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Everything No One Tells You About Cancer and Your Sex Life



  • cuddyclothes
    cuddyclothes Member Posts: 98

    Sex is incredibly painful for me and has been for some time. I had menopause about two years ago (I'm 59). Real "sandpaper sex", and the entry hurts like a bitch! For awhile I was using Premarin, which helped some. I'm going to try Vagifem, and Replens. Also, I'll ask to be tested for VVS, since that hurts the worst.

    We used KY but that didn't work. So we bought a lube. My doctor said to try Crisco. That's worked best of all but I still have pain!

  • flbuckeye93
    flbuckeye93 Member Posts: 27

    OndbadBoob Thank you for the booklet. I'm undergoing chemo and have had a period for over four weeks due to a fibroid. No menopause for me yet. So, sex has been non existent for DH and me. The one thing the booklet doesn't say that I am embarrassed to ask about oral sex. Is it ok to swallow? 😳

  • littleblueflowers
    littleblueflowers Member Posts: 391

    Buckeye- that's a good question! I gave my husband so much oral during chemo that I gave myself TMJ, so watch that. I also swallowed. Unless there is an underlying medical condition I can't see a reason no to.

  • corky60
    corky60 Member Posts: 453

    Vaginal atrophy, oh boy is it causing problems!

    Five UTIs since September, plus lots of pelvic pain. I use Carlson vitamin E suppositories (coconut and palm oils) plus Crème de la Femme. But the pelvic pain is nearly constant. Last time I spoke to my oncologist she said absolutely no estrogen due to my being 100%ER positive. But my PCP says that's the only thing that will help. This month I'm getting a pelvic ultrasound, seeing a urologist, plus seeing my oncologist. She won't even consider Vagifem. I really want to try it and get my blood estrogen levels measured before and during. My PCP also wants me to see a gynecologist to see if there's anything new in the way of estrogen for this problem.

    Complete hysterectomy years ago and stopped Aromasin and tamoxifen a year and a half ago.

    Suggestions, thoughts?

  • cuddyclothes
    cuddyclothes Member Posts: 98

    corky60 you might want to consider getting a second opinion. It seems odd to have NO estrogen but I'm not ER+.

    There are pain blockers; that was what I was first advised to get. For instance, lidocaine patches.

  • Joiee8
    Joiee8 Member Posts: 1

    I know I am a very lucky person to have had successful treatment, only needed the lump removed, radiotherapy and about to start Tamoxifen ......BUT it's SO condecinging to be told how lucky you are, and then have no real help with something so basic to your life as your sex life and intimacy with probably the one who has supported you the most.

    It seems impossible to just find basic answers to what available, what others have tried and the results if any to help with vaginal dryness

    Just a real commentary of what there is? I'm single and not really wanting to have to baste a lover in coconut oil from the hello .... So any practical knowledge out there?

    Quality of life is as important as quantity

  • Suz-Q
    Suz-Q Member Posts: 110

    I Want My MOJO Back!

    Joiee8, there might be some tips over at the I Want My Mojo Back! discussion thread. The moderator just compiled a nice list in the last few days. Sorry you have to tackle this without a steady partner. It must make dating extremely tough!

  • trvler
    trvler Member Posts: 931

    Corky: I agree with a second opinion. My doctor says it is a quality of life issue and although she doesn't prescribe it, she says it's ok to take if I have to. With that said, I am finding a new GYN because my last doctor let me down by not getting me diagnosed earlier.

  • corky60
    corky60 Member Posts: 453

    I don't have a gyno but have a referral for one. I'll call that dr. my second or even third opinion since my PCP and oncologist both say "no."

  • sas-schatzi
    sas-schatzi Member Posts: 15,879

    Okay, hesitated to post here, You are going to want to riddle me with scattershot. I was married for 38 years. DH and I were dx'd 3 months apart. His was lymphoma. We hadn't had sex in about 20 years. He was impotent due to diabetes and just couldn't deal with anything physical.

    2 1/2 years after he died, I met a guy. We started a physical relationship. It was a tough go at first. I was 62 he was 54. We worked it out.

    What I don't understand is it all works. Not suppose too, but it does. If he takes time I lubricate just fine. If not, I grab the petroleum. Entry is just as it was before Dh and I stopped. Tight, but okay with a bit of a wait, not much, but a bit.

    My Gyn doc, and my Gyn oncologist have no explanation. Gyn Oncologist is on board because of problems created by RAI 131 radioactive iodine 131 problems created in the vulva area.

    Okay, hate me, but any clue why I'm not having difficulty. Oh yeah, I was on the Ai's for maybe a total time of 2 1/2 years over 3 1/2 years. 2009-2012(2013) Tried all three. Horrible s.e.'s just chose that for me it wasn't worth it. My s.e's were exacerbation of post polio pain >>fibromyalgia to the a degree that was beyond sustainable. That much pain I decided wasn't worth it.

