vaginal dryness

sgcam

Just found this thread and see that it has not been very active recently, hopefully someone will find this info useful.

Wanted to comment on Replens- I agree it's terrible and clumps up. My Oncologist - a woman- recommended a product called Luvena - it is in an applicator also but it is not only a lubricant it is a probiotic and works really well. I use that in conjunction with using vagifem ( even though I am ER+) I have ordered Luvena from Amazon and have found it at my local Riteaid Pharmacy. The only negative is Luvena could benefit from upgrading their applicator.  I have also used dilators (mentioned in article pasted above by Oceana) when things were at their worst and found it very helpful- you can find them at various internet sites.

Blessings2011

Just wanted to check in... I am still using a tiny amount of Premarin Cream several times a month... just around the outside, and in the urethra. No more bleeding tissues, no more feeling like I have a bladder infection. No more pain just from sitting.

The MO emphasized that no lubricant will take the place of an estrogen when it comes to plumping up atrophied tissues, but that it is very important to keep the tissues moisturized when you're not using the estrogen product. (I am 100% ER+.)

She recommended an organic product called V-Magic, by Medicine Mama's Apothecary... sooo soothing on burning tissues! I found mine at the Health Food Store. http://medicinemamasapothecary.com/product/vmagic/

As for washing the nether regions, I rely on Cetaphil RestoraDerm Skin Restoring Body Wash, Fragrance Free(body wash/cleanser , which has a 0-2 low hazard rating by the EWG. You can get it anywhere. Again, VERY soothing.

BUNKIE10

Blessing - I am going to have to try that cetiphil wash. I use the sensitive bar soap on my body but have trouble with the other areas. Everything makes me sore or itchy. Thanks for the info. I will also try V-magic.

momand2kids

so glad to have found this-- have posted in other sections of the board.  My gyn is recommending pt for vaginal shrinkage-- I have been a user of replens/coconut oil-- but still struggling with this issue--- I like alot of the suggestions here--- and I need to be more consistent in using these things.... 

Has anyone done the physical therapy?  I am really motivated to do this but would love to know others experiences

PugMum59

I had pretty much forgotten about this site. Stupid Me! Lately, it seems like every time I turn on the television I'm seeing/hearing all these couples raving about sex after 50! I just wish they would interview some of us who have gone through bc tx and all the fun side effects you don't think about at the time of treatment. Like: sudden menopause and the inability to take ANYTHING for it. Quite frustrating. Maybe if some of the men tried sex with an unlubricated condom lined with steel wool they would understand why some of us just quit trying. I have tried astroglide, and replens, among others, and yes it lubricates, but it's still quite painful. I feel like my body has betrayed me twice and it really pisses me off. Thanks for letting me vent. I'll go back now and read some suggestions.

clarrn

Just found this.   30 and going through chemo.   Painful painful sex even with lots of astroglide    I have always had the higher sec drive in our house and I am getting so depressed about this.   Will talk to my MO on the 12th and see what he says.  95% ER+

2Tabbies

PugMum, I'm right with you on all of that. I had a complete hysterectomy and oophorectomy at age 45 for ovarian cancer. Menopause hit me like a ton of bricks so I went on an estrogen patch. That solved the problem. Fast forward 12 years, and I get diagnosed with ER+ breast cancer. No more estrogen supplements plus I have to take Tamoxifen. So in addition to a flat chest, awful mood swings, depression, and hot flashes, I've lost all libido and sex is painful. I've lost count of how many times my body has betrayed me. (Did I mention I also have an incurable, very rare form of lymphoma? It's just "smoldering" at the moment so I'm in "watch and wait" status, but could kick into gear at any time.) I guess I'm just supposed to be grateful I'm still alive, but I'm so angry. As for the topic at hand, I've tried Replens which helped some but leaves me with a goopy, smelly discharge. My GYN gave me some Luvena samples. They help some, but it liquifies and runs out of me almost as soon as I insert it. So it's really messy. I think I'm going to try the vit E and/or coconut oil suppositories. To top it off, with no libido, I have very little motivation to work on this issue. It just feels like one more chore. Thank god my husband has been patient, but I can't expect the poor man to live like a monk forever.

Tomboy

im not glad, exactly, that you guys are angry about this, but i am too, and it makes me feel so not alone, but i am still angry about it. and that they didn't warn us.

2Tabbies

Welcome to this club we had no desire to join. It does help to know you're not the only one so you don't have to feel abnormal. I was pretty sure this was going to be a big issue for me because it was after my oophorectomy/hysterectomy. The only thing that helped was an estrogen supplement, and that's now out of the question. You're right that nobody warns you. I guess I understand why they don't tell you when you're first diagnosed. No point upsetting you with something you can't prevent. But at the very least once treatment is done, the docs need to raise the subject and help you find ways to be as sexually functional as possible and as you want to be. My onc is pretty much useless for this. Thankfully, I have a good gyn.

tangandchris

Glad I found this thread too....40 and I'm dry as a chip! Sometimes I feel itchy and I wonder if it is from the dryness as well.

