Thank you for sharing I look at people in the grocery stores and I say they look happy why am I facing radical vulvectomy with reconstructive surgery I have not been able to sit properly for 3 years now and after recovering from all this I am told it can still come back in the same place I am so afraid and I cannot think of anything else but this if any one can help me please reply
It is very hard not to think about. I had vulvar cancer 2 years ago. I had a radical vulvectomy and reconstruction surgery plus chemo and radiation. I am able to sit ok but every time get up or sit down I am reminded. I feel like other cancers you can "forget" about it at times but not vulvar cancer. I am very worried about it coming back too but I know worrying doesn't help either. Everyone asks me why I am not dating (I am 56)..... I don't even know if I can have sex again or what it would even be like to be in that relationship like that.#cancersucks
When I was in my 60's (I'm not 72-years-old) a nurse practitioner in gynecology told me that at age 70 I no longer needed annual gynecological exams. Well, that was before I developed post-menopausal bleeding and cramps that led to a diagnosis of endometrial cancer. I was 67-years-old at that time. A gynecological exam can and should include not only an internal pelvic exam but also an exam of external genitalia. This discussion is about lichen sclerous and vulvar cancer which are both very real and certainly occur after the age of 70 years old. I agree with you @kellytzoumis that while vulvar cancer may be less common it should be part of our education and we need to continue our gynecological visits as we age.
I am going to get a radical vulvectomy with reconstruction in the next week saw the plastic surgeon yesterday and the meeting was doom and gloom like I will not be able to sit for 6weeks hospital stay I’ll be app 3 weeks have to go home with a private nurse the skin that they will use for the graft on my thigh has been compromised because of the radiation they are not sure if this will take and on and on this will be my 3 operation and you are right sitting is so painful even after the healing of the first 2 operations I am so glad you posted keep in touch
Has anyone had experience using Clobetasol for LS that didn’t remediate the pain? Biopsy said LS/no cancer. Have been using the Clobetasol daily for 2 months without much relief. Maybe it takes longer to work? It’s very frustrating and painful. Saw two different gynecologists and they dont seem to have other options. Anyone know of an LS specialist in the Midwest? Would appreciate your thoughts. And thanks in advance.
Has anyone had experience using Clobetasol for LS that didn’t remediate the pain? Biopsy said LS/no cancer. Have been using the Clobetasol daily for 2 months without much relief. Maybe it takes longer to work? It’s very frustrating and painful. Saw two different gynecologists and they dont seem to have other options. Anyone know of an LS specialist in the Midwest? Would appreciate your thoughts. And thanks in advance.
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It is very hard not to think about. I had vulvar cancer 2 years ago. I had a radical vulvectomy and reconstruction surgery plus chemo and radiation. I am able to sit ok but every time get up or sit down I am reminded. I feel like other cancers you can "forget" about it at times but not vulvar cancer. I am very worried about it coming back too but I know worrying doesn't help either. Everyone asks me why I am not dating (I am 56)..... I don't even know if I can have sex again or what it would even be like to be in that relationship like that.#cancersucks
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2 ReactionsI am going to get a radical vulvectomy with reconstruction in the next week saw the plastic surgeon yesterday and the meeting was doom and gloom like I will not be able to sit for 6weeks hospital stay I’ll be app 3 weeks have to go home with a private nurse the skin that they will use for the graft on my thigh has been compromised because of the radiation they are not sure if this will take and on and on this will be my 3 operation and you are right sitting is so painful even after the healing of the first 2 operations I am so glad you posted keep in touch
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3 ReactionsHas anyone had experience using Clobetasol for LS that didn’t remediate the pain? Biopsy said LS/no cancer. Have been using the Clobetasol daily for 2 months without much relief. Maybe it takes longer to work? It’s very frustrating and painful. Saw two different gynecologists and they dont seem to have other options. Anyone know of an LS specialist in the Midwest? Would appreciate your thoughts. And thanks in advance.
@gayle2457, the steroid ointment clobetasol is commonly prescribed for lichen sclerosus. https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/diagnosis-treatment/drc-20374452
I'm sorry to hear it is not working for you.
Fellow members @173p @ronag, @rashida @willows @helendances may have experiences to share with you.
Have you looked into specialists within the Mayo Clinic Health System serving the mid-west https://www.mayoclinichealthsystem.org/request-appointment?