“Let’s talk about sex, baby
Let’s talk about you and me
Let’s talk about all the good things
And the bad things that may be
Let’s talk about sex” - Lyrics by Salt ‘n’ Pepa
So we’ve been talking about sex, intimacy, sexual dysfunction, and multiple sclerosis here at MS HealthCentral. For such a challenging topic, the response has been very positive. I highly recommend that you start with the ï¬rst post, read through the series, and add your comments and suggestions. Thanks in advance.
In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.
“There may be issues around intimacy related to issues such as spasticity, weakness, pain or other physical symptoms,” says Brian Hutchinson, PT, MSCS, CEO of The Huega Center for Multiple Sclerosis in Colorado. “It is important to talk about these issues with your health care provider and your partner. Many times, managing the symptoms may decrease the barriers to sex. Another signiï¬cant issue may be fatigue. In the case of fatigue being the barrier to intimacy, energy conservation techniques are crucial which includes planning and taking advantage of times of the day when you have more energy. Managing symptoms along with good communication are imperative.”
It is a good idea to be open and honest with your doctor. Discuss the physical problems and symptoms you are experiencing and any medications you are taking. If you are not comfortable talking to your current physician about these topics, you may want to ï¬nd one you feel more at ease with or who specializes in sexual or intimacy-related issues.
“I think MS, especially for women who are diagnosed, can affect your psyche,” says Mimi Mosher, who, through the National Multiple Sclerosis Society, offers intimacy guidance to patients. “Many women, at times, feel unattractive and experience mobility issues and various symptoms of the disease that hurt their self-conï¬dence. First and foremost you really need to restructure who you are and become comfortable in your own skin before you can start to address intimacy and relationship-related issues.”
The Four-Point Strategy to Maintain a Satisfying Sex Life is presented by Mimi Mosher, an MS patient who helps other patients.
1. Self-conï¬dence is key. MS and mobility loss can cause feelings of inadequacy and embarrassment that must be overcome for partners to remain intimate. Couples should discuss all issues associated with sex openly-perhaps in conjunction with a therapist.
2. When it comes to sex, it’s not the destination that counts-it’s the journey. When someone loses the ability to move freely, the mechanics of sex invariably must change. Traditional approaches to intimacy may be uncomfortable or impossible. Understanding limits and using experimentation are essential. To continue to be intimate, focus more on the process of physical intimacy rather than the end result. This mindset helps to minimize performance anxieties and demonstrates how to continue to enjoy intimacy.
3. Make a Shopping List. Routinely talk to your doctor about products that could help improve sex. Individually or together, couples should speak candidly with a doctor about options that can enhance sexual fulï¬llment at any stage of disease progression. You can also get great ideas from different online resources including chat rooms.
4. Practice makes perfect, and don’t be afraid if some ideas don’t work. As health changes, it is essential to continually experiment and reï¬ne technique to remain intimate. When one idea does not work, learn from the experience and try another.
It is widely known that for men who have difï¬culty maintaining an erection there are medications available, such as Viagra, Cialis, and Levitra. Also available are vacuum pumps which draw blood into the penis used with an elastic band placed at the base of the penis to help maintain the erection. Many designs are available at adult toy stores.
A tool new to me is the masturbation sleeve for men which enables a person to get a better grip on the penis with their hands. For those of us with arthritis or muscle contractures of the hands, this might be ideal. The sleeve could be used alone or with your partner for shared pleasure. One thing that I noted when reading various message boards was that women who have difï¬culty with sex still want to please their men and the use of a penis sleeve would add an alternative to intercourse.
For women who have sensory issues such as pain during intercourse, there are desensitization products which may be found helpful. Originally made for men to slow down their ejaculation by slightly numbing the penis, they can also be used safely on women. The main ingredient for these products is typically benzocaine which is the case with the Play™ Longer lubricant from Durex.
