Chemo Brain Ok, but chemo vagina? Help!!!!
Comments
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Ok - this is interesting. I understand from reading that Vagifem are inserted pills, but what the heck are EstRing and Replens? How do you use them? Shannagirl, are you taking Tamoxifen by any chance? If you do, it's also possible to bleed from it.
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Zeana ~ I'm going to try the L-Argenine "clitoral cream". I checked out the website. Sounds interesting.
Lowrider54 ~ DUH
BMac ~ I hope you get in to see the Gyn. It's something she probably hears all the time. Ask her or him, if you can try some testosterone creme. I think that works better than the estrogens for increasing libido. But the estrogens really do help with the vaginal tissues that have gotten thinner and atrophied.
Shelly~ I don't take Tamoxofen, I'm on Arimidex. I think they all destroy our vaginas because we become estrogen deprived. I know that's why the bleeding with me. Its from the tissues getting irritated and torn during penetration, not from any internal bleeding..
Barb
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Ladies, I'm on arimidex, and had surgical ooph/hst. Needless to say, things don't work too well.
Here's what does.
Sexy lingerie
Glass of wine
And this stuff I got online, "very Personal" lubricant, made by a woman OB/GYN who had a hysterectomy herself. Use it 15 minutes before sex, and also use KY sensitive Jelly (not the liqui beads).
Replens gave me such UTIS....argggghhhh. So did Rephresh.
My onc said NO WAY NO HOW to any estrogen anything as I was the estrogen queen.
Good luck!
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...ahwm:.... A ginormous glass of cranberry juice after and water, water water the next day.
Never any soap but dove.
Good luck redux
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Thanks Barb. I'll ask about testosterone. My family doc (female) said the vagina is typical of menopause, thin and I need not only Replens for moisture but a lubricant for the external. Who knew things could get so complicated.
I actually asked my doctor to preferably refer me to a female gyn because she would have a better understanding of what I'm going through. Still waiting patiently for that referral.
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Ladies, I would like to run something by you on this subject of Vaginal Atrophy caused by Arimidex or the other ALs. I had posted earlier that I am on a daily dose of Nitrofurantoin 50 mg. to stop the horrible excruciating pain I was having in that area and it had nothing to do with sex. (I am long past those days!) But since I am on my 6th year of Arimidex I have suddenly become very concerned about what may be going on in the deterioration of my personal parts that I can't see. I don't want to wake up one day and find out my vagina is gone! So last night I was wondering what if anything can be done to stop the deterioration if I continue to take the Arimidex. At midnight last night I got up and ran into my bathroom and found that box of Replens my Onc suggested last year which I bought but only used 2 because I hate those icky things we put in us which leak out at times.
However, I decided to read for the first time the paper which came with it. It said Replens not only replaces needed moisture we loose in that area but it helps sloge off the dead cells and gets new cells to form to protect the area from tears and bleeding. THAT sounds like just what I need! So I am going to start using it regularly (every 3 days it says) and hope that I can save what is left of my female parts just for posterity.
It frightens me to think that avoiding estrogen for so many years can deteriorate parts of my body that may cause me a lot of other problems in the future. However, my Onc is a male and I don't think he gives my "v" much concern. He just wants to keep me alive. Maybe with Replens I can do both! Have any of you used Replens on a regular basis and found it protected your private parts in the way I have described? Thanks for any info.
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Medigal ~ It is frightening to think what the lack of estrogen for so many years can cause the vaginal deteriation you are experiencing. Myself, since being estrogen deficient, because of treatment, I feel like I've been "chemically castrated". I read on the old MOJO thread, someone said their Gyn explained to her that what happens we can't manage full penetration, not even half. It's just too painful. Gyn explained that the pelvic floor muscles can begin to clamp down after cancer and then it becomes a vicious circle. The body anticipates pain and the muscles tighten to brace for it making it worse. I also found some websites there that can help with vaginal atrophy. one of the ladies posted the websites on the very last part of the thread..
Medigal there are other lubes to use also, besides Replens. I want to try some. I've also heard that some are water based and some silicone based. I also want to research "Androgel" which is a testosterone gel that helps bring back sexual desire and orgasms. Hell, I'm ready to try anything. Anyone heard of these?
Barb
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Shanagirl: Thanks for the reply and info. I am not looking for "sexual desire" I just want to be able to go to a gyn appt with a male doctor and not have him yell "Oh, dear God! Look at this! What's happened to her?" He then wanted to force me to take "estrogen pills!" I left him and found a female gyn who understood what had happened to my private parts and did not find it disgusting to check me internally. I think the Replens should work for what I need. I also will try to make another appointment soon with my "female" gyn to ask her to check for further deterioration. Thanks anyway for the suggestion. It may help others in the same canoe.
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Barb,
I was exactly where you are....and to be honest, my DH was having a rough time as well. The face of cancer just isn't very pretty!!! But to echo what's already been said, we both use Extra Virgin Coconut Oil and it has worked and felt good every time.
I had a full hyst & ooph then 6 months of chemo, add no hair and no breast and sex was a thing of the past for us......no more, all is well. Best wishes and never give up.
