I WANT MY MOJO BACK!
Comments
-
runor, thank you. I have been going without for a few days now and the difference is quite noticeable. What was I thinking? I need to get some gentle wipes and cotton pads for when needed, like UTI incontinence and yeast messiness. Regular stores like Walmart and Walgreen's sell cotton pads, organic even. I already have a few items in my Amazon shopping cart. Well, there are always a few items in there.
0 -
hi everyone. Have any of you pr neg ladies tried bioidentical progest cream? Or also... I believe it was called.. intrarosa inserts?
0 -
I use Intrarosa. It worked better than any other thing I've used so far...and I've tried a lot, including Mona Lisa. It does need to be supplemented with lube or coconut oil (lube of choice for me) during intercourse. I'm not using it right now because I'm currently on chemo and I really just don't feel like it. But I'll use it again!
ABSunset
0 -
From the Intrarose.com website:
"Before using INTRAROSA vaginal inserts, tell your healthcare provider about all of your medical conditions, including if you:
- Have, have had, or think you may have had breast cancer. Prasterone, an ingredient in INTRAROSA vaginal inserts, is changed in your body to estrogen. Estrogen medicines are not for use in women who have, have had, or think they may have had breast cancer."
The main ingredient is DHEA. The above statement is, of course, false. Estrogen can be used in people who are ER-. ER+ people use it, too, with good results. There is NO RESEARCH showing whether is causes anything, or doesn't. None. You are on your own. Your MO may say yes or no to estrogen. That's them guessing. There is just this disconnect, at least for me, to taking estrogen suppression (Tamoxifen or AI's) and estrogen supplementation at the same time. Doctors' problem, too, I guess. I get it. It's a question of where topical vaginal estrogen ends up. Again, no research. Maybe there is no way to determine that. Just thinking out loud here.
Sorry. Long answer to DebAL and, no, I haven't tried it.
0 -
True Jaycee, my ONC says it's safe...but really who knows. Right now there is no proof that it is UNSAFE.so... I'll take the QOL... Ive lostbenough and ..... i really wanna get my sex on, ya know.
Lol.
ABSunset
0 -
Pipandor and Moodyblues --- my Breast Surgeon Oncologist, my Medical Oncologist, and my Gynecologist all three agreed that I could use Premarin. I use 1 GM twice a week. They believe that very little gets into the rest of your system. The main thing is to use it twice a week to keep the vaginal tissues estrogenized - less will go into your system, it will remain where it is supposed to. I am a nurse, so I tried everything else and researched lots before going this route. This is the ONLY thing that relieved my symptoms - making sexual intercourse possible. It does not bring back your libido - but you can have intercourse without pain. At least this has helped me. This is part of the breast cancer journey that nobody realizes - so much of life changed forever with this diagnosis. Hope everyone find what helps them. Now, I would love suggestions to help with the libido
. 0 -
ML1209, I also have used Premarin, but without my doc's blessing. I have been extremely lucky in that I literally use it once every 6 months or so and it keeps things tolerable. I think it helped clear up the chronic pee dribble I had going on and helped with not getting a bladder infection every single time we had sex. No, it does not help with the libido. I don't know what would? Jason Momoa? I think too many women are scared off intermittent vaginal estrogen use because it appears to be a risk for estrogen positive breast cancer patients. But is it? As we have seen through multiple posts here, the jury is out. Some doctors rip the vaginal cream out of their patient's hands and toss it out the window. Other doctors say go ahead, proceed with caution.
I have not tried any other products to relieve vaginal symptoms, but considering that semi-annual applications of Premarin seem to be working, I feel very lucky!
0 -
I have to vent about my GYN here on these topics. I went in to see him yesterday about a weird symptom I've been having, and while I was there I also mentioned to him that intercourse has been very painful. He was like -- oh yeah, just use a lot of lubricant, it's from dryness. When I responded to him that I use plenty of lubricant, he said -- oh, well for women in menopause, we usually give them estrogen cream but you can't have that, so [shrug]. And then our visit was over. I was so close to crying when he left the room, I mean, I'm 42 years old and he's like, oh well, no good sex for you FOREVER. But, thankfully, I remembered all the good suggestions on these threads, and reminded myself there are other options, and walked out of there knowing it was the last time I would ever see that doctor again. Sort of a bummer because he was great through 1.5 pregnancies but obviously not the guy for me in this next phase of life. GRRRR.
