I WANT MY MOJO BACK!
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Good morning,
I have gone through and am still going through many of the same things discussed here. After a Stage III diagnosis nine years ago, I was on Tamoxifen until 2020 when I had a second estrogen-positive breast cancer. Since then I have been on Letrozole. The effects are much worse than from Tamoxifen. I experienced thinning hair, increased joint pain, less energy, and lots more vaginal drying, itching and general discomfort. Miserable!
A year and a half in, things seem better, maybe. For the hair issue, which was my first concern, I bought an iRestore helmet after reading comments about it: I use it every other day unless I'm away from home. The increased hair shedding I had at the start of Letrozole has stopped, and I've noticed some hair regrowth. The results aren't dramatic, I've never had thick hair. But I no longer feel that I am looking older each day and wanting to hide away. The hair situation is not worsening, and that is a relief. I also use Viviscal every few months and take Biotin.
For the vaginal issues, I tried Replens recommended by my gynecologist. Last summer, I had a miserable time with dryness and itching. It was making me crazy, and I did not want to do anything with my husband for fear of becoming irritated down there. I finally talked to my oncologist, who prescribed Intrarosa. It took a couple of tries until my insurer approved it. It was not on the formulary. Even with approval, I still pay around $85. After reading different comments here and elsewhere, I became hesitant about using it. Instead, I stuck with Replens every two to three days and rub a little BioOil on the outside area after showering. I read about Reveree and tried that for about a month,but I did not notice any difference from using Replens. It was all still just meh.
I saw my oncologist recently and again discussed Intrarosa. He suggested that I give it a try and assured me that he would not prescribe something if he thought it might undo the progress I've made. So. I have started using it this week. So far, I have not had any problems with it. I read complaints people had about dripping, but it is no worse than when I used Replens or Reveree. In fact, that seems less of an issue with Intrarosa. That dry feeling seems a bit better so far. It is too early to know whether there will be any real improvement or whether I'll have side effects that make me quit using. Weight gain would be a deal breaker! I already struggle with my weight. I would appreciate hearing from anyone who has had a good experience with Intrarosa. I'll update on how it is going.
Here' s hoping for good days for us all
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Great thread girls,
I'm here because after 4 years of BC treatment and LETROZOLE which is an aromatase inhibitor, I have realised that I have sexual dysfunction. Why only now? Well because I am single and through the cancer treatment have not been sexually active. But a month ago, I got lucky, or so I thought at first since by the end, I didn't feel so lucky. The gentleman was a total gentleman but the sex was a disaster. for me, this was the first time I'd slept with a man in their 50s so that was a new learning curb then on my part...
There was NO way there would be any intercourse. It felt like there was a wall up in my Vagina and Sex was excruciatingly painful. We messed around a bit and while that was nice, It was really hard for me to feel aroused. I'm pretty sad about this. This encounter was a one night fling, but now I'm not sure I want to try that again for fear of a repeat with someone new and fear of disappointing sex. (don't read me wrong) I'm not out getting laid all the time, it's just before Cancer, this was an area where, even though sex was few and far between, when I did have a romantic interlude, it would be pleasurable, not painful and upsetting. Went , to the doctor and my vagina is a mess. My outer and inner labia have fused and I have rectocil prolapse pretty badly. Doctor said my vaginal skin was like rice paper and even just touching it made it bleed. Doctor does Mona Lisa treatments, (vaginal lazer rejuvination) but even the thought of that is really scary and it's expensive. Oncologist gave me permission to use estrogen supositories but really? I spent all this time eradicating estrogen, now I'm going to put it back in. He also took me off Letrozole and put me on Tamoxifen for my last year.
The only issue I can see so far with the Tamoxifen is I've been all over the map with my moods. Totally lost it on my boss yesterday and stormed out of work. (not to worry, I have a highly protected job) but looks unprofessional to say the least.
Feeling pretty alone today.