    So what's up? Why can I do it without dilating and stuff? Please, don't scream at me. I consider myself pretty weird at this point, 65a nd no problems

  • rleepac
    rleepac Member Posts: 193

    Sas- some women just have more problems than others. I had a heck of a time during chemo but I actually have some discharge with tamoxifen and only occasionally need lube and it's not painful most of the time. Don't ever feel bad that you've got it good...just enjoy it!

  • Frill
    Frill Member Posts: 104

    My surgeon was on the fence about whether I needed to do chemo because of the very tiny amount of cancer in the sentinel node. MO said yes. I'm sort of doing the dog and pony show because I am so incredibly opposed to Tamoxifen afterwards. I want to be able to say - I've done all this cancer cleansing crap, my boobs are gone, I'm not going to ruin the next 5 years of my life afterwards.

    Sex at least during first two chemo treatments is still normal. I'm prolly in perimenopause because I can tell things don't get as immediately wet like they used to, but they do. And DBF is amazing. About two weeks after the MX he just woke me up in the middle of the night, "We're doing it---nothing has changed." So it hasn't been a big deal for me, except I'm not hopping into my Victoria's Secret collection the way I did before. I couldn't have reconstruction, yet, so I'm just not that comfortable in true lingerie. He wants me back in it. I'm trying.

    I just don't want to lose my sex life. I am back together with my BF from when I was 19, he was an amazing lover then (he's older than I am) and he is incredible now. I just got out of a 10 year relationship where the sex was well, not like this. I guard this jealously. If I get chemopause, that's one thing - I mean, I am 47, but thank you.

  • Fran1969
    Fran1969 Member Posts: 7

    Does anyone else have loss of sensation like almost the same tingly thing I feel in my feet and hands from the neuropathy but in my vagina. I'm super worried going forward with Taxol because that's what I'm told is the real neuropathy monster. Anyone...?

  • Gatomal
    Gatomal Member Posts: 418

    corky-- I'm ER/pr pos and my mo said that estring is okay. Firm circle that slowly releases estrogen over a 90 day period. Changed my life. The dose per month is the equivalent of two hormone replacement tablets per month. Tiny, almost undetectable amount in bloodstream. I'm treated at UCSF.

  • yoga_girl
    yoga_girl Member Posts: 80

    Fran 1969

    Experience similar SE intermittent throughout the day. My SE are on the more extreme side than most. My OBGYN team is working with me to assist w/ managing SE so I will have some degree of a quality life. All cotton or silk undergarments. Cotton/linen and soft wool (in winter) for next layer of clothes. Must use lub every day to comfortably sit or walk without pain. Neuropathy becomes one more of those SE we seek to find answers as we recover and take it one day at a time. Finding an OBGYN who will work with you can be a challenge.

    Vaginal atrophy in breast cancer survivors: role of vaginal estrogen therapy.

    Should urogenital atrophy in breast cancer survivors be treated with topical estrogens

    Vaginal oestrogen therapy in women with hormone-sensitive breast cancer

  • corky60
    corky60 Member Posts: 453

    Gatomal, thanks for the suggestion. I am 100% ER + and 10% PR+. I researched Estring and it says it contains 2mg estrogen and lasts 90 days. As I recall Vagifem has 10 mcg ER. You are supposed to insert 1 tablet per day for two weeks (equals 140 mcg) and then 2 tablets per week (equals 20mcg.) Over the course of 90 days that would be 340 mcg (equals .34 mg.) I am one of those women who don't like the ideas of a ring left inside. But I'll see what the gyno says.

  • Suz-Q
    Suz-Q Member Posts: 110

    Corky60, good to know the amounts of estrogen. I'm not sure I would like a ring, however I'm also not sure how compliant I would be about putting the tablets on twice a week. The tablets hardly have any estrogen in them. I'm doubtful that my MO would let me have them. She is rather old school about allowing any estrogen of any kind. Please update us on what your gyno says

  • Suz-Q
    Suz-Q Member Posts: 110

    yoga_girl, I found the linked articles you shared interesting. I found the following article to be thorough and up to date on available therapies for vaginal atrophy. Of course the ones we can't have (hormone therapies) worked the best!

    Atrophic Vaginitis in Breast Cancer Survivors: A Difficult Survivorship Issue

  • yoga_girl
    yoga_girl Member Posts: 80

    Monia Lisa Touch Procedure

    MonaLisa Touch is an FDA approved procedure for the treatment of Vulvo-Vaginal Atrophy (VVA), to include but not limited to vaginal dryness, itching, pain, and incontinence.

