I WANT MY MOJO BACK!
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Thanks, Lilly, I put some coconut oil in my bathroom and try to remember to use it. It’s cold right now so it stays solid but don’t know what I’ll do when it warms up as I’m in SoCal and it’s often over 80 inside the house. The last few months haven’t been too bad since I was on chemo but just started faslodex so I expect changes.
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So I'm not alone... I'm menopaused bur it's a feeling of a tight ring that other women have described here, more than dryness, that makes sex painful. My husband who has always been supportive, and never pushy, has the libido of a 17 year old, so I know he misses intercourse and so do I. I used to enjoy it, but now I'm afraid of the pain. I've used dilators (also painful) and gone for the Mona Lisa treatment (only short-lived and partially effective and very expensive). It seems the best I can do is use Replens, allowing a few hours for it to work, and then biting the bullet. Since my cancer was hormone negative, my oncologist says I can use vaginal estrogen but having seen hormone positive recurrences in women initially diagnosed with hormone-negative HER2 positive BC, I am scared. Any thoughts, advice? Coconut oil and other "natural" lubricants haven't helped.
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Pip, what you need is moisturizer, not lubricant. You need to rebuild the vaginal tissue. Lubricant is still necessary to use DURING but it takes some time to get the tissues back to "normal." I have a very extreme case of vaginal atrophy, had it before cancer. And I still take hormone suppression so I am totally different from you. If I could use vaginal estrogen, I would jump on it in a heartbeat. What I did do to get to where I didn't have a UTI every ten minutes is use some moisturizing product every night for four months. Coconut oil suppositories, etc. There are lots of them, some more expensive than others. All work about the same. I maintain this state with suppositories once or twice a week. Let me repeat. If I could use estrogen or even DHEA, I would. That works better than anything. Using a lubricant only works short-term. During the act. You need something that works long term, has time to soak into the tissues. It takes a while, 3-4 months. Even estrogen takes that time. The first time I used vagifem, it took three months to notice a change.
I didn't just have pain during, I had pain after for at least a week. DH and I still have various kinds of sex and all are fun but no intercourse is a bummer. The longer you wait to fix this, the harder it will be.
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Pipandor, Jaycee49 is right. Get yourself a good estrogen suppository or ask your GYN about estrogen. I use a suppository with a cocoa butter base and estrogen as the active ingredient. It is prescribed by my naturopath and I get it from a compounding pharmacy.
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I'm new to this forum, but find it to be very helpful to know there are more than a few in the same boat. My husband & I have been together since I was 16 & he was 17. We have been married almost 53 years. Our sex life was great up until October. That was when I was diagnosed with BC. My libido died then. My husband is 71 & I'm 70, we enjoyed good sex at least once a week. I so miss how it was, it's like another death in the family.
I have a jar of coconut oil I had bought for cooking, but is the kind of coconut oil you are speaking?
Doris
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Doris, yes. That's the stuff. I'd scoop out a bit into another container and keep it next to your bed. It really does come on handy.
And by the way, kudos to you for keeping your love life so satisfying for all these years. It's not an easy thing to do. I can understand why you miss it so much.
I hope everything works out well for you.
Trish
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Jaycee, Corky, thank you so much for the advice. I think you've convinced me to give the estrogen suppositories a go. Is there an estrogen "light" product I could start off with?
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Pip, estrogen needs a prescription from a doctor. You probably need to discuss this issue with a doctor, maybe your gynecologist. They might want permission from your MO even if you say your cancer is not ER+. (You'd be amazed what doctors don't know.) I only like to suggest things I have used myself. As far as topical estrogen, I used Vagifem many years ago. It is very low dose. Many doctors use it with ER+ BC. If you are going to use estrogen, you have to be all in. You use it every night for 14 days and then twice a week thereafter. As I said above, it took four months to really notice my vagina being back to normal. It takes time. I would go to Amazon and buy some Key E coconut oil suppositories in the meantime. (There are lots of others but Key E is the cheapest.) Then those can be used on the nights when you don't use Vagifem. The problem with Vagifem is that it has gotten very expensive. It was not when I used it. I think they have a generic version now. And there are alternatives that others may post about. And there is DHEA which you can buy online. My MO says DHEA is just like estrogen. Turns into estrogen. If you want to have vaginal sex again, you have to DO something. Waiting will only make the situation worse. And waiting too long, like I did, will mean you will NEVER be able to have vaginal sex again.