Dh and I bought some warming liquid to try, but now after reading this thread I'm wondering if it is safe. It's a generic walmart brand, but similar to the KY product.

Where can you find coconut oil? It's very frustrating and I haven't even started Tamoxifen yet. No period since chemo in Feb and I am assuming I won't have one anytime soon. My sex drive is low, but once we start I can warm up. The problem is that I'm so worried that intercourse is going to hurt that it kills the mood again.

*sigh* I am angry no one warned about this too. I guess early on in my dx I wouldn't have cared much, but now I do.

Tomboy

You can find cocoanut oil in the same aisle as as the other cooking oils. food grade is the one you want. And it  is "hard" at room temperature. my onco gyno recommended it to me too. it wasn't until i started getting uti's after treatment, that onc's got together and allowed me to do estrace vaginal cream. really it is just a trace of estrogen. it only did just help with dryness, and i am not getting uti's anymore either. but then i am not doing anymore sex, either. my main complaint, well no, i have several. But, they even gave it to me at lllc, highly estrogen positive. That only means receptors in the breast, not circulating. my circulating estrogen, 5 years after meno, and after chemo, and 8 months of AI's, is less than 1%. A grown man has 8%. sheeesh. there is another thread called i want my mojo back. its pretty good, too. one woman made coconut "suppositories" that she could put up in there before they melted.

2Tabbies

Tangandchris, I ordered some coconut oil from Drugstore.com. In addition to a regular jar of it, they have it and vitamin E in gel caps that can be used as a vaginal suppository. Amazon probably has them too. You also might check your local natural foods store. Someone further up in this thread mentioned the Yes Yes Yes products (http://www.yesyesyes.org). I ordered their introductory package. They're a bit pricey, but it will be worth it if it works. I'm going to give this problem the shotgun approach and try a lot of different things.

jill47

Hi all new to this group, good timing, got a call from my gyno surgeon's office today wanting to schedule a 1 year post TH/BSO pelvic exam(!) ouch....been dry as a desert, no libido, no estrogen, hurts to even touch.  It will be a painful but insightful exam, lots to discuss w/ doc.   Hoping he can prescribe me some relief, it can't be hormones (98% ER+) and the off the shelf lubricants burn like hell.   I am a happily married women who should have many years of sex ahead but not in this condition.  I'll keep reading your suggestions.  Liked the article on vaginal atrophy.  

Tomboy

yesyesyes?nonono! preservative:phenoxyetanol= alcohol:classified irritant=drying &ouch

momica111

I'm using a vitamin E suppository made by Carlson that also has coconut oil in it.  I've also used Yes but wondering about the previous post and what's in some of the lubricant alternatives like silicone.  Yes uses organic ingredients.

Tomboy

Momica, Yes does us organic ingredients, but if you do look up the ingredients, right on their own webpage,the very last ingredient that they use as a preservative, is citric acid and phenoyxethanol, a type of alcohol. and alcohol is a known skin irritant. but i do hope it works for people, anyway.

udpt82

I am sorry so many of us have these issues, but I am glad to know I am not alone.  I saw a new gyn (woman) in the spring and she said unfortunately there was not a good solution to dryness and painful intercourse without estrogen products.  I have been trying Astroglide Natural but it only gives a little relief and I have burning when I apply it.  I will look into the Scream Cream and some of the other suggestions made here.  It would be nice not to have burning before intercourse, tentativeness during intercourse because of pain, and then burning afterwards.  Am I asking too much??

Mommica111 and 2Tabbies, do the Vitamin E and Coconut Oil suppositories moisturize and lubricate or do you use them with other products?

I am also curious if anyone has found anything to help with the non-existent libido.  It is ridiculous!  My DH is very understanding but I know he would love if I had a little more interest.  Any suggestions?

Thanks.

Blessings2011

Due to severe side effects, I have been off my AIs since May 27th. I was on Arimidex for a year, and on Femara for six months. My MO took me off all of them.

The situation in the nether regions has improved greatly.

Even without my "safety net" of an AI, my MO still approves using a tiny amount of Premarin cream in the outer vaginal area. This prevents bleeding from atrophied vaginal tissues, and when used in the urethra, prevents incontinence, pain, and the symptoms of a UTI.

There is no lubricant on the market that can duplicate the reversal of tissue atrophy like an estrogen product can. I have to trust my MO that she knows what she's doing... I am 100% ER+, but my risk of recurrence is very low.

Now, having said that, I want to bring up a product that was mentioned several pages back: Scream Cream. No, I haven't used it, but those who have, swear by it.

Here is a link to the thread that discusses it:

The Solution To Painful Intercourse!

https://community.breastcancer.org/forum/8/topic/776318?page=1

And......

List of Ingredients for Scream Cream (Must be made in a
Compounding Pharmacy)

http://www.ijpc.com/_pdf/Scream_Cream.pdf

Hope this helps some of you ladies out there.