Joni
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This was posted by carcharm on another thread:
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My pcp prescribed vagifem to help with the pain and dryness during sex since being thrown into menopause. It was quite painful for me. I got cramping almost immediately. So, I went to a bioidentical specialist at the Cleveland Clinic and she prescribed DHEA ovules for vaginal insertion. It is a compounded bioidentical drug. Does anyone know of the bad effects of this? It is 100% helping already and no cramping.She said there is minimal absorption, althought, I've read studies that the vagifem and other estrogen suppositories are absorbed at a higher rate than first expected. She is not monitoring blood levels... just gave it to me and said it wasn't a hormone-which I believe it is of the adrenal glands. --------------------------
I've heard that DHEA vaginal suppositories will soon be a patented prescription item. Anybody else have info on vaginal DHEA?
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Just wanted to add my input. After about 2 1/2 years on Femara, sex got very painful and I started having monthly UTI's. I spoke to my onc about this, she told me it was due to vaginal atrophy from estrogen depletion and wrote me a prescription for an estring (a flexible band that is inserted vaginally and left in place for 3 months at a time and releases a small amount of estrogen daily). It has been a God send. After using it for 8 months now, sex if back the way it used to be and UTI's are a thing of the past.
We are also monitoring my serum estradiol level every couple of months. The first few months my level went from <2 up to 25 then 21. Worried me a little, by my onc was OK with it. Just had my most recent level done and it is back down to 7. Both my onc and I are very happy with this number, although I think I will have another done in a month or so just to see if it has fallen even more. I think the theory is that it takes a while for the vaginal walls to replenish and plump up again so that the estrogen is not passing through and effecting the systemic levels.
Good luck all, this was a HUGH quality of life issue for me and has made a big difference in my attitude.
Cyndi
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Mathteacher ~ I've heard that DHEA is a natural hormone produced by the adrenal glands in the body. Apparently there are some interesting studies being done in Clinical Trials and may one day be a prescription drug to treat menapausal women for vaginal atrophy. Thank for the info. Here are some websites I found on it. Click here: DHEA: MedlinePlus Supplements
Medigal ~ I can't beleive your male GYN had such a rude attitude with you. You must have been so upset at him.
jaycee - Thanks, I will try the Extra Virgin Coconut Oil.
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I have been taking Vagifem since I went thru menopause about 4 years ago. I was diagnosed in June and just finished treatment. I asked my gynecologist(a woman) in June if I should continue taking it and she said yes. Neither my surgeon or radiologist commented on its use. However, I friend just told me that her prescription was cancelled since it is being reformulated from 25 micrograms of estradiol down to 10. I just googled Vagifem and fact sheet said it was contraindicated for certain types of cancer. Needless to say, I freaked out. It looks like a many of you are taking it which makes me feel a little more relieved. I will be seeing oncologist on Tues. about the use of hormone therapy and will ask her.
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Shanagirl: I wasn't so angry at that "a-hole" as scared about what he could have seen in me! I actually asked my new "female" gyn if I had grown a penis or something worse! She laughed so hard that she refused to finished the entire exam. However she assured me there was NO penis in there only something even male doctors don't see that much in women like me. She explained a lot to me that day and I left being SO thankful there were female gyns in the field! He was the second male gyn I left in just about two months! The first "ordered" me to take this RX he prescribed and when I told him I don't take ANY med from any doctor until I have enough respect for them to trust them with my health. He accused me of being paranoid and screamed at me. His exam caused me such pain and he refused to use "any" of the jelly they always used to make it easier. I told him he did not have to be concerned about seeing "me" again. I was finding a gyn I could respect! Then came crazy man but eventually it all led to my FEMALE gyn who made the other two look like the fools they are! Here! Here! For Female Gyns!!!
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This thread caught my eye and I've been reading with interest. At 44 I am full blown menopause, with osterporosis of the spine and no estrogen production. I had started early menpause, which runs in the family then BC. I can sometimes get in the mood, but there is no moisture down under and at times I bleed a little. We've been using an OTC lubricant that works "okay". It would be nice to have other options and from reading this thread it seems there may be a few things I could discuss with the doctor. I talked to my primary and she mentioned a product that is a synthetic estrogen that may get the okay from the onc, but I can't remember the name. I guess it's time to go back to the gyn.
medigal - so glad you found the right gyn, I can't even imagine going through what you did. Doctors like that don't deserve to be in practice.
Thanks for starting this thread - it's one of those subjects not discussed much and hard to find information about.
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I have not had chemo, but like DMS, have been using Vagifem since menopause 6 years ago. I stopped briefly after my DX, but like ck55 started getting regular UTI's (the first one I got started the night before my lumpectomy and I was so afraid that the surgery would be cancelled I took 2 grams of Cipro and didn't tell anyone). Also as ck55 states, the vaginal tissues have to "plump" up, so Shanagirl, if you give the Vagifem a chance, hopefully you will see some results. Sex isn't as comfortable as it once was, but it's a heck of a lot better and no more UTI's. There is so much controversy about whether it's okay to use vaginal estrogen with BC, but for some of us it is about quality of life when dealing with everything else that goes along with a BC DX.
