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Vaginal pain/letrozole/ can I use estrogen cream?

kksmom3
kksmom3 Member Posts: 101

I've been on letrozole for 2.5 years out of the 5 that I am supposed to do. I have been going along pretty ok until the past year. I have had 3 UTI's, and the lack of estrogen has made my vaginal area very sore. It hurts to walk or bend over. I have tried at least 5 different OTC creams/suppositories, coconut oil every time I use the bathroom, and it's just getting worse. Not sure I can take it anymore. I can't even wear jeans without pain. Forget sex!!! I am so sore, I can't even imagine trying that at this point. My husband is very understanding, but no sex life ever again seems pretty damn harsh. We are in our early 60's.

Spoke to my MO last February, she said if it continues, to talk to my PCP about trying some estrogen cream, I know not to take anything systemically. I could tell she was reluctant to prescribe me anything and basically fobbed me off on my PCP. The thing is, my PCP's NP, who I saw for my last UTI, said I was not a candidate for any estrogen cream.

I have an appointment on Monday with my PCP. Of course, I don't want to go off letrozole, that scares me, but I can't spend the rest of my life like this either.

Has anyone stayed on their blocker while doing the local estrogen cream? I have read a lot on this subject and the ACOG says it is ok, as it is local and very little gets absorbed into the bloodstream.

I don't know what to do! For what it's worth, fortunately.....I was originally diagnosed with about 6 mm's of DCIS, but pathology revealed a 3.2 mm tumor of IDC. I had a lumpectomy and rads. No chemo. Clean margins, no node involvement. Grade 2. I should be at very low risk to recur. Maybe 2.5 years of letrozole will have to be enough. I am so torn.

I'll talk to my PCP tomorrow and see what she says. Meanwhile....any words of wisdom.....or a product that has worked for you?

Comments

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    Kksmom, my situation is not as severe as yours but I was also having dryness and pain. My issueswere caused by post menopausal changes but were still aggravating to say the least! I talked to my family doctor and he recommended Vagifem, stating that the amount of estrogen that is absorbed into my bloodstream is negligible. I've been on it for about six weeks and I feel like my premenopausal self. The big difference between our diagnoses is that I am hormone negative and you are hormone positive. And that may make a difference in how receptive your caregivers are to recommending anything containing estrogen.

  • veeder14
    veeder14 Member Posts: 268
    edited July 2021

    I was using Estrace Cream before being diagnosed with BC, and continued to use during the initial treatments. Then when I got assigned a MO I asked and she ordered it for me saying it doesn't go systemically. I use it very sparingly though, maybe one dose every three months. Just enough so I'm not miserable and itchy, etc., The prescription is for use 2x/week but I'd never use that much again.

  • findingoptimism
    findingoptimism Member Posts: 31
    edited July 2021

    I have experienced almost exactly your situation, except for me it was vaginal infections instead of UTI. I was finally prescribed estrogen cream and it has been amazing. I had a couple weeks of stomach upset but it was worth it! The joy of sitting down! I had done some research and there is no strong evidence that it increases recurrence risk. My gynecologist was very determined not to prescribe it, despite my oncologist approving it. Overall, I would strongly recommend it. I use a pea sized amount 2x per week and my problems were gone after about a week.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021

    You might ask your doctor about a prescription cream called Intrarosa that is believed to be (likely) safer. It is prasterone, some sort of precursor to sex hormones, and it is expected to stay local.

  • gb2115
    gb2115 Member Posts: 551
    edited July 2021

    I used compounded estradiol cream for a few months before my recurrence. It helped a lot but when I came off the tamoxifen I didn't feel safe using it anymore. They say it barely gets absorbed but my body is clearly trying to kill me for some reason. When the dust settles after chemo I might look into the laser therapy for atrophy.

    Feels much better off the tamoxifen though.


  • ladyc2020
    ladyc2020 Member Posts: 87
    edited July 2021

    my oncologist gyno performs several procedures to help with these really difficult challenges - vivive is one and the o shot is another. They are not just for sexual pleasure. I am considering these options myself. But they are not covered by insurance My dr does give a 25% discount to his cancer patients.

  • wallycat
    wallycat Member Posts: 1,185
    edited July 2021

    Vaginal atrophy is not just for cancer patients. The older women get, the more likely they will have some degree of it, and it usually gets worse, never better unless it is dealt with. Add cancer treatment, and it just makes it all worse. There are several threads floating around on this topic (sexual mojo, atrophy, dryness, etc...) so you can search on some of those types of terms and hear what others have posted.

