I WANT MY MOJO BACK!
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My cream is in a tube also, - with an applicator that is marked, I think, by grams? I am to use 1/4 of the applicator, which I think is 1 gram? Seems to me that too much gets stuck in the applicator considering it is such a small amount to begin with!
For years already I only wash with Cetaphil because all other soaps were so irritating, but Cetaphil is not.
There's so much we once took for granted , right? Now it's coconut oil, estrodial, special soaps, other moisturizers for the face, products to darken my hair and others to whiten my teeth, etc etc etc!! SHEESH!
(All is worth it, as long as we STAY HEALTHY!! )
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I am so so so happy to find this thread!!! I haven't tried a bunch of 'stuff' to help, but I am now using the Estring. It is a prescription. It has made a huge difference in my comfort level. I still need Astro most of the time. Sure wish we could buy it in a gallon jug for a bulk price. One of the things I like about the Estring is that it is 2mg of estradoil delivered over 3 months. The ring can be be removed & reinserted. Other methods left me feeling like anything being inserted was really a sharp piece of glass.
NancyB 🎶0 -
Rocket
I have vaginal atrophy, no intercourse with my husband for 4 years (well one excruciatingly painful attempt 2 years ago), since double mastectomy. Here is what I have done:
1. Do NOT use any type of soap or anything other than water on inner genital area. Just let water run over it. You can soap pubic hair and outer area and anal area but with very mild soap.
2. Use an emollient (E45) cream around inner labia and vaginal opening after every shower.
3. Use Vit E suppositories every other evening. You need pantiliners or you will mess up your underwear. You can get small ones at first, insert into vagina, use you finger (lubricate it first). Use finger to gently widen vagina (only as much as comfortable.) Push up as far as you can go without pain.
3. Limit hot tub baths.
4. Sleep without underwear whenever you arent using the suppositories.
5. Buy dilators. Use with topical Lidocaine at entrance of vagina (you can also insert some in vagina) gynaecologist should be able to prescribe a tube with top that allows for insertion. Use lots of KY Jelly on the dilators. Start with the smallest. Work your way up.
6. Get the smallest vibrator and use that alternately with the dilators. Lots of KY Jelly.
It took me three tries to have a pap smear (fully Lidocained and numb), I was so tight. My only child was via C section.
After 6 months of the above routine, I was able to have a pap smear (still using Lidocaine) but she was able to open the thingamajig and feel around as well. My cervix is completely flat against my uterus whatever that means and she cant see my ovaries. BUT... I can now insert larger Vit E suppositories, I am comfortable inserting my finger and moving around stretching my vaginal walls without pain or Lidocaine.
So I am going to attempt intercourse this coming week. I am going to use the Lidocaine at the vaginal opening, with a highly lubricated condom for my husband. This is just to see if we can have intercourse, I will try this a few times over two weeks until I am sufficiently stretched. Then I will try it without the Lidocaine and condom.
I will let you know the outcome.
I was almost ready to just give up but I think that it is worth all the effort for my husband. He has been completely supportive and I am also getting tired of giving BJs and handjobs.
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BTW It took at least three weeks of using an emollient and lubricant before I could get the first Vit E suppository inserted. I am talking about an entire year before I got to this point. But I kept at it.
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Wow you have really been dedicated! Thank you for sharing so openly. It does help me to feel less alone in this. I will talk to my new gynecologist when I see her in February. Until then, I will attempt to implement some of the things you have suggested.
I absolutely dread getting exams. PAINFUL! I will ask for an RX for the lidocaine gel and get some vitamin e capsules. I tried using coconut oil, but it would melt everywhere before I could get it inserted. I also couldn't figure out how to make the stuff in to suppositories as it kept melting before I could get it shaped into a suppository to freeze it.
Thank you so much for your suggestions, and the timeline. It helps put things in perspective.
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I have the same trouble and am considering the estrogen cream... Oh and I just saw this article (I haven’t read it yet though)
https://www.nytimes.com/2019/09/19/well/treating-t...
