I WANT MY MOJO BACK!
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thanks, Mona! My OB/GYN nixxed them for me as she said they are still estrogen. I don't think she is all that educated on it, to tell you the truth. I may get me some.
Good news was: things were not terrible. Still "seaworthy" and able to use (ho ho). She of course, wanted to use the estrace (said exactly the same thing and absorption at the Vagifem tab) but that in the way that my onc wanted me to use it (tiniest amount possible, on pinky, 2x weekly) it would not make even a bit of difference to my comfort level.
So, rock and a hard place. However: she felt with assiduous use of Kegels, retrying Replens (if I get another UTI, then never again) and lots of moisture, I do not need dilator therapy, and things should work. (gulp) never know unless you try, I guess.
I did get the E suppositories, which she was in favor of, and will use them. She also talked about the e string, said that overall, systemically, it releases less estrogen into the bloodstream than either estrace or vagifem does, but that she, personally, would like to see more trials on post bc women before prescribing it. She will not prescribe it until I am in need and so far, she says it's not that bad. Hope she is right!!
I will check back in and post how things are (ahem) progressing. I am not sticking anything estrogen back into me at the moment, anyway for now.
xox
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oops. ps. for those sensitive to replens....she also told me that if you are irritated, that replens will sting. As you heal up, less so.
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oops: more info: Vagifem (new lo dose of 10mcg) is better for less systemic than the estrace cream. Estrace cream packs a whallopp initially, but the Vagifem is a tiny bit released and she also offered that you could skip a day, or cut the tablets in half.
Duh, never thought of that one!
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Annie, the ones I used are the same as what Mona has, the Bezwecken estriol suppositories. I ordered them online, so no prescription. It was my own decision to use them. I also rub some on my face. Was hoping to see some improvement in the wrinkles and sagging, but so far no difference. Very moisturizing though!
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I also only use the Bezwecken E3 suppositories twice weekly for now. I will soon be cutting back to once per week.
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Hi guys, very intrigued (despite drs. no nos) on these pellets....what did yours oncs say re: them?
My OB/GYN ws so negative I am going to drop the literature off to onc and see what he's got for input. I'm liking the sound of these.
Do either of you get your estradiol levels tested to see how you did/are doing on them for absorbtion?
Have a sunny saturday, ladies! I'm off to see daughter who just made phit beta kappa!!! Will recheck with you all on Sunday before I float away in "very Private Moisture" and marinate.
xoxo
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I learn so much on these threads! The estriol sounds promising and interesting. From what I hear from friends, some women just can't live without this extra assistance. QOL is really important, I believe that so strongly.
Regarding parabens, I believe you all are right: you can't micromanage EVERYTHING. But, there are good alternatives to paraben-based lubes. And that's why I chose to switch. Facial cleansers get washed off. Lubes (which I use, ahem, liberally) stay on the skin. Cosmeticsdatabase (which I learned here!!!) has been great.
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Annie, I'm due to see both my Onc and my Gyn in May, so haven't discussed it with either of them yet. I imagine one or both of them might say, well estriol hasn't been FDA approved, therefore not recommended. It is used in other countries, such as Japan and parts of Europe. From everything I've read about it, I'm convinced that it's safer than some of the things that are FDA approved, such as Premarin.
I recently had my estradiol level tested, but that is measuring the primary ovarian hormone, which my body is no longer making much of. My level was below 32, which is considered postmenopausal. Don't think estriol vaginal pellets would increase that estrogen levels much, as estriol is considered the weakest form of estrogen. Will ask my doctors if estriol level, or maybe just overall estrogen level, can be tested as I'm curious to know.
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rose, I agree with you. I think there is far too much stock in the FDA...it has approved some stuff that has turned out to be bad for us too!
I think that doctors may be prevented from "officially" sanctioning something, but if you ask for it, they may say OK. Same thing happened with my ooph. I wanted it, I asked for it, and they said OK. But I did have to ask.
I guess if I get those pellets, I will be testing my estradiol levels. (that is the test that you want, as your overall estrogen test may be too low, if you are on arimidex to show up). But estradiol levels are h yper sensitive and can be gotten at Quest labs. My OB/GYN said any kind of estrogen, plant, chemical, whatever, you should obtain a baseline of what your level is, (they love single digits for bc ladies) then, test after using the product over several weeks for a period of several months. If you levels go up, that is to be expected, but they should decline again. You do not mention, are you on an aromatase inhibitor? If you are, then that should keep you in the safe zone. If you are not, and on any kind of estrogen therapy, then it is something to know about and monitor.
thanks for all the good info! These things sound great, will be asking my onc re: them.
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I'm on tamoxifen, Onc wants to switch me soon to an AI. But I would rather not take the AIs.
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I don't blame you. They are do able, but not fun. Tamoxifen works very well, glad you are on that!
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Hi everyone....jumping over to this thread now!! I see some familiar names from other forums - just shows how we all are following similar paths.
My mojo is sort of half-way back, but I am struggling with pain. I have been using Replens which has helped with dryness, but sex is still painful. Any advice?
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Marjie: My gyn told me the hormonal changes can cause not only dryness, but can actually make the vaginal walls so thin that they tear when you try to have intercourse. He and I were discussing remedies when I was diagnosed with OVCA, so we kind of put that on the back burner. But check with your gyn. There are things you can try that help other issues besides dryness.
