r/endometrialcancer • u/Sparkler888 • 11d ago
Vaginal Cream Recommendations
Hi everyone, I just went to my six month checkup and my surgeon recommend that I start using some kind of estrogen topical cream to help with the dryness and atrophy. She said it is fine to use it and it won't affect the cancer recurrence. I was wondering if that's what other doctors think also? Just looking for maybe other people's opinions. She also said I can just start with regular over the counter vagina cream or lubricant. I wonder if anyone has recommendations that they like. Thanks!
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u/Mercury2468 Stage IA 11d ago
I've gotten contradictory advice on this from 2 different doctors at the same hospital. One said estrogen cream was fine, the other said no way because the vagina is the most likely place for recurrance so I'd be feeding estrogen right to the cancer cells. No idea who's right, I'm curious to read what others have been told.
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u/Prize_Echidna_5128 11d ago
I had my 5 week post op at a major research university and my gyn/onc said she would be totally comfortable, putting me on estrogen cream once I am further along in the healing process.
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u/Glittering_Hurry236 11d ago
After my 8 weeks post op I was rx vaginal estrogen as atrophy was starting ...
I front loaded the dose as prescribed 2 grams a night for 10 days then 1 gram a night for a week then use 1-3x a week/ as needed.
I tinkered with the dose as ONC wanted me using the very least amount possible that still worked to have a fully functioning non-atrophied vagina.
3x a week was too much. Scary my boobs got larger - and I was hungry. I knew it was getting into my system (but that said the vagina was LOVING IT!) lol
2g/week less hungry. Vagina perfect. At my one year postop, the oncologist said there was so much in up by the cuff they needed to use the long Q-tip to scrape some of it off that I was using too much and to try 1 g a week.
I've been at 1g a week since May and still all good!
The nights I don't use the estrogen. I will use Revaree once or twice if I remember.
Everything might burn at first as you're in atrophy already. You'll get thru that by night 3 with the estrogen. How badly the vagina needs estrogen is not even fair --
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u/Sparkler888 11d ago
Hi, just wondering how do you know if its working or not? Like what are the signs of atrophy that you have?
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u/Glittering_Hurry236 11d ago
I never had any signs of atrophy because I was on vaginal estrogen, eight weeks postop, but the doctor could tell by looking inside the vagina that there were white spots where it was supposed to be
Pink. My cuff was also taking a little longer to heal than it should and the vaginal estrogen sped up that healing.When I went 10 days -2 weeks without using it to see how much I actually needed or how long before symptoms kicked up - about 10 days without estrogen I could feel the TP when I wiped, I can't feel that on estrogen. The skin isn't sensitive and drying out. 10 days without and my vagina felt the steps I took; vaginal walla becoming thin in there and dry.
I was having trouble getting the Revaree IN (it's a small suppository). Elasticity was starting to wane vagina was too small again - had to go back to estrogen every other day to get it back in order. I've had to use dilator therapy because it gets too tight in there.
The women on the hysterectomy board so excited for their hysterectomy is truly mystify me because this has been fu/$;ing horsesh*t ---
It's trial and error. How do I know the vaginal estrogen is working because the vagina feels healthy, it feels like it used to before the surgery, it will never be the same. It's not as slick and luxurious, but it's close and when I'm not on the vaginal estrogen. It is not even close.
Losing your cervix is NO joke and you ovaries - 🥺 awful.
But. It was cancer. We had no choice.
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u/Sparkler888 11d ago
Thanks, I definitely feel the difference but I wasn't sure if everyone feels the same way. I'm scared of being intimate because of everything that's happening.
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u/Glittering_Hurry236 11d ago
Yes. It's terrifying. I had to go to pelvic floor for 6 weeks from 8-14 weeks post op. Then use dilator therapy - PF specialist made exercises for me to do.
It's all been awful. I mean it's our vaginas - and our sex lives. But again cancer is gone (don't come back)!!
But yes you notice when you're estrogen down there is stopped within about 7-10 days.
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u/Sparkler888 11d ago
Its been like 8 months for me and I haven't done anything. Was waiting for the checkup first. Is it too late to help the atrophy?
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u/Glittering_Hurry236 11d ago
No it's not too late. The medication is front loaded initially which is the 2 grams a night for 2 weeks. Then 2 gram a night for the 3rd week. Then 1-2x a week 1 gram.
If you use 1 gram a night IN atrophy it won't work - you have to get past it which it why this medication has a heavy front load saturate the area with the estrogen.
Even with just 1 gram a week I still apply it the same as when I used 2 grams. All the skin around - apply the cream to the vaginal opening, vulva, labia, clitoris and skin btwn the vaginal opening and anus.
We do NOT have any estrogen in our bodies - this cream is all we have to keep everything down there as well as it can be.
For me. Not using it - didn't work. Vagina tried to go atrophy - that's a no. It's scary to use it yes. But we have to weigh quality of life in some ways. I don't wanna get a urinary tract infection that turns into a kidney infection that turns into a blood infection that turns me septic because I am in full vaginal atrophy.
