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March 2012 Ask the Expert: Sex and Intimacy

During the month of March, Living Beyond Breast Cancer expert Kara M. Nakisbendi, MD, answered your questions about how to increase your sexual desire, physical comfort and emotional and sexual intimacy during and after treatment.

You may also be interested in our February community meeting on Sex and Intimacy.

How to tell partner about lack of feeling and soreness in breast after a mastectomy and reconstructive surgery?

How to make intercourse better when experiencing vaginal dryness and tightness after treatment?

Don't want partner to see scars after surgery, so I turn down advances and feel guilty. Advice?

Is lack of desire for partner after having a mastectomy just part of getting older? What can I do?

How to get desire for making love back after hysterectomy and menopause?

How to maintain that nice warm feeling?

How to manage night sweats and sleep deprivation which makes intimacy a challenge?

Having trouble with ability to orgasm. What can I do?

Intercourse has become painful since chemo-induced menopause. What can I do?

I've lost interest in sex. How to re-start interest?

After a complete hysterectomy, do I need to have a yearly exam with a gynecologist?

Question: After a mastectomy and reconstructive surgery, I no longer have feeling in my right breast and my left breast is sore to the touch. I’m not sure how to tell my partner this. Any ideas as to what I can do?

Dr. Nakisbendi: Many of my patients who have had breast reconstruction have a hard time getting used to their “new” breasts at first. It takes some time to feel like they are part of your body.

The first step is to sit down with your partner (outside of the bedroom and separate from an intimate moment) and let him or her know how your body is feeling. Explain that you are experiencing a lack of sensation in one and pain in the other. Let him or her know that right now it doesn’t feel comfortable to have your breasts touched, if that is the case. More than likely, your partner is already concerned about touching your breasts out of fear of hurting you. He or she may just avoid the whole area, making what should be an intimate experience a very awkward and frustrating one.

When you are having this discussion, let your partner know what feels good and what doesn’t. As time goes on, update your partner as to any changes that have taken place. Also decide whether you’re ok with allowing your partner to enjoy the breast that doesn’t have sensation, even though you may not experience pleasure from it, as long as you are experiencing pleasure in other ways.

Question: After undergoing breast cancer treatments, my vagina feels dry and tight and intercourse is often painful. How can I make it better?

Dr. Nakisbendi: Chemotherapy, aromatase inhibitors and tamoxifen all affect the vagina. Symptoms are especially distressing if you have sudden menopause from chemotherapy.

Aromatase inhibitors lower estrogen levels which causes vaginal dryness, and tamoxifen can give you moisture but may make you feel dry. When you lose estrogen, vaginal cells become thin, blood flow decreases and elasticity of the vagina is reduced. These changes affect your sexual response, and your vagina may not respond to sexual stimulation with the same engorgement and lubrication. Even with lubrication, intercourse can still be uncomfortable or painful.Once you have painful sex you may start to avoid sex altogether, which results in even less vaginal elasticity. A vicious cycle ensues.

The key is to first break the cycle. Let your partner know that you are experiencing these symptoms because of the cancer treatments.  Explain that you are working on improving them, and the first step is to avoid penetration for right now since it is painful. Decide whether external stimulation is still on the table. It is really important to stay intimate even though you may not be having intercourse right now.

The next step involves shopping and experimenting. Avoid lubricants with a lot of additives. Drugstore.com and Sliquid Organics as well as your local drugstore or grocery store have a variety of lubricants. Almond or coconut oil are the best lubricants available because they do not contain chemicals and won’t be irritating. They also don’t have an annoying smell or taste. If you are using condoms, you’ll need a water-based lubricant like Astroglide.

Massaging these oils into the vulvar tissue and at the vaginal opening on a regular basis will help with the dry sensation you may be experiencing. Coconut oil at room temperature can be melted slightly and formed into small spheres which can be inserted into the vagina at night. Experiment to see which lubricant works for you. Incorporate regular massages using these oils into part of your self-care or intimacy with your partner.

