First of all it's great to know there is a support group and others to talk to who have or are experiencing what you are, so thanks in advance.
I was diagnosed with lichen sclerosis about five years ago, although I think I'd been suffering for years and it had gone undiagnosed. I've been managing it, but in July last year was diagnosed with VIN3. Since then I've had three wide local excisions. The last one in February this year. I still have areas of LS which are being monitored. I went for a check up last Monday and was told it had spread rapidly internally and externally, in a matter of only about eight weeks. Add to the fact that I thought something was wrong as sex had become painful. The consultant said that I have scarring and my vulvar have shrunk away too which makes everything less elastic. He's now advised the use of dermovate and oestrogen cream daily and to use dilators to stretch my vagina. If I don't it may continue shrinking and sex and internal examinations may become impossible. I'm in shock. I'm 56. I have ordered some dilators but the thought of this is making me very anxious and I'm very emotional about the whole thing. My consultant wants to see me in eight weeks to monitor what's going on.
Any advice would be really helpful.
Bab1961, I use the dilators and something called therawand. After 15 vulvar surgeries, cancer six-times and chemo and radiation my vaginal opening shrunk as well. I hate using them and don't use them as much as I should but it is imperative to use if you want to have intercourse again. I was told once each day, then three times per week then once a week. I am supposed to use the therawand for the actual opening, I have the hardest thickest wall all around my vaginal opening that my husband describes as "a wall." I saw a pelvic therapist that taught me how to use them. I still hate doing it, but I know I have to. Sex is painful for me no matter what but I am trying for my husband's sake and for my marriage; I am too young not feel physical anymore even if I get nothing out of it, (my clitoris was removed two years ago).
Lisa from USA Michigan
Welcome to the group. So sorry to hear about all you are going through.
Glad you were brave enough to join the group as everyone here is really supportive. Please ask anything and post at any time.
I know that several of ladies here and also in other gynaecology groups like womb cancer have experience of using dilators. I am sure they will be happy to share their stories with you.
While you are waiting for replies if you just search the community their posts will pop up.
Gynaecology cancers are such difficult ones to talk about and so are the sexual issues that arise.
Dilators are awfully clinical cold looking things I know. Some ladies find buying a vibrator and using that instead a bit less off putting.
If you wanted someone to talk to there is our helping or Ask Eve. Ask Eve is a resource run by the Eve Appeal, a gynaecological Cancer charity. You can ring and speak to their nurse specialist Tracy Mills or email.
Hope some of this is useful.
S3nding a big hug
Download Macmillan booklets
Thanks so much for all the responses. You're so right about the dilators looking clinical. I'm going to try and start using mine this weekend. Not looking forward to it! A vibrator seems a kinder word somehow?
Wish me luck!
Thanks again for your support ladies.
My dilators are a colorful silicone set of different sizes that Mayo Clinic of Rochester Minnesota recommended and so I ordered them right from there. They were expensive but I saw some of the cold hard ones a pelvic therapist showed me and she had never seen the silicone ones before. Doesn't matter how soft they are though, it is strange and not natural but necessary if you ever want to have intercourse with your husband again is what I have found out. I am still in a lot of pain both during and after sex but I am trying like heck to keep things from shrinking and closing up.
I wish and hope anyone else who has more experience with them (dilators) responds to give both of us some advice as I just started them in late Feb/March of this year.
Thanks for your advice Lisa. It sounds like the ones I've bought are similar or the same as the ones you have. I'm not keen on the idea if using them at all but I guess I'll have to try and get on with it.
All the best to you and the other ladies on here.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007