MS and Sex
Living with MS
Six months after her daughter was born, Kimberly stopped nursing, and soon went completely numb on the left side of her body. An MRI uncovered that she had 8 lesions on her brain, which she says led to a quick diagnosis of MS. While her MS has been in remission for 12 years, her prognosis could change at any time.
Despite her remission, Kimberly tells us that situations exist that can still trigger MS symptoms. She informs us that many people with MS have trouble with heat which affects her sight. Difficulty swallowing and walking and feeling a tingling along her body are also common, she explains, especially in the heat. At a psychological level, Kimberly reports that people with MS have to live with a great deal of the unknown, as they can’t guarantee their level of functioning from day to day.
Listen to “131: MS and Sex – Kimberly Castelo” on Spreaker.
Support for the Newly Diagnosed
Kimberly tells us that many support groups exist for people newly diagnosed with MS, some of which can be found in the Resources section of these show notes. She recalls when she was first diagnosed, she thought MS was a death sentence, which she now knows is incorrect. However, she counters that while MS doesn’t kill, it does hinder functionality, which she found devastating enough to trigger all the classic stages of grief. She attributes her acceptance of MS and her emotional recovery to the love and support of her partner.
Difficulties with Sex in MS
Ms. Castelo points out that many people with MS are depressed, which leads to wide usage of libido-lowering SSRIs. Even without SSRIs to reduce sex drive, Kimberly informs us that 85% of women and 90% of men with MS suffer from sexual dysfunction.
For both genders, Kimberly tells us about spasticity issues, generalized pain, and difficulty moving legs that can impede sexual function. Kimberly says that another common problem is that MS affects the bowels, causing some people to lose bowel control during sex.
She warns that people with MS can fall into having obligatory sex to please their partners, which she describes as incredibly damaging. She believes that sex should prioritize both you and your partner’s satisfaction, never just one person’s.
Kimberly explains that the partners of MS patients can suffer too. Many partners become caregivers, and amongst partners who become caregivers, switching hats to make sex possible can be difficult, especially when their partner needs a lot of care. Kimberly encourages caregiving partners to compartmentalize moments and force themselves to have fun and playful events as well as their required caretaking.
Another problem amongst caregivers that Kimberly sees in her practice is that people operating as caregivers often don’t share their own struggles. In those cases, she reminds caregiver partners that humans enjoy helping each other, and by not sharing their struggles, they are depriving their partners of that joy and intimacy. Helping partners with problems, she asserts, is also empowering to the partner with MS, because they are given the opportunity to be a caregiver as well.
Improving Sex with MS
Kimberly says that for people partnered with someone who has MS, it’s important to allow space for grief before they can begin problem-solving. After the grieving gives way to acceptance, she states that couples may be surprised to discover that sex with MS can create phenomenal sexual connections due to the incentive MS creates to explore new avenues of sexuality. It can even raise the quantity of playful erotic moments in peoples lives.
She describes her concept of daily erotic moments as simmering with her clients. Just like making a soup, she suggests that first, you get things started, then it starts to smell good, then better, and in the end, it’s so amazing that you have to eat the stew. She mentions that having multiple sexually intimate moments throughout the day can produce an identical effect.
Expanding the Meaning of Sex
Kimberly suggests expanding the definition of sex is important. She says it’s not just about genitals touching genitals. She says it’s about flirting, touch, cuddling, holding hands, passionate kisses, and learning to bring those acts to a level that facilitates deep pleasure and connection in both people. She teaches that slowing down sex to accentuate and be more mindful about each action increases the eroticism of life. She insists that sex can’t just be about genital-to-genital contact and orgasms.
Sex Therapists and MS
When you’re figuring out how to plan sex and keep it romantic, when is a good time to have sex to avoid fatigue, and how to get involved in sex in the first place, Kimberly says a sex therapist can help. She also suggests that sex therapists can help MS patients and their partners figure out how to really connect emotionally and share their sexual challenges with each other. She says sex therapists can help couples plan sex around the best times of day to avoid the crushing fatigue of MS. Despite popular conceptions that sex should be spontaneous, Kimberly says people with MS in particular need to schedule sex sessions.
She also warns that it can be difficult to cope with partners about the changing, day-to-day pains that people can feel with MS, but therapists can encourage communication, creativity, and being mindful and appreciative of sexual actions that don’t involve intercourse.
Kimberly Castelo is a Licensed Marriage and Family Therapist, a Certificated AASECT Sex Therapist, and a Certified ETF Couples Therapist. As a Certified Integrated Intimacy Professional, she believes in treating mental health in a holistic way, exploring individuals, couples, family systems, sexual health, medical issues, and spirituality to create a full picture of her clients’ lives and resources. As a woman who’s lived with MS for 13 years, Kimberly intimately understands how medical maladies can influence the mental health of families and individuals. This experience combines with her training to provide invaluable insight into relationships and sex.
Resources for Kimberly Castelo:
Dr. McKenzie explains both sexes produce testosterone however it’s much more prevalent and important in men. Serena informs us that puberty is driven primarily by testosterone. She notes that testosterone production increases exponentially in men during puberty, peaks around age 30, and subsequently declines. From driving growth and facilitating sexual function to retaining bone density and cognitive function, Dr McKenzie describes testosterone as a hormone with lifelong importance in men’s health.
Listen to “125: Testosterone – Dr. Serena McKenzie” on Spreaker.
