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Everything No One Tells You About Cancer and Your Sex Life



  • amylsp
    amylsp Member Posts: 96

    @ Shelly326

    Dilating the vaginal canal with a dildo or vaginal dilator for 10 to 15 minutes right before penetration might work for you. It's the only thing that has worked for me. I just place the dildo/dilator into the vaginal canal and it slowly stretches the tissue and gets it ready for penetration. If I didn't do that each and every time, there is no way I would be able to have sex. Just make sure the dilator is similar in circumference to your DH, insert slowly and use tons of lube. You might have to work up to the proper circumference. I did. It took a few months, but it was worth it.

    I also use a vibrator to bring blood to the area and help the muscles relax. I can't recommend that enough. And similar to what Suladog already mentioned, doing Kegels on a regular basis can really help. Kegels are also great right before and during penetration. If I'm having trouble getting the dilator in, I find doing the Kegel exercises and contracting around the dilator helps it to fully insert. I sometimes have to do the same thing with initial penetration with my DH.

    It's so distressing what breast cancer treatments do our vaginal area and our ability to have sex. It's like really suped up menopause, and is definitely downplayed by the medical establishment. I feel like we're left on our own in this department to stumble around to see what might work. I'm so thankful for these boards as there are so many great suggestions and support!

    I wish you lots of luck, and don't give up!

  • friends1
    friends1 Member Posts: 6

    I was wondering if anyone has had an oopherectomy!

    What is sex like after surgery?

    Not having to worry about birth control is not going to be stress factor anymore so that's a good thing. What kind of lube is the best to use? Did sex really change that much?


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

    friends I had an ooph and hyster in 1996 when I found out my twin was ER+. MY BC showed up at the end of 2008. I wasn't sexually active b/c DH was impotent from diabetes. He passed in 2010. 2012 I met DB when I was 61. I'm now 65. He was 52, now 55. Were active. Any where from 2-5 times a week. No lubricants. Frankly, it's great. Wish My entire life had been this nice. Had to use petroleum at first, but was fearful b/c it's a PAH(polycyclic aromatic hydrocarbon). Skin sensitive to KY(burn like rash). Overtime we've synced, and I don't need a lube. BUT I' quit the AI's I think in 2013 b/c of QOL issues, that also, had a positive influence on dryness. Actually, huge change. My Gyn oncologist can't explain why at 65 I don't have an issue. He just shrugs his shoulders.

    I have viewed Mark Gungor on youtube. DBF hasn't, but he really follows his recommendations by instinct.

    DBF has no issues with my scars which are bad. Ne hasn't a care in the world they aren't real. My counselor says I've hit the mother load.

  • Imagineme13
    Imagineme13 Member Posts: 6

    this is going to be a dumb question but I just joined this site last month and keep,seeing the acronym DH. Question: what is a DH? I know it has something to do with your husband. Thanks in advance.

  • amylsp
    amylsp Member Posts: 96

    DH = Dear Husband


  • Frill
    Frill Member Posts: 104

    I go meet with the surgeon on Monday. Six months ago when I was diagnosed with LCIS, the dr suggested Tamoxifen. I asked what it was, he told me. I looked at my sister, looked back at him, and said, "So you're trying to turn me into a dried up prune? Fuck you." (sorry language) I know exactly what's coming. This only absolutely confirms it. If I get any tinier -- right now it's a good thing -- there's no way I could get a pencil in me.
    I refuse to be on any anti-d that has those low/no sex drive side effects, I know that feeling of "Yeah sex, not so much." I don't want to be like that. I love loving the man I'm with physically. I don't want to destroy that part of me. Plus, the doctor said Tamoxifen was going to age me 20 years?!

  • jjontario
    jjontario Member Posts: 156

    Sometimes I get freaked out that I totally don't have these issues and I've been on Tamoxifen for 10 months. Hot flashes very rarely and only at other issues. I'm seriously doubting if the tamoxifen is working like it should???? I am just totally bummed that I went through breast augmentation and kept my breast sensitivity only to lose it completely with this. Seriously sucks

  • Kellyer41
    Kellyer41 Member Posts: 1

    After my surgery I had an appointment with my chemo doc. I had a list of questions for her, main one was when could my husband and I have sex without using a condom. Doc said we didn't have to use them anymore as I could get pregnant now that my chemo and surgery were finished. (Still had radiation to go through) We had never used the condoms cos we never had sex since I started my treatment.