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Rocket, Im right there with you, Its been a real struggle, its been several years for us to . Hubby is not ok with all of this but is understanding or so he says.( Your mind does wonder at times )
Its bad enough that we go through this crap and all the anxiety issues that it brings on and to top it off not being able to have that closeness just sucks .I will take it one step further and say the Desire to perform in the bedroom is a real struggle. Its like what the hell has happened to me . I seriously cant not even stand to be touched mostly because Im so dam hot all the time I feel like I'm on fire . Im just a sweaty wet mess most of the time.
Every Dr I go to tells me that I need to talk to another Dr, who just passes me on. My Ogn will not even discuss, tells me its my Gyn job, My GYN tells me that I need to check with Ong cause of limitation of what can be used. I live in a smaller community so experts in the field are not just around the corner .
I to have terrible pain in arms, legs, knees, hands, constiant bladder infections. Im so dry down there I feel likes its going to turn to dust and sometimes the smell is foul. I have started using coconut oil whch has helped a lot but not to the point where I feel like I want to try and have sex. Im actually scared as hell to even try ...........Whats a girl to do ????
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Jack Bear - I too use Estring, and Astroglide, both approved by my MO. But I've had a bleeding cervix requiring an internal ultrasound, then cryotherapy on the cervix, back in June. I didn't heal well from that. Touch up cervix w silver nitrate. Still bleeding. I haven't had intercourse since June! I had to use a vaginal gel to help heal, ended up positive for Strep group B then on penicillin - last GYN visit she said to use gel for 5 more days. If the stars are aligned, and I have no discharge of any kind, I'm hoping to get to use the Astroglide very soon. LOL If I don't laugh, I'd cry.
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Ladies,
Again I thank you for the very frank discussion on this topic. Once in a while my husband will make a comment about the loss of our once, many years ago, satisfying sex life. I feel terrible when he says things because I feel so guilty. He doesn’t mean to make me feel that way. He really has been very kind and understanding. I guess it makes me think that he doesn’t realize how much I miss it too. I have no breasts, and now I’m dysfunctional sexually. I too suffer from chronic pain. Yes I am thankful to be alive, truly I am, but the consequences of having had chemo, radiation multiple surgeries and anastrozole for nearly 10 years has had a toll on my body. I am so thankful for your honesty on this topic. I felt so alone like I was the only cancer survivor who had not had sex with her husband in years!
I did start using a tiny amount of Proctosol, a prescription hemorrhoid cream, on my delicate parts (not in the vagina) but around the vulva especially. Prior to using it, I was bleeding from just wiping gently with toilet paper. My gyn’s recommendation was to use Desitin! That was just a nasty mess, and it didn’t work.
We are both afraid to use the vaginal estrogen, but I will again discuss the risks with my new gyn in February. There are days that I would like to smear estrogen cream everywhere, but I am a big chicken when it comes to cancer. I just never want to go down that road again. I am afraid that if I used it, and experienced a cancer recurrence, that I would always wonder if it had to do with using the cream. I would really struggle with that.
My husband and I are high school sweethearts and have been married for 40 years. I’d like to have many more with him. I know that I am blessed to be able to say that.
Cancer sucks!!! Can’t the medical community do better? Scientists put men on the moon with slide rules, is this too much to ask for a better life for women suffering with this issue?????
Sorry for my rant! Just needed to say that! Thanks for listening
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Rocket, I know just how you feel.
I tell my husband that I miss 'the old us' as much as he does. This board is the only place that anyone understands how extensive the 'cancer journey' reaches into our lives.
I did have reconstruction, but it's not me, my breasts don't look or feel anything like my real ones did and in some ways limit my movements. Add to that the constant gyn issues, - and oh, one more thing, - my hair is just thin wisps now, so i still need a wig, hat, or hair piece.
As you said, we can make so many scientific and technical advances, why cant medicine hurry up, too?!
I am whining and complaining, but i am thankful every day for being here to be with my family, and to be able to enjoy my first grandchild.
How I wish for solutions for cancer, and so many other diseases for our sake, but even more so, for our children and our children's children!
Thanks, from me, too, for listening.
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Rocket, you might also consider seeing a Naturopath to get Presciption Compounded Estriol Suppository , which is considered a "safer" form of Vaginal Estrogen. Estradiol is the strongest form of Estrogen , and the kind that is contained in Vagifem and other Vaginal Estrogen Suppositories and Creams.
