Vaginal Atrophy

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KarenRB
KarenRB Member Posts: 9
edited August 2015 in Life After Breast Cancer
Vaginal Atrophy

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  • KarenRB
    KarenRB Member Posts: 9
    edited August 2014

    I'm 45, dx premenopausal, bilateral mast, chemo, menopause due to chemo, Lymphedema, tamoxifen, quit after 2 years, 90% ER+, 10% PR +.

    Vaginal atrophy.  My opening is about the size of a pen.  My husband, as you can imagine, is a little bigger!  Sex is excruciating.  It's not lack of lube; a whole bottle wouldn't help.  Have tried dilators for several months to no avail.

    Have discussed divorce (not a good option; we love each other and have school age kids), open marriage (no).  Have discussed with my GP, OB, and onc at least 3x each this year!  They all poo-poo this!  Even Breastcancer.org doesn't come out and list "vaginal atrophy" as a menopausal symptom.  "Vaginal dryness" is NOT the same thing!!!!!

    What can help this issue????!!!!  I have no sex drive, either, but the basic issue is that the opening is too small for the member!

  • Meadow
    Meadow Member Posts: 2,007
    edited August 2014

    Karen, I can imagine how this is a problem. Intimacy is sometimes tricky after a prolonged illness like battling cancer. A change like you are describing is a big hurdle in your sex life. Could you seek a referral to a specialist in women's female anatomy? Seems like there should be options for you and your husband, it is just finding some answers. Sorry I am absolutely no help! Hoping that satisfaction can be found without actual vaginal sex....Keep searching for answers!

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited August 2014


    When I went to my Uro Gyn about a pelvic floor prolapse question, he mentioned vaginal atrophy to me after a thorough exam. Yes, sex had been excrutiating and yes I was interested in treating it. He prescribed Premarin Vaginal cream and let me tell you. WOW. After the first week of use, I could enjoy sex again! It wasn't the most comfortable it's ever been, but I wasn't cringing and crying in pain. Now, about 2 or 3 months out (and using the cream 2x/week) it is actually enjoyable again!! I don't know if your ER+ dx rules out using Premarin, but I thought I would mention it for you and others that are suffering.

     

     

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited August 2014

    Oooh I so understand, unfortunately. This condition is actually called vaginismus. And yes it starts with atrophy. The dilators are suppose to help if you use them daily. Sorry to say I haven't been very good at that at all. 

    I have some other issues as well which make this even worse. I have a rectocele & vaginal prolapse. I wear a pessary to hold things up. To remove it is difficult, it hurts because as you said that hole has closed up.

    Just add cancer, chemo, rads & BMX to it all & it takes it toll.

    I wish I had some advice. I did join a couple yahoo groups a few years back for the condition. Maybe FB has some too?

  • rgiuff
    rgiuff Member Posts: 1,094
    edited September 2014

    Talk to your Gyn. May require approval from your Onc as well, but some type of vaginal estrogen could be a big help. I have in the past used estrace cream and now use a compounded estradiol, estriol, and testosterone cream. This works the best for me and also seems to help improve the arousal and sensation.  There is also the Estring and a pill called Vagifem. Some oncologists are against any type of estrogen, but these are all low dose and used only in the vaginal area. Many studies have shown that after an initial spike in estrogen levels from these products, that levels then settle back down. They help to plump the tissue back up, take away that raw feeling, help you to make your own lubrication again. And this is an extremely important quality of life issue! Find a Gyn who deals frequently with menopausal issues if your current one doesn't get it.

  • jill47
    jill47 Member Posts: 351
    edited September 2014

    At my 1 year post TH/BSO appt w/ gyn surgeon 2 weeks ago, he did a pelvic and a pap (only have a vagina left no cervix); he said I had some  vaginal atrophy but it is important to treat this because the vagina can tear with penatration. Va sex has been impossible with no estrogen, hurts even to touch.  He prescribed me Estring (there is no generic, co-pay was $50 for 3 month use) but said I had to get ONC approval as Rose said. I got my BS to approve last week; he has no trouble w/ bc pt to take use this, it's 2mg and I read on Susan Love site that a 3 month Estring is equivalent to 2 HRT pills;  so it's very low dose + local doesn't go into blood system. Interesting Rose that you say studies say there is an initial spike in estrogen, I feel it, flushing again like I did right after my TH/BSO. 

       

  • taranebraska
    taranebraska Member Posts: 129
    edited September 2014

    Hello, are any of you on tamoxifen and considering discontinuing it due to this atrophy?  I am finally coming up for air after denial of how bad my body has deteriorated after chemo in 2010 and almost 3 years of tamoxifen.  Any thoughts on stopping tamoxifen to restore?  I'm still testing pre-menopause at age 50.

