Nov 2, 2021 01:06PM HomeMom wrote:
Why do we need a vaginal dialator? I pushed three babies out of there!
A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.
Posted on: May 5, 2020 12:05PM - edited Feb 24, 2021 05:03AM by Jinx27
Ive been a member for quite some time now and wanted to post about my sexual side effects of my treatment and what Ive been doing to combat them.
I was diagnosed with my ER/PR+ breast cancer and have chosen to take an aromatase inhibitior along with Lupron (ovarian suppression ) injects for the next 5-10 years.
My onco just barely prepared me for all of the changes that I would have living the next 5-10 with lowered estrogen (menopause) as a 30 year old something. She mentioned vaginal dryness but I didnt know that the dryness really meant atrophy! I also suffered from strong vaginal odor without an infection. This also due to the atrophy.
I initially knew something was wrong when I had intercourse and it was terribly painful, I had small microcuts in my vulva and inner vagina due to weakening of my vaginal tissue, not knowing how to deal with this I went online.
Initially I was interesting in the Mona Lisa Touch or Petite Lady procedure that alot of women post about on here but it wasn't in my price range at all.
I stumbled upon a product call NeuEve; a estrogen free vaginal suppository created by a gynecologist for women.
100% all-natural food grade ingredients : Organic palm oil*, organic coconut oil, organic beeswax, organic tapioca starch, organic potato starch, evening primrose oil, organic sea buckthorn fruit oil, organic lavender essential oil, organic orange oil, organic vitamin E (d-α tocopherol), and a proprietary blend of nutrients.
NeuEve is gluten-free, hormone-free and estrogen-free. NeuEve does NOT contain any boric acid, petrochemicals, parabens, BHT, T.E.A, M.E.A, urea, glycols, PEG's, etc. NeuEve has never been tested on animals, and does not contain any animal products.
Customers can choose between three options depending on the severity of their atrophy and age. I emailed her asking for guidance and responded back with a warm and informative response. I chose the level 2 suppository due to my age.
She stated the following supplements help with atrophy; OMEGA 3, OMEGA 7, Vitamin D.
She also mentioned purchasing a set of Magnetic Vaginal Dilators and using them twice a day if I have pelvic pain.
I have been using NeuEve for one month along with taking the above supplements and have seen a huge improvement. I use lubrication during self pleasure which helps but I have not had any pain or microcuts in or around the vulva or inside the vaginal canal since finishing my first box of NeuEve.
I used to to have a odor due to the dryness, and a UTI feeling. The odor is completely gone, and the UTI feeling is slowly fading away. I thought Id share here since there are soo many products on the market to choose from.
The price is around $59 for a month supply, if you decide to get a subscription, the cost will be $49 a month. Not too bad. The site recommends using it for 4 months straight, however many women report improvements after one month.
Please feel free to message here with any questions. Im going to continue the product for four months and return back with an update.
Posts 121 - 145 (145 total)
Nov 2, 2021 01:06PM HomeMom wrote:
Why do we need a vaginal dialator? I pushed three babies out of there!
Nov 2, 2021 04:23PM KBL wrote:
Hyalo-gyn is so expensive. I had my gynecologist prescribe the estrodial. I will be telling my onc, not keep it from them, but I want quality over quantity. I only put a pea-sized amount three times a week fornow and will drop to two times a week after that. The tube used to last me a year, not a month. I will be keeping a close eye on my blood numbers.
Nov 28, 2021 05:27PM PoseyGirl wrote:
I'm really glad I found this thread. I'm in the same boat as you all - surprise, surprise. I'm 5 1/2 years out from dx, and the vaginal atrophy is setting in. Sex is painful. I have never found any lubricant that does any good whatsoever. I will admit I haven't done much vaginal moisturizing (I hate dripping all day).
I went to see a gynaecologist again and he prescribed DHEA suppositories. Since I'm in Canada, Intrarosa isn't going to be released until January 2022. He gave me a compounded product. He told me that the main side effect can be discharge, but not everyone has an issue with it (famous last words as I immediately concluded I'd be one of the ones with lots of it). I took it once and was gushing for hours the next day. It was awful. Globs and incessant from about noon into the next day when I was standing or walking). It wasn't a bit of discharge...it was a ton.