If penetration isn’t painful—just tight and dry—you can experiment with a narrow, smooth vibrator with lubrication to get your vaginal elasticity back. Regular use (i.e. two times a week) will help you learn what feels good and what doesn’t. It will help you remember that penetration doesn’t hurt.

If penetration is near impossible and it feels like your partner is hitting a “brick wall,” purchase vaginal “dilators” (I like calling them “trainers”) such as the ones sold on vaginismus.com. They also sell a book that guides you through these exercises.

Start with the narrowest one and insert it very slowly into the vagina. Lay down on your back on your bed with your knees bent and relaxed. Lubricate the vaginal opening and the trainer and insert the trainer into the vagina comfortably. You should not experience any pain; tightness or pressure sensations are ok. Try to leave the trainer in for 20 minutes. This allows the muscles around the vagina to fatigue and not react to penetration.

Once the smallest dilator is easy to insert and you can leave it in for 20 minutes twice weekly for two weeks, then progress to the next size. Once you have reached the second-to-largest size, you can try penetration with your partner.

If penetration doesn’t become easier, you may need a little more support from a healthcare provider. Seek out a physical therapist who specializes in pelvic floor disorders.

If lubricants are not working, consider using localized estrogen therapy. Many women are anxious about using estrogen when they have been treated for breast cancer. Your healthcare provider can help you understand why prescriptions such as Vagifem or Estring can be used safely in most situations.

Remember that penetration is not essential to having a satisfying sexual experience. Having fun, trying different sexual aides and enjoying each other’s bodies can be extremely fulfilling.

Question: I just had surgery, and I don’t want my partner to see the scars; I feel like they would be upsetting to him. He’s made several advances, but I’ve turned him down and I feel guilty. Any advice?

Dr. Nakisbendi: It is normal to fear your partner’s reaction to your scars. I am sure it is hard enough for you to get used to these changes. The fact that your partner has made several advances means he is ready and probably wants to see them. More importantly, it sounds like he wants to be intimate and close with you.

I know as women we think men only care about having sex just for pleasure, but the truth is they have sex so they can be close to their partners. A lot of their self-worth is attached to how they please their partners. It took me a long time to realize this!

The other struggle we have as women is how much we get caught up in our physical appearance. So many of us may refrain from being intimate because of how we feel about our body. The truth is that our partners want to have sex no matter what!

Try to talk with your partner outside of the bedroom, and explain that you are worried about how he may feel when he sees your scars. Let him know that is why you are avoiding sex. You can also talk about how you may feel more comfortable wearing a top while you make love.  

A lacy camisole that feels good to you or a loose comfy t-shirt that covers your scars may help you through this transition. It is very possible that your partner sees the scars and quickly moves on to making love with you. The scars show what you have been through and that you survived so you could be in this moment with him.

Question: After having a mastectomy I have no desire for my husband, either for sex or even kissing and being cuddly. What can I do? I am 76 and he is 77. Is this just part of getting older?

Dr. Nakisbendi: If you recently had your mastectomy and you had desire for your husband before this, then I don’t think your decrease is necessarily due to getting older. Having the mastectomy may have affected your desire to be touched in general.

Surgical procedures, particularly ones that alter the way our body looks, can affect how we feel about ourselves. Confronting a cancer diagnosis can also be overwhelming, and sometimes we may “numb” ourselves to our fears. Unfortunately, we can also numb ourselves to the good feelings. Whether you are uncomfortable with how your body looks or you are concerned as to how your husband feels about your body, try to sort through these emotions and discuss them with your husband.

Experiment with massaging parts of your body like your hands or feet with soothing oils. Get a gentle massage and see whether you can reconnect with your body and experience positive sensations that aren’t necessarily sexual. Gentle stretching like yoga can help your body work out some of the physical and emotional tensions that have built up. You can then slowly progress to cuddling and hand holding with your husband if that feels right. Giving each other massages can be sensual and stimulating experiences that don’t necessarily have to lead to sex.

If this feels too overwhelming, consider working with a therapist who can help guide you through this process. You can find a sex therapist in your area on aasect.org.