    At the education meeting, my chemo nurse told us that we had to use condoms so that the chemo wouldn't go into my husband through our bodily fluids. When I said this to my chemo doc at that meeting she couldn't believe that I was told that as we only had to use condoms to prevent me getting pregnant. I have a marina coil fitted so there was no way I was getting pregnant !!!! But the problem I have now is that cos of what that nurse said, my husband is afraid to have sex with me.

    I have been through the worse time of my life and should be happy I'm alive but I'm not Sad

  • suladog
    suladog Member Posts: 837


    I had chemo for triple negative bc 25 yrs ago in my 30's we had sex all through my chemo and he wore a condom to keep me from getting pregnant... I had cancer again this last yr and Taxol and herceptin we had sex all though that too ... No condoms (at this point that's not happening) and he's still alive and kicking last time I looked. In fact he went for his annual physical today blood tests etc and he's in great shape. Have your doc talk to your husband... He can't get anything from your chemo!!!!!! Yikes!

  • Peabrain
    Peabrain Member Posts: 34

    This might be controversial, but my MO said I can use the topical version of Estrace twice a week. I don't know if this is because I was triple negative...

    This cream helps a lot with regaining the elasticity in vaginal tissues and is the only thing I've found that helps. That and a lot of making out and patience from DH.

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

    Many here have donated . Thank you !........Wandering around and cheerleading again :)

    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)


    Link to the mainboard donation page

  • Amstar15
    Amstar15 Member Posts: 25

    I have seen some suggest coconut oil. Are we talking the actual oil (liquid form) and if so what kind/brand do you recommend? Reason I am asking about it is I have seen coconut oil in liquid and solid form looks like Crisco almost.

    Also others have mentioned olive oil... any experience with that?

    Wife and I are trying to lead a "normal" life and I am trying to be as respectful to her as I can. Just bothers me knowing that it is painful for her. She just finished with her chemo treatments which stopped her period and threw her into menopause. So I cant imagine what its going to be like when she is put on her hormone therapy (tamoxifen probably)

  • trvler
    trvler Member Posts: 931

    I don't know if anyone has mentioned it lately but they talk a lot about menopause on Doctor Radio and the woman almost always tells people they need to use dilators. She recommends a brand called Soul Search. I am looking into it. I think it is often more than a simple dryness issue.

  • Free123
    Free123 Member Posts: 22

    Amstar15, coconut oil is solid until it reaches @ 75 degrees F or so…it melts very easily. Just be sure to get pure, unrefined, cold pressed extra virgin etc- from Whole Foods, or pretty much anywhere these days. Coconut oil has some antimicrobial properties that would sway me to try that first. I'm sure others might be able to weigh in about the olive oil.

  • suladog
    suladog Member Posts: 837

    just my two cents I've been using plain old KY since my first diagnosis of triple neg bc back in 1990 ( in my 30s) and still using it after 2nd diagnosis last year trip pos and it has worked great for me

  • amylsp
    amylsp Member Posts: 96

    The only way I can have pain free sex at this point is to use a dialtor/dildo for 10 minutes or so right before sex. We just integrate it and make it a part of foreplay. I highly recommend it for those of you where it's not just a lubrication issue.

  • MB12
    MB12 Member Posts: 44

    I'm so glad I found this thread.  I have a high sex drive and I am dating someone. I don't want to loose my sex drive and I'm curious about any ways to avoid early menopause. Im all for the dildos, oils, etc. Freezing my eggs, as well. Also, I agree about the medical marijuana. Def works. 😉 I live in CA and everybody has a med card. I don't, but I guess I can get one. 😁 

    I'm going to go back through and take notes. :) 

  • JulieG1
    JulieG1 Member Posts: 1

    Hi I also have weight gain and I am on Tamoxifen.  Like you, I have always in the past been able to shift weight by reducing calories and increasing exercise. Now my weight is going up, my calories are down to 1200 and exercise up to walking 30 miles a week.  My problems are compounded by the fact that I had Thyroid cancer in 2009, and had a total thyroidectomy and am on a T4 treatment..  Levels at upper normal level.  Furthermore, at 56 I am menopausal, with hot flushes, vaginal dryness and no libido to speak off.   Oestrogen treatments not advised obviously.  So is my weight gain due to tamoxifen, thyroxin, or menopause or all three?  Has anyone any ideas to help me?

  • moderators
    moderators Posts: 7,903

    Hello JulieG1,

    Welcome to the BCO Discussion Boards! Sorry you have to be here but we're glad that you've found this supportive community.

    The most common side effects of Tamoxifen have been listed here as; menopausal symptoms including hot flashes, vaginal dryness, low libido, mood swings, and nausea.