Thanks for listening to my rant.
indahood
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indahood - I was taken off estrace when I was diagnosed. I use a vaginal moisturize every other day, but having no estrogen in my body makes me feel like I’m fighting a loosing battle. I’m in my mid60s, so my sex drive waning. But still…
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Indiahood, I commented on the AI thread where you posted, but was going to go back there and direct you to THIS thread, so I'm glad you already found it! I'll repeat my suggestion here that you get referred for a pelvic floor physical therapist to help rehabilitate everything. If you're not crazy with your current moisturizers, I've found coconut oil/VitE suppositories really helpful for moisture (just pop one in when I go to bed at night). There is pretty good data about the topical/vaginal estrogen creams having little/no exposure in the rest of your body (which is where the risk would be after a hormone-receptor positive breast cancer), so if your oncologist is OK with it, you might consider it.
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Indiahood - my oncologist prescribed vaginal estrogen for my and I was strongly ER/PR positive when diagnosed. It helps.
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Gosh, I'm really not sure where to post because I have multiple concerns! I am (celebrating) 10-year survival s/p Stage IIB ILC treated with Taxol followed by A/C (Adriomyacin); double mastectomy, reconstruction, and Letrozole x 5 years! I have undoubtedly experienced vaginal dryness & pain to the extent that my husband and I no longer have intercourse ( I am 58 and he is 67yo - there is no ED issue) I really used to enjoy intercourse and I don't know how to fix the dryness issues without the introduction of estrogen. I have tried all of the lubricants that have been suggested with little help. I ALSO underwent vaginal restoration via the JULIET procedure. It sounds like I need to have a conversation with my OB but that procedure is also painful! Thank you for your inspiration ladies! I COMPLETELY trust your experiences and I look forward to continued collaboration with you! It's been a long time since I've been active again and I look forward to reconnecting with my "sistas"!!!
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Dear c-squared,
Welcome to Breastcancer.org, and thank you sharing your experiences and reactivating this popular and helpful thread. We're sure you'll find it an incredibly supportive space!
If there's anything you need help with or have any comment for us, you can contact us at any time. We're always here!
Best wishes,
From the Mods
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Congratulations c-square on 10 years survival!
I had Mona Lisa Touch procedure after menopause ( before breast cancer). I didn’t find it very effective although the reviews indicate other women have had success. I have read about vaginal dilators and vaginal dilator therapy, but have not used it myself. Maybe your GYN is familiar with it.
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I am so glad to find this thread. I am a 9 year Thriver/Survivor and have not had intercourse with my husband in well over a year. I am estrogen depleted. I was on tamoxifen for 5 years and have been on Anastrozole for 4...the anastrozole is what dried me up. My GYN says you have no blood flow to your vaginal area...I guess due to lack of use. Hard to use when you aren't' aroused. I have tried multiple methods of lubricants with no success. I am grateful I have a husband who is 69 and who loves me no matter what. Funny, I try to get a pulse on my girlfriends and their sex lives...many are not very sexually active anymore, but very much in love. Cancer sucks, but I'm alive and loved. Still, would love to make love to my husband again, like the good ole' days. (winking emoji)
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My oncologist allows me to use vaginal estradoil as it does not circulate in the blood. I've been using it for a few year
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My husband and I set up a sex schedule. We don't deviate even when it is hard to stick to the schedule. We had some speed bumps getting started. I visited an Urgent Care where the doctor prescribed I use more lube. Lots of laughs a few days later after the pain subsided.
The schedule ended up being a "win" for both of us.
We are dating again.
We are communicating again.
We are working hard to put more effort into understanding each other's needs before reacting.
We are laughing together again.
We are sexting again (like two older people).
We are having lots of sex again.
We are cuddling again.
We are touching again without sex involvement.
We are having fun again.
We are working hard together to stay on track. I am crossing my fingers we continue to have luck with our schedule.
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Awww, how beautiful! All the best for many happy times with your hubby.