Causes of Low Testosterone
Serena tells us the most direct cause of low testosterone, clinically diagnosed as testicular hypogonadism, occurs when the pituitary gland produces insufficient hormones to trigger adequate testosterone production. But she explains that many cases of low testosterone are caused by obesity, diabetes, insomnia, sleep apnoea, a sedentary lifestyle, smoking, excessive alcohol consumption, and other varieties of poor self-care. She also mentions that many clinicians understand lower testosterone levels as a natural result of aging, and not as a condition requiring treatment.
Symptoms of Low Testosterone
Dr. McKenzie admits that most of her patients present with sexual dysfunction. She often finds problems such as low libido, trouble gaining or sustaining an erection, fatigue or depression. One symptom she describes that points directly to hypogonadism is a measurable decrease in testicular size. She mentions the loss of non-sexual erections as indicative of low testosterone. She points out that these symptoms can also be caused by vascular disease or pituitary dysfunction, but she reassures us that true cases of testosterone dysfunction can be diagnosed fairly easily by physicians.
Low is Low?
To diagnose hypogonadism, Serena explains that labs look for reproducible testosterone levels below 300 or 350. The doctor explains that testosterone levels vary from day to day and hour to hour, which is why testing a man’s testosterone more than once is necessary for a correct diagnosis. She admits that some practitioners will skip this second test, which can lead to inappropriate diagnoses. She explains that most men should have testosterone levels between 200 and 900 for full sexual health, but the exact levels vary for different individuals.
Treating Low Testosterone
Dr. McKenzie believes that it’s important to assess lifestyle variables and consider alternative treatments like testosterone stimulation before rushing into testosterone replacement. For many men, correcting poor self-care, addressing relationship problems, and learning to foster romance in their relationships can solve their sexual and energy complaints. She remarks that these treatments are especially useful for younger men because hormone replacement shuts off the body’s natural ability to produce testosterone, which can prevent men from fathering children or require lifelong testosterone supplementation after treatment.
But for men with primary testicular failure or pituitary dysfunction, Dr. McKenzie acknowledges that testosterone treatments will be a necessity for the rest of their lives. Men whose testicular tissue has been damaged by chemotherapy or alcohol abuse may also need continual testosterone treatments to maintain sexual function.
Serena describes a market that has produces 15 to 20 different methods of administering testosterone for patients, including injected doses of testosterone, injectable pellets, transdermal gels, sprays, and pills, but she says insurance usually decides the form of treatment.
Risks of Different Treatment Types
Dr McKenzie prescribes transdermal gels and lotions most often. For those, she warns that it’s important for men to wash their hands after application and for them to allow the gel or cream to dry after application, otherwise accidental transmission of testosterone to partners or pets may occur.
She implies that most other methods are even safer, though high-dose injectable varieties of testosterone have been shown in some studies to increase the risk of blood clots, making heart disease important for prescribers to consider.
Testosterone Abuse and Misuse
Serena believes that testosterone is a wonderful substance, but she recommends it only be used with a clinician’s oversight. Because of testosterone’s ready availability online, she meets many men who buy themselves testosterone and are puzzled by the substance’s tendency to reduce, rather than increase, libido in healthy men.
Producing Testosterone Again
For men who don’t need lifetime testosterone treatment, Dr. McKenzie explains that results vary when treatment is discontinued. She says that some men—usually those who did not require treatment—produce adequate levels of testosterone immediately after treatment stops. Other men must wait for three to six months for their testicles to resume testosterone production, a time period that she warns can cause men to feel the depression, fatigue, and other symptoms associated with low levels of testosterone. She says that people who recover more slowly may require testosterone stimulating therapies to regain sexual function or fertility treatments if they intend to conceive a child. She also warns that a few men never regain their fertility or sexual function after undergoing testosterone treatments.
Finding Treatment for Sexual Dysfunction
Dr. McKenzie admits that medical treatment for sexual problems can be difficult to find. She describes some doctors as being disinterested in hearing about their patients’ low libido and sexual problems.
To meet the needs of this under-treated population, Serena tells us that pop-up sexual health clinics began to appear. Because pop-up clinics often provide inadequate or inappropriate treatment, she explains that more clinicians began to understand the need to provide sexual health services to their patients. Thanks to these changes, Serena shares the encouraging news that getting medical help for sexual problems is becoming easier every day.
A healthcare worker since 1992, Dr. Serena McKenzie is an evidence-based, holistic primary care physician with expertise in sexual medicine, healthy aging, and the pelvic floor. She is certified as a sexual medicine fellow (IF) through the International Society for Women’s Sexual Health (ISSWSH), as a nationally certified Menopause Practitioner (NCMP) through the North American Menopause Society (NAMS), and as a sex counselor through the American Association of Sex Educators and Therapists (AASECT). Using a multi-disciplinary approach that assesses her patients holistically, Dr. McKenzie helps her patients treat sexual dysfunction at every stage in life.
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You are not broken
I get back on my soapbox this week to talk about something I think is important. So many people feel broken or like something is wrong with them when they struggle with sex, but this is not true.
My guest is Dr. Kelifern Pomeranz. She is a licensed clinical psychiatrist, a sex therapist, and an overall expert on arousal disorders and more. She has a practice in Silicon Valley and is here to talk about erections: in particular, how to have healthy erections, what to do if you are having problems getting them, and various strategies for a healthy functioning penis.