    You can read about it by clicking on this link: Tamoxifen - Side Effects

    You might also find it helpful to head over to the popular thread: Bottle O Tamoxifen

    Sending big hugs and healing wishes your way!

    The Mods

  • lala1
    lala1 Member Posts: 974

    JulieG1--I'm in the same boat as you (kinda!) where my on and off symptoms are nausea, dizziness, periodic heart palpitations (usually preceding a hot flash) and mild headaches. My ENT says it's the onset of allergies. These 3 issues are also symptoms of menopause as well as Tamoxifen side effects. So which is the culprit? Recently I decided to ditch the Claritin and Flonase I was taking for the allergies and immediately felt relief. ENT says no way those meds caused any of this but all I know is I do feel better, not 100%, but better. During my recovery from my mastectomy I was put on Advil for pain. My doc had me take 3 Advil 3 times a day. I ended up at the ER with really high blood pressure. The doctors couldn't figure out why it was high and eventually sent me home. The next day I had an appt with my MO and mentioned it to him. He questioned my meds and was the one who told me that about 5% of people have adverse reaction to Advil. Maybe I'm also one of those who reacts to Claritin and Flonase.

    I think the problem is that we are dealing with cancer treatment, new meds, probably right around menopause, etc so it's hard to know what is causing what. My MO told me early on to keep a diary of meds I took and how I felt daily. It's really helped me to figure out ways to deal with my menopause/Tamoxifen/Allergies/Old Age side effects!

  • yoga_girl
    yoga_girl Member Posts: 80

    Understanding Atrophy & Vulvodynia – Before/During/After Cancer Treatments

    Reimbursement for insurance (check with your specific plan for coverage):

    Vaginal Dilator Set

    CPT Code: Procedure 57400 or 58999
    HCPCS Code: E1399
    Supplies: 99070


    Cancer, and associated symptoms and treatments, may contribute to temporary pain during sex. Like other pain causing conditions, cancer may cause or contribute to problems with vaginismus.

    Helpful resources:

    1. Women's Cancer Network
    2. Cancer of the vulva
    3. OncoLink – Abramson Cancer Center of the University of Pennsylvania
    4. "Sexuality after cancer treatment: What women can expect" – Mayo Clinic

    Resources and links for vulvodynia and vulvar vestibulitis


    Vulvodynia is a chronic pain condition characterized by burning, stinging, irritation, and/or rawness in the female genital area [according to]. Pain is not always present solely with sexual intercourse or vaginal penetration but typically also occurs during everyday activities (a key way to help differentiate between vaginismus and vulvodynia).

    Vulvar Vestibulitis Syndrome (VVS)

    Vulvar vestibulitis is a common form of vulvodynia that has been described as one of the most common causes of genital and sexual pain in women, affecting upwards of 15% [Gardella, 2006]. VVS is specific to pain on touch and/or pressure only in the vestibule. The vulvar vestibule is the area within the inner lips surrounding the vaginal opening. VVS is typically diagnosed using Friedrich's Criteria [Friedrich, 1987] which is:

    1. Severe pain in the vulvar vestibule upon touch or attempted vaginal entry
    2. Tenderness to pressure localized within the vulvar vestibule
    3. Vulvar erythema (inflammation) of various degrees

    For diagnosis, a cotton-swab is typically used to place gentle pressure in the vestibule. If VVS is present, the cotton-swab test will often elicit severe pain or discomfort from the woman.

    Like other pain causing conditions, any form of VVS may cause or contribute to problems with vaginismus and/or may coexist with vaginismus on an ongoing basis. As a result, women may need to address both conditions before they are able to fully restore fully pain-free intercourse.

    Helpful Organizations & Links

    1. National Vulvodynia Association

    2. International Society for the Study of Vulvovaginal Disease

    3. Vulvar Pain Foundation

    4. Vulval Pain Society UK

    5. The Australian and New Zealand Vulvovaginal Society

    6. "14 Different Treatments for Vulvar Vestibulitis Syndrome"

    7. Hungary Vulvodynia Site

    8. Polish Vulvodynia Site & Support Forum

    Medical Articles/Studies

    1. Bergeron, S., Binik, Y.M., Khalife, S., Pagidas, K., Glazer, H. (2001). Vulvar vestibulitis syndrome: Reliability of diagnosis and evaluation of current diagnostic criteria. Obstet Gynecol, 98(1), 45-51.
    2. Driver, K. (2002). Managing vulvar vestibulitis. The Nurse Practitioner, 27(7), 24-35.
      Metts, J. (1999). Vulvodynia and vulvar vestibulitis: Challenges in diagnosis and management. Available from American Family Physician (March 15, 1999) Accessed 10 June 2004.
    3. Friedrich, EG. (1987). Vulvar vestibulitis syndrome. J Reprod Med, 32(110), 110-4.
    4. Gardella, C. (2006). Vulvar vestibilitis syndrome. Curr Infec Dis Rep, 8(6), 473-480.
    5. Heim, L.J. (2001). Evaluation and differential diagnosis of dyspareunia. Am Fam Physician, 63(8), 1535-1544.

