Chemo Brain Ok, but chemo vagina? Help!!!!
I do really need to get this out and I need to talk about this because I just can't stand having to accept this SE. I've been to other topic discussions on this and one is years old with just so much to read, so hopefully I can get some help here. I hate that I hate to have intercourse with DH. IT HURTS!!! AND I BLEED!!! I am trying to deal with it by using Vagifem, and Replens, but Sex has become something that I don't enjoy anymore. I always loved lovemaking with DH, and he is a wonderful lover to me. I know he's been so wonderful and patient with me, and in the past even if I wasn't in the mood, he could always get me going. But now, along with th loss of a sex drive, it's compounded by fear of pain if I do try to get into it. Does being a Stage III sentence me also to no more "O"s?
Barb
Comments
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Shanagirl,
This isn't a fun SE. There is a topic callled I want my mojo back. The ladies have lots of good idea. Good luck. I'm just getting to point I will be starting the AL's and am aware this is a SE of them
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Kira, I know the topic you are mentioning. That thread is so long and there is just so much to read as it was started back in 2008. But the SE of pain and bleeding, I was trying to skim thru that thread, and just got aggravated trying to find some help with this SE. I've also tried looking on the Arimidex thread but haven't seen any specific info. I'm wondering if I can use any kind of topical testosterone, or if it would even help. Part of my issue is with myself, too. I don't feel good about myself right now and this is adding to it. I really wish I could feel better about this.
I miss this aspect of my life.Barb
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I was once told by someone I tried to discuss this with that "God loves husbands and wives who are celebrite". They are like the angels" But unless you have talked to an angel recently I would try to find some help in the forum from women who have found ways NOT to have to be celebrite! Especially if you can't convince DH you are trying to win your stripes to become an "angel".
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My GYN gave me some estrogen cream, but just a little dab on the end
of toilet paper to the outside...it helped . I questioned all my doctors
about it and they thought this would use the least little bit and be OK
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I use the estring, which is supposed to be the smallest amount of estrogen-having treatment. It has helped A BUNCH!! I still have to use lube though (didn't before). The best thing to do though, if it's possible for you, is to find someone in your area who treats for this! A gyn-onc, or sex therapist- anyone with experience with cancer treatment SEs. Your onc, if you feel comfortable- this is super common! They have heard it before! In the meantime use so much lube you can't believe it- it helps.
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Medigal, what? That's ludicrous that someone said that to you, because nowhere that I've ever read in the Bible did it say "husbands and wives" should be celibate! I've had ministers tell me that God wants husbands and wives to enjoy each other! That's one of the benefits of marraige.You did better than I would have if you managed not to say "you're crazy".
Shanagirl I've experienced your same problem. I've heard some crazy answers. All I know is I was told by my OBGYN that the best thing they prescribe is the one thing I can't have, and that's estrogen. So now after reading SoCalLisa I'm not sure. Sigh.
I am just frustrated! I was put into menopause with chemo and periods never came back. I use the Replens and found it helps if I insert it about 4 hours before intercourse. Then I also keep a bottle of baby oil by the bed (gyno said that's ok) for the outside. All in all not what I wanted to be doing while we are "in the moment".
Ugh...let me know if you find anything that works.
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estring and/or intravaginal estriol are great.
The vagina just "atrophies" without it.
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The Replens does help but only if I'm faithful about using the Vagifem regularly every 2 days. Not something you think about taking your meds in the morning, so I'm trying to do it every other night before bed. Last week I missed a few days of the Vagifem applications and found that even the Replens didn't work as far as pain and bleeding. I feel like my whole vaginal walls have shrunk and thinned out and even with Replens there is still tearing and bleeding
I noticed that when I'm really into it, there's more vaginal thickening and less pain, which is the benefit of DH using the little pocket rocket vibrator toy on me. But lately that doesn't even work. I was wondering if it's because I'm not regularly applying the Vagifem and Replens, whether or not we have sex.Barb
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Vagifem is wonderful but I've found out that the only way to get past the pain, at least for me, is to use Vagifem PLUS frequency! The more you try, even though the pain and tearing can be agonizing, the easier it will get.
Unfortunately, my insurance company decided to significantly increase the co-pay for Vagifem. If I want to continue using it, it will cost me $75/month!!! Their hairbrained alternative (for $10/month) is the Vivelle Dot which is systemic estrogen. My doctor wrote to them explaining that I can't use systemic but they won't back down on the cost.
Vagifem is very safe. I had my estrogen levels tested before I started using it, and then 2 months later. The estrogen levels in my blood had actually gone down!
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I'll just have to convince my onc. to write a perscription for Vagifem. Her suggestion is to use a dilator.
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Get thyself to a Karma Sutra shop...it is a bit odd at first but once you get through the initial, well, phobia of being in a strippers paradise, just head for the Karma Sutra corner - mojo awaits and I even started picking up some of the outfits (the cheap ones). It helps bringing the DH along too - it isn't 'dirty' and the experience itself can be quite arousing. And it isn't like going to the corner drug store - everyone is in the place for mostly the same reason - having fun in bed! The folks behind the counter are wonderfully helpful with getting the right product for the right solution for the particular issue. There is no question they haven't heard and you won't hear them asking for a price check over the loud speaker either!
