I WANT MY MOJO BACK!
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Ok bouncing around on this thread....seems like Hyalo Gyn has more positive feedback then Ravaree? I guess I need to get into a daily habit of some kind of moisturizer.
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I felt like the HaloGyn helped me, when I used it anyway. I’m the worst with remembering or making the effort to use things like that.
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abjclan, to me, the big difference is price. Revaree is $55 for 10 inserts ($62 on Amazon). Hyalo Gyn is $25 - $32 for a 30 day supply depending on how you buy it. I bought three tubes for $25 each (the deal when you buy three). It is a gel coming with applicators (which I hate thus I haven't used it yet). So I can't tell you how it works. Just price and application method. I really like inserts (suppositories). If I were to try something for the first time between these two, I'd choose Hyalo Gyn just because of price. I just rediscovered Luvena. I used to think it was expensive before I started buying all these even more expensive products. It comes in an applicator (like Replens) but it is rather liquid so runs out on first trip to the bathroom. That happens to me about two hours after I go to bed. If you can make it more like four hours, you would get the full effect. My favorite is still Premeno Duo.
But the only way for these things to work is to USE them on a regular basis. I use something almost every night.
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Mena, I am with you girl!!! I have really lost my libido as well. When we do try, I can't reach climax. We have used toys, lubricants to make it easier and then boom!!! a hot flash will hit or I just plain can't do it. It is very hard on me and my husband doesn't quite understand that just because the cancer is gone, doesn't mean the treatment is over. Having to take Tamoxifen for 5 years is a hard one to handle. I am through almost 2 years of it tho....... looking forward to the end of that. On top of all of this, I was 56 when diagnosed and beginning to have menopause. I am now in full blown menopause and it is a pain in the butt!!
Keep hanging in there.
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I am going to the GYN today to have a hysterosonogram to check the uterine lining after being on tamoxifen for a year (well, 10mg most days!!). I 'm also going to bring up the issue that I haven't had feeling in my clitoral area since chemos 2.5 years ago. I thought it was the chemo but I was googling it yesterday and diagnosed myself as having clitoral atrophy. Yep, all the signs are there. Shrunken and numb. I was ECSTATIC to see it's reversible with hormone cream. I've been on Estrace for about 8 months--insert about every 4-5 days which took the pain away, but no feeling or pleasure on the inside. I always take a little extra cream and rub it into the outside surrounding tissues but haven't noticed anything. Maybe I need to do it more often or need a stronger amount of cream besides .01%. If I could reverse this, it would be life altering. I lost my taste after chemo so my pleasure bucket is completely dry!! This has definitely given me hope, and isn't that what we all are looking for?
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Hi all, I visited with an NP at memorial sloan kettering (where I'm treated), and she said that they see loads of breast cancer patients on AI's with vaginal issues. A few tidbits that might be useful to share, although I know some of this has been said on this thread already:
-the sooner you start addressing the issues the better
-almost everything related to pain and discomfort sounds reversible with time and attention to treating it. Libido sounds more complicated. Like it's hard to get aroused when you're worrying about pain! So sometimes solving pain solves libido. Sometimes other things required. She strongly recommended getting a vibrator for clitoral stimulation (even though I'm not having problems with clitorial stimulation specifically).
-they recommend Hyalogen, and using it at least 4x/week.
-in addition to inserting and injecting the cream like using a tampon, rub some around the opening of the vagina (inside the labia)
-silicone and natural oil lubricants are generally recommended over water based because they last longer.
-local estrogen creams are not off limits, although we should start with the non-estrogen treatments and see if those help. If estrogen is necessary it becomes a conversation with my oncologist, but in general they have been studied and can be used safely in most cases. There is a new one that's lower dose coming on the market soon. They raise the levels in the blood stream very short term (2 weeks) but not long term.
-the goal is ZERO pain and discomfort during intercourse, which made me very glad because I was starting to resign myself to it never going away
-this has some helpful info too! https://www.mskcc.org/cancer-care/patient-educatio...