0 -
Yeah, definitely Chick, find another doctor although that is a very common reaction from gyn's and MO's. Your DH needs to be with the program, too. Not so demanding of "regular" (that's what mine called it) sex at least until you have a chance to try a few things. It's his problem, too. Guys, as usual, have it easier. If they have ED, they just CAN'T. We just let them cram it in and suffer (not that I do that). Boy, I am in a mood.
0 -
Haha, I hear you on being in a mood! My DH has actually been super supportive with the whole thing, not pushing for anything. I miss it! I just think it's ridiculous that doctors respond so insensitively. I also suspect that if men had a problem where they felt like their penis was ripping off when they had sex their doctors would not dismiss them. Obviously, Western medicine has saved my life and I am grateful for that, but in this phase I am realizing how poor it is at helping us be well and whole in all aspects.
0 -
I hope this link works, it’s a treatment for Hypoactive sexual desire disorder, I ran across this info a while back and plan to talk to my GYN about it. My MO luckily seems to understand the disfunction the treatments have caused and wrote me an RX for low dose estradiol inserts. We also talked about the lack of libido but she incouraged me to talk to my gyn about that because she said they would know more, makes since. She said she would be glad to communicate with my gyn to make sure everyone was on the same page as to what is safe. She mentioned Testosterone for libido but stopped short of saying if it is ok or not, that’s when she said to talk to my GYN. As far as the link I attached, I don’t know anything other than what I’ve read about it but it could be a good option.
0 -
2002chick, it may get to the point where you have to make the decision to ignore your doc's advice and insist on something. Yes, modern medicine can keep us alive, but at what price? It's like making a deal with the devil sometimes. But my point is that doctors often act on the side of caution and since the popular wisdom is no estrogen creams for estrogen positive breast cancers .... they don't do any research or any creative problem solving on your behalf.
I keep repeating myself here about my intermittent use of Premarin, but by god I think it has saved me from a lot of the effects normally associated with tamoxifen. I think it would be insanely dangerous of me to use it every day, so I don't. It would maybe be better to use it once a week. But I don't. I use it every few months. Once every few months, like 6 months, and it has helped ease the symptoms I've had. Is it perfect? No. Sex still doesn't feel like it used to. But at least it's tolerable and I don't end up bleeding. If you were to try one application every 2 months and see if it helped anything, that might be a risk worth taking. More often than that might not be a risk worth taking. You have to weigh your comfort with risk against your desire to have comfortable sex and make a decision.
0 -
runor, unless you really enjoy sex yourself and that's why you prepare your vagina for it to be comfortable, you are giving me a serious case of cognitive dissonance. This is the same guy who wants you to have a large group of HIS family over for a sit down meal on Easter and doesn't understand why you still "act like" you have cancer when, obviously, you don't. I'm confused (not an uncommon state). Seems like you have some leverage here.
For people who can't or don't want to get a script for estrogen, DHEA is easily obtained online. Same difference. Twills, my former gyn (the good one) prescribed testosterone cream for me when we were trying to avoid UTI's and yeast. I never used it. Don't know why. Just seemed weird. She knew about my cancer and MO didn't object either. Must be OK?
I'm pretty sure from my own experience that the act of having painful sex or semi-painful sex makes things worse. And waiting to do something makes things worse. I am at the point that having "regular" sex will never be possible for me again. I've watched this happen slowly over many years. I had atrophic vaginitis long before cancer. Add chemo, hormonals, and inactivity and no more sex for me. I hear you all pondering your next move and waiting. Bad idea. You need to get moving or you will end up where I am and I'd hate for that to happen.
I'm in a war with my vagina every day. Right now I have yeast brought on by an antibiotic gel used for a vaginal bacterial infection that took three weeks to diagnose and treat due to idiots at my gyn's office including the doctor. When they answer the phone (after 20 rings), they put you on hold before you can utter a peep. You explain your issue. The front office person leaves a message for the doctor's nurse. The nurse leaves a message for the doctor. The doctor leaves a message for the nurse. She calls you back after all this which may be 1-2 days later. Meanwhile, your infection gets worse and harder to treat. I had to figure out that I had yeast because they could not. Now, I will not be able to get rid of the yeast unless I stop eating sugar and carbs for months. Last time, it took eight months. I didn't mean to include all of this but it looks like I did.