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Estriol, unlike estrone, does not convert to estradiol, binds very weakly to estrogen receptors, and is rapidly excreted. Theoretically, this makes estriol safer than estradiol or estrone.36 Research has also shown that estriol selectively activates estrogen receptor-beta, which has an antiproliferative effect.37 Even large oral doses of estriol have not resulted in increased serum levels of estradiol, estrone, or their sulfated forms.
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Thank you for the suggestions Ladies! I did go get more of the Replens vaginal moisturizer. I am in the middle of another cancer scare. I have been experiencing pain over my left carotid artery to palpation. I haven’t been sick or had any cuts or sores etc. to cause lymph node swelling, so my PCP’s office sent me to the ER tonight. They did lab work and it was normal, but the CT Scan showed an enlarged lymph node. Not what I wanted to hear. They told me to follow up with my oncologist on Monday. Again not what I wanted to hear. I will likely need a biopsy. I am so tired of always fearing Mets. I pray it is just a swollen lymph node without any scary diagnosis. So my sexual issues are on the back burner for the moment. I so appreciate you all
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Rocket, - I can imagine the thoughts you are having, - but take a deep breath and remember that the drs are very, very cautious. In most cases it turns out to be nothing of concern, - and I look forward to your update of that news!
Hugs to you from NYC
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Hi Ladies,
Doctor’s office called. They do not in anyway feel this is cancerous based on the CT scan from the Emergency Department, so they don't even need me to come in. Said it is likely a virus. I find that a bit odd as I have no symptoms.
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Rocket - that's such good news!! Thanks for letting us know!
(Virus's present themselves in all sorts of ways, - i bet some R&R will help get rid of it! )
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I am breathing a huge sigh of relief! Working on keeping the sparks flying too in the romance department. I do miss intercourse, but we are making it work regardless. I am blessed to have a wonderful husband of 40 years
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Since I've had BC, my naturopath refuses to prescribe me estradiol. She said that she can't in good conscience do that. Instead she prescribes an estriol suppository in a cocoa butter base.
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This has been the most challenging long term issue for me. Vaginal dryness, painful intercourse, and urinary track flare ups (it never cultures as an infection). What a way to destroy intimacy! I had pretty much given up but I tried some new things and finally seeing improvement.
Been using Intrarosa vaginal suppositories - this is not estrogen, apparently it's a precursor to estrogen so it is ok for those who are hormone positive . It's expensive and a bit messy, but I've noticed a change.
And I learned about the relationship of tight pelvic muscles to the pain & urinary problems, so I started pelvic floor physical therapy. This is a new level of weird, having a therapist stretch me with the dilators, but I wish I had gotten the courage to do it years ago. It has definitely helped break the pain cycle. I understand more about the source of my pain and how to stop it. And I have more confidence that I can have pain-free sex. If you are thinking about PT, do try. I also recommend Slippery Stuff as a lubricant, and my doc also prescribed lidocaine gel for one persistent pain spot. Stay hopeful!0 -
Rocket, it has been a while since I stopped by this thread.
Forgive if I offend but.... quit talking to your doctors. Quit asking for their permission or guidance or blessing. They are giving you MEDICAL advice, which is their job. But this situation of a murdered sex life is so far beyond medical advice. Doctors are not trained to treat your life. They are trained to treat your current most critical problem. Cancer. But the trickle down effect of that, well, they'll bat those out of the air one at a time, if they can. If they can't, well, sucks to be you. All they know is that hormones are bad, bad, bad for cancer patients. And you are thinking (as we all do!) that the last thing you want is any more of that damn cancer so you're not willing to risk anything that might make it rear its ugly head again.
I think this is wrong thinking. I think this is not seeing the forest for the trees. I think you need to sit down with yourself and have a talk. Some plain, no nonsense talk.