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Hello - chiming in to share what my OBGYN and oncological NP have guided me on. Age 61, on Anastrozole. I'd like to add sex back into my life, now that major treatment and surgeries are behind me. Vaginal pain with intercourse has been a huge obstacle. DH is patient and kind---we'll get through this together, is his attitude.
- coconut oil--applied everywhere inside and out
- Estradiol cream (this is okayed by my MO, as is sometimes the case, as noted above by 2002chickadee --Rx) also inside and out (vulva, rectal tissue, etc + vagina) as dosage instructs, 3x weekly--better elasticity of tissue around my urethra because of this now keeps me from leaking a drop of urine sometimes, which used to happen when I sneezed, etc. so that's an added QOL thing that I appreciate about this medication
- "Use it or lose it" as far as elasticity for me meant starting over on stretching. I didn't use the dilators which others have recommended, but I found (online, from China!) a silicone/comfortable SexRabbit vibrator. Shape and size has worked to gently and eventually be able to insert it fully, with some time and work on lubrication over several weeks.
DH and I have not tried vaginal intercourse for quite awhile, due to my discomfort. I am feeling very hopeful about resuming, because I seem to now accommodate the vibrator. We will use 'Glide' type non-water-based lubricant--I know that can help. I think SLOW and GENTLE will be our plan as we resume, and we will, once tissue seems recovered and more restored.
My OBGYN has also prescribed lidocaine gel--this is to numb particularly painful spots. I have tried it in the past, and the trick is to use very little, since numbing obviously has a down-side in sex!
Libido: I have less, and it takes a lot longer to get the motor fired up, but I can orgasm. Now that I have the vibrator to practice with, responsiveness and sensation are getting tuned up. I miss nipple stimulation---gone after BMX, and that's a loss.
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Don't know if this will be of use to anyone, seems rather random info, but here goes.
If I am going to have pain with intercourse, or bleeding, it happens at the same spot every time. I had a HUGE episiotomy when I had my daughter. The scar is epic. That is now where I have pain and sometimes bleed. That scar tissue is unyielding. It always was quite substantial but seems to have become even more..atrophied? brittle?.. with tamoxifen. It might be useful to note if pain on entry is always at the same spot and if so, is it where you had an episiotomy? SOmetimes I have to say to Hub, wrong angle, readjust the trajectory of entry - Houston we have a problem.
Speaking of libido, to be honest, I didn't have much of a libido before. Hub used to suggest sex and I'd say nah, I didn't have a shower today, I'm not clean, I prefer to only have sex when I'm clean. Then after a shower he'd suggest sex and I'd say, nah, I just had a shower and sex is going to mess everything up and make me gross so I prefer not to have sex after a shower. Hub used to complain this was a Catch - 22 problem to which I responded, at this rate you'll never catch anything so you can thank me for keeping you safe from potential contamination. Of course the side effect of tamoxifen that is utter brain failure doesn't help libido either. Now Hub will suggest sex and I say, that's nice, remind me again, who are you?
I really think the fact that I can have sex when the shower situation is just right and I remember who my husband is, is in part due to my twice a year Premarin applications. I have even stopped the constant drip, drip I used to have. I could be wrong about that but for now that's my best guess.
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runor, yeah, episiotomy. Had one of those, a big one. Can't see the scar, I don't think. I think just the process of having a baby could predispose us to having these issues.
Chickadee and HikingLady, all good ideas. All well-meaning healthcare providers. BUT, I know all that stuff. I had to figure it out on own because I don't have any good healthcare providers. BUT, what about stage IV??? Do any of them talk about that? My MO says no to any form of estrogen. I have been using the non-hormone stuff for years to some success. It has stopped working. I hurt all over down there. I can't sit comfortably and that's all I do. Sit. I can buy some kind of estrogen online with no rx but the contradiction returns. I'm taking a drug that suppresses estrogen and now I want to USE estrogen. Cognitive dissonance in the extreme. I'm seeing MO on Tues. and will bring it up AGAIN. My brain might explode (or my crotch).