0 -
As I have mentioned before my MO prescribed Estrace estrogen cream for me years ago, use half a gram every 4 days. It stopped that ring of pain in the vagina that made sex tough. I use coconut oil after a shower and Wet by Platinum for a lubricant. Also have used the steroid Clobetasol to help clear up other vaginal issues, only use it maybe once a month now. I have to work to get the libido going. I am now over five years out, I do not want to take the Femara anymore, I want a better quality of life. Femara for the next five years only reduced my chances of recurrence by 4%. MO did not try to talk me out of quitting it. I know my body will not go back to pre-bc state but I want some of it back! Will let you know how it goes
0 -
Your mental dissonance is correct. I can give advice on Premarin helping my vagina. But it has not helped my desire. Nor has the fact that there are a lot of things wrong and always have been. Hub and I do not have an easy relationship. Never have. It has been a struggle since day one. There are great stretches of time with no sex. I am not in a flap over this.
0 -
For what it's worth, my GYN's sister and mother both had breast cancer. He truly stays on top of this and listens to my concerns, etc. He said he is very comfortable with them using the Premarin. That makes me feel better about using it.
This is some hard stuff. Hard to know we will never be who we once were. Hugs all around.
0 -
Hey! runor, what happened to the first paragraph of your post about me and my vagina battling at a beautiful chessboard? I liked that paragraph and now it is GONE. Did you think you could OFFEND me??? It is not possible to offend me I am offend-proof.
I'm glad that people and even their doctors find it ok to use estrogen. My MO is against it but I'm sure I could get someone to rx it or buy DHEA online. I mean, what am I worried about? I'm already stage IV. What else could happen? More spreading to more places, right? That's the worry. Seems suspect. (They don't tell you when you start Tamoxifen or an AI that you will never have a normal sex life again. Wonder why.)
0 -
Jaycee, I was afraid of offending you! Or your vagina. One must be careful who they offend these days. Don't want a pissed off posse of pussies showing up here on motorcycles to beat me up.
As for continuing vaginal misery, if you have not tried the Premarin, I say try it. As you say, at this point, what do you have to lose? Decide you'll try it once a week for three weeks and see if there is a difference. Like I keep saying, I used it about once every 6 months, and the improvements are immediate AND longer to show up. But I think you have suffered enough. Tell your Onc to get over him/herself and give you the goods.
0 -
@Jaycee, how long is too long? It's been almost 3 years. I just went through a ct scan and a cystoscopy for rare occult bleeding, continuous trace blood in urine and everything is normal, except for vaginal atrophy, which I knew from pain even inserting the cystoscope. (i had a hysterectomy at end of treatment, so no issues there). My MO prescribed vagifem, even though I am triple positive (either in high 80s or 90s percentile, I forget now).
If it's too late, I guess it's not worth the risk. I have read conflicting info on results of mona lisa touch (there is another in our area called diva or something like that) but my husband is not on board with that because of the expense and some reports of damage.
Sex is just too painful to induce anything other than dread and replens, astro-glide etc don't change that. There has never been discussion of quality of life issues by any of my doctors except the urologist. the not-so-subtle message I feel is that I should be glad to be alive. I feel guilty for being upset by all the side-effects from anastrozole, even though my mobility is now much worse than my 91 year old mother's.
Anyone else here highly ER+ with an MO who says vagifem is not systemic? A 2013 study I read said the results are inconclusive and I haven't found anything more recent. Was thinking about getting a 2ndoncology opinion, but if it's too late for vagifem to help, there's no point.
0 -
TriplePos, - I used vagifem with the ok of both my gyno and my onc, even though I was then triple pos. The prescribed dose was higher then than it is now, and I still did not find it to be of much (if any) help, even after years or use, so I stopped. I am reluctant to try Mona Lisa because of the possible added discomfort (as well as the expense). My current drs have suggested coconut oil and Hyalo Gyn, which has, indeed, helped. At the suggestion of my gyno, I recently switched the HyaloGyn for Revaree (both ordered online) because it is easier to use, less messy, and more soothing. Perhaps your gyno has samples for you to try? That was how I tried it.
Good luck!
PS I use coconut oil 'suppositories' (home made) on the days that I dont use the Revaree. (Inserted before going to sleep at night, so it doesn't drip right out!)