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Marje:
It's true, but it doesn't always have to happen. Moisturize on a daily basis, and use tons of lubricant also (astro glide makes a paraben and glycerine free one now). Your OB/GYN can let you know how things stand and if you would risk tearing.
I've been on arimidex 1 1/2 years, am 1 year out from hysterect/ooph and so far, have not been found to be tearable. Get it checked out and see and good luck.
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marjie how long on replens? I know sex was really painful before I started using it. It took some time for it to get better. at least a month
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well, i tried the replens twice while it did add moisture, it also seems to burn and give me a rash on the vulva area, so i don't think i'll be doing that again
However , while i was hunting around the net for a lube for chemically sensitive gals, i came across an all natural one called Sylk. Made in New Zealand , from an extract from the kiwi plant. If any of the reviews can be believed, might be just the thing. Not available in stores in Canada, maybe in the States? But i did find a couple online retailers, so I ordered one up yesterday. fingers crossed. sounds like you can maybe use it as a daily moisturizer as well.
http://www.sylkonline.com/ US website
www.sylk.co.uk/testimonials -> UK site with more testimonials.
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Chili, there is a product that I got from Hyster Sisters site, called Very Private Initimate moisturizer. Paraben free, PH /OB GYN approved, safe even after surgical procedures.
Hasn't hurt me, like the Replens did, and according to the OB/GYN, I should be much worse off than I am. Perhaps it is this stuff. Worth a shot. Amazon sells it.
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hi all:
A very good buddy of mine, whom I met on these boards and whose intelligence I highly respect, just let me know that her OB/GYN has told her that her ER level of 21 was AOK; she said anything lower than 20 and the body begins to scream.
Mine is screaming
. However, my onc wants single digits for me. Anyone else have an opinion or numbers?Thanks ladies, have a lovely night.
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anniealso, My Onc. is like yours he wants mine as low as he can get it as close to 0 as he can get it.. I am having it tested by my GP to see where it is now. My Onc. will not run the test for me, not sure why.
I agree my body is screaming as well.
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kira, it is because the standard estrogen tests won't show low numbers.
You have to go to a Quest lab, and get an "allay" estradiol test. It is a special request. My onc can't do mine either, as I'm too low to even register, which is just where they want us to be.
There is a new article that just came out today, citing estrogen as protective for BC, however!! It does not state that they used any ER+ post BC patients in it, so is kind of useless for us.
but it may make things better going forward, as perhaps they will now investigate this for us.
I'm using tons of OTC stuff, I hope your quest goes well.
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thanks for the tip anniealso, i'll check it out.
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In the category of 'if it isn't one thing, it's another'; I will not be thinking MOJO for awhile because I have a femoral hernia (in the groin area) that will need repair (ie surgery). Anyone have any good recipes which actually call for coconut oil?!?
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No recipes but I am so sorry that this happened to you! Do you know what caused it?
Sending great healing thoughts and wishes for an easy surgery and a complete recovery!
Can't get a good gal down for long!
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Ruth, sorry about the hernia..... hopefully the surgery and recovery won't be too bad and you'll be thinking mojo again before you know it
So, i got brave and finally jumped the hubby last night,for the first time in just over a year.
It was nice to get busy, but the phrase " a thousand knives" kept popping into my head.. ouch! Now i really know what is ment by painful intercourse
It's a start anyway.
The sylk arrived, so we gave it a try.... on the plus side, it did not seem to irritate or burn, on the minus side, it got sticky fairly quickly. I might still be able to use it as a daily moisturiser though... perhaps over time it will help the dryness issue...
Might try the plain old olive oil next time for getttn busy and see how that goes.
I tried looking for the Very Intimate Moisture that anniealso mentioned, however, amazon will not ship it to canada. I did find another site, drugs. com i think it was, that seemed like they would ship to canada, but it was $15 for the product and 30$ for the shipping fees.. couldn't bring myself to do it.
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You can buy something called 'Slippery Stuff' on Amazon. It isn't very expensive and it doesn't get sticky.
No, I don't know how I got the hernia. Just 'lucky' I guess. I can't get in to see a surgeon for a consult until the 18th. From what I've been reading and from talking to people; it is a pretty easy surgery with a quick recovery (like being back to your 'normal' schedule in about two weeks). So we shall see.....
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Ladies, my oncologist recommends "Creme de la Femme" for dryness and irritation. The NP told me you can order it on line and it's worth every penny. Hope this helps someone....
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Just checking in. My MOJO is official back!
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Yay Lago! I hope I can say mine will be back soon!!!!!!!!!
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Lago, a big old wahoooooooooooooooooooooooooooooooooo TO YOU!!!!
What is it that you attribute it to using, mostly? (pun intended, of course) but specifically, what made the most difference for you in terms of products? Estrogen replacement cream? Lubricants? e string?
Cute hubby? :0.
So happy for you, hon!!!!! Great to know this can work out for us and thanks for posting that!
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I'm using Replens and Astroglide.
Hubby not cute… he's hot and handsome. Works out everyday so he's good looking with a great body. He wasn't the issue
If you can get the hurt to stop and your regularity up you will find it comes back. It takes some time so don't give up.
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