ALSO - Trader Joe's sells a very nice, relatively inexpensive Organic Virgin Coconut Oil (only ingredient) that is solid at room temperature and shelf stable. I read that one member here shaped hers into little suppository shapes and froze them for future use.

And PugMom - when I read your post, I was thinking "condoms lined with razor blades" is more like it!!! 

2Tabbies

I only ordered the vitamin E and coconut oil suppositories the other day so I haven't even received them yet. It sounds like they are more of a moisturizer than a lubricant. If all the stuff I ordered fails, I'm going to ask my doc about scream cream. 

I don't know of anything for the libido issue. Wish I did. Anybody else think that if men had these problems, there would have been more progress by now? Maybe I'm  a cynic, but it seems like we're just supposed to suck it up.

doxie

I've used pure coconut and then 50% cocoa butter and 50% olive oil to make suppositories.  The later was the best.  Both worked well for a vaginal moisturizer.  Unfortunately I became allergic to both.  Now I'm using shea butter 2:1 ratio to olive oil.  But I've not found anything that works well for intercourse.  My MO and GYN won't prescribe estrogen creme.  

Certain things make vaginal atrophy worse.  No sex for years and no vaginal birth.  I'm just starting to date again and am playing the chaste one until I get up the nerve to have sex.  Last time it was painful and killed the mood even though I prepped with a dilator.  

These should be some of the best years for sex, but instead we are faced with pain.

Jenwith4kids

Has anyone read this book:  http://www.amazon.com/gp/product/0062301519/ref=o...

I bought it, but have only read the intro so far...  sex is pretty far from my mind right now, I hope that will change once I'm through active treatment.  The book got great reviews, hopefully it will be helpful.

Jen

momica111

I use the suppositories for internal moisture and I use Yes for intercourse.   I use coconut oil in the shower as a full body moisturizer and on external vaginal tissue.  I buy trader joes organic and melt a tablespoon in my hands. That's enough for whole body.   Intercourse has gotten a little easier but I am considering Estrace or equivalent which my onc will permit.  

GraceB1

I've starting taking Osphena. It's been advertised on TV lately for vaginal dryness during sex. It is a SERM. Selective Estrogen Response Modulator. It's been tested with tamoxifen but not the arimidex or aromiasin. It "should" be OK to used even though I'm 100% ER+. It has helped tremendously even after only a couple of weeks. It was really a quality of life issue as I was so uncomfortable all the time and it wasn't confined to just the vagina, hurt to even sit. My OB/GYN recommended it as he said I looked really beat up down there and the onc was sorta OK with it. I thought it was re-occurring yeast infections but that wasn't it. 

jill47

Thanks GraceB for the reference of Osphena, I've seen their ads in mags; I'll mention it to my gyno when I see him for my pelvic later this month. 

2Tabbies

My GYN recommended this web site:

http://middlesexmd.com/

doxie

Interestingly it strongly states to not use oils in the vagina because they break down the tissues.  Great.  I easily become allergic to chemicals.  A dry vagina makes it worse because it absorbs whatever is used.  I think that is why I has such a reaction to coconut oil, something I'd never had with it before.  

Edited to add:  In a quick google search, other GYN sites don't discourage the use of natural seed and nut oils for moisturizing.

2Tabbies

Doxie, I wonder if they were referring to petroleum oils like baby oil or vaseline rather than plant based oils? I don't know. Just guessing. Maybe using things like vitamin E and coconut oil hasn't hit their radar. One of my docs, I think it was my GYN, said that vitamin E sounded like a good thing to try when I asked her about it. I'm really bummed at the moment. This very same doc who I've been with since 2003 when I had ovarian cancer just announced she's retiring. To make it worse, she's retiring because her husband has Parkinson's disease. I just want to cry for them and because I'll miss her so much.

doxie

I too think they probably mean petroleum oils that would be in OTC products.  Ironically, petroleum oils are plant based also, just far removed in time and highly processed.

So sorry you are losing your GYN.  I need to move from my beloved CNP to an internist, but don't want to because I've been with her since 2003. We are the same age, have kids the same age, and she also treats my daughter.

ncollett

So glad to see I am not alone in this area. I am 48 and have no desire either. I feel so bad because I love my husband very much and he is still very attractive to me and I would love nothing better then to be able to make him happy and have sex again but it hurts so bad and I the thought of it right now especially two weeks after surgery just isnt appealing. However I am very interested in getting started again as soon as we can and would like to know where to get some of these things to help. Are they over the counter or do you need a script?

DavisD

What an important thread! I haven't had sex in over three years and I truly miss it! It was a contributing factor to my marriage not being what it could be. We just gave up trying. I went through manual PT for over year. Helped until I got in my car...argh. sitting makes it worse. Diagnosed with pudendal neuralgia which can be treated with surgery but risky. Too busy now with all this cancer stuff. Keep trying ladies, I might have given up too soon