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just a note on coconut oil. I bought an ice cube tray that had small shapes about the size of suppositories. I melted the coconut oil, poured it I'm and kept it in the freezer/fridge. Worked great. That being said, it did not help,with the pain. I am going to pursue the Mona Lisa touch and try and get estrace or something
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Pommon...if I was 79, I think I would tell the docs that you need a little estrogen just to keep other things healthy Geez, props to you for being active at 79. I feel like by the time vaginal estrogen might cause a problem you would be 90 and something else might be happening by then. You go girl! You are my new role model
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Pipandor, I use an estrogen suppository prescribed by a naturopath. It has a cocoa butter base and contains 0.5 mg estriol. Estriol is a very, very weak estrogen. I am to use one per night. It can also contain Vitamin E but I find that irritating. There is still some vaginal atrophy present but not as much. I can function and the urinary incontinence that I experienced when I walked has disappeared. I found that Vagifem was so weak that my body never even recognized it. My PCP offered Premarin cream but I felt that would be too strong. Estrace gave me a headache.
Good luck!
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Fluffqueen, that was a typo, I’m 70 1/2. Yes it would be good to be going at 79, I think my husband probably will still be.
I need to get my feelings back in gear, think a lot of it is psychological. I feel so strange not having any hair anywhere.
Doris
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Hi ladies, some time ago, I read somewhere on this message board, that someone tried using lidocaine to numb the pain. Anyone here tried it?
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I have pelvic pain syndrome. When that flares I use one part of prescription lidocaine ointment (for some reason it's minty) to one part aloe vera gel. But I don't have relations with my husband for a few hours after. He doesn't want to be numb.
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Corky, maybe reconsider the Premarin. I have a tube and would rather give up a kidney than hand over my Premarin! I have used it WITHOUT my oncologists blessing. Since he is not the one living with a misfiring vagina I figure he has nothing to lose by telling me to suck it up. Oh, it's sucked up Buddy, you have no idea! So when things below the navel hit critical mass, I will use .5, yes, HALF a milligram dose, like the size of a pea, and it solves all my problems. I do not use .5mg every night, or every other night. I use it once every 6 months. It clears up that sensation I have that an avocado is trying to fall out of my vagina, it clears up bladder dribble, it clears up bladder infections that I chronically get after sex. It is, for me, the elixir of the Gods. Once - every 6 months. It might take a week or more for the full effects to be noticed, but as that old ad used to say, "A little dab'll do ya." (and if you know what that was from, you're of a certain vintage!)
When I did tell my onc I was using Premarin he asked how often and when I said about twice a year he waved his hand and said pffft. If your vagina is seriously AWOL you might have to use a dose every month for a while. Then after that it might just be twice a year maintenance - put it on your do-list. - clean gutters - take down Christmas lights - rotate tires - medicate hoohaw.I think you should think about giving the Premarin a try, just not every day and be prepared for it to take a while. But it has been a saving grace for me.
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but premarin is still a hormone and premarin is one the cruellest meds - not only are animals used in development (all drugs have this even though many researchers point out that animal testing is not very useful at all as far as efficacy and safety in humans) but it's *from* the urine of pregnant mares kept locked up and constantly pregnant, babies taken away.
If someone is going to try one, even with pulse therapy, why not stick to a synthetic estrogen?0 -
Jaycee, Corky thanks again. Those are interesting options and give me something to discuss with my GP. She is a woman and when I first brought it up, said that if my oncologist us Ok with it, so is she.
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I've got Estrace Cream which is also an Estradiol and I basically stopped using it although neither my BS or MO said anything about it, and it's on my medication list. I've got several tubes left. But if I need to use some for major irritation then I will but hopefully only a couple of times a year. It's not supposed to be systemic. Using coconut oil but it really doesn't do the same thing for irritation. Premarin is made from conjugated estrogens according to what I looked up. Is that a stronger Estrogen than Estradiol?
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Moth, yes Premarin is estrogen, and that seems to be what does the trick (for me at least). As for the morality of using it, I agree with you that it's kind of a ghastly idea, mares pregnant all the time, wearing weird catchment cups to collect their urine, living a life of greatly restricted freedom. By that same token milk, cream, cheese, yogurt and ice cream are cruelty foods because cows are repeatedly bred and calving to be producing milk and they get hooked up to machines twice a day and live very restricted lives. So to single Premarin out as a baddy in a world of baddies .... If some poor horse has to be locked up then I may as well thank and honour her for her service by finding great relief in that which she provided for me. I use it with gratitude for her sacrifice. But I do get your point. I just don't think me walking around with a miserable vagina is going to revolutionize and reform the pregnant mare urine industry. Oh that it would!