    For myself, I was happily going along with atrophy well entrenched, but coconut oil and olive oil kept things at bay. Then one very stressful year went by and fast forward to feeling the need to pee CONSTANTLY. I was tested for a UTI--nope. It was my bladder being affected by lack of estrogen. My onco said NO to vaginal cream but she was fine with vaginal inserts. There are generics now to the traditional Vagifem; there's a pearl you insert manually (Imvexxy) available in 4 and 10mcg and there's the Estring, which you insert for 3 months and forget about it (silicone that dispenses approx. 7-8mcg daily). She was perfectly fine with that.

    I started with Imvexxy and then moved to the Estring. I switch between the two so that I can cut back on some of the estrogen. LIFE changing. I can leave the house.

    A doctor can rationalize someone doesn't "need" sex, but they cannot rationalize letting you live in pain so you can't walk, or having misery with bladder issues.


  • kksmom3
    kksmom3 Member Posts: 101
    edited July 2021

    I saw my PCP. She put me on estradiol cream 0.01%. I am to use 1 gram daily for a week, then 2x a week thereafter. I am aware of the risks, but QOL means a lot as well. I'm going to only use as little as possible once I get to feeling better. 3 nights in and I do feel a bit better. I see my MO next month. I mentioned this problem to her last Feb., and she told me to ask my PCP. She obviously doesn't want total responsibility. It's likely outside of the Standard of Care. I will tell her in August, not going to hide it. Maybe she'll have a different idea. Sex is impossible, heck I just want to not be uncomfortable 24/7. If I could get back to sex again, that'd be great, but right now, I just want to not feel irritated down there all the time.

    I really wish more studies were being done on this. I'm aware of the study from 2016 that says it isn't proven that this is a risk. BUT YEAH... nothing like rolling the dice.

    Wallycat, any idea why your dr said no to the cream? Is this dosage too high? I'm glad it's working for you. I have 2.5 years to go on letrozole. I want to stay on it. Trying this........ I pray it works.

  • kbl
    kbl Member Posts: 2,637
    edited July 2021

    kksmom3, I am almost where you are. I was on Estrace before diagnosis. It was a Godsend. I’m almost to the point of saying to hell with it and getting back on it. I did only have to put a dab on twice a week. I’m not in pain regularly, only when I have sex. I want to enjoy it again. I just can’t decide yet. I’m trying one more recommendation starting tonight, which is Hyalo-Gyn. If this doesn’t work, I will talk with my family and see what they think.

  • trishyla
    trishyla Member Posts: 698
    edited July 2021

    Just a word of caution on Intrarosa. I got a prescription from my gynecologist three years ago for exactly the problems each of you are describing.

    Does it work? I have no idea, because I gained 15 pounds in less than three weeks when using it. I stopped it, shoved in a drawer and haven't touched it since. What a nightmare. Still working on dropping that weight.

    Bottom line? I would never, under any circumstances, recommend it. Not worth it. Not in my experience.

    Trish

    Edited to add:

    The great irony is that those 15 pounds probably put me at a higher risk of reoccurrence than any topical estrogen would have. 🤨

  • kksmom3
    kksmom3 Member Posts: 101
    edited July 2021

    Trishyla. Wow, that's crazy! I would have thought some estrogen would have been beneficial to weight loss. I really have no idea. That is crazy. I already have 20 I gained just from Letrozole and Covid. Working on that as well. I am so sorry it didn't work for you.

  • trishyla
    trishyla Member Posts: 698
    edited July 2021

    Intrarosa isn't estrogen, kksmom. It's DHEA, which is often used by athletes as a performance supplement. I've forgotten what the actual mechanism was, but it was supposed to rejuvenate the tissues and relieve the symptoms.

    Maybe others have had a better experience with it. I sure as heck won't try it again.

    Edited to add: Just checked and found that DHEA (prasterone) is a synthetic form of a hormone produced by the adrenal glands, that converts to estrogen and testosterone.

    Trish

  • kksmom3
    kksmom3 Member Posts: 101
    edited July 2021

    Jumpship, I tried Good Clean Love, Burns me. I'm way past that point, I guess. Thank you, though.

  • wallycat
    wallycat Member Posts: 1,185
    edited July 2021

    kksmom3, yes, the reason my onco doesn't suggest the cream is because the dose/absorption causes the systemic estrogen to be too high (pre-menopause levels). I doubted her, but a friend of mine (no cancer) went on it and had her blood checked..shocked at how high her estrogen levels were once she started it.
    Even on the 10mcg 2xweek Imvexxy/vagifem, I had relief within 2-3 weeks.