0 -
TriplePositiveP, it took years and years for me to give up. I had vaginal atrophy in my 50's that Vagifem cured. It got expensive so I cut back and atrophy returned. On and off OK for more years. Then cancer. Chemo and estrogen suppression. I'm 70 now. 20 years of struggling with this. There were good periods. Some of it also has to do with my shaky marriage. I wouldn't give up after three years. You have to be consistent and relentless with the moisturizers. I did it every night for FOUR MONTHS. I wanted to just skip a night, just once. Nope. Shove something up your vagina every night. Replens and Astro-glide won't do it. Replens has glycerin that causes yeast. Astro-glide is a lubricant, not a moisturizer. They are different. Get serious about it. Using something now and then won't help. You need a plan and to carry it through. Doctors won't help. DH won't help. I still get up every morning and think about how my nether regions feel and go to bed every night thinking about what I am going to use.
AnotherNYCGirl, Revaree is really expensive. Hyalogyn is cheaper and coconut oil suppositories cheaper still. I can't use coconut oil all the time or I get yeast. I need the acid in Premeno Duo (much harder to get now) or Hyalogyn. I bought something new yesterday called Cicatridina.
0 -
Thank you @AnotherNYCGirl & @Jaycee49 for this helpful info. I am going to set up an appt with the gyn I haven’t seen since my hysterectomy in 2016. Female and very nice, so hopefully a better conversation than with the onc gyn who did the hysterectomy and said there was no physical reason why sex should be painful..
0 -
Good idea, TripleP. Your treatments aren't listed so are you taking Tamoxifen or an AI? It's weird to take one of those and also use estrogen but some doctors do it. If not, why not estrogen? It solves everything.
0 -
Has anyone tried testosterone and anastrozole pellet insertion?
0 -
Regarding the question of how long is too long — my gynecologist (who had bc herself) prescribed Intrarosa, and said that I should get some graduated-size devices (sorry, can’t remember what they are called) and work my way up before attempting intercourse. She said if I did not do this conditioning along with the Intrarosa, I would be unhappy with my attempt to resume. So I need to place an order.
0 -
Gussy, I’m interested in this as well.
0 -
HI ladies--I'm new to the board but definitely not new to sexual dysfunction! I had chemo over 2.5 years ago and once treatments were over I visited my GYN to get a baseline of my uterine lining (my idea, not my MO's) before starting tamoxifen. At that time I was dry as a desert. During the exam she asked how my sex life was, and I answered-"what sex life". She said she could see how thin my lining was and told me I should try Estrace. She gave me this article about the American College of Obstetrians and Gynecologists approving vaginal estrogen use BC patients to show my MO and if my MO approved it, she'd prescribe it.
https://www.acog.org/Clinical-Guidance-and-Publica...
This definitely helped cut the pain to a 1-2 on a scale of 10. But I wasn't consistent. I use it every 4 days. My doctor said to use a pea sized amount twice/week which I did but threw in the towel. Then I thought I'd give it a try again and the instructions had said there was a 2 week period of "prepping" by inserting it daily for 2 weeks then maintaining twice a week. This was the answer. I no longer have pain BUT I don't have pleasure. The dose is .01% estrogen. It's been over a year and a half and no change. I talked to my friend last night who is a GYN and he said it's one of the weakest options out there. I'm going to go back to my GYN and ask her what my other options are.
I also want to mention that I didn't use tamoxifen for the first 9 months. My doctors were aware of my decision and were ok for the first 6 months (but I stretched it to 9). My point is, I wanted my body to heal and I wanted to see if I'd get my period back. I didn't. BUT I got my own lubrication back in that time period and I can still feel when I should be ovulating. I know I don't have enough progesterone to actually bleed but I feel my body is working with me for once. But the libido and the nerves aren't there. Is that a menopause thing or a chemo thing?
I have to throw in there that my clitoris has been numb since chemo and I haven't been able to taste since Nov 2016--an enigma for my doctors since I only did 4 rounds of TC. Needless to say, my pleasure tank is on empty so if I can improve my sex life, it would be life changing.
0 -
RE- Female Libido
I'm sorry this is long and most likely rambeling but I am excited about the possibility of this especially since it seems safe to use with BC, but judge for yourself.