I just cannot imagine doing this every single day. So now I'm already backing away from this - highly disappointing. He does seem willing to prescribe estradiol cream for where it hurts (down low, just inside the entrance to the vagina). But I'm concerned now about the varying opinions of oncologists about this. I really don't want to take risks with estrogen levels. Even the DHEA suppositories - which supposedly are completely local, within the cell - have not been well studied in women with BC.
So now I'm wondering about the hyalo-gyn I've been seeing mentioned here. Has anyone had some decent results from that besides the stinging you mentioned upon insertion (when I put in the DHEA suppository, when I sat down and wiped the next day, I had burning. I get burning easily).
This is incredibly frustrating. I'm not a sex fiend, but it's depressing to think that at 52 (and this has been going on for a few years), I can't have sex due to the pain. I'm not asking for a miracle...I'm asking for the pain to stop.
Nov 28, 2021 05:39PM KBL wrote:
I tried the Hyalo-GYN. It worked the first few times but not great, and I found it very expensive. I am using the estrodial, but it’s not working yet. I’m trying to use the least amount possible. I don’t use the syringe it came with, just a pea-sized amount
Nov 28, 2021 06:12PM Rosie24 wrote:
Posey, I’ve used all three things you mentioned, currently on nothing. Intrarosa—some improvement in hydrating tissue but not enough to help with sex. I agree it was drippy but mostly during the night for me. Hyalogyn—not bad, not helpful enough. I developed the stinging or burning upon use and quit. Estradiol—onc prescribed inserts. Great results, we got very close to easy sex. Downside was some breast tenderness and swelling, then actual pain during a spa massage when I was lying face/breasts down. Scared the heck out of me and I stopped the next day at about 2 months in. (I have some fear about estradiol because I was taking it orally before my diagnosis and blame the drug and myself for landing me with MBC, whether it’s really the case or not.). So I’m thinking about recycling either Intrarosa or Hyalogyn but haven’t yet. Good luck, I know you feel. Imiss the intimacy and so does DH.
Nov 28, 2021 07:26PM swivel2020 wrote:
what is the dosage on the Omegas?
Also I found Gynatrof it has hyaluronic acid and Vitamin E and it’s about $ 25. I’m trying it.
Nov 28, 2021 11:06PM Jons_girl wrote:
I have been experiencing post menopausal stuff too. I tried the AhYes product but wasn’t happy with it. It doesn’t come with a applicator either overall wasn’t happy with that product
This product works very well for moisture. https://goodcleanlove.com/collections/restore-moisturizing-vaginal-gel
it comes with a applicator for the gel. And it doesn’t seem to drip out. I haven’t had trouble with that. But I use it at night so it has time to absorb. Also Astroglide Organix is a good natural product for sex.
I’m considering using estrogen cream tho too. My MO has been somewhat supportive of me using that and wrote rx.
Nov 29, 2021 04:44AM KBL wrote:
Rosie, I know I probably won’t ease your mind, but I was not on any hormones before cancer. I did take birth control when I was younger but shouldn’t have been because I have a blood clotting disorder that I didn’t know about back then. I have it everywhere in my bones and bone marrow from stem to stern and now in my stomach. I have no idea why. I’m not having issues yet with the estrodia, but I’ll post here if I do. The Hyalo-GYN is hyaluronic acid too.
Dec 1, 2021 11:59PM - edited Dec 2, 2021 12:03AM by Jons_girl
Thank you for sharing your experience kbl.I've worried about going on any estrogen cream too. My med onc stated there are studies it's safe to use. Supposedly doesn't go into the blood system. So I don't know what to think.
My gma had breast cancer in her 60s then went off tamoxifen after 7 yrs (standard back in the 80s-90s I think) and begged her gyn to write rx for her hormone pills. She went on them. Cancer returned. That rocked my world. I loved my gmaso much. That's been etched in my brain. so I haven't gone on the cream. But I'm thinking about it.