For women who have difï¬culty with maintaining natural lubrication, and for those who suffer from lack of sensation, there are many products (gels and oils) on the market to assist. Please know that at any age difï¬culty with lubrication does not make you less of a woman, but water-based lubricants can revive your sex life. Products are available even in your grocery store, including ones from Astroglide® and K-Y® Brand.
Any discussion of sex toys is incomplete without the mention of vibrators which come in a seemingly unlimited variety of shapes, materials, and actions. A popular vibrator design discussed on one MS message board I consulted was the Silver Bullet, another being the Rabbit. And for women who need a little extra jump start in plumping up the genital area, there are also clitoral pumps which work on the same basic principle as penis pumps. A less technical strategy would be gentle tapping (not quite slapping) of the pubic area and I even read one recommendation to apply a frozen gel pack to the clitoral area for increased stimulation.
Use of these tools would be extremely helpful for women and couples who, due to decreased sensation, require additional stimulation to achieve a satisfactory level of enjoyment. They could be used strategically to balance sexual energies between partners who require a different amount of stimulation before penetration, or in place of intercourse. A wide variety of adult toys and videos can be found at websites such as Xandria®, BetterSex®, MyPleasure® and EdenFantasys®.
For individuals who experience bladder or bowel incontinence, communication and understanding is absolutely necessary between partners. It can be terribly embarrassing to urinate on your partner during or after sex. However, catheters can be secured during sex (ask your neurologist or urologist for suggestions), patients can self-cath or void before sexual activity, and towels can be used to protect furniture and sheets.
Spasticity is a common symptom of multiple sclerosis, but one which can be worsened by orgasm making it a painful, not pleasurable, event. Massage before sex can help reduce the occurrence of spasm and can be a wonderful path to increased intimacy. If you take medication for spasms, consider taking a dose one hour before sexual activity. When these measures do not help, it is important to experiment with different positions to ï¬nd one which has the least negative effect.
There are a number of swings, slings, and pillows available to adjust position. In fact, there is furniture designed speciï¬cally for ease of positioning and support. Check out the shapes and furniture pieces available at Liberator® Bedroom Adventure Gear. They also sell a unique soft/satin throw which has an inner moisture barrier to protect surfaces. Even better, it is machine washable.
Please keep in mind that intimacy and sexuality DO NOT require intercourse nor orgasm to be shared. It is often the journey which is satisfying rather than an imposed goal. I’ll leave you with one more recommendation which came from an MS patient on a message board. It picks up where the individual Body Mapping leaves off.
“For all of you that are having difï¬culties…try this exercise…it revs up the engines so to speak. Stand facing each other naked. In order to rev the mental and physical energies needed… do not touch your partner… take turns almost touching each other… your hand about an inch way from your partner’s ï¬‚esh… The warmth of the other being’s body almost touching you will allow your body to start reacting and yearning… The longer you can go with just feeling the other person’s energy… the more you allow the biology of it all to kick in… trust me it works…” - from an anonymous MS patient
Finally, remember that the largest sexual organ is the brain. Keep a sense of humor and open communication with your partner. Discuss sexual difï¬culties with your physician even if he/she doesn’t ask. Maintain intimacy in your relationship and know that love transcends physical limitations.
Please add other tips or tools which you recommend in the comment section below.
SOURCE: Scott, Tom. Intimacy and Multiple Sclerosis—A Four-Point Strategy to Maintain a Satisfying Sex Life. United Spinal Association: MS Scene. (published online June 19, 2009)
How to Manage MS-Related Sexual Dysfunction Series:
Part One: Understanding How MS Can Affect Sexual Function
Part Two: Primary Sexual Dysfunction in Men with MS
Part Three: Primary Sexual Dysfunction in Women with MS
Part Four: Secondary Sexual Dysfunction in Men and Women
Part Five: Sexuality, Intimacy, and Multiple Sclerosis
Part Six: Multiple Sclerosis: Sex Toys, Tips, and Tools
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.