    Vaginal Atrophy

    Resources for Vaginal Atrophy or Atrophic Vaginitis

    Vaginal Atrophy

    We hear from many women who are struggling with painful intercourse. It has been our experience that the number one concern of older women who contact us is painful intercourse related to vaginal atrophy. Vaginal atrophy is a surprisingly common condition.

    Denise – age 68, truly enjoyed her sexual relationship with her first husband. After he passed away, her sex life disappeared. Now remarried, she was looking forward to re-igniting that part of her life. Unfortunately, things are not going well.

    Lee – age 33, undergoes chemotherapy and radiation for breast cancer. These treatments cause her to enter early menopause. Sex is no longer pleasurable.

    Danielle – age 54, has been told she better 'use it or lose it'. But it hurts too much!

    Estrogen 101

    Estrogen is a group of hormones primarily responsible for "maintaining the collagen, elastic fibers, and vasculature of the reproductive organs and urinary tract that is essential for its structural and functional integrity. It also maintains vaginal PH and moisture levels".³ Estrogen is produced in the ovaries, along with progesterone and testosterone.

    What is Vaginal Atrophy?

    Vaginal atrophy (atrophic vaginitis) is a medical condition characterized by the inflammation of the vagina due to diminishing estrogen levels and is usually brought on by menopause. It results in thinning and shrinking of the vaginal walls as well as reduced lubrication. The pelvic floor muscles, urethra, and vagina (the entire uro-genital tract) may all be affected by the reduction of estrogen production.

    Symptoms may include:

    1. vaginal dryness, itching, burning
    2. discomfort and/or painful sexual intercourse
    3. slight spotting/bleeding during intercourse
    4. thinning pubic hair
    5. increased frequency of UTIs
    6. increased vaginal infections
    7. increased vaginal PH levelsWhen & Why Does This Happen?Vaginal atrophy can develop whenever there is a prolonged reduction in the amount of estrogen a woman's body produces. This drop in estrogen could be due to the onset of menopause, treatment for cancer, surgical removal of the ovaries, or following giving birth. Although most commonly seen in older women, it does affect younger women as well.Did You Know?Menopause Facts: Defined as 12 months since a woman's menstrual cycle; average age 51.3 yrs., not a single event, symptoms last on average 3.8 years.³
    1. Menopause – Vaginal Atrophy is a common symptom of menopause. It has been estimated that over 50% of menopausal women will develop atrophy.¹ Some estimates are even higher at 75-90%.²
    2. Cancer treatments – Cervical, Ovarian, Breast, Uterine
      • Both chemotherapy and radiation therapy can cause ovarian failure. With little to no estrogen being produced menopause is brought on. Vaginal atrophy can also be a side effect of treatment for cancers that are not specifically located in the pelvic region.
    3. Surgery – Surgical removal of the ovaries immediately brings the onset of menopause and can cause vaginal atrophy to develop.
    4. Childbirth/breast-feeding
      • Following childbirth and while breastfeeding some women experience a drop in estrogen levels causing vaginal dryness.What is Vaginismus?Vaginismus is a condition where there is involuntary tightness of the vagina during attempted intercourse. Reacting to the anticipation of pain, the body automatically tightens the vaginal muscles, bracing to protect itself from harm. Sex becomes uncomfortable or painful, and entry may be more difficult or impossible depending upon the severity of this tightened state.
        [see Causes]Vaginal Atrophy and VaginismusWhen vaginal atrophy goes undiagnosed and a woman continues to attempt to engage in intercourse, vaginismus may develop. It is important in these situations to address both the vaginal atrophy and vaginismus. Both problems will need to be treated to ensure full resolution. Without addressing the vaginal atrophy, it will be difficult to resolve the vaginismus as it may continue to be triggered by pain from the atrophy condition.Questions to Ask Yourself if You Suspect Vaginal Atrophy:
    1. Has sex become increasingly uncomfortable?
    2. Does your vagina feel like 'sandpaper'?
    3. Do you have vaginal dryness, itching, and/or burning?
    4. Have you noticed a decrease in your natural lubrication?
    5. Have pelvic/gynecological exams become uncomfortable?
    6. Have there been changes in the outer appearance of the vagina? Shrinking folds of skin? Less pubic hair?
    7. Is there a reason you may be experiencing a drop in estrogen production – approaching menopause, cancer treatment, etc.?Solutions For Vaginal AtrophyIf you suspect you may have vaginal atrophy see your physician or a gynecologist for a consultation. She/he will take your personal history and likely do a pelvic exam to examine your vagina. Based on the assessment, a course of treatment will be recommended and will take into account your personal history, symptoms, and severity.The course of treatment for vaginal atrophy may include use of personal lubricant, estrogen supplements, vaginal dilators, and/or pelvic floor therapy (physical therapy).Why Dilators are RecommendedVaginal dilators are used to slowly increase the size of the vagina, restoring length, shape, and elasticity. They are used to gently massage and stretch the vaginal tissue making penetration more comfortable. This is especially effective due to the narrowing of the vaginal canal.Other TreatmentsPersonal lubricants help make the vaginal canal more slippery so there is less dryness and friction during penetration.Vaginal moisturizers help alleviate ongoing vaginal dryness (examples – Replens, olive oil, coconut oil).Kegels are pelvic floor exercises that help to draw blood flow to the vagina, increase elasticity, and strengthen the pelvic floor muscles. They also help to improve control over the vaginal muscles.Estrogen is primarily used to help rebuild the tissue or lining of the vagina. This leads to increased lubrication. There are many different options in using estrogen ranging from vaginal cream, suppositories, or rings, and hormone replacement therapy (HRT). Be sure to discuss any and all hormone-based treatments with your physician.Professionally trained physical therapists can provide pelvic floor therapy for the treatment of vagina atrophy as well as any accompanying vaginismus.For women with vaginal atrophy and no accompanying vaginismus, regular and consistent use of vaginal dilators is often suggested. Typical protocol follows inserting a lubricated dilator, leaving it in for a period of time each day, then gradually increasing the size of the dilator inserted.
  • Suz-Q
    Suz-Q Member Posts: 110

