atrophic vaginitis

Blairbeargirl

atrophic vaginitis

Blairbeargirl

I finished my chemo 1 1/2 years ago and my radiation a little over a year ago, and I have been on Tamoxifen now for a year.  Since the very start of my chemo I have been in perimenopause and now my latest blood tests show that I am in menopause. (it seems the same to me)  Since I was HER2+ and I am on Tamoxifen obviously estrogen is out completely.  My question is has anyone else dealt with atrophic vaginitis and had any success without hormones?  Due to not only the chemo, but scar tissue from an appendectomy and severe scar tissue from a c-section my atrophic vaginitis is REALLY bad.  I have been in therepy, doing my pelvic exercises and using the creams that my GYN gave me, however NOTHING is working.  My husband has been very understanding but it has been 2 years since we have had sex.  We have tried but even with all the things that we have been told to do it is so painful that I start to scream.  I have a pretty high threshold of pain so it takes a lot to get me to that point.  Has anyone had this problem and what did you do to fix it?  Thank  you!

Carolina59

Hi Pam, you might want to check out the "I want my mojo back" thread on the Moving Beyond Cancer forum. I am dealing with this issue, but not in a dedicated way. I went to a female-oriented physical therapy practice last year to deal with this and some other issues, but couldn't afford the out-of-pocket expense. My gyn said there are some "inserts" (graduated in size) that one can use. The PT I saw also said the pelvic exercises were not going to be very effective for me due to the vaginal muscle having already atrophied. She said that needed to be dealt with first before the pelvic exercises would do much good. 

I think there are a lot of women dealing with this issue. I'm sorry I don't have any advice for you, just want you to know you're not alone. 

LaurelS

Pam,

I was on Tamoxifen and have recently switched over to Femara.  Like you I had developed painful vaginal atrophy from the low estrogen level.  Think of it as the estrogen level of an 80 year old woman!

Fun fun and giggles Google "vaginal atrophy photos" and see what an atrophied vagina and labia look like.  Then go to the bathroom and take a handheld mirror and see how you compare!  Your labia and clitoral hood will have shrunk up to nothing!  It's shocking.  No wonder intercourse sends us through the ceiling!  I hear ya about the urge to scream.  I'd bite my pillow or lip. Finally, I just avoided intimacy.

I emailed my onc the next day asking for a hormonal cream.  I take a tiny amount every other night (when I remember) and it seems to help a great deal.  After several doses I peeked down there again with my mirror.  Low and behold my clitoris and labia were all puffed up like normal again!  It was truly amazing how very different things appeared.  You will still need lots of lubricant with intercourse, but the Premarin Vaginal cream really helps.

I wish you healing.  I do not worry excessively (not at all actually) about the added estrogen.  For some reason I have peace about it.

Here's a thought....why do they push viagra to aging men and do not talk about the vaginal atrophy all menapausal women experience?  It seems almost cruel! How is an older woman supposed to accommodate her newly erect husband when her vaginal has shriveled and dried?  Ya think there might be a reason for all the impotance in older men?  Like God had it covered?

spar2

I am going through this also and my onc and regular dr. refuse to give me premarin cream since the cancer was er+  Yes it does look and feel different and very painful and we go a long time between times also. no amount of lubricate really helps that much.  I usually bleed after too, the skin inside just tears.  If there is ever a cure I will be first in line. LOL

mmm5

Ladies

My Naturopath, who is part of a large Breast Treatment center, with Onc's etc recomends a natural cream called E3 cream, it is estriol the good kind of estrogen and it is a dead end product that should not be absorbed into blood. My  Onc approved as did the breast center it helps and it also helps the bladder and urethra that can be damaged by lack of estrogen.

Mountains1day

Hi all,

Have you tried a Natural Vitamin E Vaginal Suppository?  I buy them at Whole Foods or a Health Food Store.  The one I like is by Carlson.  They are inserted into the vagina prior to intercourse.  This seems to elevate much of the pain in addition to being a natural way to lubricate instead of a using a hormone.

Lori

ginab

what is safe, is the healthiest, and works?

 I am 44 and to hear that my entire sexuality is going to be reduced to that of an 80-year old woman is not what I want to learn. I want to learn that I can remain hopeful that I might one day mean something to a man, that I might be loved FINALLY as I have never been. If I am an old woman in a young woman's body, what chances have I got? 

 I want to learn what is safest, most healthy for all my parts, and works.  Hopefully someone knows and is paying attention to this topic.

Rubyluby

My cancer was hormone negative, so my ONC prescribed a low-dose vaginal ring called Estring. It's like a rubber baby's teething ring that you insert high in the vagina and leave in all the time. It emits controlled doses of oestrogen constantly. You can't feel it - and nor can your partner. 

I've found it very helpful - together with LOTS of foreplay, naughty videos...and patience...

And, while I miss being the red-blooded horn-dog I once was, I try to hold onto the idea that good intimacy has more to it than the functioning of my vagina  !!!

 All the best to you and good luck.

Be well,

Lucy 

mmm5

LOL

 Thanks for making my day Ruby.....what a good laugh! 

rgiuff

Pam, I am on tamoxifen, and I wouldn't hesitate to ask for some vaginal estrogen product if I had this problem.  Luckily, I don't, I think the tamoxifen is keeping the area well lubricated with all the discharge.  I am experiencing a little atrophy though and urinary urgency and I am considering asking the Gyn for some vaginal estrogen to keep the area from atrophying further.  I really don't worry that this little bit of estrogen would bring back another cancer.  I've read so many studies saying that initially there is a little bit of spike in estrogen levels, but then they go down.  And I wouldn't use premarin as I've read that it has a different chemical structure than our natural estrogen, I'd ask for something bioidentical, like estriol.

Spar, quality of life is very important, if you are suffering that much, and have exhausted all the over the counter recommendations, you should be able to get some low dose estrogen product.  Life shouldn't be all about worrying about cancer recurrance.  Maybe you can get a second opinion from a doc who is more understanding?

carcharm

My doctor gave me compounded DHEA suppositories - not a hormone- I believe it is a steroid. It has helped alot.