Question: How can you get your desire for making love back after going into menopause after a hysterectomy?

Dr. Nakisbendi: Desire can be very difficult to attain even in the best of circumstances. So many factors affect our desire such as lack of sleep, poor eating, stress, lack of exercise and lack of hormones.

Eating well and exercising help maintain healthy blood flow to our body, including our genitals. Experiment with vibrators or other sexual aids. Create fantasies in your head or act them out with your partner. Try to maintain some regularity in your sex life so you can remember that you enjoy it.

What we don’t often realize is that our brain is our biggest sexual organ. If we “feed” our brains sexually arousing food, our bodies can respond. You may need a lot more stimulation when you have had surgery that may reduce the blood flow to your genitals or if you have had your ovaries removed.

Reading erotica can go a long way to help desire. Search online for books that cater to women. A recent new series called Darker Shades of Grey by E.L James is one of the best examples of female erotica. It has incredibly sexually explicit scenes (this is not for the faint of heart), a great love story, an attractive couple and expensive shoes! It was clearly written for women.

If you aren’t enjoying sexual intimacy or if these ideas don’t help, discuss other options with your doctor. Treating low sexual desire is a little more complicated when you have been diagnosed with breast cancer, but it is certainly not impossible.

Question: I start to respond, then [I] rapidly fall off. [Is there] anything I can do maintain that nice warm feeling? ([I have] stage IV breast cancer, [and I am] being treated with Eribulin.)

Dr. Nakisbendi: It’s great that your body is able to get that nice warm feeling. It sounds like you just need help sustaining it.

You might need more intense stimulation in order to maintain arousal. If you haven’t already, try using a sexual aid such as a vibrator. Find one that has several different settings so you can experiment. Perhaps choose a vibrator that provides clitoral and “g-spot” stimulation at the same time.

Don’t forget to engage your pelvic floor muscles during arousal. Many women know about Kegel exercises to help treat incontinence, but contracting these muscles and tilting the pelvis helps bring blood flow to your genitals.

If this doesn’t help, you may want to consider discussing this with your physician. Medicines designed to treat men’s erectile dysfunction such as Viagra haven’t been found to be consistently helpful in women with low libido, but they can sometimes help women who have arousal disorders. Your doctor can prescribe a compounded cream to use on the vulvar area to help with arousal. Review your medicines with your doctor to see if there are ones that may be affecting your sexual response, such as over the counter antihistamines or antidepressants. Don’t stop them, but see whether better substitutes may be available.

Question: I have intense night sweats at age 69 which of course are worse now than before my lumpectomy. What do you suggest? I am sleep deprived which makes intimacy a challenge.

Dr. Nakisbendi: Sleep is essential to health and well-being. When it gets disrupted, we feel horrible.

Perhaps your night sweats are worse due to chemotherapy and/or hormone therapies such as aromatase inhibitors or tamoxifen? Breast surgery alone usually would not increase your hot flashes. If you haven’t received any of these treatments, please check with your doctor to make sure your blood work is normal, particularly for your thyroid.

There are many things you can do to manage menopausal night sweats. Night sweats are worsened by alcohol, spicy foods, stress and caffeine. Exercise, eating healthy regular meals throughout the day and stress reduction techniques like meditation can reduce the number and intensity of night sweats. I have found that acupuncture can help with menopausal symptoms.

If you are still having difficulty, your doctor can discuss other options such as sleep aids or non-hormonal medications that reduce hot flashes. When you get enough restful sleep, intimacy won’t be so challenging.

Question: I started tamoxifen in January and have noticed a change in my ability to orgasm. What can I do? Breast cancer is upsetting enough.

 Dr. Nakisbendi: Tamoxifen may be affecting your ability to orgasm due to the vaginal changes it causes. Some women notice dryness and pain. It may be that your body now requires more stimulation than it did before.