  • KarenRB
    KarenRB Member Posts: 9
    edited September 2014

    taranebraska:

    I quit tamoxifen after two years.  My cancer was ER+ (90%), PR+ (10%), HER2/NU-.

    I was premenopausal at dx (age 45), but am now menopausal (age 48).  :(

    Devastated about that.

    I quit tamoxifen due to the vaginal atrophy.  However, quitting didn't really improve the atrophy or the lubrication at all, sorry to say.  Since you are still premenopausal (lucky girl!), your body's response might be totally different than mine.

    Quiting tamoxifen is a huge risk, and I know it.  But I also felt so empowered when I did it.  It felt like I was finally taking my health into my own hands for the first time since dx.

    Carpe Vinum:

    I doubt any OB's would allow me to take Premarin due to my high ER+ (90%) status.

    My ONC does not want me to use any estrogen or estrogen related product.  She really does not even want me on Estring or Cream.  I'm sure she's aware of the articles on Dr. Love's web site, though printing them out and giving them to my ONC probably wouldn't hurt.

    This situation has decimated my belief in marriage: why get married if you can't have sex after 45?  I guess marriage provides a social structure for child-raising (which we are still doing), and then a continued social structure for grandparenting.  I asked my ONC about what happens to marriages when the women goes into menopause (especially if, like mine, it was early), and she said, "I guess that's why so many older men go after younger women."  (!!!!!)   But my husband doesn't want a younger woman (I asked, and even suggested!), he doesn't want a divorce (I asked that, too.).  We haven't had sex since I was diagnosed 3 years ago.

    So far, what I am doing is using Replens daily and also using vaginal dialators daily (you can get these from your OB).  I haven't had loads of success yet, but I am trying daily.  At the rate I am stretching, it will take a long time, perhaps a year or even more, (if I can make the dialators work) to get to the point where I can accomodate my husband.  And, at this point, it looks like Replens and dialator use will be something I will do for the rest of my life.  I am also seeing a sex therapist who, if nothing else, is understanding and supportive.

    The attitude I encounter when I talk to my ONC is that with ER+ cancer, "you're just outta luck, sorry.  Suck it up and be glad you're alive.  We can't help you."  I wonder if there would be any options created if men were in this situation instead of women?

    Had I known the situation would be this way (they said "sexual changes".  Ha!  They said nothing about never being able to have sex ever, ever again!), I think I would have skipped both chemo and tamoxifen.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited September 2014

    Karen, is switching to a new ONC and a new GYN an option?  I've changed GYNs twice since diagnosis.   My current GYN would not prescribe anything until he got written permission from the ONC and luckily, my ONC is in agreement that quality of life is important, and not just the idea of avoiding any type of estrogen in any area forever (which I never agreed with anyway).  I too felt that going through menopause was devastating, and was enough to deal with, and was unwilling to compound the problem by further depriving myself of estrogen .And I also quit tamoxifen early (after 3 years) and additionally, refused to take the aromotase inhibitors.  I did make exercise a regular part of my life and improved my diet.  I am over six years post breast cancer and am comfortable with my choices.  And I would gladly use the vaginal hormones for life should I feel the need.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2014


    Hi, new here. Going through Lichen Sclerosus after RAI-131 tx for thyroid cancer. There are Vulvovaginal centers that specialize in what you are discussing. There's only one in Florida listed as such. But I called my regular NCCN center Moffitt to see if the Gyn docs could handle me. They're going too see me. What's interesting, is I found that sometimes plastic sx has to be done. My local docs are clueless. Just have to jump thru the insurance hoops now for coverage, but it's doable.

    This is a decent link

    http://dermnetnz.org/immune/lichen-sclerosus.html

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2015


    For those that are experiencing such pain, and atrophy a patch biopsy is important to rule out a treatable cause. Assuming it is strictly related to the absence of hormones is an error on the docs part.

    My scenario with the LS, I already had a dx when it became a problem. Initially it was dx'd with a patch bx done during my yearly head to toe dermatology vivist. Derm doc didn't ordinarily do vulva screenings. Once the dx was made, she recommended I f/u with a Gyn as she didn't ordinarily do vulva's.

    My situation was not a problem until RAI-131. Then the lid blew off.