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Jaycee, have you considered Intrarosa? It sounds like the safest choice to me. It is a precursor to a hormone, so is expected to only act on the local tissue. No studies in stage iv bc patients of course, and it comes with the usual history of bc warning on the package insert, but theoretically it should be safer than estrogen cream.
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Thanks, Shetland. I've looked at Intrarosa and counted it out for two reasons. It is REALLY expensive. It contains DHEA. My MO said DHEA might as well be estrogen. But now I am looking at products with both estrogen and DHEA. Desperation time. This is what I'm looking at right now. A line of products from a company called Bezwecken, a company I had heard of a while back. All available at Amazon without a prescription and fairly inexpensive. They have:
hydration cubes/ovules 1x 16 count with 1 mg estriol ($19.50)
hydration cubes/ovules 1x plus 16 count with 1 mg estriol plus 3.25 mg DHEA ($19.50)
hydration cubes/ovules 2x plus 16 count with 2 mg estriol plus 3.25 mg DHEA ($23.00)
I'm also thinking about the new generic Vagifem called Yuvafem with 10 mcg (0.01 mg) estradiol. This needs a prescription.
I'm going to show these options to my MO on Tues. It will be a zoo because of the holiday weekend. I may get too frustrated to bring it up, which is common for me. With several really long waits, I am usually too annoyed to discuss anything and just want to go home. Is this planned?
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jaycee49 there is a new estrogen option, either about to be released into the market or just released, which is a lower dose than 10mcg. That may be something your MO would okay.
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I brought up the vaginal dryness issue today with my MO, told her that it felt like sandpaper last time we tried having sex. She grimaced and said, we don’t want that. She suggested I try Intrarosa and warned me that it was expensive and that insurance may not help. I’m up for trying it but am a little concerned about the possible estrogen effect. I got the feeling she doesn’t hear this complaint much. Maybe others save it for their gynecologist? (Last time I mentioned dryness to my gynecologist I was just into menopause and I had no idea what was coming down the road with MBC and Letrozole. I did have good scans though, so I appreciate the Letrozole for that.)
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I am ER+ and am on Anastrozole. I see on this thread and elsewhere on this forum that some MO's say NO to Estradiol cream for ER+ patients.
My OBGYN prescribes Estradiol cream. My MO continues to approve, and says it's fine for me to still use it.
Small tube, 1/2 gram 3x/week. Works well for me. Out of my measured dose, I save out a small bit to put around vulva, rectum, urethra to keep those tissues also elastic, and the rest goes in my vagina.
It's expensive---I think I pay $150 for a tube, but that's the DISCOUNTED price with my insurance--the real price is more like $350. One tube lasts 3 months.
I just chatted today again with my MO about whether it's still safe for me. He says YES. The studies he trusts don't show systemic absorption that would interfere with my estrogen levels. He says that even a higher dosage than what I'm taking has been shown to be safe, so he thinks it's completely fine for me to continue.
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My medical oncologist is okay with me using estrogen cream - in the past I used estradoil (sp) - tried the ring and got a massive yeast infection but not with the cream. Gyn gave my an Rx for Premarin and it is helping. She also gave me samples of Imvexxy with is a small suppository (10mg). It is less messy than the cream. It is making a difference for my female parts as well as intercourse. My husband also found a cream in Canada called Gynatrof - its a vaginal moisturizer - to help relieve symptoms and discomfort of vaginal atrophy - it is over the counter (no Rx needed) - main ingredients are hyaluronic acid and vitamin E. Manufacturer is Tyros Biopharma.
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I'd been on Estrace but was given Premarin last week. Both are .01%. Hiking Lady, does the brand matter--could you get a different one for a cheaper price? My insurance covers mine.