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I posted about this on another thread. I am hearing bits and bobs that the study that said hormone replacement therapy was akin to death to women, might have been a shit study with shit conclusions that resulted in shit treatment for millions of women who were suddenly, on the basis of horribly flawed research, denied hormones. Of course, this is just snippets and suggestions I am finding. I have not come across any major medical names that support what I'm hearing. They might be out there. But I haven't found them. I am just hearing little drifts of pushback on the wind, pushback against HRT being swept off the table as bad, bad, bad
I guess the question that is rattling around in my head is ... what is going to kill me? Or, statistically, what is most likely to kill women? Heart disease is right up there. Top of the list. We FEAR breast cancer but as far as a killer, it ranks several notches below heart disease. Heart disease still kills breast cancer patients. If you survive breast cancer but die of heart disease, heart disease that might have been prevented with the use of hormones, are you better off? If you have statistically 10 years of life left, you are hormone depleted because of menopause and / or cancer drugs, you would like to have an intimate relationship with your partner but can't / don't because of the physical limitations inflicted on your vagina by age/drugs.... are you really being smart, prudent, balanced and sensible by DENYING yourself the hormones that might make the remaining years of your life better?
Too many women, and I am very included in this, have NO CLUE what our hormones do and why we need them and what happens when we don't have them. We are treated as if female hormones are optional to the life of a female. Are they? They are certainly treated that way. If someone told you that 5 bad health outcomes could be prevented with hormones, but using it might put you at risk of 1 bad outcome, what would you think of that? I mean, many of us took cancer treatments that only offered slim improvement in survival. But we did it anyway knowing that these treatments carried risks too. We took big risks to gain small gains. I wonder if we need to apply this to hormone therapy? Maybe, so we feel better and enjoy the years we have left, we shod consider the potential BIG benefits of HRT, which might be bigger than the risk of feeding a hormone positive breast cancer.
I don't know what to think. I need to understand so much more than I do now. But I have been battling a vagina that suddenly hates me and with the way it's behaving, I hate it back! On the one hand taking HRT might trigger more cancer. Do I want that? No. But then, it might make my bones, brain and heart and vagina feel better and if I have limited years to live, don't I want to live them feeling as well as I can? No easy answers. I am pondering these things.2 -
Runor, I feel you! I managed to conquer breast cancer but at a toll to pretty much every other system in my body. After a Reclast infusion two weeks ago to repair bone loss from the AIs, I am now scheduled for an echocardiogram due to side effects from Reclast. I am always chasing the symptom right in front of me.
I would LOVE to use estrogen cream but my oncologist thinks it's risky. Intrarosa, the DHEA cream, is also contraindicated for women who have had breast cancer. But if I'm on AIs, wouldn't that block any estrogen that could be produced from the topical creams? Gah! It's so overwhelming. I have met with an oncology sex therapist and purchased the dilators and the lubes but I feel like I don't have time to do it all. I exercise everyday to help my bones and hopefully prevent recurrence of breast cancer. I meditate to keep my anxiety at bay. But I also work full time and the thought of adding in yet another thing with sex therapy 3-4 times a week (when honestly my libido is so low sadly) seems daunting. But at the same time, damn, it would be great to be having sex again. To WANT to have sex again. I don't know. I'm just venting here. My sister, who has never had breast cancer, is in menopause and I don't think she cares if she ever has sex again. She uses estrogen cream only to prevent recurring UTIs. I would love to be free of wanting to be a sexual creature again but I still want that in my life. Having a sex life would help me to feel like a whole person again.
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I find it so interesting that there is so much variance from oncologist to oncologist on what they permit patients to take/use. I was ER/PR+ and my oncologist allows me to use vaginal estrogin as he said it does not circulate in the blood stream. I use Imvexxy suppositories. It is estradoil. It is great for vaginal atrophy.
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I got my estradiol script from my gynecologist. I understand oncologists’ concerns, but I think gynecologists are more knowledgeable when it comes to that. I went on for quality of life. I’m also Stage IV. I’m not sure what I would have done if I was an earlier stage. I totally understand the hesitancy.