It sounds like this. Look, Rocket, did you used to like having sex? Yes. Are you pissed off that cancer ripped it out of your hands? Yes. How many cancer victims are there in the house? Three: you, your husband and your sex life. Now that we've established that, let's move on to other facts. What was your risk of death BEFORE you were diagnosed with cancer? 100%. What is your risk of death AFTER cancer? Still that same 100%. Would it piss you off to AVOID hormones, to 'hopefully' avoid any more cancer, only to die in a car crash? Because your risk of dying in a car crash are just the same as they always were. Or a heart attack. Or choking on a peanut. Or being sucked into an escalator. You take a risk every single day when you leave your house. But somehow the only risk that looms large is the risk of returning cancer and to avoid this vague risk, you have most definitely sacrificed sex. I am NOT saying this in a blaming way! Like you I freak the hell out over every little bump and cough and ache and I HATE what a spastic moron I have become because of the fear that cancer injected into me. I had a cough and insisted on a chest x-ray. I had a weird mamm report and refused to wait the suggested 6 months. No, I want it in 4 months! But when my vagina began to act and feel like a California Raisin, I shot some estrogen up that puppy and said, to hell with living like a 90 year old survivor on a desert island!
If you take a tube of estrogen cream, smear it on yourself head to toe every single day, then run in traffic and fly kites in thunder storms, yeah, you're asking for trouble. But that's not what you're doing. That is not what anyone suggests that you do. I AM suggesting that you need to find a middle ground. Look at the big picture. If you feel enough, I have lived in this misery long enough, then, Rocket, this is your vagina, your sex life, your decision and your doctor can give you his professional advice but at the end of the day he does not go home with you to solve your problems.
I would suggest you get some hormone cream. The real stuff. Not the fake kind. Start small. Squeeze a teeny blob, half the size of a pea, on your finger and smear it around. Don't bother with the applicator. Don't bother trying to shoot it up there. Just smoosh it around your pee flaps and hoohoo (these are the technical terms). Do not do it again for 2 weeks. Then repeat. Half a pea sized blob, smoosh it all over the place and that's it. Do this for 2 months. That's 4 miniscule applications of a teensy amount of estrogen that was truly topical and not even vaginal. Can your doctor definitely point to that and say, oh my god you have given yourself metastatic cancer? No he cannot! If he does he's full of shit! He may say something like "studies indicate blah, blah, blah.. But indicate is a whole hell of a lot different than studies positively conclude beyond the shadow of a doubt that a teeny bit of estrogen cream on your vag will give you killer cancer. Uh..no.
In those two months watch for improvement, and it may only be incremental. It may be, gee, I had less peeing pain. Or less fried bum skin. Or, hey, I feel a little more comfortable when I walk and skydive. (all women with slightly improved vaginas take up skydiving, fact). It might take you a long time to notice that things are a bit better. If they are, if they are a bit better, if you think you might venture in with an applicator, again with the half a pea sized blob (or use your finger). Just a TEENY amount. Once every two weeks. Not more.
It is typical to think your vag is a lost cause and you are going to pour the elixir of life on her (or him, let's not be sexist, your vagina may identify as male, who am I to say?) but do not go in with guns ablazin. That is NOT a slow and reasonable approach. No. Slow. Tiny amounts. You have spent years feeling miserable. I think you have the time to take a few months to improve slowly and, most importantly, with minimal risk because you used minimal product over maximum time. But, I truly believe it has to be the real deal hormone to work.
For me, one application of pea sized Premarin every 6 months has kept my vagina from moving to Arizona. Now..the mental part of wanting sex, that's a whole other ballgame. Jason Momoa could walk in, rip his shirt off and give me a smouldering stare and I'd ask him to move because he was blocking the tv and oh, take out the garbage too, would you? Desire has flown the coop. Thank you tamoxifen. I have leg cramps, aching joints, nuclear hot flashes and skin that is aging faster than normal not to mention weight gain that ain't pretty. But despite these typical side effects my vagina still mostly works. Twice a year I use a maintenance dose of Premarin. If you can feel less afraid, and god knows your fear is based in reality...but is that the same as definite probability? If you can grit your teeth and say, for the next 6 months I will try this crazy plan and if in that time there is not improvement at all I will toss it all in the garbage and call it done, you might see some improvement. I think this mitigates your risk of cancer, I think this is a fair and reasonable approach. Not too over the top. But a bid to reclaim a sex life that matters to you.