Dec 2, 2021 03:47AM KBL wrote:
Jons_girl, I’m so sorry about your grandma. I totally understand. I can keep you posted on how I’m doing. I have been using it daily, about a pea-sized amount, for almost two weeks. After Sunday, I’m going to switch to twice a week. I definitely would not take a full plunger’s worth. The amount I’m using worked the first time around. I suspect I already had cancer then, since it’s been there since 2013. I will be having a lumbar/pelvis MRI in January, and that’s where they can see if there is more cancer or not.
Dec 2, 2021 07:16AM Jons_girl wrote:
KBL: Thank you. I still miss her a lot. Thank you for this information. Yes please keep us updated. This is good info to know. Let us know how the MRI goes. Sending a hug to you.
Dec 2, 2021 08:54AM KBL wrote:
Thank you, Jons_girl. I'm hugging you right back. I do think about my grandson and when I'm gone. He's only a little over two years old, so when I go, he probably won't remember me. My father died when my daughter was just about to turn five, and she doesn't remember a whole lot. Sometimes I think it's better that way because then he won't hurt so much. I don't dwell on that, though, because I am enjoying him so much.
Dec 3, 2021 10:31AM - edited Dec 3, 2021 10:38AM by LaughingGull
KBL, my great-grandmother died when I was 6, and I remember her vividly and fondly; the love and the attention she poured on me have stayed with me all these years. Some of those memories are from I was like 3 years old. I remember her birthday gift at my third birthday. I even dream with her house now and then. I think of her when I do certain things with my kids. Genuine love lives forever. My guess is that he will remember. If he doesn't remember, that loving feeling will stay in his heart the rest of his life, even if he doesn't quite remember where it came from precisely.
Dec 4, 2021 06:01AM - edited Dec 4, 2021 06:02AM by KBL
LaughingGull, this makes me so happy. I get the biggest kick out of my grandson. Whenever Mom brings him over and tries to stick around for a minute, he tells her repeatedly, “MOMMY, GOOOOO!!!" According to him, she interrupts our play time. He's done it to his dad as well. We are just too fun. My daughter says it's because she has rules. I have not had to really discipline him at all because we just play, play, play.
I bought a hand casting kit for us to do for my daughter for Christmas. When I told my husband, he started crying. He hates the thought of me dying. I tell him he needs to know I feel good right now and we need to enjoy it. Poor guy. I feel really bad, but I think it will be a great memory.
Thank you for sharing that you remember. I love that. I'll have to ask my daughter if she remembers anything about my dad. He used to take her to the dump because you could drive your truck right down into it and go over the hills. I'm pretty sure she remembers that. Lol
Sorry to those on this thread for the deviation.
Dec 7, 2021 06:43AM Jons_girl wrote:
I agree I think he will remember. Video is so important too. Kids love to watch family videos. And that keeps memories alive too in families.
Sending hugs to everyone. Hope you all had a wonderful thanksgiving. Have a wonderful week
Dec 7, 2021 03:32PM KBL wrote:
Jons_girl, that makes me very happy. Back when I was a kid, there weren’t many cameras, so you’re right. Now it can be right in a phone. :)
You have a wonderful week as well
Dec 8, 2021 07:41AM Jons_girl wrote:
kbl: thank you
Dec 28, 2021 08:57AM - edited Dec 28, 2021 08:59AM by KBL
So I wanted to report on something. I had had enough of trying the OTC products. Nothing was helping me. I had talked to my gynecologist because I had been on Estrace before my diagnosis, and it was awesome. I was told not to use it now because of my Stage IV diagnosis. After three years being metastatic and married to my husband for 37 years, I was tired of it being so painful. He had told me if I needed to stop, he would. I decided that I wanted quality over quantity and have gone back on estrodial. I do not take as much as the package says. I used a pea-sized amount for two weeks straight and then a pea-sized amount twice a week. The tube will probably last me a year instead of a month. It's working. It's still a little painful but not bad at all. I am no longer a desert. I have had bloodwork since starting. I have been on Xeloda since September 27, after switching off Ibrance. My tumor markers are coming down at a good rate. I believe Xeloda is working and the estrodial is not having a negative effect at this time. I let my oncologist know that I am using it. No secrets. It's my choice.
