Vaginal Atrophy

Posted by daisysocal @daisysocal, Sep 27, 2022

Seems like vaginal atrophy is a taboo topic, yet so many women are suffering with this. I had breast cancer and was on anastrozole for 7 years. I’m not sure if my Intercourse pain is due to lack of estrogen from the estrogen blocker or from menopause or both. I have opened up about this with female acquaintances and have found there are so many women who suffer from this. It’s a subject so difficult to discuss with your husband, partner, doctors, etc. Many women have told me estrogen creams don’t work, Mona Lisa type treatments don’t help, and our sex lives are non-existent. I was a very sexual woman, wife, enjoyed sex so much. I am very active, attractive and fit at 60 years old. But quite honestly I feel almost worthless when it comes to being intimate. It’s really sad and I wish I could have normal sex again without feeling like I’m being stabbed by a knife, hiding my face crying, and swollen. In fact, I stopped having sex altogether about 2 years ago. It just really stinks.

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@artscaping

Wow...this is like meeting a superstar. Good afternoon @cindylb. I have taken some time to review your refreshing and extensive "history" on Connect. How lucky we are to have had an opportunity to hang in with you for many years. I love that you have had your own business and use some of those "executive skills" to care for yourself and your husband.

I joined Connect in 2017 as a caregiver for my life partner. Now Connect is the #1 activity I engage in and from which I learn how to handle aging, medical, and even insurance situations. Actually, my daughter now handles my insurance situations because my memory and cognitive challenges make it impossible for me to follow directions accurately.

I just read your last post and am interested because I have been treated for vaginal atrophy for several years. You are right.....it can be unnerving. I have an appointment with my urologist next Tuesday to review the results of my recent bladder sling surgery and the atrophy. My insurance won't pay for any estrogen so I use Premarin. Is that something you have tried? So what might be my final attempt at orgasm was, to put it bluntly, disgusting.

The bladder sling surgery which I chose in a shared decision with my surgeon has not been more than 25% effective yet. Can you call upon your helping and mentoring experience to tell me what to say, or ask, or bemoan?

I have read about Viveve through Northstate Plastic Surgery. Is there other information I should be reading?

Thanks for your help. I will get back to you the following week if I learn anything of sharing value. Now it is time to go back to my normal Support Groups.

May you be safe, protected, and free from inner and outer harm.
Chris

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@artscaping Thanks for what you do as a volunteer!! I would really like to do that someday but I'm still pretty strapped with my caretaking duties. I'm just now getting back to taking care of my medical 'issues'. Someday I hope. This site and all the great people who share on here are lifesavers for me (and others I'm sure).

I'm still researching this Viveve. I asked my new primary care about it and (not completely sold on this guy) said he knew nothing. I had a great feeling about the Urogyno I saw (first/only visit) as she's in her late 70's and is very frank and forthcoming. I'll share more as I learn more too.

If you're looking for bemoaning experience, I've taken that to an art form (ha ha). I have learned that you really have to do a lot of your own research (at good sources) and get input from others in your situation and then take that back to your doctors. Quite often I have brought up things to my docs and my husbands (armed with printed materials) and the doctors are surprised to learn something. Most important...you know your body. I find doctors gaslight me a lot (sigh) and I have to temper my anger about that with facts and being persistent. If what they've done isn't working and if this might be another, second or additional option then ask them to explain how this treatment might help restore your vaginal tissue. I'm still researching myself but I'll certainly share as I move forward. Lovely to meet you! Hugs

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@cindylb

Hello .....

I am new to this group but am a member of the Breast Cancer Group (survivor 7 years) and a member of the Lung Cancer group (husband is still battling).