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I keep hearing the words 'allow', 'permit'. Cancer did NOT take the right of ownership away from us. We live in our bodies, we must tolerate and manage our bodies. The cancer was mine, not my oncologist's or surgeon's or anyone else's. At the end of the day I am trapped alone in my own head with the thoughts and fears that crash around like bowling balls falling out of the back of a truck. It may make my onc feel better to tell me no no no, you can't have any estrogen. He may feel he's doing 'what the book says'. But to hell with his feelings! I am not a book! I am a person! I have a life that is worth living! And I DO NOT relinquish one inch of my personal autonomy to a doctor who permits, allows or IN GRAVE ERROR thinks that is his/her authority to wield !!!!! AAGGGHHHH!!!!! My docs are guides and I appreciate their input but at the end of the day, if I want to not wince and bleed every rare time we attempt sex (which I am uninterested in) there is not a person alive on planet earth who is in any position to deny me any drugs that might help we with that, if that is what I want. I am the boss of me! My god, how and why do we forget that?
In the past I too believed that taking hormones was a one way trip to metastatic breast cancer. Is it? Seems more and more evidence says that what we used to know, what we used to believe, what we thought was the truth...was wrong! I need to know more. I want to work out, in my own head, how to think and feel about this issue. Like .... in order to NOT get breast cancer again I am risking heart disease, osteoporosis, Alzheimers and a busted vagina and the sudden death of any intimate/sex life and even have frequent thoughts of divorce because my husband has now just become someone I clean up behind and cook for and I'm not really finding that a fulfilling life calling. ALL THAT is what I accept to avoid a cancer. That might never return. And even if it does is it going to be the most likely thing to kill me? There is SO MUCH MORE to this topic to consider than just if hormones make the cancer come back. Just how much shitty life are you willing to suffer to keep cancer away? For some the answer will be, lots. For some the answer will be quality over quantity. I can't tell anyone how to arrive at their own answer. Hell, I can't even arrive at my own answer! But I do know that the automatic, thoughtless, old style, instat denial of any hormonal relief is unconscionable and abusive.
I too have, in the past couple months, discovered that I get yeast and bladder infections for no damn reason, and feel like I have sandpaper in my underwear all the time. I am miserable. Every step I take is horrible. Hot flashes have made sleeping impossible! And having hot flashes on 36 degree days makes me want to puke. Literally I get so sick in the heat I have to go lay down, I am finished, done, over, fried. Could a hormone give me my life back? I don't know. But I think my doctor doesn't know either. He just does what he's been told. Time to revisit what he's been told.
PS have been applying to my lady bits some smeared on hormone cream that I got before I was diagnosed with cancer. So I've been using the same tiny tube since 2016 which tells you that i have NOT used very damn much of it. To anyone here avoiding some localized vaginal relief because their doc won't 'allow' it ---- SMARTEN UP!! And do some research. The idea that a little bit of vag cream is going to trigger a relapse is now debunked -- get thee some hoohoo cream and fix that broken vagina!1 -
I love when you write, Runor. I hope the cream helps. I know it's helping me. Bladder infections are my worst nightmare. They are so painful, I would do anything to keep them away. There was a time I felt my husband was my roommate. We've been together almost 41 years, married 38. We've had a change in our living situation where we are at our vacation home a bit more. It's in the country. He's happier, which makes me happier. I'm starting to get used to it. Things are better. I wish you could downsize a bit so you're not having to do so much where you are. Hugs. And great advice.
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Runor - well said. I agree its my body and I get to make the decisions. My oncologist used to write my Rx but now my PCP does. When I saw a gyn they wrote the Rx. So you are correct allow is not the correct term. I stopped AIs due to the unbearable side effects. I hope you find some relief. For me it's all about quality of life. Sending. you hugs.
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HRT definitely increases the chance of developing Lobular breast cancer. I am a text book case. However ILC is fairly uncommon, so for most women HRT will be safe - until you fall into the "fairly uncommon" stats.
Vaginal estrogen creams do not increase your chances of developing cancer (there has been no statistical evidence to my knowledge) and are safe to use. I am not an Oncologist nor a gynecologist but I think I have ready every article (in medical and scientific sites) - well... enough to have an informed opinion.