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Hi - regarding which brand of estrace cream... My insurance does pay a lot of the cost, but I have a high co-pay. My OBGYN linked me up with a mail order compound pharmacy that has a version that's generic. The idea was for me to try it, and if it worked, it was a lot cheaper - maybe $30/tube instead of about $300! I found it to be watery, wouldn't stay on my skin---just slid right off because it was so thin-bodied, and also adversely reactive with my skin--made my tissue sting.
This is the kind I use and it is name brand, I think, and super expensive, for sure:
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Hiking lady--I just paid $20 for my Premarin, I must have good insurance?
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Yes, I know Estradiol is way more expensive than Premarin....I've been meaning to ask my MO and my OBGYN to compare and contrast so I understand the differences between those two medications. Possibly local vs. systemic? I will ask my docs to tell me more...
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hikinglady - one difference between the 2 medications is that estradiol is synthetic whereas premarin comes literally from the urine of pregnant horses which are kept in cages, perpetually pregnant, and hooked up to urine collection bags. I don't even want to think about what happens to their babies.
However, medication prices have almost nothing to do with how much it costs to produce or the price of ingredients - they're pretty much based on what the market will bear. There was a recent push at the World Health Assembly to increase transparency in drug pricing worldwide but the final resolution was watered down. "" Prices charged by pharmaceutical corporations vary wildly for the same medicine depending on who's buying, and the exact prices that are paid are typically shrouded in secrecy." Doctors Without Borders article on secret medicine prices: https://msfaccess.org/secret-medicine-prices-cost-...0 -
I joined this discussion a while back and I thought it might be helpful to share what I have learned since. Turns out the tight ring of pain I feel is caused by scars left by a laparoscopic hysterectomy performed years ago. Many women have vaginal scarring from childbirth or surgery that may not cause pain until after menopause. Unfortunately, estradiol did not alleviate that pain for me, but it really helped with incontinence so I plan to stay on the maintenance dose.
Replens, preferably a couple of hours before intercourse, and intercourse at least once a week remain the best way for me to manage. I tried Gynatrof but I didn't find it as effective as Replens. The single-dose tubes of Replens are not very eco-friendly, but they are paraben-free.
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I found my notes from discussing this with my MO...he said no to Premarin for me, because he thinks that it affects more of the systemic level of estrogen and yes to Estradiol because it's not shown to be as absorbed systemically and stays more local and temporary in only vaginal tissue. I had my first breast cancer, also ER+ in 2003 (!!!! YES, just my bad luck; my 2018 breast cancer was not a recurrence from the first one, but a completely new cancer with totally different pathology.. #1 was absolutely cured, so says my MO) so my discussion about all this with both my OBGYN and also my MO has been going on for 16 years now, alas....
moth yes very true about med pricing---I think there are now synthetic versions of Premarin? We have horrific examples in the USA of overpriced 'brand name' meds, for sure.
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My mother was taking Premarin when she was DX with BC. Needless to say her doctor told her to cease and desist taking it. There is a link between the drug and BC.
Diane
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Edwards750 - many of us taking Premarin or estradiol are Breast cancer survivors and taking the drug with the blessings of our oncologist. There is no one size fits all
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Hikinglady...your oncologist better know more than 'thinks' it will affect you systemically.
I am skeptical on how much our oncs know or care to know about destroyed lady parts. They're not gynecologists. Some of them are not even women. Some of them have never walked around for even one day with a non functioning vagina! Just because they have the white coat and stethoscope DOES NOT MEAN they got a dose of empathy at the door. No. They are oncologists. They spray chemicals on things. So your hoohoo got a little overdrift from the Round-Up and now it's withering into a pile of dust, oh well, shit happens.
I think if someone is expecting to use Premarin every single day and they have a hormone positive breast cancer, yes, there will be pushback. But I maintain (as this is my experience and the only experience I can offer) is that ONCE EVERY SIX MONTHS I shoot up a dose (tiny, .05 gram!) and it has helped tremendously! It even took care of the pee dribble. It helped me sleep - because I was awake, rolling around in bed in uncomfortable misery feeling like there was a dry golf ball shoved up my kooch that was trying to come out, scratching and dragging as it did.
