Vaginal atrophy. Why didn't someone warn me?

124

Comments

  • positive3negative
    positive3negative Member Posts: 323
    Hi Nellie,
    Thank you for the compliment. :D

    Happy for you to share it. You can also find it at my blog, https://positive3neg.wordpress.com if that's easier for you. 
  • Shorelle
    Shorelle Member Posts: 80
    Does it happen to everyone? Im yet to experience this but I guess its coming. 
  • Afraser
    Afraser Member Posts: 4,443

    Vaginal atrophy can happen naturally to any woman as she ages. It's also a known side effect of Femara although like most things, the degree may vary widely. For older women like me, there is the murky uncertainty of whether it's "normal" or completely a side effect or, more likely, an uncertain element of both!  What you choose or can do about it (the Mona Lisa treatment may not be as effective if you are having hormonal treatment) is also variable. Many find a lubricant sufficient.  I don't have some of the side effects @positive3negative describes in her blog so am less urgently seeking a correction. More details are available through the private group, but like so much else this is horses for courses territory and what suits one may not suit another.


  • primek
    primek Member Posts: 5,392
    Not everyone gets vaginal atrophy @Shorelle and the best thing to help it is use. So sorting out dryness issues is so important. It's  sonething that can happen to all women post menopause but not all. 
  • arpie
    arpie Member Posts: 8,128
    I am on a Facebook page for Invasive Lobular BC - and one of the members posted about THIS product, claiming it has done wonders for her vaginal atrophy .... 

    Medicine Mama's VMagic - it comes in 2 sizes - 15ml and 2oz ... Looking online the 2oz is usually $70 - so the $40 on the site below is a good price!

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    Part of the conversation on FB was quite funny  ....... .
    For anyone experiencing the Sahara Desert in their former party zone, I just wanted to pop on here and say that I tried this product in desperation based on somebody’s recommendation in here and it is freaking amazing. I am a really sensitive to any kind of chemical and will present with a yeast infection at the slightest change in intimate chemistry but so far this stuff is nothing but awesome.

    and the really funny replies ....
            .....Olive oil, avocado, fruit oil, & honey. Really? I don’t know about this ....
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            ..... You win! I just spit out my coffee and my 69 yr old partner "giggled ....
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  • MovinOn
    MovinOn Member Posts: 7
    My clitoris has almost gone in one week of Tamoxifen. No one told me I'd lose my ability to have sex. I wish I'd never had that stupid mammogram. This is not a life I want to live. My BF is not going to stay around for this.
  • Afraser
    Afraser Member Posts: 4,443
    @Movingon

    ’Vaginal dryness’ is the only clue I got and it really doesn’t quite cut it. There are things that may help - a loss of libido
    is harder to resolve but dryness can be counteracted. There’s a group - Let’s talk about vaginas - on this site that can share some positive information about lubrication and medication. Some oncologists are helpful on this, others not so. Your GP
    may be more helpful. Worst case, what are your options about tamoxifen? And don’t let anyone tell you it’s caused by something else - I was on Letrozole and it happened almost as quickly! Luckily my long term partner is understanding and also inventive! Best wishes. 

  • MovinOn
    MovinOn Member Posts: 7
    edited January 11
    I'm just going to stop Tamoxifen. I don't care if the cancer comes back, I don't want to live in a sexual desert. No one ever ever said out loud that this even could happen.
    I don't see the point in living a life that sucks. My whole life, when I hated myself, when I was broke and struggling, when I was an alcoholic, I could at least get sex as a substitute for love and intimacy. When my BF asks me to leave due to no sex (and I won't blame him, he did not sign up for celibacy, and I am not able to let him have sex with other people) I have nothing of any value to offer anyone. 

  • Cath62
    Cath62 Member Posts: 1,459
    @MovinOn your post is sad. If your BF won't stick around then I don't think that is being a good BF. And if it's only sex keeping him there, even if you had heaps of sex, he would leave gor some other reason eventually.

    Sure sex is fun and part of a relationship but there are products and different ways to explore expressing love and intimacy. Have you listened to Charlotte Tottenham podcast on this topic? It is so helpful.