I'll start this by saying I am in no means promoting or recommending this product, I just want to share and let you research it if you'd like. I mentioned it once before a few weeks ago but had only just heard of it from a PHD Nurse Practitioner at a Health and Anti Aging Center that happens to be next to to salon that I work at. She told me she tested it on herself and said “it works, it really works" she also said in addition to giving you the feeling of wanting to have sex “it ups the sensitivity down there" I'll take both of those please! I'm not a huge fan of coping and pasting info because I don't want to cherry pick any info, I'd rather anyone that is interested to look up any and everything they can find, but I might try and include the initial info that made me look into it more. I also found a study that tested it on women who lost their libido because of cancer treatments and I couldn't find anywhere that it effected hormones, but do that research yourself. I'm a hairstylist not a Dr or Scientist.
It's a Peptide called PT-141 aka Bremelanotide, the FDA was supposed to make an approval decision in March but I read this morning that it has been pushed to June. I was able to get a RX for it two weeks ago so that hopefully means it was or maybe RX can be written by an MD even during the trial phase. It sounds very promising to help female libido, after a good bit of research myself I feel like the huge male ED companies are/were making it difficult to get this new drug approved. It also works for men but studies show it tends to work better in females. As with a lot of drugs it was discovered by accident while testing for something totally different.
I have to say that it is expensive, very expensive, $350(but there are possibly other options). It comes in injection form which you have to do yourself, yuck!! But you use a tiny needle and it barely goes under the skin in your belly fat, subcutaneous is what it's called. A $350 vile has approx 20 injections, its injected on an “as needed" basis, not quite spontaneous but whatever, I'm desperate! Supposedly it takes a few hours to feel the effects, but they can last as long as 72 hours, OUCH!! I'll settle for an amazing 4 mins please and thank you
I decided to take my chances and order it off of the internet, I KNOW, risky! I looked at 100 sites on and off for weeks until I just picked one and ordered it. I paid about $40 for the peptide(powder), the liquid solution you have to mix into it and 10 needles. There is a YouTube video that shows how to mix and store it. It actually came from a company in Tampa, just down the road from me, received it in just one day. Wouldn't feel comfortable telling you the site I purchased from until I use it myself. Any online place that sells it must for legal reasons say “ Not for human consumption" since it's still considered in the experimental stages just to cover themselves. That was scary for me. It came in yesterday and I'm sure I'll try it but I'll need to work up the courage. I'll let you know if it's the answer to low/non exsistant libido or not when or if I use it. 🤞🏻🤞🏻🤞🏻
This is the initial info that was sent to me...
No sex drive? Would you rather be doing laundry?
It is estimated that 43% of women suffer from female sexual dysfunction. It is also estimated that 30 million men suffer from ED (erectile dysfunction), with incidence increasing 2-3 fold between the ages of 40-70. Low sexual desire tends to lead to relationship distress and anxiety.
The most common method of treating male sexual dysfunction include medications such as Viagra, Cialis, and Levitra.
Unfortunately, for women, the options are more limited.
However, a peptide therapy called Bremelanotide has been reported to aid in sexual experiences for both men and women.
Research Links:Unlike Viagra and other similar medications, it does not act in the vascular system, but directly increases sexual desire with the nervous system. It stimulates and activates the dopamine hormones that happen to play a major role in sexual motivation. Dopamine is a known compound in the body, it's a neurotransmitter that stimulates performance. When you have low levels of dopamine, your libido is lowered.
Recently, the FDA accepted the new drug application filing for Bremelanotide. This medication is now available at LivingYoung Center by prescription.
All the best,
Dr. Carissa Alinat
Nurse Practitioner0 -
Twills, I was on the edge of my seat reading this! I am both excited for you and nervous as hell! I will be following to read everything you report. Good luck and keep us posted!
0 -
runor, that’s how I feel too lol. I’ve never been a risk taker, this feels so bizarre to even consider doing. I’ve also never been a sharer but for the love of Pete, this is a really sucky way to feel and if we can help each other we should! I actually saw the Dr yesterday that prescribed the stuff for me and wanted to confess that I got the bootlegged versionbut I just didn’t have the guts.
I’m not sure if I’m more scared of it working or not working lol and I’m not sure when I’ll try it, I just had fat grafting done a week ago and I wouldn’t want to pop and stitches!
0
