Vaginal atrophy

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Hi,

I am desperately hoping someone will have some advice on this.  I started zoladex in september 2022, then also started taking letrozole in March.  In May stopped zoladex and letrozole and switched to just tamoxifen.  I have suffered with dryness which is now a lot better since using hyalofemme.  However, I feel like the dryness is such a small part of the issue.  I feel like everything is very shrunken and shrivelled down there.  Also internally everything has narrowed and shortened and as s result it is absolutely impossible to attempt to have any kind of sex life.  I am 35 years old and really not willing to just accept this as the way things are! Not the easiest of things to discuss but I wanted to ask if anyone had any advice on here because the only advice I seem to get from oncologist or if I look online is about vaginal moisturisers and lubricants.  Like if there is moisture the problem is solved! But it's so much more than that.  

Thanks in advance for any suggestions!.

  • Try talking to your gp about topical oestrogen such as Vagifem or Vagirux. Don’t let them fob you off, if you don’t get it addressed you will probably also start getting recurrent UTIs as the atrophy will also affect your urethra. 

  • Thanks so much for your reply.  I've been told I can't have anything with estrogen in due to my cancer being estrogen positive unfortunately.  You are right about the utis as I seem to be irritated in that way and constantly going to the loo at night.  

  • Hi Lucy, I am about double your age but well remember being 35, you obviously want to make the most of being young and active. I was told that I shouldn't take vaginal estrogen but when I was referred to the gynecologist for weak pelvic floor muscles and urinary problems plus prolapse he prescribed this cream for me. I apply it 2-3 times a week. I too had oestrogen-positive cancer but he reassured me it would be fine. You could also see a specialist physio who might be able to help. Go back and pester them. 

    Good luck xxx

  • Hi LucyP. I started on Tamoxifen in Feb 22. My BC was strongly hormone sensitive. I've been using Vagirux since Jan this year and it has really helped. My oncologist and GP both okayed it. Best wishes

  • You might like to have a read of this article by Liz O'Riordan - a breast cancer surgeon who has had breast cancer twice herself..

    www.dailymail.co.uk/.../Breast-cancer-doesnt-mean-end-sex-life.html

  • Hello LucyP,  Oh boy this is a big issue with the treatments for BC.  I am 74 now and so much older but am still interested in sexy time!!  I am on anastrazole .My first medical oncologist did not address my issues so I changed and got some good sound advice.  First of all he told me no estrogen at all so he gave me some plant based products that are totally safe for us estrogen positive women.  I use two products from a company called Bonafide.  I use Revaree and Ristela.  Revaree is for moisture and the Ristela is supposed to help with increasing our desire.  I will send you the link so you can see what they offer.  
    https://hellobonafide.com/

    It can take time for the more severe symptoms to improve and you need to be consistent.  Here is another good arty.  Keep on asking for help because you and partner deserve it.  Hugs to you.

    Barbara

    Barbara 

  • Ugh, I was, and still am to a big extent, the same. Chemo, zoladex and exemestane all made things get dry and very tight down there. 

    I had to get vaginal dilators to help as I had shriveled up so much. I would recommend them as they definitely helped stretch things out a bit more. I just bought my own but I think you can get them from your GP too. You get 4 or 5 or different sizes and lengths to help. Not very sexy, but starting small and building up is a really good idea! I also use Active Balance Menopause pessaries. I did have regelle and replens from my GP to moisturise, which were OK, but not as good as the Active Balance for the actual atrophy. You use them once a day for a week and then reduce to 2 or 3 times a week. It has hyaluronic acid in it, which I read was just as good as oestrogen cream for reducing atrophy. 

    And obviously use plenty of lubricant during sex. I also have to concentrate on relaxing everything down there for actual penetration as there is still a point that is really tight. Once relaxed and past that point, it is all good again.

    It is frustrating and I have probably gone through a grieving process for the loss of what once was (we both have). Hoping that things may improve more once I'm no longer on the hormone therapy, but it is possible to still have an enjoyable sex life.

  • Rozalia and Pangles that is interesting that they still prescribe you both estrogen based products despite being estrogen positive.  Thanks for the information. Also Pangles thanks for the article, will definitely have a read. 

  • Hopeful Barb thanks for the advice on products.  Will definitely look into the one about increasing desire as really need help with that too.  You are right about being consistent.  It's notssomething that is going to resolve itself.  

  • Beat the breast thanks for your reply. That's really interesting about the dilators.  I am going to ask about that as i think this sounds like something I need and that would help.  Might gove the activ balance a try too. Reassuring to know that you have manage to get an enjoyable sex life back but also helpful to know that it probably wont be the same aa before. Good to have realistic expectations of what can be achieved.