Medigal- sorry for everything you have had to suffer through. As if the big C isn't bad enough...
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Wenweb, you're right about the Vagifem helping the atrophied tissues to "plum up". I've been using it more consistantly and I've already noticed a difference this week. Unfortunately, I've come down with a horrendous cold and cough, and have been going thru so much kleenex and haven't felt up to trying it out with DH. Now he's coming down with it and is feeling totally miserable with it, so a few more days on the Vagifem and lube can only make it better when we're over this cold virus
Barb
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Barb, Good-luck and I hope that you feel better soon !!
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thanks all for this thread--I have my 6 month next week and I am going to bring up estring and vagifem..... I am also going to the sexual health clinic at the onc... I will report back....
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moman2kids
I wish my cancer ctr had a sexual health clinic. It will be interesting to hear about it.
Barb
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I promise to report back--- not sure what it is about but I figured it is available and this is an issue---so I need to get to work on it.....
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to those of you who have used Vagifem for years .... how often do you use it now?
I've been on it for just about a month & was instructed daily use for 10-14 days .... then twice a week after that.
I've also been using Replens twice a week (alternating days w/the VF)
Seems to be helping so far. This has actually been my biggest complaint since diagnosis
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Stepanie,
I'm on the same dosage as you, but I was not consitant with it and now I'm taking it the way it is prescribed and the vaginal atrophy has gotten so much better. I'm still going to talk about this with my Gyn and my Onc because the lack of sexual desire is unacceptable to me. But at least the Vagifem and Replens helps to make me more receptive to DH. I really was hoping more comments would come in on testrosterone creme or androgel both for increasing sexual desire.
Barb
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I hope you can get the answers (and results) you need and deserve!
I meant to also say I was fortunate that my oncologists wife is an ob/gyn! When I needed a second opinion on a recent pap - and I was having this issue, I went to see her. FIgured between the two of them, hopefully they'll straighten me out
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FYI...may not work for everyone...once I got stable (using every day for 2 weeks and then twice weekly thereafter), I began to use it once per week. That seems to hold me most of the time. Maybe once every 6-8 weeks I will use it twice per week. It is a quality of life issue and using vaginal estrogen with BC is not to be taken lightly. Hope this helps someone.
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I just got a prescription for Vagifem. My onc gave me a free sample, then the prescrption cost me $50 out of pocket! Isn't there a cheaper option? Also, since I am ER/PR negative, is there as much a risk with taking estrogen suppliments? I obviously don't overproduce estrogen.
I hate that I have no desire to have sex with my husband, and when I do it for him, it is so painful. And the pain takes a few days to go away. It hurts to urinate for at least 2 to 3 days after. It's been several weeks right now, and my poor husband has been so patient. I know it must be hard for him though. I want to WANT to again. I'm also very curious about the testosterone cream. Is it safe to use?
Thank you for starting this thread! This is one of the issues nobody tells you about until it happens.
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deenah ~ I so agree with you about wanting to WANT it again. I guess that's why I've had such an issue with what happens to our sex lives after BC. I'm glad you got a prescription for the Vagifem. Take it as directed and don't do what I did by skipping doses because I had no desire. I let too much time go by without taking it, it really made the vaginal atrophy symptoms severe. I've been taking the Vagifem regularly now and also with the replens and have noticed I feel more normal now. Though I don't have the strong sexual desire I had before, I do feel more aroused when DH gets me going.
This is all with the help of plenty of lube just prior to starting lovemaking and also the little poket rocket vibrator that DH helps with the "O"s. After all this, intercourse is good, and sometimes even an extra "O" during. As for the progesterone creme, I'm hoping to ask my gyn next time I see her, if it's ok. She used to prescribe it when I was in perimenopause before BC. It did help quite a bit. It was a bioidentical creme applied to the outside of the labia. The creme was compounded at a compound pharmacy and came in long thin applicators. I hope someone else comes here and gives more info about it.
Barb
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Thanks Barb! I just started using the Vagifem tonight. How long after initial application did it take to start helping? Where do you get Replens? I have never heard of it until reading this thread. I just turned 40 last month, so this lack of estrogen is completely new and I hate what it's done to me! I am really hoping my period will come back and I'm not in permanent menopause.
We tried using just normal Astroglide, but it didn't help much. I may make a trip to Whole Foods tomorrow to pick up some Vitamin E suppositories to try until the Vagifem starts working.
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Replens can be found at most Walgreen's, CVS, Walmart, etc. in the feminine hygiene aisle.
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I am a triple negative and my onc informed me that I cannot take anything that has hormones. That it all has to be anti hormonal. I am dry but it is not that bad. Times I do have sex there is little pain during it is more afterwards. My desire is gone. I cannot achieve orgasms. My gyn put me on Cialis and that helps achieve a "O" a baby one
I miss my multi orgasms and desire for sex that I had. I do not know what to do. Do I use all these things you are talking about? or no cause I am to stay away from hormones. Any suggestions for me?
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