    Generally, a Gyn can dx it readily b/c there is a certain color to it. But in my case their wasn't. It was different. How, Lol, I couldn't see. The reason I'm adding this is, I didn't want it to appear I was dissing all docs. If it doesn't fit the textbook pic and they don't have other clues, it's not unreasonable that they wouldn't think post menopausal atrophy.

    In the research before and after it became a problem, I learned so much. Thyroid can be related, as can the hormones. No question RAI-131 being pee'd all over the area was a,  particularly, unique issue.

     My body is having a particularly hard time getting adjusted on thyroid replacement hormone. The Moffit Cancer center NCCN Really Big Wig Doc said that the wildly swinging thyroid levels going through the treatment protocol was the trigger.  For some reason those swings are still going on (no Hashi's, antibody negative).

    My own Endocrin doc(now fired). had no clue eczema &  psoriasis, can be caused by thyroid. Subcategories of Eczema are Lichen sclerosus and Lichen planus. My Derm doc didn't point out the thyroid  connection. AND she didn't point out that LS was a form of eczema, yet she did the vulva bx mid 2013. My hands were a huge problem from early 2013 till mid 2014 for which she followed me all year. The hand dx was dishydrotic eczema. Once an eczema dx is made other forms of eczema are possible. It took me searching it on the internet  on thyroid and lichen sclerosus to make the connection between the two. One of those Oh SHIT moments.

     The reason I'm lucky is the research said in many articles that women can go for years without a proper dx because a biopsy was never done. I happened by serendipity to have started out with an incidental dx because I asked for a vulva exam in my yearly derm exam in mid 2013. My derm doc actually thought it was something else when she did the bx. When it became an issue in May 2014, I was able to react very quickly with steroids and protecterant ointments.

    Karen, As you look at lichen sclerosus, key in on the description of the vagina entry. You are not describing usual post menopausal Introitus and labial atrophy. You're describing very severe. It just would be a good thing to make sure it's not one of the Lichens. The lichens are described as you describe it. In the severest form of the scarring, there can be closure  or almost closure of the vaginal opening. AND in the severest form of postmenopausal atrophy there can be closure or near closure.

    The treatment of serious atrophy. and LE/LP is very different.

    If you get a biopsy ask specifically for it to be read by a Dermopathologist, many articles stated this is important b/c it can be missed by a regular pathologist study. Also, the more recent reading( this week) stated it is very important to read articles/publications that are recent(< a few years). The management has evolved very fast.

    Your scenario is now several years old. Generally, my research said early treatment is very important to prevent what you have described if it is LS/LP. But this is why it's important to get to a Vulvovaginal treatment center. They will be most uptodate. Plus, they are going to have a connection to a plastic surgeon that can help with the scar tissue formed because the proper treatment of steroids wasn't used. This allowed scarring with contractures to occur at the vaginal opening.

    If your opening of the vagina is postmenopausal atrophy, you get the PS that is trained to fix it, by going through a vulvovaginal center. NOT some surgeon that maybe does something a couple times a year.

    Hope this all makes sense. It's a tad jumbled. Sassy

  • CoastalXPat
    CoastalXPat Member Posts: 83
    edited October 2014

    I had the same diagnosis thanks to chemo. The answer for me was vagifem. I'm not at 100% but a helluva lot better. I'm curious about the estring though because I wonder if a daily dose would be better than the 2x/week pills. Also my co-pay is pretty high, about $50 for a 4-week supply. It's worth it though.

    Btw I was under the impression that tamoxifen wouldn't contribute to this because it only affects one type of estrogen receptor?  Confused now -

  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    Anyone here been prescribed DHEA suppositories? My team says it doesn't get absorbed into the bloodstream and is okay for ER+ survivors. No guarantees, though, of course! I can't find any studies that have been done on bc survivors. I am hesitant to do this, but really need something desperately. Even exams are painful at this point.

  • Jelson
    Jelson Member Posts: 1,535
    edited April 2015

    dhea suppositories have been discussed on BCO before - use the search function for the discussion boards to find several threads. I thought there was a clinical trial specifically for women with breast cancer somewhere in Iowa or Nebraska but I can't find mention of that now. here is one citation from the Cleveland Clinic.

    My gyno told me that that vaginal tissue was very resilient, like it will heal after being ripped to shreds?? thank you very much, A**hole.


    http://www.clevelandclinicwellness.com/Features/Pa...

  • Trvler
    Trvler Member Posts: 3,159
    edited August 2015

    Has anyone heard of the Mona Lisa thing? I guess it's some type of laser treatment for this?

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2015

    They're was another thread describing that. I'll see if it's in my list

    Found it

    https://community.breastcancer.org/forum/80/topic/830905?page=1#post_4433152

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