help! vagifem no longer working :(
Forced medical menopause at age 31 (first with Lupron, then ovary removal due to cancer/BRCA1). In the beginning, using vagifem 2x/week worked amazingly. No pain or dryness. Over time, I had to go to 3x/week (highest safe frequency), and add all kinds of things the other nights: coconut oil, vit e, Replens, Revaree, KY beads, various lubes, etc - if there's a hormone free treatment, I've been on it. I also make sure to have something phallic shaped "in me" - my partner, a toy, or a dilator - regularly, as a pelvic floor PT suggested this could help.
Now, nothing is working. I have to go to the bathroom every 30 minutes to slather on something or it's sandpaper.
My questions:
- Why wasn't I told that these symptoms would get WORSE over time, even while treated?
- For those of you who noticed local estrogen (vagifem, uvafem, estring, ivexxy, intrarosa) no longer working, what else have you done that helped?
At this point I'm willing to stop the toremifene and get on black market HRT. I'm in extreme pain. My gyno and onc are refusing to give me anything else.
Comments
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@elise24601
We’re really glad you posted this, and we’re so sorry you’re dealing with this level of pain. What you’re describing is something we do hear from others who went through early, medically forced menopause, especially at a young age and while on long-term endocrine therapy. You’re not doing anything wrong, and you’re not alone.Many people aren’t told that vaginal and urinary symptoms can worsen over time, even when treatments are used correctly. We’ve heard a lot of frustration from members about that lack of warning. You’re also not alone in finding that local estrogen or non-hormonal options eventually stopped helping. 😪 Some members have shared that what helped most at that point was having their situation reassessed by another specialist or having a more honest quality-of-life conversation with their care team.
We can’t advise on changing or stopping treatment here, but it’s reasonable to keep pushing for support, second opinions, or referrals if your current team isn’t addressing how unlivable this feels. Thank you for trusting the community with something so personal — you deserve care that takes this seriously. 💜 Here for you!!
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Thank you, mods.
Since I've posted on a few different online support forums, I've gotten two really good suggestions from other patients who say the following helped them, but my gyn/onc are refusing to listen to me.
These are the two suggestions:
- Adding an estrogen/testosterone cream to my regimen (not to replace vagifem, but to supplement it)
- Adding Osphena (which requires quitting toremifene)
My challenge now is how to get my team to agree to this. What should I do? If they say no, how do I find a provider who says yes? I really appreciate any direction you can point me.
I am feeling legitimately suicidal about this.
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@elise24601, do you have any upcoming appointments scheduled with your ob/gyn and oncologist, where you can discuss your concerns?
It may be helpful to refer to the following articles when discussing next steps: , , (your oncologist might be more agreeable to adding topical testosterone if you're a candidate for switching to an aromatase inhibitor).
If your current team is unable to provide a reason or alternative solutions, and you feel as if your concerns aren't being heard, we recommend reaching out to your primary care provider for referrals to second opinions. Your well-being and quality of life are valid concerns that should be addressed.
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Thank you. Neither my gyno nor my oncologist are taking my concerns seriously.
I have just ordered Rx estrogen cream online from a pharmacy and will be using it regardless of safety concerns at this point. I am so angry that I have been failed by my team after being very clear and assertive about my needs. They have driven me to seek alternative and potentially risky means to get the care I need.
Re testosterone - is this something I can add, even though I'm on Toremifene? I was on AIs for many years but they destroyed my bones (severe osteoporosis) so I was switched.
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Testosterone alone does not appear to pose a risk, but if it is aromatized into estradiol, then it becomes risky for hormone-positive breast cancer patients. That is where aromatase inhibitors come into play to prevent that transition.
Your medical team can assess your personal risk based on your history. If you're not happy with your medical providers, we do strongly recommend consulting with additional providers until you have a team that you can trust.
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We wanted to also add that your cancer center may have a social worker or patient navigator that can help provide additional resources for you, especially if you've been feeling increasingly frustrated with the lack of responsiveness or dismissiveness over your concerns. Here are some tips that we hope can help you communicate more assertively with your team:
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