    Look for doctors in your area that are now offering this procedure, ask for a consult first to understand how it works. It is not currently covered by insurance (new procedures take time to be accepted and coded for coverage, then the AMA has to approve it before it will be covered on insurance policies). OBGYN and Urology specialists have been some of the first medical providers to offer this treatment in the US.

    Prices vary and average $1500 per treatment in US.

    Risks for patients treated with Mona Lisa Touch are minimal. Most women report temporary side effects, such as slight redness or swelling and some discomfort that usually disappears after one or two days of rest.

    During the healing process, it may be recommended to avoid lifting weights or some activities, such as taking a hot bath, or physical exercise. Your doctor will give you specific indications for a speedy recovery.

    Factors that determine dryness, fragility, loss of mucosal elasticity, this regenerating treatment can eliminate troublesome itching, irritation and pain, which become particularly acute during intercourse. As a result, most of the treated patients report a substantial improvement in their quality of life and in their sexual life.

    The CO2 fractional laser stimulation and rejuvenation process involves cells and tissues and takes a few weeks to be completed. Results will be more noticeable approximately one month and a half after the end of the treatment.

    The Mona Lisa Touch is an in office procedure. It is a walk-in — walk-out procedure that does not require any anesthesia (if you prefer anesthesia, it is available) and takes less than ten minutes.

  • hipline
    hipline Member Posts: 72

    In the last year I have experienced more and more painful sex so I asked for Vagifem. It did work but I was too concerned over the whole ER+ thing to keep it up for more than the first month. So I looked into Mona Lisa. I have had the first two of three sessions of the Mona Lisa touch. It has been a big help and I highly recommend it but I will not give up lubricants and moisturizers. I just read the booklet at the beginning of the post and am going to investigate the vaginal dilators too.

    I'm 57 and plan on having sex with my DH for a long time!

  • moderators
    moderators Posts: 7,894

    Just thought you guys might like to check out our compilation of member's tips on Improving Sexuality/Libido.

    Sexuality Tips from our members

    The Mods.

  • Katja23
    Katja23 Member Posts: 7

    My cancer is ER+, and I have read on the Web that a woman's estrogen levels double when having sex. So, I might conclude that having sex is not a good idea, at least before I start taking Tamoxifen. Am I being silly about this? (I won't start Tamoxifen until about a week after radiation, which lasts 6 1/2 weeks and won't start for 2 weeks.)

  • sas-schatzi
    sas-schatzi Member Posts: 15,879

    Hmmmmm if that's true I should be in lot's of trouble.

  • corky60
    corky60 Member Posts: 453

    Katja23, don't believe everything you read on the Internet. There should be a study that shows the specific numbers, I would think. You are bound to feel vulnerable right now and trying to do everything you can to protect yourself. But giving up sex shouldn't have to be one of them.

  • trvler
    trvler Member Posts: 931

    I asked that same question when I was first diagnosed. I think if sex were a problem, the MO would tell you.

  • Dogsneverlie
    Dogsneverlie Member Posts: 164

    Hi! I just scrolled thru the posts out here - I posted quite a long time ago with this problem as well - SO PAINFUL - someone wrote like sandpaper and man, that sounds about right.

    Anyway, my doctor put me on the Estring ring. HUGE DIFFERENCE. Says it lasts about three months and it's close to three months, and it works. HOWEVER (because you knew there would be a however, right?)......this is embarrassing but it's an O ring that you I have to have my husband (GOD BLESS HIM) insert and remove, I CAN'T DO EITHER! Man....the first time I tried to remove it, I just couldn't.

    So ladies, please ask your doctor if you can try Estring - my doctor did tell me that if I had any problems she could remove it for me but I'd rather pay my DH with a nice kiss than her office visit bill!

  • cuddyclothes
    cuddyclothes Member Posts: 98

    My insurance is not covering Vagifem, they are covering Premarin, which is way more dangerous. In the meantime, I'm investing in vaginal dilators and vaginal moisturizers. I have Premarin, and I want to use it until I get the Vagifem. Entry pain is unbelievable!

    I saw my ob-gyn last week. I don't have VVS, it's vaginal atrophy and dryness. She gave me a long list of products, and found a sheet from a manufacturer so I can order the dilators direct. I haven't had much faith in the ones I've seen sold online.

    In the meantime...sigh...

  • hipline
    hipline Member Posts: 72

    I ordered the vaginal dilators online at Soul Source and they are quite good and were shipped discretely. I hate that I have to use them too

  • yoga_girl
    yoga_girl Member Posts: 80


    Have your OBGYN write you a script for the dilator kit so you can turn in your invoice and be reimbursed by your insurance provider. I will check on the medical billing codes and post for you.