I WANT MY MOJO BACK!
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ggtexs - I've been taking DHEA suppositories with much success as far as overcoming vulvodynia and dryness. Sex for me has been out of the question for several years due to being postmenopausal years before my dx and almost 5 years of AI's. I'm also working with dilators and moisturizers and it'll be some time before I am ready for the real thing. But I'm hopeful that soon hubby and I will be able to have sex again! I'm also hoping that desire will happen at some point along the way, but am trying not to put too much pressure on myself.
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ggtexs, - my current onc (a female) suggested Hyalo gyn. I found it to be very good. It's only available online, but I asked them for a sample before buying, and they did send three to try. I am ultra-sensitive to everything in that area and find this to be ok. I do use coconut oil, too. The Hyalogyn is used every 3-4 days, and I use the coconut oil on the other days. I had been on vagifem years ago, and that was not as effective as this!
There are many options out there. You just need to find the ones that work for you!
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ggtexs, Although my oncologist said yes to Vagifem and no to estrogen, the Vagifem did nothing for me. So I found a naturopath who prescribed 1 mg of Estriol in a base of cocoa butter to be used three times per week, It is formed into suppositories by a compounding pharmacy. The other four nights of the week I use a plain cocoa butter suppository mad by the same pharmacy.
I am now thinking of cutting the dosage in half and using the Estriol suppositories six times per week. It would still add up to the same amount of Estriol per week. By using it in this form the Estriol is not supposed to be absorbed by the body, it just stays locally where you put it.
As they say, use it or lose it. Good luck getting back into the swing of things.
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Pure Romance, it is a product sold at home parties, has a set of dilatory. Have no idea the cost, they can be pricy, but hey, to get some sex life back it may be worth it. I use coconut oil every morning after shower and Estrace estrogen cream twice weekly. It is working for me pretty much
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ggtexs, I highly recommend this site: https://sexualityresources.com. It's the only place I was able to find specific instructions. Look for the topic "vaginal rejuvenation" for instructions and specific products they recommend.
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I just want to report that although my drive is pretty nonexistent, the mechanics have definitely improved so don't give up hope. I think one important point is to try and even if you don't feel like it, do it because I think much of the atrophie (how the hell do you spell that), comes from inactivity.
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Trvler, it's atrophy. You almost had it. I've had vaginal atrophy forever. Started at menopause about 20 years ago. My marriage has been iffy for years, too, so your inactivity theory is spot on. My atrophy just kept getting worse. Lots of UTI's, yeast infections, and pain. Then in 2014, stage II BC. Chemo (only made it through two rounds due to gastrointestinal hell), radiation and Tamoxifen. I had constant UTI's while on T for 6 months and quit that. Then in 2016, stage IV. Now I take Ibrance and Letrozole. More vaginal atrophy. What I wonder now is, is it too late? Have I waited too long? Do I even want to put in the mental energy to try and fix this even though it has maybe a 50/50 chance of working? Do I go to a sex therapist? Dilators? I've been using vaginal moisturizers every night since Dec. and seem to have UTI's and constant burning under control. Could I go some steps further and actually have sex in the time I have left? I read here that many of you are ER+ and use topical estrogen. My former MO said no to that. My gyn said no to that. My urologist said maybe. But I'm not seeing ER+ stage IV people here saying they use topical estrogen. Would it just be crazy to do that? Is DHEA just the same thing? Seems like it. Why don't doctors measure the estrogen in your blood before starting topical estrogen and then after you've been on it for a few months? Isn't that the crux of the matter...does the topical estrogen get into the bloodstream? I don't think I've used this many question marks in a post before. I've been thinking about posting my situation for a few weeks. I've read several threads on this topic and this is the best, obviously. I'm seeing my new MO today and want to ask her but my former MO's attitude has given me PTSD for asking doctors questions. I'm still going to do it, though.
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This is a thread I am going to start following. I just went through menopause then the bc dx..... estrogen positive so my MO told me to stop using the estrogen cream that seemed to help prior to bc.