  • FGodmother
    FGodmother Member Posts: 32
    edited July 2021

    I am metastatic and strongly HR +. I asked my MO for help for sore labial tissues and vagina. She gave me estradiol tablets to insert vaginally every day for two weeks, then twice a week thereafter. She says it will not cross to my bloodstream. It has made a huge difference! My PET scan was clear, and my tumor markers are still headed downward, so I trust my MO that the estradiol tablets are not entering the bloodstream.

  • kksmom3
    kksmom3 Member Posts: 101
    edited July 2021

    FGodmother, that is good to hear! Wallycat, the 2016 study showed that estrogen levels increased at the 2 week mark, but that was because those tissues really soaked up the estrogen. When they rechecked later, and the tissues had healed up a bit, the estrogen levels had dropped. That was the the gist of it, anyway.

    Still wish there were more studies being done on this, it affects so many of us. It can't be that uncommon! I'm definitely not afraid to talk about it, but too many women suffer in silence, and I just don't get why? It's so uncomfortable!!

    At any rate, it has been 4 nights worth of treatment and I'm feeling less sore. I'm hoping that I can keep it at bay with just a little bit of cream here and there, I'm definitely not planning on using tons of it forever.

    Thank you for your input!!!!!!!



  • joules44
    joules44 Member Posts: 52
    edited November 2021

    Hey there! I recently switched from Tamoxifen to Arimidex and all of my symptoms are worse than before. I have been using Hyalo-gyn but it started to burn after several months so I switched to Good Clean Love and that burns even worse. Now I’m getting recurrent UTIs. I would love to be on some sort of topical estrogen but my doctor won’t even have a discussion with me about it and literally said she had never heard of Imvexxy. It is so difficult advocating for yourself and doing all the research. It’s so hard to know what to do. I will be getting a new oncologist however. I at least need someone who will listen.

  • kksmom3
    kksmom3 Member Posts: 101
    edited November 2021

    Joules44, I think the arimidex will be worse for you. Maybe go back on the tamoxifen? I still hurt even after using the estrogen vaginally since July, but I'm going to step it up for a bit and see if it gets better, I had gotten a bit better, though. Just got over another UTI and yeast infection. This SE just sucks.

    This gynecologist mentioned the Mona Lisa laser treatment. She gives a discount to cancer survivors, insurance doesn't cover it, which is wrong, but it'd be $1200 so not cheap. I see her in 2 months, I'll try and wait till then. Joules, how long have you been on the blockers?

    I think it's a good idea that you talk to a different oncologist, This estrogen suppository/cream has been shown to be safe. Very little is absorbed systemically. We all have to make our own choice. I just couldn't live with the pain anymore and I still hope to resolve it completely.

  • Mememee
    Mememee Member Posts: 33
    edited January 2022

    Hi kksmom3

    I have been on letrolzol since Sept 2021, after trying anastrozole for 3 weeks (gave me a bowel blockage). Back in 2016 I had a hysterectomy for uterine cancer, after I started having issues with sex. Every time I would bleed afterward, and it got progressively painful.

    Letrozol has made made everything about my vagina worse, which I didn't think was possible (dry, bleeding, discharge, atrophy etc). I now use estradiol vaginal inserts, its a small tablet you insert 2x week after completing the initial dosing. It does help, mind you, my vagina doesn't feel like it's 20 again, but it's better. My onco said it is not absorbed systemically so he okay'ed it.

    Someone mentioned the Mona Lisa Touch to help with vaginal rejuvenation. The FDA has not approved it for vaginal use and has issued warnings to the company that they cannot market it for vaginal use as it is dangerous. But given the side effects of AI, I wouldn't judge anyone for trying it. Here is an article about the FDA warning I mentioned. https://www.nytimes.com/2018/07/30/health/vaginal-...

    Sex during breast cancer treatment (incl while on AI) is difficult. I have an amazingly good husband, but like you. Given I am not even 50 yet, I don't want to give up on my sex life yet. Last visit to the onco, I asked the nurse for other options to help with sex, she didn't want to talk about it, but did hand me a pamphlet that discussed different lubes, lotions to use, vaginal exercises to do. We now use these exercises as a way to increase the intimacy in our relationship.


    Good luck!

    Mememee