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Runor,
You made some great arguments. My dr talks to me like treatment is always my choice. But I've seen him not to happy when one doesn't follow his advice.
did you ever get a script for estrogen cream? I talked with a new gynecologist the other day for lichens sclerosis. She said it's still a no- no for stage 4. But if quality of life were an issue then could get some if I sign some informed consent paper. It would be a suppository for a low precise dose. But only after I try both the steroid cream for the lichens sclerosus and hylauronic acid suppositories. And lube with sex. It is getting better.
First time in 47 yrs DH is showing less interest but knowing him he just doesn't want to hurt me. Funny that didn't matter years ago. Cancer changed that. Hope to get back to it regularly again.
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I’ve been using the estrodial for over six months now, probably longer. My tumor markers are accurate for me and are still dropping. I only use a pea-sized amount twice a week, I don’t use the full dose. Mine was a quality issue, and my GYN didn’t hesitate to prescribe it, thankfully.
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Gailmary - I have never heard of lichens sclerosis. I had to go look it up. Ewww! This raises the question, is LS the same as vaginal atrophy caused by too few hormones to the lady parts? Is it the same thing by two different names? I guess not since men and children can get it too. Men and children are not suffering menopause, thankfully!
Since writing my above, ranty posts I have NOT gotten a new prescrip for vaginal estrogen cream. I still have bouts of miserable vagina. At times the attack of itch or burn is so intense it makes me drop whatever I have in my hand, grip my crotch while yelling, OH MY GOD! As if a wayward piece of hay has found its way into my gonch and is attacking me. Anyone who has ever had a loose piece of hay assault their vagina will know exactly what I mean. Anyhoo ... after looking up many articles on ways to moisturize one's vagina and reading over and over that one should never use Vaseline on their vagina, I used Vaseline on my vagina. Guess what? It works!
I know that when my daughter was in diapers I would slather her from one end to the other with Vaseline to prevent diaper rash. She suffered no ill effects. So, in desperation I spread a small amount on the itchy bits that were dry and sticking to my underwear. Guess what? Sweet relief! Stopped the itching! Has it solved the painful sex issue? No. But it has stopped the immediate muff misery though. Took a few days of applying to get the upper hand. Now, immediately after bath I rub a bit on the pee flaps because soap is KILLER and I rarely use soap down there because I suffer for it. The only downside that I think of with Vaseline is it seems to create a bit more of a raunchy odour. But if that's because of the Vaseline or because my vagina is slowly decomposing, I am not clear. Try it. It's cheap like dirt . Don't go shoving a wad of it up your vagina, this is just for 'chapped lips'. No kidding!0 -
runor - I was diagnosed with LS shortly after my BC diagnosis. I was having awful symptoms from what I thought was vaginal atrophy and went to see my GYN, who diagnosed me (biopsy and sight). LS is different than vaginal atrophy. It’s a skin condition and external to the vagina. I have steroid ointment and other OTC stuff that I use externally to help manage symptoms. I use a vaginal lubricant for the vaginal dryness.
Have you tried warm water sitz baths to cool your symptoms? Have you tried any of the vaginal lubricants? Sorry your dealing with discomfort
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This just came across my feed, and it was too appropriate not to share. 😆😂🤣
https://www.facebook.com/100000726944934/videos/602613618087826/
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runor, you are correct LS is not the same as atrophy. I described my symptoms to gynecologist on a video visit and she said she had to look. Symptoms didn't match atrophy.
1. Pain with sex.
Feels like papercuts,burning pain. Actually skin is cracking. Could bleed.
2. Itch. Not as intense as I've had, but still, yes itch. Particularly at clitoris.
3. Take a mirror and flashlight and check your crotch! Really Can be a minor areas of white patches or larger areas. Mine was just white clitoris.
Areas of inner labia can shrink and fuse in weird ways too.
Good luck
Gailmary
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hi all. Well I haven’t been on this forum for awhile. I’m considering going on bioidentical testosterone pellet. It’s subcutaneously inserted. Has anyone tried this??
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We're bumping in order to revive this important topic.
And adding this research news:
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Here is a great product for painful sex. (Note: using lots of lube will help extend the feelings of penetration for your partner while protecting you.)