If you are willing to try ONE application of Premarin and then let things settle for a week to 10 days and then re-evaluate how effective it has been, why in the name of god would you let your oncologist, who did NOT wear your vagina to work that day, tut-tut you? I think enough has been taken from us with breast cancer. If I can use a reasonable amount of vaginal hormone cream, every now and then, to make life and vagina more tolerable, then why the hell wouldn't I? And why would I give my onc the power to say yes or no to that? Sorry Buster, this is a Private Panty Party and you are not the owner, so give over the goods and shut the hell up. Once every 6 months? Come on!
Moth, I know this issue of PMU horses has come up before. PMU mares are often drafts. In many cases their babies go to slaughter. But you must also know that untold numbers of private horses also go to slaughter because the world is staggeringly full of idiot people who happily starve and neglect their horses. For a lot of horses a bullet to the head is a far kinder end than slow, painful withering death from starvation or a parasite load that sucks the life out of them. PMU mares are well fed, well vetted, kept away from biting pests and inclement weather. Yes, their movement is confined and they wear urine catchment cups. Also, many of their babies are in great demand as sport horses, the poor man's warmblood. Belgian, Clyde, Percheron X TB make some mighty nice mounts for stadium jumping or eventing. The issue of PMU mares in not black and white. It's shades of gray. And I say a thank you to some unknown mare that her sacrifice has brought me relief from some real misery.
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What a difficult thing we're all going through. The Collateral Damage from cancer treatment leaves us with so many challenges.
I've been dealing with vaginal atrophy since I was 45 (I'm 61 now) because of being on Tamoxifen back then after Breast Cancer #1. All along, my MO and my OBGYN have both been extremely responsive and compassionate and proactive about supporting my comfort in all ways. In All Ways includes making sure I have a functioning vagina.
My MO has absolutely done super-investigating and reading of all new trials and research to give me a plan going forward that supports my overall QOL and is also safe, given my diagnosis.
Estradiol cream (1/2 g 3x/week is my Rx) works just great for me, and is approved for me by all my docs, so I'm grateful for this solution, and grateful for their compassionate, good care.
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Premarin, estradoil and the new cream, Imvexxy, at least from my Rx is use every day for 2 weeks, then just twice/week. It has made a significant difference.
Runor, not all male oncologist are cold and uncaring about lady parts - my oncologist was the one who originally gave me the Rx for estrace cream. My pcp, oncologist and gynocologist all feel it is appropriate for me to use. But I know not all doctors have great "bedside" manner.
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Karen. I agree. Not all oncs are uncaring. And it's not even so much uncaring as just not alert to or concerned with that part of our lives.
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HikingLady and Karen, I'm really glad you have nice caring MO's. You are very lucky. I don't. I get "no comment" on most side effects of treatment. I think it is the RESPONSIBILITY of any doctor who prescribes any med to take their patients side effects seriously and help them deal with them. Every education session I have been to for a new treatment taught me that if I have any side effects, I should report them and my MO will help me. That has NEVER happened. My former MO actually said to me, "have you ever tried yoga?" That was the entire extent of his help. I was falling down sick with chemo and that is what he said. (Thus former MO) My current also has no suggestions but she is nicer.
I went to a new PCP yesterday (I go to a place that uses residents so there is a lot of change) and she said to use Vasoline in and around my vagina for dryness. My vaginal dryness is being exacerbated by yeast treatments right now. I checked online when I got home and all sites said DO NOT use Vasoline on that area. Why? It causes YEAST.
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My oncologist is a friendly but businesslike woman. She treats and tracks cancer. Period. She has a case load that excludes anything else and she directs patients to their family doctors for anything else, including referrals to other specialists. I'm ok with that and happy that we have a regional oncology centre because in Canada, a lot of people don't.
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