much moisture? Encouraging yeast, BV? I have no idea. And my gyn, who I will call tomorrow and go to soon, will not know either. Back to experimenting. I'm adding two new products to the big moisturizer spreadsheet, Femallay and Hyalogyn. Right now it includes ingredients which I want but makes it cumbersome. Still trying to get it in a form I can post.
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Just started Hyalogyn last week, so far it has been helpful. I would only consider myself mildly uncomfortable before I started using it though. No infections or anything like that just slightly dryer than before BC treatments.
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shetland pony, i am glad the article was helpful. my own data is of course entirely anecdotal, but i've had no infections, urinary, vaginal, or otherwise, since using the probiotic, and it's been much more effective at restoring moisture than hyaluronic acid gels.
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I have also just started using hyalagyn, thanks to the recommendation in this thread. It’s definately helping with moisture already. I also had 4 Mona Lisa treatments. Here is the kicker. After three treatments I was doing great, and on Xeloda. I switched treatments to Afinitor and Faslodex and it starts hurting again. So I go back to my gyn for a touch up treatment, which she rexommmends yearly anyway, but it didn’t help. It actually kept getting worse. So I think its the meds. During the the time on x i did much better in this arena. Now, not so much. Damned anti hormonals.
Sunset
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