Anyone heard of the Viveve Treatment:??????
I have had vaginal atrophy for around 5 years. I first noticed when I had a terrible burning sensation one day and found that I have a cystocele (a drop of my urethra/bladder into my vaginal canal due to vaginal atrophy). I have been using estrogen and Replens for years. Then one day I got a massive, terrible, on-going fungal/yeast infection that took weeks to clear up. I'm 65 now and on Medicare (thank goodness) and finally able to get some care for several issues. Overall, I'm as dry as the Sarhara Desert everywhere (eyes, mouth, skin, hair, vagina) and am on a quest to get some answers.
One option that has been presented to me is an intravaginal treatment called Viveve. It's a laser treatment, inside your vagina that creates an environment that makes new cells grow (similar to the action that intercourse might have I guess, but that's in layman terms). The results create new cells that keep the vagina from atrophy for either one year, five years or perhaps a lifetime....different for everyone. Has anyone else heard of this or something similar?
I would really like to try this, as the constant creams I have to use (multiple times per day) and as an estrogen positive breast cancer survivor - who uses vaginal estradiol cream carefully- I'd like a more permanent solution. If I don't stop the march of time with my vagina I will have to get a pessary (an item that holds my bladder in place to keep it out of my vagina).

The drawback is that the procedure is FDA approved but Medicare and Health Insurance won't pay for it and it's pricey (about $2,500). My Urogynecologist believes it's safe and was very frank about how angry she is that health insurance and Medicare consider the treatment 'cosmetic'. Not sure about you gals but how the inside of my vagina 'looks' isn't a big factor for me, ha ha. How it feels and the subsequent problems and distress vaginal atrophy and dryness can cause...that's more of a concern to me.
Hugs to all...........would appreciate any input.

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I have heard of the procedure however don't know anyone who has had it done post-menopausal and or on estrogen inhibitors experiencing vaginal atrophy. I believe this is one of the two biggest issues I have post-breast cancer and letrozole use this year. At 63 I developed this problem overnight and it is only getting worse. Besides the obvious and profound effects on my sexuality, it actually hurts to sit. I do use hyaluronic acid vaginal moisturizers which help but not enough. I have many questions for my oncologist's next visit about her patient's experiences if any. I wonder if a patient on estrogen inhibition/aromatase inhibition is a good candidate for this procedure. It would seem to me it wouldn't last long. Yes, I too am angered this procedure is not covered by health insurance. We must keep fighting! Any information I find out I will post here. Wish you well.

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@randy36

I have heard of the procedure however don't know anyone who has had it done post-menopausal and or on estrogen inhibitors experiencing vaginal atrophy. I believe this is one of the two biggest issues I have post-breast cancer and letrozole use this year. At 63 I developed this problem overnight and it is only getting worse. Besides the obvious and profound effects on my sexuality, it actually hurts to sit. I do use hyaluronic acid vaginal moisturizers which help but not enough. I have many questions for my oncologist's next visit about her patient's experiences if any. I wonder if a patient on estrogen inhibition/aromatase inhibition is a good candidate for this procedure. It would seem to me it wouldn't last long. Yes, I too am angered this procedure is not covered by health insurance. We must keep fighting! Any information I find out I will post here. Wish you well.

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@randy36

I will share here too as I look into this. I wasn't able to take the estrogen inhibiting drugs due to side effects but I lost my hormones anyway, but I'm sure it took my body much longer to get in this state. I do use estradiol vaginal cream and it helps. My oncologist cleared it for me and no doctor has seemed concerned that you get too much of it systemically in the body. You might ask your doctors about that as well. It made all the difference, up to this point, and now I'm on this journey to get a more effective/permanent solution. Hugs to you.

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Thank you for your reply. Yes, I was told that I could use vaginal estrogen cream but only a pea size up to 3x/week. I was diagnosed with 100% estrogen-dependent breast CA. I hate the multiple side effects of the AIs and understand why you went off. I am still within my 1st year since diagnosis, treatment, and double mastectomy so I'm quite nervous about quitting the letrozole and using the estrogen creams. It does help though. If I find that having this procedure is not only highly effective but lasting on AI post-menopausal patients, I would certainly consider it but financially would be difficult. I wonder what women can do to bring this issue to the forefront of women's health issues and help force insurance companies to cover this under such circumstances...I will continue to follow this thread. Again thank you.