    Please don't say you don't care if the cancer comes back. You will, you definitely will. As someone dealing with mets, I guarantee you that you won't want cancer back. Talk to your dr, talk to a counsellor but do not go off your meds just only to give sex to a BF - who may or may not stay with you. 
  • Afraser
    Afraser Member Posts: 4,443
    Whoa! You sound as if you have had a lousy time, with too many difficulties and challenges, and now BC. That’s hard and unfair but it does not mean you aren’t worth anything! If sex is a substitute for love and respect, then maybe it’s worth hanging out for love and respect. @Cath62 is telling the truth, you will care if cancer comes back. Talk to your GP about a counsellor, soon, as there is support available to deal with this and the other hurts and pain you are carrying. Cancer is not good, but, just sometimes, it can push us to rethink what we want our life to be, rather than just accept what it is. That road is a hard one too but it leads somewhere and you can find some support to walk it. 
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,124
    @MovinOn thankyou for expressing openly and honestly about the challenges you are experiencing. You may want to reach out to the Helpline 1800 500 258 to chat about counselling support that may be of benefit to you during this time
  • MovinOn
    MovinOn Member Posts: 7
    I started taking Tamoxifen on the 2nd, using a pill cutter to split the 10mg dose into 5mg.
    TEN DAYS and my clitoris is almost nothing, and my labia has shrunk too. TEN DAYS! 
    I haven't slept properly since I started taking it (even with valium, melatonin or Quetiapine). My hair is falling out in handfuls, my skin is easily broken and I'm covered in bruises. I have had the worst PMS since I was a teenager. I can't concentrate well, and feel like I'm in a fog at times. I've lost two kilos in these ten days due to the nausea. So far, the hot flushes have been brief, and occur mostly at night, but my body temperature is now a full degree higher than it used to be (I was on the low side). My moods are extreme, exhausting and cause me shame - I worked so hard in therapy to be better, I obviously am not.
    I've got cording in my arm and extending around my back. I've been seeing a physio for that, but it means I can't ride my motorcycle - which is my mindfulness time. The only time I can fully let go of everything and be "right here, right now." 

  • Afraser
    Afraser Member Posts: 4,443
    These seem to be extreme reactions - how is your oncologist treating theses side effects? 
  • positive3negative
    positive3negative Member Posts: 323
    WOW! Hi everyone! I haven't been here in ages. Please know that I've now passed my ten year mammaversary and I am fit and well. Please know that I had triple negative breast cancer, so comments about the impact of medications aren't relevant to me and I wish I could offer more. Triple negative doesn't have any ongoing medication. You just have to take your chances. I've used yoga, mindfulness, diet, exercise and laughter to decrease my risk of recurrence. So far, so good!

    Please know that since writing this piece all those years ago I have discovered the Joylux site and purchased their vaginal rejuvenation product and that it is a total GAME CHANGER! (No, I am not in any way affiliated and no, I do not receive and kick backs; this is just an honestly enthusiastic recommendation). 

    This produce uses LED light, much like the facial treatments you can get at expensive beauticians, but built into a device that you insert into your vagina three times a week for a few minutes. I found it because I signed up for an app that promised to help with pelvic floor exercises and urinary incontinence (another side effect of vaginal atrophy) and when I got to the end of the very helpful exercise the woman that put the app together had a recommendation for this product. I did a bit of research, purchased one and I am VERY happy with it. It's honestly like having my 20 year old vagina back again! 

    The product is expensive, but not compared to Mona Lisa Touch treatment which needs to be repeated. I noticed improvement in my atrophy within weeks. I've also experienced a surprising recovery of my libido and an enhanced orgasmic response. Yep. I'm a fan! 

    Downsides, apart from the cost, are that it's not waterproof, which is surprising given that waterproof sex toys are so common (don't ask me how I know ;)  but apart from that it's been amazing.


  • Cath62
    Cath62 Member Posts: 1,459
    @MovinOn you post about all the other side effects you are experiencing is  something you really need to talk to your oncologist about. They can help you with what you are experiencing.