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u/Sparkler888 11d ago
wow i didnt think vaginal atrophy could cause urinary tract infection. no doctor said to me that could happen.
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u/Glittering_Hurry236 11d ago
Yes. It was one of the issues my GYN brought up to me at my 8 week visit - I saw my ONC at 2 weeks 6 weeks post op. My GYN at 8 weeks. I needed silver nitrate on the cuff and he said to take the estrogen the ONC had rx me at 6 weeks. I was too afraid to take it --
My GYN said it would help with the cuff healing and that it prevents UTIs and many many women end up dying post menopause from UTIs that have become septic due to the atrophy. And I was like I don't even know what you're talking about and he said you are beginning Vaginal atrophy and because you're ovaries are gone it is not going to turn around your oncologist prescribed the estrogen, which means he's comfortable with it and I'm comfortable with it. You were Grade 1 Stage 1A and I'm comfortable with you taking it. Atrophy is beginning ... (white spots inside the vaginal canal) and it was extremely tight (losing elasticity without estrogen).
It's why people take HRT. The body loves its hormones -- I'm super sad mine are gone. So sad .. but at almost 55 I was heading into the ditch sooner rather than later but still ..
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u/Sparkler888 11d ago
My oncologist doesn't mention these things. I feel like she don't tell me enough about what could happen in the aftermath of a hysterectomy. I have to bring up everything I'm concerned about but I don't know everything to be aware of!
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u/Bizzymammabee 11d ago
My gynonc said a low dose would be ok but I opted for no. I have tried a couple different things. Using Reveree plus 2x a week and I use organic coconut oil daily after my shower. So far this works best for me. It comes down to trial and error.
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u/Antique-Anteater-988 11d ago
My tumor was + for hormone receptors so I can only recommend non-estrogen products.  My GYN onc recommended Revaree. Several other ladies in this community have recommended this product as well. I’ve been hesitant to try because of the cost.  The other product line he recommended was Ah Yes which will be on my list to try if necessary. I’ve been using Replens Long lasting version and have found it to work fine. Biggest complaint is that it can be a bit messy.
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u/Comfortable-Net8913 11d ago
My oncologist reluctantly agreed I can use prescription vaginal cream, but apply just a pea size amount only at the entrance to reduce systemic absorption. I had uterine cancer stage 1a. I am worried about cancer recurrence so still debating.
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u/Sparkler888 11d ago
Yes, I feel the same way but my oncologist doctor pretty much said it is safe to use. I did ask if anyone she knows has cancer recurrence from using the topical estrogen and she said no. Only thing she remember anyone having is allergic reaction.
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u/Comfortable-Net8913 11d ago
Has anyone been allowed by their oncologist to use testosterone, applied topically? I was told no.
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u/DaisyCutter9999 10d ago
Evidently they didn’t do hormone receptor testing during the pathology on my tumor (grade 1 stage 1A, no spread outside the little polyp that encased it). The theory is that it was estrogen receptive since my use of vaginal estrogen cream for a few months preceded the sudden post-menopausal bleed that led to my early diagnosis. That’s different from theorizing it caused the cancer, which is supposedly not possible, but given how sensitive I was to the hormones in birth control pills it’s not a crazy theory.
I stopped using the cream after the bleed, and I won’t be using any hormones again in any form out of an abundance of caution. (Didn’t use any HRT, just birth control pills pre-menopause.)
I’m using Hyalo Gyn at the recommendation of my gyn, and so far so good. I supplement it with coconut oil and sometimes Replens on the external parts, and while the results in that area aren’t what they were from the estradiol (which really did plump things up nicely) it’s still an improvement.
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u/Sparkler888 10d ago
Do you use coconut oil inside the vagina or just outside? I'm so confused about what to do exactly or what products to use. I used birth control pills too when I was younger. Could it be one of the causes of endometrial cancer?
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u/DaisyCutter9999 10d ago
I use coconut oil outside to keep things comfortable, but I do use it to lubricate the HA suppository so some goes internally every 3 days as well. I’ve had a few pelvic exams since I started doing that, and all is well so far.
I had such a bad time with birth control pills that I stopped using them 25+ years prior to my cancer diagnosis, so I think it’s unlikely that was a contributing factor in my case. I’m still wondering about the estradiol cream though despite the conventional wisdom saying it can’t get into your system. I don’t understand that since it’s inserted into a mucous membrane, but I’m not a medical professional or scientist so frankly I’m just going by vibes and not research.
Regardless, no hormone application of any kind for me.
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u/AngelMom1965 11d ago
My PCP told me that I could use estrogen cream. I checked with my gynonc, and she said no. She recommended Good Clean Love with hyaluronic acid (HA)for a vaginal moisturizer (to be applied every 2 to 3 days), and then either Uberlube or Slippery Stuff for a lubricant for use during intercourse (if applicable 😂). She said the key is to find a moisturizer with HA.
She said if that doesn’t work, we could discuss an estrogen cream—but she would prefer that I not use it if possible. I just started using these products, and want to give it a few months to see if they work.