Some of this was very sad to read. Partners not being willing to use toys or sex-aids? What, do you feel inadequate and intimidated by a piece of plastic? There's so much more to sex than insert tab A into slot B. No, using a sex toy doesn't make you a [insert derogatory and demeaning term here]. It makes you a sensitive and caring partner who puts your partner's comfort and safety on par with your pleasure.
Also, the Flat and Fabulous movement is trying hard to battle body image issues by increasing flat visibility, so women will feel less obligated to risk lymphomas and BII for the sake of "looking normal". Absolutely no shade on those women who want breasts for their own personal reasons. But doctors' flat denial and social pressure have pushed far too many women into a decision that they didn't really want - and they suffered pain, autoimmune disorders, and fun new cancer for the sake of other people's comfort.
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10 years and 4 months today since bi-lateral mastectomy, with DIEP flap reconstruction, followed by 4 doses of chemo when aged 47. I'm now 58, living a very active life and loving it. Mostly.
Penetrative sex really hurts, on an eye-watering, f8k-this level, and also causes bleeding, despite trying the Mona Lisa treatment 6 and 5 years ago, and nowadays using what seems like enough lube to float a large whale. After a recent pretty open chat with lovely, caring and very thoughtful bf, I returned to this forum that has already helped me so much. Now learning things I never associated with the cancer experience.
About 4 years ago I started getting UTIs, especially after sex. Bf had suggested I wasn't drinking enough (I only drink water nowadays, hot or cold, out of preference - I just don't like any flavoured drinks). So I made a conscious effort to make myself drink more water. That certainly seemed to help. I never understood why it kept happening, and the doctors were puzzled too. Now I read on here that multiple women have experienced this.
Orgasms were always good, tho never instant like I understand some women experience. More recently they've become so laborious to achieve via sex with my bf, I'd pretty much given up. Not given up on sex - I'm very happy to participate - I love giving, just not for me to be the recipient. I hadn't been aware of how inadequate I had started to feel about it and would often, unconsciously retreat into that feeling during any foreplay, which would just shut everything down in that area. I didn't realise how badly this was affecting me, but again, reading on here has helped. I'm very sensuous and crave touch (definitely one of my top love languages), but when that occurred recently I would unconsciously mentally move away because I knew that what came next would take furrrrrrever, would quite often not achieve the hoped for O, and would leave me drained, physically & emotionally the next day. Now I read here that others experience turning away from affection because of having to "deal" with what potentially comes next. Yup, yet another Ah Ha! moment.
I also have found a phenomenal local physical/massage therapist. Again, about 4 years ago I started getting very bad neck pain. I eventually managed to get an appointment at the PT, and they addressed the neck pain based on the cancer surgery. They felt my torso was being pulled forwards over the DIEP flap belly scar and my neck was trying to compensate for that - think how a vulture looks with its neck sticking upwards over a body leaning forwards - lovely mental image of myself ;). One of the many things they did was to literally scrub my tummy above the scar up to my rib cage with a fair amount of pressure, going across the ways. Oh boy, that felt amazingly good. My body reacted strongly and in the following few days my tummy skin came out in teenage spots - something had been released by that! I now do that scrub to myself on a fairly regular basis, tho can't achieve the level of pressure they did. I also go for a monthly maintenance massage in an effort to preempt any other physical issues or changes based on the body trying to deal with all that scar tissue.
That's probably enough for one post. I've learned so much by what others have felt safe to share, and appreciate the time everyone takes to post. I hope what I've written may also help someone else too.
Sometimes when I read the posts on here, my heart breaks at what the amazing, brave, beautiful cancer survivors have to deal with afterwards. And I have also learned that even now, 10+ years later, while leading a seemingly normal, happy and successful life, I still have moments where I'm overwhelmed by grief for the person I thought I was before cancer, and the life I haven't been able to continue leading, especially on the sex/intimacy/physical side of it. My life changed considerably, and ultimately, a lot of it for the better (very kind & caring bf for one!), but there a parts I still grieve about me and sex.
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