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@randy36

Thank you for your reply. Yes, I was told that I could use vaginal estrogen cream but only a pea size up to 3x/week. I was diagnosed with 100% estrogen-dependent breast CA. I hate the multiple side effects of the AIs and understand why you went off. I am still within my 1st year since diagnosis, treatment, and double mastectomy so I'm quite nervous about quitting the letrozole and using the estrogen creams. It does help though. If I find that having this procedure is not only highly effective but lasting on AI post-menopausal patients, I would certainly consider it but financially would be difficult. I wonder what women can do to bring this issue to the forefront of women's health issues and help force insurance companies to cover this under such circumstances...I will continue to follow this thread. Again thank you.

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@randy36 When you next see your oncologist you might ask how to use the vaginal estrogen cream. At the Menopause and Sexual Health Women's Clinic at Mayo Clinic I was instructed to put a pea size amount on my fingers and rub it in like I would use a moisturizer on the labia majora and the labia minora (inner and outer lips of the vulva) which allows the cream to penetrate at the opening of the vagina. I had been using the full amount in the insert tube as the directions instructed and the nurse educator told me that this wasn't necessary for me. It did work. Unfortunately, I can no longer use it per my oncology nurse practitioner and radiation oncologist. At least for now. I'm hoping that might change in the future.

Will you let me know what your oncologist says? I hope you have the success that I did when I was using an estradiol cream.

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I was also 100% estrogren positive.....little progesterone (ever)...kinda explains that cancer 'thingy', sigh. I'll keep you posted and YES.....women are still not on par with treatment and care from the medical community. It is, of course, wrong. I think there are lot of us blazing that trail and trying to get better medical options.

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@naturegirl5

@randy36 When you next see your oncologist you might ask how to use the vaginal estrogen cream. At the Menopause and Sexual Health Women's Clinic at Mayo Clinic I was instructed to put a pea size amount on my fingers and rub it in like I would use a moisturizer on the labia majora and the labia minora (inner and outer lips of the vulva) which allows the cream to penetrate at the opening of the vagina. I had been using the full amount in the insert tube as the directions instructed and the nurse educator told me that this wasn't necessary for me. It did work. Unfortunately, I can no longer use it per my oncology nurse practitioner and radiation oncologist. At least for now. I'm hoping that might change in the future.

Will you let me know what your oncologist says? I hope you have the success that I did when I was using an estradiol cream.

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Hi Helen, thank you and yes I was instructed the same. I just didn't go into detail. Good to know the docs are on the same page. I will post what I find out after my appt. next week.

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@cindylb

I was also 100% estrogren positive.....little progesterone (ever)...kinda explains that cancer 'thingy', sigh. I'll keep you posted and YES.....women are still not on par with treatment and care from the medical community. It is, of course, wrong. I think there are lot of us blazing that trail and trying to get better medical options.

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@cindylb I so agree with you. When I first went to the Menopause and Sexual Health Clinic at Mayo I was introduced to information and approaches that I knew nothing about. All based on research evidence that is likely available to plenty of other medical providers. Yes, we are blazing the trail and we must keep advocating for ourselves.

Will you keep us posted on your own medical appointments and what you learn?

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@randy36

Hi Helen, thank you and yes I was instructed the same. I just didn't go into detail. Good to know the docs are on the same page. I will post what I find out after my appt. next week.

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Hi Randy @randy36 It's good that your doctor gave you that information which means that they are reading and getting the newer evidence. I'll look for your update next week.

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@naturegirl5

@cindylb I so agree with you. When I first went to the Menopause and Sexual Health Clinic at Mayo I was introduced to information and approaches that I knew nothing about. All based on research evidence that is likely available to plenty of other medical providers. Yes, we are blazing the trail and we must keep advocating for ourselves.

Will you keep us posted on your own medical appointments and what you learn?

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@naturegirl5 I certainly will. I would be very interested in any treatments or approaches you might have learned at the Mayo Clinic as well. I don't have access to Mayo where I live and I learn a great deal that is helpful from these forums and from the Mayo Newsletters, etc. Hugs to all as we work together to improve our health as women. Hugs.

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