I am sorry for yakking on like this. But I read your posts and feel that you have been treated. but not helped. Not the same thing. Grant yourself 6 months to try. You can always quit. And your exposure will have been minimal.
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runor As always, your way with words and thoughts is totally amazing. You always put it all together with eloquence and candor! Somehow, you throw your lasso up in the air and corral all the random issues that my conscious and subconscious feel, but have not quite gotten words for, so thank you!!!
RE: Dry as Arizona
My oncologist says that his reading of all research shows the absorption of Estradiol (=estrace cream) to be local, not systemic, and for me to go ahead and use Estradiol cream with applicator to measure the dosage, prescribed by my OBGYN. It costs A LOT. I smear some of the measured dosage on perineum, and around vulva and urethra and inside vagina. (See Runor's very specific hilarious terminology for those parts above, ha ha!) It helps me not lose drops of urine when I sneeze, and has reversed vaginal atrophy. I use the prescribed amount, measured in the applicator, 3x/week. As for the shrinkage of vaginal tissue: Once my vaginal tissue was 'plumper' and doing okay because I'd been using the Estradiol cream for awhile, I bought a magic Sex Rabbit vibrator online. I worked with it gently, over weeks, until I could manage penetration. Now, vaginal intercourse is pretty functional, thanks to these interventions + other lubrication, including coconut oil.
Using Estradiol cream makes my genital area tissue better, in all ways. Without using estradiol, that tissue is so fragile that toilet paper abrades it.
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I was dx with atrophic vaginitis when I was about 45. I've struggled with it ever since. I'm 70. BC at 65 with all the drugs didn't help. I've been working on my MO to let me use some kind of topical estrogen. I finally convinced her. Unfortunately, she is leaving the practice I go to. I'm tired of hearing that topical estrogen ends up in the bloodstream. I will be doing a clinical trial with one subject, me. This MO, who will not be my MO in the future, has agreed to do a blood test for estrogen. The blood will be drawn when I have my port accessed for a Pet scan on Jan 3. She has ordered it, her nurse says. I will then get some topical estrogen soon. I am looking at a product called ReNewed. It is made by a company that makes the Bezwecken products. It contains 6.5 mg of DHEA. DHEA turns into estrogen in the body. It is in Intrarosa. My MO is not happy at all about DHEA. But I have worked on her for years and she finally broke down. Where is the research, I asked her. There is none. I looked. I will use some amount of ReNewed and then have my blood tested for estrogen again. I'd like to have it tested every month for a few, maybe six, months. I'm doing it before I start to get a baseline. That is my plan. But we all know about plans. My insurance may not want to pay for estrogen blood tests. The only blood test I've seen is for estradiol. What about the other two estrogens, estriol and estrone? The ReNewed product is in a cocoa butter base, like Corky's. My MO was not happy about that either. Causes yeast, she says. I guess we will see. (My new MO may not go along this this plan either but he will need to explain why.)
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runor, - you are on target and so funny!
It stinks that we are having this awful side effect from our treatments, but it does help to commiserate , and especially to laugh. Thank you !
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Jaycee, I look forward to your trial of one. Will you be publishing peer reviewed papers? I will be watching for these.
Out of curiosity I have fetched my Premarin box and will see what the ingredients are. Creme vaginale...wait, that's the French side. Each gram contains 0.625 mg of conjugated estrogens CSD. Made by Pfizer. I do not know what CSD means. There are some insertions instructions and in bold print DO NOT BOIL. Are people boiling their estrogen cream? Their vaginas? How oddly vague.
As HikingLady says. outer topical application on all the flappy bits keeps pee dribbles to a minimum. That is why my personal approach would be to first improve the outer areas for tissue strength and then, after a good while doing that with cream, THEN try with the applicator. Going in with an applicator right off the bat might lead to a miserable fail. There is always the chance that outer application will improve inner vagina without having to go to full on shots of cream up the hoohoo. I get the feeling (might be wrong) that ROcket is very scared about using anything at all that even suggests it might invite further cancer. We get that. We ALL get that! But in the meantime, she might be refusing potential help over a possibility that while possible, is not extremely likely. Most of our docs read the literature, make a pronouncement but do not help us gage how applicable lab work is to our miserable private bedroom life. (or living room, again, who am I to know where people have sex these days!?) It upsets me that Rocket's docs have not looked at her low onc score and her young age and her interest in sex and her distress at its loss and said, "Look, no doc is happy suggesting you use this stuff every day because this juice can be some bad shit all up in your junk like that. BUT... a small amount over a long time to see if it helps IS a reasonable and safe approach. It might take time to see improvement, you have to be patient and expect small gains. But if they are small, then you know that small amounts, infrequently, will indeed help you. And that is good news! That would be good to know. So here. Use a bit now and then and keep notes. See you in 6 months."