Have Fun!
LowRider
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Hey Shanagirl,
I feel your pain. Intercourse was painful although I didn't have bleeding. I use the vagifem inserts and a lube called 'Pur' - both recommended on the mojo thread. I got 'permission' to use Vagifem a little differently than described and that helped alot. Rx is for daily insert for 2 weeks and then 1 every two weeks. I needed to do about 4 weeks straight then 2 x per week for 1-2 months and now every 2 weeks. I hate the replens but used it at the beginning altho now I don't. It would probably help but i hate the goopieness.
The other important change for me was getting the Hitachi magic wand. It works so well it is actually too good at this point and I'll be 'downsizing' to a pocket rocket. All this said, I don't get in the mood on my own but when DH is in the mood, the things will help me get to a point of either being neutral or actually enjoying it all. It sometiimes is uncomfortable but never excrutiatingly painful the way that it was. It is a depressing to I know I won't ever be where I was before all of this, but I've gotten to a point where I can enjoy myself a bit , occasionally, and still feel like I'm a good partner to DH.
I hope this helps.
Annie
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Hey Ladies,
My OB/GYN said the best lubrication is good old vegetable oil. It works great, is inexpensive and totally safe. Take care!
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oh, my... yes, this is a good topic! I had this issue during chemo and now that I have had a hysterectomy, I have it again! Here are the things that I have found to work VERY well:
Good old coconut oil. It solidifies at room temperature (unless you live in the south or during summer - little messier then!). To use I have a... ummm, applicator from a monistat package. Plunge it into the hardened coconut oil, then use like you would any vaginal medication. It does melt once it is in you, so be careful you are not running around the house right after! I buy mine from Whole Foods, but I think you can probably get it almost anywhere.
Vitamin E suppositories. I love these. They are convenient and not messy. You can get them at natural stores - Whole Foods usually carry them. Insert about 5 minutes prior to your couple time and whoola - a magically lubed orifice... LOL
Yes brand lubrication from Great Britain. Yes, it is pricey, Yes, it works and Yes, it is paraben free - which I love. (Do I sound like a commercial?!) But they do ship for free if you order more than $60 (US) worth. It is all natural and you can choose from water based and oil based. I really like it and so does my hubby and despite the fact that it does not seem like there is much in the containers, we have had ours for several months now without running out. And we blend both the oil based and the water based. Plus you can buy the water based one as a single use "plunger" kind of thing - a litte tip that inserts and then you just squeeze the bulb to apply the lube inside - where you really need it the most. Which is really the reason why all 3 of these things I have mentioned work. I try to tell my husband - it is not the "outside" that hurts - it really hurts deep on the inside! Thus lube that is inserted works the best!
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IllinoisNancy thanks, I remember that was also one of the things my gyn. said, the last one I saw in the gyn group is a female. I haven't tried it but I'l put it in a cup or something and just dip a finger in it discreetly. I sure don't want my fiance to see "vegetable oil" by the bed, I'll never hear the end of the jokes. Heck I can think of a few myself just typing this.
Annie, Texas, Kira, etc, my gyn didn't mention the vagifem. What is that? They are really funny about me using anything with estrogen, so I guess the estring and estriol are out. I'm a bit scared of that myself.
You know the funny thing is, I find a glass or two of wine an hour or two "before" helps me to relax enough that it's not as painful. I think the fear of it being painful makes it much worse! One caution, if I have the wine, I have to drink at least 16 oz of water ahead of time too, because wine is a dehydrator and it even zaps moisture "there".
Nordy, thanks for the other tips! I had a hysterectomy and ooverectomy too just to get rid of the estrogen, only to find that fat can produce estrogen. More motivation to exercise now! Plus, ironically, I've read and seen that exercise before (walking, whatever) can help get you in the mood due to the blood flow going "there" as well.
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At 5 years post 1st encounter, I was having the best mojo ever - I could merely 'think' myself in the mood.
Well, he died in a car wreck and if you head over to the date thread, I had some issues and opened my long packed away box to find a new, unopened Karma Sutra sample package of several items - worked great and reading this thread has 'thought' me back in the mood - I had better find my Marlboro Man this weekend! Woo Hoo! And oh boy, maybe a new chapter on the Date...hummm, ahhhhh.
BIG thanks to y'all
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Lowrider54 Love your suggestion! I found a Karma Sutra Shop in my area
Kool web site!Texas357, the insurance company doesn't care about whether it's sytemic or not, they just want the bigger co-pay.