Try different styles of vibrators and see whether that helps. Good lubrication is also important for arousal. Remember to utilize your pelvic floor muscles, and contract your pubococcygeus (the muscle you squeeze during a Kegel exercise) rhythmically to encourage blood flow to your genitals. Create arousing fantasies in your head or with your partner, watch sensual movies and/or read erotica.

If you are still struggling, you may need to work with a sex therapist to help find more solutions. Also review other medications you may be taking with your physician to see whether they could be affecting your arousal.

Question: I am 57, [and I] was diagnosed and treated for breast cancer in 2008. Chemo put me into menopause at age 54. Since then, intercourse has become very painful for me …. My OB/GYN suggested vaginal dilators. My husband and I are middle-aged, work opposite shifts, [and] usually one of us works on the weekend also ….. We don’t often have the leisure and energy for sex, but [we] snuggle regularly. The dilators seem like a big daily effort out of proportion to the lack of frequency of our sexual intimacy. We value it so much when we attempt lovemaking, but I find it both frustrating and upsetting. Do you have any other suggestions?

 Dr. Nakisbendi: It is wonderful that you and your husband are staying connected through all the stressors in your lives. Painful intercourse can be very discouraging, and it is usually due to a lack of estrogen in the vaginal tissue which makes it dryer and less elastic. Sometimes the pelvic floor muscles can go into spasm when you have had vaginal pain or if you have any issues with your lower back or pelvic alignment.

Start using a vaginal moisturizer such as Replens twice weekly. After a few weeks, you can start to use the smallest dilator. Apply a lot of lubricant to the tip of the dilator. Laying on your back, insert it very slowly into the vagina and keep it there for 20 minutes twice a week. Once the dilator is easy to insert without pain after two weeks, you can progress to the next dilator.

Using the dilators every day is a lot of work. Start with using them twice a week for 20 minutes each time. You can slowly progress through each size and then attempt penetration with your husband.

You and your husband could also experiment with a narrow vibrator that can be used vaginally. Remember to use lots of lubrication. If a lot of your pain is at the vaginal opening, see if your physician can prescribe something topically to reduce the pain such as compounded 5 percent lidocaine ointment. There are also other solutions your doctor can discuss with you.

Question: I have had breast cancer three times. My husband was supportive and a lifesaver for me throughout. After completing treatment for my second recurrence, I lost all interest in sex and have not been able to re-instigate any interest. We are physically affectionate and emotionally close, but I feel no physical response or interest in sex. What can I do to feel something again or re-start my interest?

 Dr. Nakisbendi: The treatments you have undergone make it difficult to have a natural sexual desire and response, but it isn’t impossible. We have to remember that even someone who is paralyzed can experience an orgasm; it just takes more work. The extra work may feel like too much, but it is worth it. Feeling emotionally close and being physically affectionate with your husband are integral to reconnecting sexually.

There are certain things you can do for yourself that will help your body respond: getting enough quality sleep, exercising and eating well. Exercise increases blood flow to your genitals which helps with arousal. Find fun new activities you can do together like dancing or cycling.

Take time to just give each other massages. Buy sensual oils. Experience the pleasure of just being touched in a relaxing way without any pressure to do more, then gradually progress to stimulating each other’s genitals. 

Don’t think or worry about not getting aroused or not reaching orgasm; just experience the pleasant sensations in your body. Incorporate a body massager into your massages. Discuss with your husband the need for more stimulation, and see whether watching a sensual movie together or experimenting with different sexual aids is comfortable. Try to have fun with it and just enjoy the experience.

If you aren’t progressing, seek out a sex therapist who can give you home exercises that help awaken sexual interest.

Question: If you had a complete hysterectomy, do you need to have a yearly exam with a gynecologist?

Dr. Nakisbendi: In general, it is a good idea to have a yearly gynecologic exam. It doesn’t necessarily have to be with a gynecologist; some internists or family practitioners can do this for you along with a breast exam.

You most likely don’t need a PAP smear, but the pelvic exam is still important in detecting cancer of the vulva or vagina. Also, gynecologists may be able to help address some of the issues that may arise from your breast cancer treatments or from normal menopausal changes.

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