Just when I try to move on after treatment I realize this is an ongoing pain in my ass (along with my joints, my vagina, etc). I need to talk about the coconut oil suppositories and compounding pharmacys. Ive never used one of those pharmacy's before. Do you just go in and tell them what you need?
I definitely want my mojo back......
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smwusaf, I buy Carlson Key-E suppositories on Amazon. Not very expensive. They have coconut oil, palm oil and vitamin E. They work for me as well as the expensive products (Premeno Duo, Luvena, Ladybits Jelly, lots of others). They do not have an acid, though, to prevent yeast like the expensive ones do. I use Luvena (cheapest of expensive ones) every few days to prevent yeast. If you are not prone to yeast, the Key-E might be ok alone. I've only been experimenting since December so I'm no expert but want to share what I've learned so far.
I always have a prescription when I go to a compounding pharmacy. I've never used one any other way.
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Thank you Jaycee49
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jaycee49, do you use an applicator? If so, what kind?
Thanks!
Pi-Xi
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Jaycee, I was told by my urologist that the Estriol that I use in a cocoa butter suppository is 100 times weaker than Estradiol. For what it's worth I do not worry about it being systemic.
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Pi-xi, no applicator. Just my finger. No problem.
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Sorry, Corky. The reason I didn't answer right away and my reply to Pi-xi was so curt was that I was in the waiting room at my MO's office typing on my phone. Well, she put the kibosh on any estrogen at all. I'll be calling my gyn tomorrow and see if I can see her and see what she thinks. I'm not optimistic. ANY estrogen is a no-no for state IV with "active" disease. My Pet scan shows NO uptake but still I am active, I guess. Crap.
BTW Pi-xi, my gyn told me that in Europe, women put Vagifem tablets (and other suppositories) in with their fingers. No (single-use) plastic applicator. She said women in the US need to stop being such prudes. I agree. Obviously, I'm not in a good mood after spending three hours seeing MO. And mine doesn't even sit down any more in the exam room. Saying with actions, "Hurry up and ask your (dumb) questions." I took my time but got nowhere. She said she hasn't read the gyn professional organization's opinion yet. I'll bring her a copy. But I read it again. Nothing about stage IV.
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Jaycee,
We have a lot in common as far as the atrophy due to long term inactivity. I'm also ER+. I have no idea why they'd say no to topical estrogen for you. To me, it's a quality of life issue. But the thing is - and this is what I find so frustrating - is that even those providers who are supposedly 'in the know' realize there isn't a good answer to any of this. The fact of the matter is that they just don't know. I was told they don't measure estrogen levels because there is no standard for what is good or bad, and they wouldn't know what to do with the numbers even IF they had them - although it would seem obvious, right?
I was told that after I go off my AI in a few months, they'd be switching me from DHEA every night to twice weekly vaginal estradiol (tablet or ring). Somehow I don't like the sounds of that. I just got used to taking this and it's taken every ounce of courage I have to get over the fear of "what if."
Anyways....I'm sorry you didn't get a satisfactory answer from your MO. Maybe they feel the treatments you'd be taking would interact with the estrogen. Did you ask about DHEA suppositories? I don't know if it's 'safer' but I was told they prescribe it for those who are on AIs, but then later switch to topical estrogen once you're off AIs. So....maybe that kinda sorta answers your question?
Sounds like you are on the right track with your compounded versions. It can't hurt. No pun intended. I was told point blank that "nothing else works" besides estrogen or DHEA. But a lot of women here say otherwise. Meanwhile I'm doing my homework with the dilators and PT. I have a long way to go and I don't think I can get there without some major intervention. UGH!
Oh...final word by my lady doc. Penetration isn't all there is to sex. But it IS on my bucket list, lol!!!
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Jaycee, thanks for your response! That's what I'd been doing, I just get nervous about getting an infection!