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runor - you're right about the other stuff too. That's why I'm vegan
I do deeply believe that small individual choices make huge changes when enough of us make them.
but I also understand if the ingredient is the only one that helps you and there's no synthetic alternative then tough choices get made
I just am not clear about why/whether this works differently than the synthetic.0 -
Thanks corky60. I will try this combo. Did you get the rx from gyn? My Onc blew me off when I enquired about getting a rx for it
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I get the Rx from a naturopath and it is filled at a compounding pharmacy. My insurance doesn't pay for it so I have to out of pocket.
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I also like the Key E suppositories. My BF helps me undres on nights we spend together. Then he puts one deep inside me just before we get into the shower together. By the time we're dried off and ready for bed, the suppository has melted and my vjj is ready to go. (Of course, the kissing and touching in the shower don't hurt either.) We use a towel underneath, because it can get drippy. The Key suppositories are cheap, about 50 cents each on Amazon. You might as well try them if you haven't yet. Hope this helps.
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Hello all, I've been struggling with vaginal dryness for sometime now, I dont mean just with sex...I mean all the time. Replens is messy and leaves me with an odor. Vagisil is much of the same mess. I have been using Vit E oil but only on the labia and not internally. I am ER+ and my gyno recommended Imvexxy 4 mcg twice a week he said it's such a minute amount of estradiol that it shouldn't be a problem. He said to check with my onco and if he says "no", that I could make a choice then. My onco said NO. Here it is, I want quality of life, if I'm walking around uncomfortable (literally all day long) and irritated then where is the quality? If you are ER+ and your oncologist said yes to this med, please shoot me a PM if you would or respond here, I'm interested in what your onco said. Thank you!
Melanie
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I had just put my computer away and saw your post on my phone. Computer back out. I could have said the EXACT thing you said. One big difference. I am stage IV. I saw my gyn on Monday. She prescribed a steroid cream for the extreme irritation she is seeing. I saw my MO on Tues. I told her and got the usual shrug, like what can you do? This is your life now. You can buy DHEA on line. No Rx needed. I am very tempted. I'd like my doctors to care about my QOL but they don't, especially all the MO's I've had. If a drug they are prescribing is causing an issue, why don't they feel some responsibility to address it? The attitude I get is, "you should just be happy to be alive." That's a stage IV thing you may not get from your MO but I am sick of it.
Why did your MO say no? Did the doctor at least explain?
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Jaycee49. My MO office said no. Nothing with estradiol or estrogen BUT, I got this from his nurse. When I mentioned the extreme dryness on my last visit with him, he looked at Vagifem and then immediately said no because of the ingredients...he said that maybe in a few years, he would think about something like that but that I needed to be farther out. The thing is, I'd be willing to use the Imvexxy only once a week if it would help even in the slightest. I'm desperate.
Thanks for your reply!
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moodyblues, my onc wrote me a RX for 10mcg today. She offered it before but I finally feel like I really need it.
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Hi all, this thread has been super helpful. I've been having some kind of baffling symptoms that I'm wondering are part of the whole vaginal changes problem or something else for a few weeks now, The best I can describe it is feels like a fluttering or a buzzing, first kind of hard to locate in the perineal area, but now feels concentrated around the vagina, like an eye twitch but down there.
I'd love to hear if anyone else has experienced this and if they found relief somehow.
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That fluttering/buzzing feeling is my vagina's version of itching. I never have itching but I get the feeling you describe. It sometimes comes with yeast or, now, the wonderful other fungus I have down there. I picked up the steroid creme my gyn prescribed and see it is for fungal infections but I don't have yeast. It seems to be all around the area. I think the creme is working but I've only used it twice so far. I am finally doing as directed by my gyn and going naked down there at night and without pads during the day. Who knew they actually knew what they were talking about? I hear that coconut oil can cause yeast/fungus, first from a reviewer of Key E on Amazon and recently from a poster here. Why didn't I pay attention to that?
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Jaycee, daily wearing plastic backed pantiliners or sanitary pads that are paper or plastic topped can cause ongoing irritation to the lady parts. I know it goes against the North American grain but FABRIC (cotton!) pantiliners and sanitary pads, which you wash and re-use, will go a long way to calming down lady parts that don't like the mucky, humid environment caused by commercial products. For the last few years of my period I used cotton pads and yes, I hand washed them and yes I got over it and no it didn't kill me and no it wasn't gross. Wish I had started using cotton washable pads WAY sooner than I did. Just a thought.
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