I guess we'll just have to see what Jaycee had to report. I'm all ears!
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OK, that box reading introduces some questions. Conjugated estrogens? (Is that like verbs?) There are three types of estrogen. Estrone (E1) Estrodial (E2) Estriol (E3) Is it a combo of all three? How many grams go in the applicator (a dose)? I used to use Vagifem. It has 10 mcg (micrograms?) of estrodiol. I wonder if there is a one to one correspondence of DHEA and any of the estrogens. 1 mg of DHEA equals 1 mg of (say) estrodial? I really don't know. I probably can't do a peer reviewed publication. There are just too many questions I can't answer. I'll just report back here to my real peers.
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I was Dx 02/2006. My oncologist has always permitted vaginal estrogen. Currently my gyn Rx and I’m using Imvexxy. It is relatively new but insurance covers it, but at the top tier copay. Use it every 2 for 2 weeks, then twice weekly.
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Jaycee. Maybe at one time there was a box insert with more info but it's long gone. The fine print says conjugated (yes, French and Spanish class!) equine estrogen. Equine. Horse pee. Pregnant mare urine. Thus the name Premarin. Now I'll have to Google CSD and see if I find anything.
Okay, I found "Estrace contains estradiol and Premarin contains conjugated estrogens". Hmm. Still not clear.
Conjugated estrogen is a mixture of several types of estrogen.
Premarin is a mix of 30 plus substances derived from pregnant mare urine with about 17% of that being estradiol.
Interestingly this was from a study on the effects of estradiol on brain function. Estradiol provides some protection from dementia type deterioration, and Premarin provides less. I'm good with this. I just want my kootch to work for sex, I'm not trying to get into Harvard!
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Karen, Imvexxy is generic Vagifem. I used Vagifem for years in my 40's and 50's. It stopped working eventually and also caused yeast. I wish I could still use that. My urologist told me a group of doctors in AZ found that using it was ok for ER+ BC. He didn't have any data. In God we trust. Everyone else must bring data.
runor, I Goggled CSD. I found about 200 possibilities. Lots of school districts. The brain function thing is interesting. Makes me more enthusiastic about getting some estrogen.
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My Bezwecken Hydration Ovals 1x Plus just arrived by UPS. 1 mg of estriol plus 3.25 mg of DHEA. I am going to plop it down in front of each doctor I see this month (at least two) and ask, "what about this?" These also come in 2x plus with 2 mg estriol plus 3.25 mg of DHEA and 1x with no plus (added) DHEA. There are also some with progesterone. The base of all of them is cocoa butter, vitamin E and beeswax. Amazon. You can't get them from Bezwecken without a provider. You can get them from Amazon with a credit card.
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Jaycee - Imvexxy is not sold as generic but as a top tier name brand. It is new! It is estradiol in a very small vaginal inset. Less messy than creams. Last time I tried e-string it came me a massive yeast infection. Gyn offered me cream and Imvexxy and so far Imvexxy has worked well. Medical oncologist is on board with this.
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Karen, I remember when Imvexxy was the first to use the formulation of Vagifem after the company lost its patent. I was hoping it would be cheaper. The price of Vagifem went up consistently and by a lot when I used it 20 years ago. Of course, my perspective on price has changed since I started taking Ibrance ($14,000 a month with $634 co-pay). I'm not sure Imvexxy is much cheaper than Vagifem. I would be willing to buy either if my MO agreed to estradiol. I was thinking doctors might be more open to estriol. We'll see. I have been known to get yeast from estrogen. Not sure why the ring would cause it more then the tablet. I did get yeast from Vagifem. It's one of the reasons I stopped using it.
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