Forum Discussion

LeeTeamAndo's avatar
LeeTeamAndo
Member
11 years ago

Why dont we talk about this?

Hello,

I was diagnosed October 2013, surgery and reconstructive surgery continued, chemo and then tamoxifen which I have stopped taking. Why aren't we told about all the side effects? Why I wasnt told I had cancer from the start then that's a whole new question too as surely this process would have been handled differently.

The chemo has depleted my oestrogen and I am now with a nil operating vagina. I'm a happily married woman but its impossible to engage in let alone enjoy intimacy and what can I do about it? It's like the doctors don't care!

I have taken on alot of naturaly therapies and diet lifestyle changes but if anyone knows anyone we can talk to, to get this important part of our relastionship back on track please anyone any direction would very much appreciate it :-)

 

chemotherapy
Reconstruction
side-effects
tamoxifen
vaginal-atrophy
  • suzieq's avatar
    suzieq
    Member
    11 years ago

    For those of us who suffer vaginal dryness (atrophy) as a result of either chemo, anti-estrogen drugs or plain old menopause there is a successful new NON hormone based treatment approved by the US Food and Drug Administration in September 2013 and is available or soon to be available in the EU. There is evidence this treatment may also have great benefits to bone and breast tissue (suggest you read clinical notes) 

    Ospemifene is the first and only non-hormonal agent approved for the treatment of moderate to severe vaginal and vulval atrophy. This breakthrough brings a new nonestrogen alternative therapy for women with this condition.  I have shown the official clinical notes to my GP who believes this drug could be of great assistance to me and thousands of other women in my situation but said I would need to talk to my Oncologist for availability. My Oncologist's office is talking to their Pharmacist to get access to see if they can access this medication.  Here is a link to the American Govt site with the clinical notes for this drug.  Anyone suffering this terrible debilitating condition should print this out, take it to their doctor. Here is the link to the clinical notes on this drug.

     

  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    I'm glad you brought this up, it is a sensitve subject and one that I have been thinking of lately, we should be able to discuss anything that's worrying us, take care, 

    Hazel xx

  • Blossom59's avatar
    Blossom59
    Member
    11 years ago

    I find I am now very dry on the outside, from this site I got the tip to put cold pressed virgin coconut oil on the outside, can be put inside as well, don't have to worry about oestrogens. It is also very cheap, unlike all the creams recommended on this site.

    Because I had other issues with my uterus, as part of my treatment plan of having ovaries out I also decided to have cervix and uterus out as well.  I was left to google the whole sex thing and I must say even on the net it is not talked about.  It really was a wait and see process.  Much to my relief it still works down there, the tiredness takes over and the opportunities are not a frequent but it does all get better with time.

    Julie, I think your private group is wonderful, as sex is something that most don't feel comfortable or want to talk openly about, which on a site like this is a real shame.  Lucky you have directed Lee to your group, still a pity that it has to be talked about in the closet.  

    Candy

  • Merlins_mum's avatar
    Merlins_mum
    Member
    11 years ago
    You will find some useful stuff in this small group. Just request membership and Pam will sort it for you. We have the same issues and have found some ways of dealing with it that make an intimate life possible and pleasurable again No fun huh! Love Julie