    I'm interested in reading the booklet that OneBadBoob started this topic with, however the link appears to no longer work. Does anyone have an updated link?

    I'm getting ready to start Arimidex in a couple of weeks. Thanks for sharing your candid thoughts and experiences

  • yoga_girl
    yoga_girl Member Posts: 80



    Recommend keeping a journal of all your SE on a daily basis once you start on HT, this helps your team of experts manage recovery options so you will have the best possible quality of life.

  • traveltext
    traveltext Member Posts: 1,051

    As a guy on Tamoxifen for over a year now, I have to say that I'm fortunate in that a lack of side effects means my sex life is fine. The literature points to a different story for nearly half of the men in my situation. In fact, many drop hormone treatment altogether due to SEs. The main difference for me now is that, since my semen is likely contaminated by the drug, a condom is required. 

  • Suz-Q
    Suz-Q Member Posts: 110

    Thanks yoga_girl. I can see the benefit of keeping a diary and I will be taking your advice

  • OneBadBoob
    OneBadBoob Member Posts: 63

    I updated the link on the first post and here

  • rleepac
    rleepac Member Posts: 193

    Traveltext - interesting about semen being 'contaminated'. Did your MO tell you that or are you just being overly cautious? Tamoxifen isn't cytotoxic like chemo and I would think it would be metabolized and excreted the way most drugs using that pathway are (like Tylenol, cholesterol mess, etc) so I don't see how your semen would be contaminated or concerning for your partner in any way.

    I could be totally wrong but from a scientific standpoint, I don't see it being a hazard to your partner. If you have a rationale I'd love to hear it because now I'm really curious

  • traveltext
    traveltext Member Posts: 1,051

    Thanks for your comment rleepac. I do remember warnings about chemo and sex although, not surprisingly, I was not very sexually active while being treated. Certainly Tamox and other anti-estrogens have been proven to affect sperm quality and fertility levels so I was assuming I might be affecting my partner's estrogen levels. I'm very glad to have my libido unaffected by the drug, but I will do more research before I forget the condom. I guess taking precautions for my partner's sake is also important, so she doesn't get turned off by "unsafe" sex.

  • Suz-Q
    Suz-Q Member Posts: 110

    Thanks OneBadBoob! I think it has some good information

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

    Nice work folks...............