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Good lord there’s a product called ‘Ladybits Jelly’?!? LOL!! Gotta love it! It HAS to be British. Must check it out
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Products I have used so far:
No acid:
Carlson Key-e suppositories Amazon has a box of 24 for $9.36 so .40 each
Some acid, applicator like Replens:
Ladybits Jelly http://www.ladybitstoiletries.com/ box of 12 for $28.00 so $2.33 each
Luvena Amazon has 2 boxes of 6 for $35.22 so about $3.00 each
Some acid, suppositories
Premeno Duo Amazon has box of 10 for $36.35 so $3.63 each
Mae by Damiva Amazon has a box of 10 for $29.99 so about $3.00 each
(has no acid but claims to balance pH)
These are the ones I have actually used. I like suppositories better than the Replens-like applicator. Those are not hard to use but you never seem to get it all out. With something that expensive, I hate to waste a drop. The Ladybits Jelly comes in a very nice metal box but DH says we're not reusing that in the kitchen.
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bc101, we may have a lot in common with vaginal atrophy but not cancer. Your dx and tx details are not listed but I assume you are at an earlier stage since you talk about going off the AI. I will probably never do that. Stage IV means treatment forever. But some stage IV people say they are NEAD (no evidence of ACTIVE disease) which I thought I was given I have no uptake on Pet scans. MO said yesterday that if you have active disease (she meant me) you can't use estrogen of any kind. So is anyone with stage IV NEAD? How do you get to be NEAD? Why am I not NEAD? This is probably the wrong place to be asking these questions but I am confused (not uncommon). I am looking into dilators but I'm not really interested in PT. That just seems like too much work.
I wouldn't worry about switching from DHEA to estrogen. Vagifem worked great for me a very long time ago. It did get way more expensive while I was using it, though. Might be more than the DHEA you are using.
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Be careful about using anything with acid. My gyn said that the vaginal superficial layer and intermediate layer of cells were missing. The basal cells were exposed and prominent. So using an acid product like Premeno Duo only made a bad situation worse.
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Jaycee and all, thanks for being so candid here. I had vaginal atrophy diagnosed way before breast cancer, about three years ago. Sex was so painful my husband and I just stopped; it was not a hard decision to make because he had serious health issues at the time. But after recovering from stage 1 breast cancer, I found a new OB/GYN and met with her last week. Essentially there's no option of an estrogen product for me so what's left is vaginal PT and a dilator; Mona Lisa touch laser treatments; or sex play without penetration. Honestly just hearing the wretched term "vaginal atrophy" derailed my desire altogether and Tamoxifen made it worse! I see my surgeon tomorrow who is the head of the breast cancer center so guess I will try to seek her opinion too. But geez, with all of the other doctors appointments and treatments and ailments I have going on it is hard to think about making my vagina a priority right now!
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Georgia: Have you considered a different doctor? With your dx, I am unclear on why topical estrogen wouldn't be an option for you?
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Hi Trvler and thanks for the encouragement. The OB/GYN was concerned that my ER+ is very high at 95 percent, so I'm off to ask the breast cancer specialist tomorrow.
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I would. I think that using topical estrogen is on the newer side of science so there are many doctors who may not know it's ok. And that said, I am not sure what level of estrogen is ok but I think mine is high. I am not even sure my doctor knows my estrogen level because I am with different companies.
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My MO doesn't want me using the topical estrogen.
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Honestly, you guys need to find other doctors.
http://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk
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At diagnosis my ob/gym told me to remove my Estring vaginal ring. First visit with my MO she said to go ahead and insert a new one. Been using it since. But I too feel like I've lost interest, not due to partner, but having so much energy expended on bc - it took over my life. I've got to get back on track!
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okay, the article is about the risk of getting invasive BC (too late) but then at the end it says:
In 2016, the American Congress of Obstetricians and Gynecologists concluded that women who've been diagnosed with breast cancer who are having troubling systems such as pain during sex may consider using vaginal estrogen at the lowest effective dose if nonhormonal moisturizers or lubricants don't work.
I think this is where my dr is going. She would rather be on the safe side of no estogen if there are other options. "lowest effective dose" still sounds like they are on the fence and covering thier ass in the article.
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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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too funny