Dec 28, 2021 09:28AM meistere wrote:
I have been on an AI plus Lupron for over 5 years now. The vaginal dryness and atrophy started right away so I started complaining right away! The lack of hormones has taken a toll on my marriage (maybe I'll write a book one day!) I've had my oncologist AND my OB both tell me that Estring was safe. I have used it for 5 years and while it doesn't help with desire, it DOES keep everything from drying up. It's a ring that you insert (kind of like a Nuvaring if you're familiar with that) and change out every 3 months. It secretes a SMALL amount of estrogen to the area where it's needed. I had my blood levels of estrogen tested constantly through the first year on it and then every 6 months and it has not raised my estrogen levels AT ALL. Creams are a pain/messy to deal with, plus I would be concerned about getting estrogen some place it shouldn't be. I don't understand why oncologists don't push it more.
On top of that, I get Testosterone pellets every 3 months. This helps with desire AND the dryness. It changed my life! I HATE that it's slightly surgical to get them in (it's the same as inserting Zoladex so why can't we figure it out Pharma world??) but it kind of replaces what the estrogen used to do. Both my OB and oncologist are on board with it. I cautiously tried and tested my blood at the peak for 2 cycles and it was zilch! The concern for some people is that your body will take the testosterone and convert it to estrogen - but your aromatase inhibitor should be blocking that conversion. You can tailor your dose to whatever makes you feel alive and sexy (but not too much or you'll try to start a fight club 🤣)
Dec 28, 2021 09:47AM KBL wrote:
I should say I have a blood clotting disorder as well and shouldn’t be taking estrogen at all, so I do like that I control how much. I agree the other stuff is messy, but I put the pea amount on my finger and just rub it on. No mess. I’m glad the estring and testosterone are helping. My issue was the dryness. I feel I am a little more in the mood since it doesn’t hurt so freaking bad
Jan 18, 2022 10:32PM - edited Jan 18, 2022 10:39PM by Jons_girl
The testosterone pellets…do you get those from a compound pharmacy? My gyn is going to prescribe testosterone cream. But pellets would be less mess. And I tried cream before but maybe dose was too low. Not sure.
KBL: I think choice on everything is really important! My MO and onco gyn both have stated going on estrodial is safe. Studies are showing this now. My gyn (from a large university hospital) said there are quite a few gyn's prescribing i for patients who have had cancer. So I'm wondering if drs are looking at this differently now??
I will be having regular blood draws and we already got a baseline blood draw recently. So will see how this goes. I'm a little nervous but my onco team seems supportive
19 hours ago KBL wrote:
Jons_girl, that makes me feel better that doctors are finding it’s not bad. I don’t ever use a full dose and still have 3/4 of the tube left. Please keep me posted on the testosterone. No one has offered that to me.
14 hours ago Mexhay wrote:
Hi all - I'm here because my onc just prescribed Estrace for me and I'm debating whether or not to use it. I'm 44 and not prepared to deal with SO MUCH DISCOMFORT, but I also want to do everything possible to be around for my lovely husband and our two young kids. So I guess my question for you, KBL - since you're both metastatic and currently using the cream - do you plan to have your estradiol levels checked regularly while you're using it? Have you had them checked since you went back on? You've given me a bit of courage to go ahead and try a very small amount to see if I can ward off the atrophy that seems so common.
13 hours ago KBL wrote:
Mexhay, I have not had my levels checked. I’m really not worried about using it anymore. I’m more about quality of life at this point. I do keep an eye on my tumor markers, which are pretty accurate for me. They are still coming down since starting Xeloda. What I do and did is put a pea size amount every day for two weeks, and now twice a week a pea-sized amount. It should last a really long time that way. It does help.
7 hours ago kksmom3 wrote:
It's the ONLY thing that has helped me. I can't even miss a day or I'm right back to misery. Thank God, this is an option.