Annie62, I know what you mean about not getting in the mood on your own. I do miss those days when the hormones were raging and we could be at a party and look at each other across the room and suddenly feel horny, Ahhh well, the Vagifem, and motion lotion with a pocket rocket will have to do now, although that's not so bad when it works
IllinoisNancy I don't think the veggie oil or any other lub would work without the Vagifem working to plump up the tissues of the vag area. I'm really going to have to be more consistant with applying the Vagifem on a regular basis during the week. Then I need to make an appt with my GYN.
Nordy, Coconut Oil Huh? I'll try all of your suggestions with that and the Vitamin E suppsitories. I am taking the vagifem to reverse vaginal "atrophy" which I know is why all the pain and bleeding, but I will definitely try those too. DH is going to love trying all this stuff.
Smiling Spirit, My GYN, said the Vagifem taken as prescribed is ok for ER+ Pr+ BC because it doesn't work systemically. It's a little white "pill" insterted with an accompanying applicator., I've also noticed that when I'm more consistant when using it, I'm more responsive to DH and the poket rocket. Those things are great!
Has anyone been prescribed anything with testosterone it it or like an androgen cream? Just wondering. My Gyn used to prescribe it when I was premenopausal before BC.
Barb
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another inexpensive lubricant suggested by the gyn onco at nyu is crisco. yup I'm not kidding. he said they found the consistency to work better and stay a little better than some of the other oils melting/liquify points.
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Barb,
I use a tiny bit testosterone cream applied to the labia three times a week.
Great for the libido.
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mollyann
How did you get your Dr to write a scipt for it with breast cancer?
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My doctor is an integrative medicine doctor. Some of these doctors prescribe bioidentical hormones to breast cancer patients. They have proven that it is the synthetic progestin that is the problem, not the estrogen or testosterone.
It takes a while (ten years?) for mainstream doctors to catch up with the evidence.
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Mollyann, that's what I wanted to ask my Gyn. The testosterone creme I used to use on the labia was made in a compounding pharmacy. It really did work great for libido.
Barb
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Seconding the EstRing. I tried everything and my docs recommended EstRing, which is supposed to be very low absorption. I only use it as needed, but it made a huge difference for me.
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Smiling Spirit,
Vagifem is an insert tht has estradiol (I think - if thats wrong, I'll correct tomorrow) . Very low absorption rate into the bloodstream, so gyn and onc both okayed for me.
Annie
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Take care of the insides with the suggestions given, but on Vagifem I had a fibroid grow so my PCP switched me to Estriol cream and stated Estriol is the safest estrogen. Estradiol is highly suspicious.
Anyways, if you can get vagina etc all healthy, try a lotion that contains topical l-arginine. That will warm things up a little. Peri hit my mojo very hard and being extreme high risk for BC [I virtually await my turn] I am very careful about any Estrogens.
Please ladies, read up about Estriol versus Estradiol.
Barb, bleeding is not on. I would really push that issue with your med team. Be well everyone! ~Zeana
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Thanks all for your advice even though I'm not the original poster here. I do want to say something about the bleeding, as that's happened to me a few times. The gyn had said that menopause makes the vaginal walls thin and they are easy to irritate/crack/tear whatever. If you are only bleeding a few spots after intercourse (like when you wipe with toilet paper and it's there) I'd say that may be what it is. However, if the bleeding is more than that, def. tell your oby/gyn that! My gyn (the last I saw was female) said that I should use the Replens several times a week not just when I'm about to have sex...she says to keep that area moist all the time so it never dries out and cracks. I notice when I use it more often (it says it lasts for 3 days) then I am a bit better all the way around. I notice only a bit of it not staying in, but not enough to wear a pad or anything. It's perfectly safe, no estrogen at all.
Broken I've heard about l-arginine. I'll have to google it for more info, I don't want to "wear out" this thread with questioning everyone, lol
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Smiling Spirit, I found a link that will give the idea of what l-arginine does without me getting banned for being too explicit.
http://www.ehow.com/how_5709600_use-cream-arginine.html
Think warmth and lots of tingles. It does work for intimacy with a partner - sort of gets you in the mood if your body is struggling, but you may need to try a few brands until you get one that works for you. A gf that put me onto it gave me a brand name but it did nothing for me. I tried another and voila.
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Zeana, My gyn told me the opposite with estradiol. She felt that it was the one least likely to be absorbed into the bloodstream. I had estrogen level tests done while on estradiol. I was on Aromasin at the time. And my levels were practically nil.
Thanks for the arginine tip. Hoping to have a weekend away with DH before I have surgery etc.
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Careful about the coconut oil...I was cautioned against using it but, duh, can't remember why - dern fade brain!
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Love this thread. Even though neither of my cancers were hormone positive, no doctor will prescribe estrogen. I asked my BC onc last week about estring (which I heard about right here on good old BCO) and she thinks that would be okay and recommended I go see a gyn so I had my family doctor refer me so I'm now waiting to get the referral.
This is one side effect (in my case of menopause) that doctors seem to ignore. They don't seem to have any solutions and we're just expected to put up with it. This is one area where we really have to become our own advocates. Thanks to all the wonderful ladies here that are helping us to be able to have sex again without pain.
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